This is the start of a busy week and the kickoff to the Christmas season so alot is on our plate in the weeks ahead but I wanted to stop by and share what a nice weekend our family had. These are the times I feel blessed. My husband cooked a Thanksgiving feast, the kids had a wonderful time at my in-laws, I rested and everyone was just so calm and happy. Friday was a fun get together with some old classmates, a sort of pseudo reunion if you will. I was terrified. I have never been one to get nervous but since I have been ill, public outings with anyone other than my nearest and dearest is an extremely frightening venture. I have to worry if my face muscles will go out and freak everyone out. I have to worry if my mouth muscles will go out and I start to slur and drool (really appealing, let me tell ya!) Will my legs work or will someone have to help me walk, I didn't bring my walker, talk about a conversation piece that I don't want to have!
Thankfully, the myasthenia stayed at bay. Now the next morning I paid for it dearly but Friday night I looked perfectly normal, mission accomplished. Saturday I couldn't speak for the first 5 hours of the day due to talking too much the night before. I had to use the walker all day, my ankles just wouldn't work. And double vision all day long.
Those of you who battle "invisible disabilities" know what I am talking about. Those of you do not hopefully have some insight on what we go through and why we are unable to attend every event even though when you see us we "look so good" It takes days of preparation and rest to "look good" followed by days of looking like hell where we hide from the civilized universe:)
I think that is enough for today. This week brings my phyisical, the kid's chest echos (to make sure they didn't inherit my heart defect), band concerts, basketball games, can I come up for air now???
Blessings to you and yours,
Jen
Monday, November 29, 2010
Friday, November 19, 2010
Never a dull moment
Well my spirit is strong but my body is weak and so it goes with myasthenia. I saw my neurologist on Tuesday and a few changes have been made. First, he has decided to continue treating me with the IVIG but at 1/2 the dose as I seem to tolerate that much better. I was worried he would want to change me to plasmapherisis but given I have such bad veins and a congenital heart defect the IVIG seems to be the way to go. I was worried it wasn't working as well but he said that the fact I went so long with the reaction to the port stitches and only ended up in the hospital after I reacted to the Claritin, it was a good sign that it is doing as much as we can hope for at this time.
Also, the cyclosporine finally started showing up in the blood labs....hooray!!! This means I don't have to move to another major immunosuppressant but I am still not functionally where he would like to see me so he increased my dosage again. This is never fun because the first 2-3 weeks I have severe nausea and stomach cramping not to mention a need to visit the restroom every hour throughout the day. Hopefully that will taper off as I get use to the dosage.
We also broached the subject of having a thymectomy again. I am hesitant as it is major surgery but am getting closer to surrendering in the hopes that it will work and make me stronger. The evidence is not great in that 75% of patients do not see an improvement but I agreed to have a consult with the thoracic surgeon to weigh out the pros and cons. Please keep me in your thoughts and prayers as this is a major decision for me and my family.
Lastly I found out that my labs have been off for the past few weeks. My red blood cell count, my hematocrit, and my hemoglobin are all low and keep dropping. If my hemoglobin stays low the neurologist said a blood transfusion may be needed. At this point I welcome it as I have been so tired and even weaker than normal lately and it is supposed to really give you a boost.
So that is about it, I know it is alot of information but it was a productive appointment. I continue to have to use the walker daily and my vision is constantly affected by this beast of a disease. On good days I have no depth perception, on bad days I have double vision. They say this is the one symptom that tends to not go away with medication. I was lucky in the beginnning but I think the myasthenia is winning the battle in that regard. I will continue to do my physical therapy which consists of trying to strengthen my diaphragm, wrists, and ankles. The recent flare up set me back quite a bit in regards to overall weakness but I am hopeful that I will start to see some improvement soon.
Ta Ta for now and happy Friday!
Jen
Also, the cyclosporine finally started showing up in the blood labs....hooray!!! This means I don't have to move to another major immunosuppressant but I am still not functionally where he would like to see me so he increased my dosage again. This is never fun because the first 2-3 weeks I have severe nausea and stomach cramping not to mention a need to visit the restroom every hour throughout the day. Hopefully that will taper off as I get use to the dosage.
We also broached the subject of having a thymectomy again. I am hesitant as it is major surgery but am getting closer to surrendering in the hopes that it will work and make me stronger. The evidence is not great in that 75% of patients do not see an improvement but I agreed to have a consult with the thoracic surgeon to weigh out the pros and cons. Please keep me in your thoughts and prayers as this is a major decision for me and my family.
Lastly I found out that my labs have been off for the past few weeks. My red blood cell count, my hematocrit, and my hemoglobin are all low and keep dropping. If my hemoglobin stays low the neurologist said a blood transfusion may be needed. At this point I welcome it as I have been so tired and even weaker than normal lately and it is supposed to really give you a boost.
So that is about it, I know it is alot of information but it was a productive appointment. I continue to have to use the walker daily and my vision is constantly affected by this beast of a disease. On good days I have no depth perception, on bad days I have double vision. They say this is the one symptom that tends to not go away with medication. I was lucky in the beginnning but I think the myasthenia is winning the battle in that regard. I will continue to do my physical therapy which consists of trying to strengthen my diaphragm, wrists, and ankles. The recent flare up set me back quite a bit in regards to overall weakness but I am hopeful that I will start to see some improvement soon.
Ta Ta for now and happy Friday!
Jen
Monday, November 8, 2010
A busy week ahead
So you would think that the week after being in the hospital would be filled with rest and a bit of charging up the bodies batteries. However that is not the case. Today's agenda: Call the port surgeon to let him know that not only did the claritin not work, I am not able to take it again. I have already accomplished this task, he was very kind and said it sounds like I am allergic to the vicryl sutures but he recommends that we leave them in as they should be all the way dissolved soon. I said I can live with that, I don't want to rock the boat and end up back in the ER. Next, I have my appointment with my pulmonologist. Hopefully he will have some tips on monitoring my diaphragm strength at home. Then I am off to the MG meeting to be on the patient panel, I am really excited about this. I just pray that I am strong enough to make it through.
Tomorrow I have physical therapy, we have been very conservative so far but it is do or die time as I cannot afford to have my leg/ankle muscles atrophy any further. Here's hoping to a good plan of action. Wednesday is my day of rest. Thursday the kids have back to back physicals and Friday I get my IVIG..bye, bye week.
I am feeling pretty good today. The weekend was rough. I take my mestinon every 2 hours now and at 1hr 45 minutes, like clockwork my eyes and legs would conk out on me. Today has been better though so I am hoping I am on the mend. I will keep you posted.
Jen
Tomorrow I have physical therapy, we have been very conservative so far but it is do or die time as I cannot afford to have my leg/ankle muscles atrophy any further. Here's hoping to a good plan of action. Wednesday is my day of rest. Thursday the kids have back to back physicals and Friday I get my IVIG..bye, bye week.
I am feeling pretty good today. The weekend was rough. I take my mestinon every 2 hours now and at 1hr 45 minutes, like clockwork my eyes and legs would conk out on me. Today has been better though so I am hoping I am on the mend. I will keep you posted.
Jen
Friday, November 5, 2010
Another hospital stay, urgh!
Well, I managed to stay out of Club Med for 9 whole months. I had gotten pretty used to dealing with my illness at home with my weekly IVIG. Sure I have had daily symptoms of weakness and vision issues that are a bother but I was getting used to managing my new life. Unfortunately the beast had other plans and a myasthenic crisis decended upon me on Monday.
For those of you who don't know, a Myasthenic Crisis is when the illness affects the muscles involved in swallowing and breathing. I have had three of these since my illness began, scary stuff when you can't communicate to the doctors what is going on but I will start at the beginning.
As you know, in September I had a port put in for my weekly infusions. It has worked wonders in not having to get jabbed multiple times trying to find a vein that will work with the IV but the incision never stopped itching and has been red the entire time. Not hot or oozing, just red. Last week my IVIG nurse said I should really let the surgeon know about the itching and redness so Monday morning I went in and showed the nurse what it looked/felt like. She spoke with the doctor and they said I should take Claritin for 7 days and call if it got worse or if after 7 days it didn't improve.
40 minutes after taking the Claritin, which I have never taken before, I couldn't open my eyes, lift my arms, or speak/breathe very well. My husband put a mestinon under my tongue and the weakness slightly subsided. An hour and a half later I was in dire straits, any attempt at breathing resulted in an awful sound and I was like a wet noodle. My hubby put me on my walker and wheeled me out to the car and rushed me to the ER. He explained what was going on and they rushed me back and gave me IV prednisone and ordered a NIF test (this tests the strength of the diaphragm muscle). The prednisone helped quite a bit and my NIF score was 20. Anything under 20 and they ventilate you and put you in the ICU which I never wish to experience so I was teetering. They admitted me to the hospital and ordered three days of IVIG and observation.
By day two my NIF was up to 25 and day three it was up to 30, then it went back down to 22, and then back up to 25. I was able to convince them to release me and let me have the 3rd day of treatment at home. I missed my kids and husband and my own bed and sleeping without people waking me up all the time blah, blah, blah.
So now I am resting and recovering. The best guess is that I was having an allergic reaction to the stitches under the skin and that the Claritin didn't agree with the MG and that pushed me into a crisis. So, no more claritin for me, I can deal with the itching until the stitches dissolve though I have no idea how long that will take:)
A few notes for those of you who haven't been admitted for a crisis/exacerbation. Make sure you have a binder/folder with a list of all of your medications, your neurologist's contact information, any test results from prior issues, any allergies or sensitivities, and a durable medical power of attorney so if you get ventilated you have someone who can speak for you. I also recommend requesting that you are able to self medicate your mestinon. I take mine every two hours and if it is late it is bad news, for the nurses about 80% of medications can wait 15 - 30 minutes without making the patient very sick but that isn't the case with myasthenics and mestinon so if you are strong enough make sure to insist this. Also pay close attention to the other meds they are giving you. Two of mine were incorrect. One they wanted to give me two extended release tablets of a med that I take 2 times a day and that would have resulted in an overdose. The other was the calcium I take. I take 500mg of calcium 3 times a day and they sent up Tums. While tums has calcium, the antacid part coats the stomach blocking the absorption of my much needed meds.
I hope this helps someone. For now, I rest and recharge. Stay strong.
Jen
For those of you who don't know, a Myasthenic Crisis is when the illness affects the muscles involved in swallowing and breathing. I have had three of these since my illness began, scary stuff when you can't communicate to the doctors what is going on but I will start at the beginning.
As you know, in September I had a port put in for my weekly infusions. It has worked wonders in not having to get jabbed multiple times trying to find a vein that will work with the IV but the incision never stopped itching and has been red the entire time. Not hot or oozing, just red. Last week my IVIG nurse said I should really let the surgeon know about the itching and redness so Monday morning I went in and showed the nurse what it looked/felt like. She spoke with the doctor and they said I should take Claritin for 7 days and call if it got worse or if after 7 days it didn't improve.
40 minutes after taking the Claritin, which I have never taken before, I couldn't open my eyes, lift my arms, or speak/breathe very well. My husband put a mestinon under my tongue and the weakness slightly subsided. An hour and a half later I was in dire straits, any attempt at breathing resulted in an awful sound and I was like a wet noodle. My hubby put me on my walker and wheeled me out to the car and rushed me to the ER. He explained what was going on and they rushed me back and gave me IV prednisone and ordered a NIF test (this tests the strength of the diaphragm muscle). The prednisone helped quite a bit and my NIF score was 20. Anything under 20 and they ventilate you and put you in the ICU which I never wish to experience so I was teetering. They admitted me to the hospital and ordered three days of IVIG and observation.
By day two my NIF was up to 25 and day three it was up to 30, then it went back down to 22, and then back up to 25. I was able to convince them to release me and let me have the 3rd day of treatment at home. I missed my kids and husband and my own bed and sleeping without people waking me up all the time blah, blah, blah.
So now I am resting and recovering. The best guess is that I was having an allergic reaction to the stitches under the skin and that the Claritin didn't agree with the MG and that pushed me into a crisis. So, no more claritin for me, I can deal with the itching until the stitches dissolve though I have no idea how long that will take:)
A few notes for those of you who haven't been admitted for a crisis/exacerbation. Make sure you have a binder/folder with a list of all of your medications, your neurologist's contact information, any test results from prior issues, any allergies or sensitivities, and a durable medical power of attorney so if you get ventilated you have someone who can speak for you. I also recommend requesting that you are able to self medicate your mestinon. I take mine every two hours and if it is late it is bad news, for the nurses about 80% of medications can wait 15 - 30 minutes without making the patient very sick but that isn't the case with myasthenics and mestinon so if you are strong enough make sure to insist this. Also pay close attention to the other meds they are giving you. Two of mine were incorrect. One they wanted to give me two extended release tablets of a med that I take 2 times a day and that would have resulted in an overdose. The other was the calcium I take. I take 500mg of calcium 3 times a day and they sent up Tums. While tums has calcium, the antacid part coats the stomach blocking the absorption of my much needed meds.
I hope this helps someone. For now, I rest and recharge. Stay strong.
Jen
Monday, October 18, 2010
The flu and MG...yuck!
Well, the flu bug descended upon our home two weeks ago. Let me tell you, caring for two sick kids, and catching the bug, and having MG is not a good combo. It started with my 10 year old son, he has asthma and always catches something nasty in the fall. I quarantined him to his room and busted out the bleach wipes, things were going well for the first few days and then my 4 year old caught it. She can't resist touching everything so inevitably I came down with it as well. Everyone was given antibiotics and I managed to pretty much keep it out of my lungs but it took me down pretty hard. I am happy to report that everyone is feeling much better this week though.
On the sewing front, I have successfully made two pillows, one for my son and one for my daughter. The machine is in need of repair so my next project is on hold until we can figure out why the zig-zag function isn't working, once that is squared away I will make a mommy and daughter matching apron set...fun, fun, fun!
I also started my physical therapy. I know it will work well, but yeowch! I am trying to build up my muscles that have atrophied and strengthen the supporting muscles in my spine that cause me daily pain. I will report more on my progress in the next post.
I hope you are all well, autumn is upon us, the leaves are beautiful (as long as they remain on the trees:)). Until next time...
Jen
On the sewing front, I have successfully made two pillows, one for my son and one for my daughter. The machine is in need of repair so my next project is on hold until we can figure out why the zig-zag function isn't working, once that is squared away I will make a mommy and daughter matching apron set...fun, fun, fun!
I also started my physical therapy. I know it will work well, but yeowch! I am trying to build up my muscles that have atrophied and strengthen the supporting muscles in my spine that cause me daily pain. I will report more on my progress in the next post.
I hope you are all well, autumn is upon us, the leaves are beautiful (as long as they remain on the trees:)). Until next time...
Jen
Wednesday, October 6, 2010
Report on the Port
Hi all my faithful readers and new friends! I hope today finds you well. I am trying to soak up every last bit of sun before it is gone. I love this weather!!! High 60's to low 70's, the brightest/bluest sky imaginable, bright white puffy clouds...ahhhh. Not too hot, not too cold, and the perfect dose of natural vitamin D.
I wanted to report on the port for those of you considering getting one. Mine has healed up nicely. The treatments are now about an hour shorter because the meds run smooth and steady and there is only one poke. It is perfect and I love it. I always thought ports went out of the skin but I was wrong, it is completely under the skin so no maintenence on my end either...sweet!!!
In other news, I have a confession to make. I cannot sew! I know, what kind of mother am I? I have, however had a sewing machine in my possesion for the last 3 years, it is the old Kenmore type that is built into a table, so I have been using it as a table and the dust on the machine is crazy! But, my IVIG nurse said, hey we are together for 6 hours anyway, want to learn to sew...would I? Yeay!!! I now have a new hobby, and homework:)
That is about it for an update, I hope you all find yourselves well and happy and strong!
Jen
I wanted to report on the port for those of you considering getting one. Mine has healed up nicely. The treatments are now about an hour shorter because the meds run smooth and steady and there is only one poke. It is perfect and I love it. I always thought ports went out of the skin but I was wrong, it is completely under the skin so no maintenence on my end either...sweet!!!
In other news, I have a confession to make. I cannot sew! I know, what kind of mother am I? I have, however had a sewing machine in my possesion for the last 3 years, it is the old Kenmore type that is built into a table, so I have been using it as a table and the dust on the machine is crazy! But, my IVIG nurse said, hey we are together for 6 hours anyway, want to learn to sew...would I? Yeay!!! I now have a new hobby, and homework:)
That is about it for an update, I hope you all find yourselves well and happy and strong!
Jen
Thursday, September 16, 2010
Med changes, job changes, surgery, oh my...
So you were probably all thinking...hmm, Jen has been quiet, she must be feeling great! Well, I was, and then bam, I found out that I was losing my job. The job that I have loved for 3 years, in the field I have specialized in for over 13 years. As you can imagine my stress level went through the roof and my MG did not react well at all. Things will be okay and everything happens for a reason so I will not go into detail here other than to say I am at peace with it and I am reassessing what this means for the future. And on to med changes...
I saw my neuro in late August and he said that I am really not improving at a rate that he would like to see. That was actually good news for me because it means there is hope for more days without symptoms. My average day lately has me with double vision about 50 percent of the time, needing the walker for at least a few hours, and periods of swallowing and speech difficulty. I have also had fatigue greater than I can put to words and pain in my back and neck that does not easily relieve itself. I stretch, I walk, I do deep breathing, I take meds, I am still in pain.
So for the med changes, I am now on double the dose of IVIG every week. Instead of a 4 hour treatment (which I loved because it flew by) I now have a 6 hour treatment every week. Also, my veins just can't take the constant IV's so on Monday I had surgery to have a port placed. The surgery went well but the anesthesia caused a pretty severe MG flare for the next couple of days. Today I feel like I am back to my "normal" weakness level so that is a good thing. My doctor also upped my Cyclosporine dose back to 100mg a day and the stomach issues are back with a vengence..yuck! He said if that continues then we will switch to a different long term immunosuppressant or try Rituximab.
Say some prayers for my poor battered skin. It turns out the more you are exposed to chemicals the greater the chance for an allergic reaction. I am allergic to tape, tegaderm, opsite, and band aids. My skin actually blistered and tore off with the tape removal and I look like a burn victim in spots...not fun on top of everything else.
Other than that, and I know it is alot, I am hanging in there, keeping my spirits up. The family is doing great. School is in full swing so we have been busy with homework and what not. I hope all of my readers are well and enjoying the fresh fall air.
I saw my neuro in late August and he said that I am really not improving at a rate that he would like to see. That was actually good news for me because it means there is hope for more days without symptoms. My average day lately has me with double vision about 50 percent of the time, needing the walker for at least a few hours, and periods of swallowing and speech difficulty. I have also had fatigue greater than I can put to words and pain in my back and neck that does not easily relieve itself. I stretch, I walk, I do deep breathing, I take meds, I am still in pain.
So for the med changes, I am now on double the dose of IVIG every week. Instead of a 4 hour treatment (which I loved because it flew by) I now have a 6 hour treatment every week. Also, my veins just can't take the constant IV's so on Monday I had surgery to have a port placed. The surgery went well but the anesthesia caused a pretty severe MG flare for the next couple of days. Today I feel like I am back to my "normal" weakness level so that is a good thing. My doctor also upped my Cyclosporine dose back to 100mg a day and the stomach issues are back with a vengence..yuck! He said if that continues then we will switch to a different long term immunosuppressant or try Rituximab.
Say some prayers for my poor battered skin. It turns out the more you are exposed to chemicals the greater the chance for an allergic reaction. I am allergic to tape, tegaderm, opsite, and band aids. My skin actually blistered and tore off with the tape removal and I look like a burn victim in spots...not fun on top of everything else.
Other than that, and I know it is alot, I am hanging in there, keeping my spirits up. The family is doing great. School is in full swing so we have been busy with homework and what not. I hope all of my readers are well and enjoying the fresh fall air.
Friday, August 27, 2010
Late July through August...Lovin' Summer
Well, Yes I have been a bad girl. Hopefully the long pre diagnosis post made up for the gap in postings. You see, we feeble humans tend to fixate on what is exciting or devastating and forget about the in betweens yet it is the in betweens that spice up our lives. So I will try to keep posting, I cannot say how often but as often as I am able, to let you know how I am doing and how the spices are treating me:)
Today I received my IVIG. These weekly treatments, along with the change in meds from Imuran to Cyclosporine have really helped my symptoms. The summer has been great! Alot of time with family, reconnecting with old friends that passed through town, and making wonderful new friends through the MG support group, the BiCuspid Valve Foundation, and my blog.
I can't tell you how much it means to me when I hear from readers. These posts and updates are for you. Whether you are newly diagnosed and want to hear what it is like for me and this disease or you are a friend or family member looking for more information. That is the whole reason I created this site...for you! And your feedback has been comforting, rewarding, and fulfilling. For those of you actually going through the illness, the reason I named this site me and MG is due to the fact that while we share a common bond our stories and paths are as different as our fingerprints. Yes we all have fingerprints but the intricacies are all different.
I am happy to report that my disease seems to be easing up quite a bit. With help from a very knowledgable and compassionate team of doctors and the support of family and friends I am starting to feel like Jen again! Yes, I still battle weakness and fatigue but I am learning how to live with this disease. I don't feel so lost and I definitely do not feel alone.
I am sad to see summer come to a close. The busy back to school season is upon us and Halloween stores are cropping up reminding us that the laid back life is coming to a close. The kids are excited to start their new school year and get back in touch with their friends they have missed over the summer. I can't say I will miss the 90 degree weather as that has wreaked havoc on my weakness. I am so happy to be able to open my windows and let the fresh crisp air in the house in the evenings. But I will miss our family gatherings by the pool and dread the thought of snow! Yikes, did I just use the "S" word? Anyway, like I said I will try my best to post more regularly and THANK YOU from the bottom of my heart.
I wish you all well,
Jen
Today I received my IVIG. These weekly treatments, along with the change in meds from Imuran to Cyclosporine have really helped my symptoms. The summer has been great! Alot of time with family, reconnecting with old friends that passed through town, and making wonderful new friends through the MG support group, the BiCuspid Valve Foundation, and my blog.
I can't tell you how much it means to me when I hear from readers. These posts and updates are for you. Whether you are newly diagnosed and want to hear what it is like for me and this disease or you are a friend or family member looking for more information. That is the whole reason I created this site...for you! And your feedback has been comforting, rewarding, and fulfilling. For those of you actually going through the illness, the reason I named this site me and MG is due to the fact that while we share a common bond our stories and paths are as different as our fingerprints. Yes we all have fingerprints but the intricacies are all different.
I am happy to report that my disease seems to be easing up quite a bit. With help from a very knowledgable and compassionate team of doctors and the support of family and friends I am starting to feel like Jen again! Yes, I still battle weakness and fatigue but I am learning how to live with this disease. I don't feel so lost and I definitely do not feel alone.
I am sad to see summer come to a close. The busy back to school season is upon us and Halloween stores are cropping up reminding us that the laid back life is coming to a close. The kids are excited to start their new school year and get back in touch with their friends they have missed over the summer. I can't say I will miss the 90 degree weather as that has wreaked havoc on my weakness. I am so happy to be able to open my windows and let the fresh crisp air in the house in the evenings. But I will miss our family gatherings by the pool and dread the thought of snow! Yikes, did I just use the "S" word? Anyway, like I said I will try my best to post more regularly and THANK YOU from the bottom of my heart.
I wish you all well,
Jen
Wednesday, August 25, 2010
Before the blog...my journey to diagnosis
So, since I have been horribly inactive I thought I would share the full, unadulterated story of what I went through on my journey to diagnosis. Warning - This Post Is Looong! I have to confess, life has been so busy and so crazy lately that I am taking this from an email I communicated to a newly diagnosed contact but it dawned on me that I didn't start my blog until after my January hospital stay so I would post it here...this is my story...
I was delivered the news that I have bicuspid aortic valve disease unexpectedly last June when I was hospitalized for what appeared to be a stroke. While performing all of the tests to see why the left side of my body was not working and the right side of my face was extremely weak (drooping eyelids, slurred speech, drooping mouth) they performed a bunch of scans/CT/MRI/blood tests and... a chest echo. I was discharged from the hospital with a tentative diagnosis of either anxiety due to stress (though I revealed that life was going quite well aside from the fact that I was hospitalized on my 10 year wedding anniversary) or complex migraines (which was funny to me since I have suffered migraines since I was 16 years old and this “stroke” event did not have the vision auras or any head pain…at all that always accompany a migraine).
Two days after my 3 day hospital stay I saw my GP for follow up and found out that they discharged me without even reviewing the echo. To my surprise, out of all the tests run, this was the only one that was abnormal. It showed a Bi-Cuspid Aortic Valve with insufficiency, mitral valve insufficiency, and tricuspid valve insufficiency with evidence of mild pulmonary hypertension. So, off to the cardiologist I went. The cardiologist performed a TEE which confirmed the BAD with
insufficiency but showed only mild mitral and tricuspid insufficiency and no pulmonary hypertension. He said, you are fine and your heart is unrelated to the stroke like event. I had done some research and had many of the symptoms of pulmonary hypertension: fatigue, shortness of breath, and a feeling of pressure on my chest when I did the slightest of activity. In addition to that I had extreme residual weakness of my eyes and my arms/hands and I was determined to get to the bottom of it considering the fact that I have two young children and I am the primary breadwinner while my husband is back in school. I called a friend of mine who is an RN and she said there was a local Pulmonary Hypertension clinic and gave me the number. Two days later I was in the office of the pulmonologist who saved my life, though neither one of us knew it at the time.
My pulmonologist performed a six minute walk test and after 2 minutes my oxygen SATS dropped to 80, they put me on supplemental oxygen for the remainder of the test and they didn’t go above 88. After the test was finished and I was sitting for 5 minutes they shot up to 100%. He took off the oxygen and they stayed at 100% until he had me get up and walk again, then they fell right back down again. So, he said, there is definitely something wrong with you and I promise to get to the bottom of it. I was prescribed oxygen to use anytime I wasn’t sitting in a chair or laying down, but also when sleeping. Then he one by one ordered the million dollar work up. I had a Chest X-Ray, a Chest CT with contrast, a nuclear pulmonary V/Q scan, a whole body V/Q scan, and a right heart cath. All came back normal so thankfully I did not have pulmonary hypertension. Unfortunately we had no answers except
for the fact that I had an oxygenation problem, weakness, and a Bicuspid Aortic Valve. I also found out that my aortic root had enlarged since a prior CT was performed in 2007, but it certainly wasn't causing these problems. After researching this I found out that people with Bicuspid Aortic Valves are born with connective tissue issues that make them more prone to Aortic Aneurysms, like I needed one more thing to deal with!
In the midst of all these tests I went back to the Neuro who saw me at the hospital, after an EEG he decided it must be complex migraines and wanted to put me on a beta blocker. My old doctor tried that on me and it landed me unconscious in the ER with a blood pressure of 70/50. So, you can imagine my dismay at his recommendation. I said, I am happy to try your theory if you would be willing to run some additional tests first. He was so offended that I would not try the beta blockers and that I challenged his diagnosis that he dropped me as a patient. I walked to my GP’s office in tears (they work in the same building) he told me the guy was a pompous “fill in the blank” and not to worry about him, we would figure this out together. Apparently the neuro I saw went to Harvard and thought he was a big
fish in a little pond and had quite the reputation for upsetting or blowing off patients...just my luck.
The next week I was scheduled for a pulmonary function test which was ordered by my pulmonologist. Note this is the least invasive and least expensive all the tests ordered. At any rate, I was alarmed when my pulmonologist called a few nights later to inform me that the test showed diaphragm weakness due to a neuromuscular disorder. He referred me to a different neurology office and said we may be on the
right path. I went to the appointment and after performing the exam the doctor took a step back and said “I think you have Myasthenia Gravis” this was due to the fatigable generalized weakness and the ptosis from the eye strength test. She called in four residents to show them what it looked like and explained that while there is no cure there is treatment, I said sign me up! However, she wanted to
confirm with the blood test. When the blood test came back negative she was very aloof and said, well I don’t know what it is, maybe vasculits or something. When I asked if I could try a trial dose of Mestinon or Prednisone she said no, there is nothing more I can do for you. I later learned, when gathering my medical files that she suspected anorexia. I went from 150 pounds to 125 pounds and shrinking in two weeks and by the time I saw her (almost 2 months after my hospital stay) I was 115 due to the fact that it was extremely difficult for me to swallow! Note that for a woman who is 5’6” 115 is not considered underweight though the rapid rate at which I was wasting away sure scared the heck out of me. Okay, so that was late August.
I spoke with my GP and he referred me to the University of Michigan. He personally called the head neurologist to discuss my case and by early October I was in Ann Arbor and hopeful for some answers. After going through my 3rd neurological exam, my second EMG, my first single fiber EMG, and more blood tests, the head of Neurology diagnosed me with “suspected sero-negative generalized Myasthenia Gravis.” The only thing he was scratching his head at was the rapid rate at which
my oxygen fell with any level of activity but he did start me on
Mestinon (this was later confirmed to definitely be due to the MG but more on that later). My dad had taken me to that appointment and I was so anxious for any type of relief that I made him drive straight to the nearest pharmacy in Ann Arbor. I took my first mestinon and 30 minutes later I did not sound like I had marbles in my mouth and I could read the highway signs. I said, “dad, this is it, they finally
figured me out!” I was ecstatic!
The prescription called for me to take 30mg of Mestinon every 4 hours and titrate up until I had side effects…i.e.I ran to the bathroom with what was second only to the urgency of a colonoscopy prep. That dosage was 60mg every 4 hours and so my journey began. A few weeks later I called U of M because while the Mestinon helped me during the day, after I slept I could not move my arm to turn off the alarm clock
and was so weak that a few times I fell after getting out of bed. I was also starting to feel kind of dizzy. The neurologist prescribed Mestinon Timespan for bedtime so the Mestinon wouldn’t wear off while I slept. It worked like a charm for my morning strength but the dizziness was still there, I felt like I had just stepped off a boat, or had a few too many cocktails.
Four weeks after my tentative diagnosis and med trial I had a follow up scheduled with my pulmonologist and new cardiologist. To my amazement I passed the 6 minute walk test without oxygen…bye, bye oxygen tank! I literally happy danced myself out of the office (albeit weak and out of breath, I didn't care I got to ditch the tank)!They said my diaphragm must have been so fatigued that it caused atelectasis which caused the lack of oxygenation. They said it was a pretty good confirmation of MG. So I got through November until Thanksgiving. I don’t know if I caught a bug or was just doing too much given how good I felt compared to how bad it was for 6 months
but I spent the first week of December hospitalized with a crisis. My breathing was severely affected and so were my legs. I was given 5 days of IVIG at the hospital by the pompous neuro previously mentioned who apologized to me a gazillion times and at discharge I was given a walker and In home nursing care for four weeks. At the
end of the nursing care which included physical therapy I was able to walk unassisted for most of the time. One week later I was in Ann Arbor for follow up with my fantastic neuro who confirmed the diagnosis and added prednisone and regular IVIG to my treatment schedule..
Unfortunately, I must have picked up a bug somewhere because a few days later I felt lousy, and I mean lousy. I checked my oxygen sats (I ordered a pulse ox off amazon.com when I was on the oxygen tank to monitor what my readings were) and my pulse kept shooting up and my oxygen kept dropping. I called my neuro right away and he said I was headed for a crisis fast and said I needed to go back to the
hospital. I said I didn’t want to go to the same one I had been at previously so he called the other major hospital in our city and spoke with a very kind, non pompous, 72 year old neurologist who followed his orders to a “T” and offered to assist me with any local needs I may have under the direction of my specialist in Ann Arbor. He was amazing, in my room at 8am every morning to check up on me and chat. I had 3 days of IVIg and started on bi-weekly in home treatments after
that.
The rest of the story is available here...on my blog.
Hugs and blessings,
Jen
I was delivered the news that I have bicuspid aortic valve disease unexpectedly last June when I was hospitalized for what appeared to be a stroke. While performing all of the tests to see why the left side of my body was not working and the right side of my face was extremely weak (drooping eyelids, slurred speech, drooping mouth) they performed a bunch of scans/CT/MRI/blood tests and... a chest echo. I was discharged from the hospital with a tentative diagnosis of either anxiety due to stress (though I revealed that life was going quite well aside from the fact that I was hospitalized on my 10 year wedding anniversary) or complex migraines (which was funny to me since I have suffered migraines since I was 16 years old and this “stroke” event did not have the vision auras or any head pain…at all that always accompany a migraine).
Two days after my 3 day hospital stay I saw my GP for follow up and found out that they discharged me without even reviewing the echo. To my surprise, out of all the tests run, this was the only one that was abnormal. It showed a Bi-Cuspid Aortic Valve with insufficiency, mitral valve insufficiency, and tricuspid valve insufficiency with evidence of mild pulmonary hypertension. So, off to the cardiologist I went. The cardiologist performed a TEE which confirmed the BAD with
insufficiency but showed only mild mitral and tricuspid insufficiency and no pulmonary hypertension. He said, you are fine and your heart is unrelated to the stroke like event. I had done some research and had many of the symptoms of pulmonary hypertension: fatigue, shortness of breath, and a feeling of pressure on my chest when I did the slightest of activity. In addition to that I had extreme residual weakness of my eyes and my arms/hands and I was determined to get to the bottom of it considering the fact that I have two young children and I am the primary breadwinner while my husband is back in school. I called a friend of mine who is an RN and she said there was a local Pulmonary Hypertension clinic and gave me the number. Two days later I was in the office of the pulmonologist who saved my life, though neither one of us knew it at the time.
My pulmonologist performed a six minute walk test and after 2 minutes my oxygen SATS dropped to 80, they put me on supplemental oxygen for the remainder of the test and they didn’t go above 88. After the test was finished and I was sitting for 5 minutes they shot up to 100%. He took off the oxygen and they stayed at 100% until he had me get up and walk again, then they fell right back down again. So, he said, there is definitely something wrong with you and I promise to get to the bottom of it. I was prescribed oxygen to use anytime I wasn’t sitting in a chair or laying down, but also when sleeping. Then he one by one ordered the million dollar work up. I had a Chest X-Ray, a Chest CT with contrast, a nuclear pulmonary V/Q scan, a whole body V/Q scan, and a right heart cath. All came back normal so thankfully I did not have pulmonary hypertension. Unfortunately we had no answers except
for the fact that I had an oxygenation problem, weakness, and a Bicuspid Aortic Valve. I also found out that my aortic root had enlarged since a prior CT was performed in 2007, but it certainly wasn't causing these problems. After researching this I found out that people with Bicuspid Aortic Valves are born with connective tissue issues that make them more prone to Aortic Aneurysms, like I needed one more thing to deal with!
In the midst of all these tests I went back to the Neuro who saw me at the hospital, after an EEG he decided it must be complex migraines and wanted to put me on a beta blocker. My old doctor tried that on me and it landed me unconscious in the ER with a blood pressure of 70/50. So, you can imagine my dismay at his recommendation. I said, I am happy to try your theory if you would be willing to run some additional tests first. He was so offended that I would not try the beta blockers and that I challenged his diagnosis that he dropped me as a patient. I walked to my GP’s office in tears (they work in the same building) he told me the guy was a pompous “fill in the blank” and not to worry about him, we would figure this out together. Apparently the neuro I saw went to Harvard and thought he was a big
fish in a little pond and had quite the reputation for upsetting or blowing off patients...just my luck.
The next week I was scheduled for a pulmonary function test which was ordered by my pulmonologist. Note this is the least invasive and least expensive all the tests ordered. At any rate, I was alarmed when my pulmonologist called a few nights later to inform me that the test showed diaphragm weakness due to a neuromuscular disorder. He referred me to a different neurology office and said we may be on the
right path. I went to the appointment and after performing the exam the doctor took a step back and said “I think you have Myasthenia Gravis” this was due to the fatigable generalized weakness and the ptosis from the eye strength test. She called in four residents to show them what it looked like and explained that while there is no cure there is treatment, I said sign me up! However, she wanted to
confirm with the blood test. When the blood test came back negative she was very aloof and said, well I don’t know what it is, maybe vasculits or something. When I asked if I could try a trial dose of Mestinon or Prednisone she said no, there is nothing more I can do for you. I later learned, when gathering my medical files that she suspected anorexia. I went from 150 pounds to 125 pounds and shrinking in two weeks and by the time I saw her (almost 2 months after my hospital stay) I was 115 due to the fact that it was extremely difficult for me to swallow! Note that for a woman who is 5’6” 115 is not considered underweight though the rapid rate at which I was wasting away sure scared the heck out of me. Okay, so that was late August.
I spoke with my GP and he referred me to the University of Michigan. He personally called the head neurologist to discuss my case and by early October I was in Ann Arbor and hopeful for some answers. After going through my 3rd neurological exam, my second EMG, my first single fiber EMG, and more blood tests, the head of Neurology diagnosed me with “suspected sero-negative generalized Myasthenia Gravis.” The only thing he was scratching his head at was the rapid rate at which
my oxygen fell with any level of activity but he did start me on
Mestinon (this was later confirmed to definitely be due to the MG but more on that later). My dad had taken me to that appointment and I was so anxious for any type of relief that I made him drive straight to the nearest pharmacy in Ann Arbor. I took my first mestinon and 30 minutes later I did not sound like I had marbles in my mouth and I could read the highway signs. I said, “dad, this is it, they finally
figured me out!” I was ecstatic!
The prescription called for me to take 30mg of Mestinon every 4 hours and titrate up until I had side effects…i.e.I ran to the bathroom with what was second only to the urgency of a colonoscopy prep. That dosage was 60mg every 4 hours and so my journey began. A few weeks later I called U of M because while the Mestinon helped me during the day, after I slept I could not move my arm to turn off the alarm clock
and was so weak that a few times I fell after getting out of bed. I was also starting to feel kind of dizzy. The neurologist prescribed Mestinon Timespan for bedtime so the Mestinon wouldn’t wear off while I slept. It worked like a charm for my morning strength but the dizziness was still there, I felt like I had just stepped off a boat, or had a few too many cocktails.
Four weeks after my tentative diagnosis and med trial I had a follow up scheduled with my pulmonologist and new cardiologist. To my amazement I passed the 6 minute walk test without oxygen…bye, bye oxygen tank! I literally happy danced myself out of the office (albeit weak and out of breath, I didn't care I got to ditch the tank)!They said my diaphragm must have been so fatigued that it caused atelectasis which caused the lack of oxygenation. They said it was a pretty good confirmation of MG. So I got through November until Thanksgiving. I don’t know if I caught a bug or was just doing too much given how good I felt compared to how bad it was for 6 months
but I spent the first week of December hospitalized with a crisis. My breathing was severely affected and so were my legs. I was given 5 days of IVIG at the hospital by the pompous neuro previously mentioned who apologized to me a gazillion times and at discharge I was given a walker and In home nursing care for four weeks. At the
end of the nursing care which included physical therapy I was able to walk unassisted for most of the time. One week later I was in Ann Arbor for follow up with my fantastic neuro who confirmed the diagnosis and added prednisone and regular IVIG to my treatment schedule..
Unfortunately, I must have picked up a bug somewhere because a few days later I felt lousy, and I mean lousy. I checked my oxygen sats (I ordered a pulse ox off amazon.com when I was on the oxygen tank to monitor what my readings were) and my pulse kept shooting up and my oxygen kept dropping. I called my neuro right away and he said I was headed for a crisis fast and said I needed to go back to the
hospital. I said I didn’t want to go to the same one I had been at previously so he called the other major hospital in our city and spoke with a very kind, non pompous, 72 year old neurologist who followed his orders to a “T” and offered to assist me with any local needs I may have under the direction of my specialist in Ann Arbor. He was amazing, in my room at 8am every morning to check up on me and chat. I had 3 days of IVIg and started on bi-weekly in home treatments after
that.
The rest of the story is available here...on my blog.
Hugs and blessings,
Jen
Sunday, July 18, 2010
A lesson learned...
I am happy to report that compared to the last 4 months, I feel like a new woman. Still a woman with MG, but so much better than I was. I was getting so depressed feeling like I was trying so hard to accept this illness and getting kicked down a hill day after day. Every morning I awoke to burning muscle pain and stinging joint pain, not to mention fatigue, nausea, stomach pain, and ultimately depression. Who wouldn't be depressed with a daily routine like that ending in severe muscle weakness and double vision by the afternoon clear into the evening?
Anyway, the lesson I learned is that just because I have this new illness I am still learning to live with it is important to listen to my body. Had I done that I might have called the doctor in April and explained how lousy I felt every day. Instead I convinced myself that it was just something I had to accept and that was how life was going to be for the rest of my days. I have many friends with MG and they have fluctuations in their illness and continue on so I just had to put on my big girl pants and get on with it.
Well, now I know it was not the MG but the Imuran. Most MGers to great on it, even though it takes up to 18 months to show success (also contributing to me chalking all of my problems up to the MG, I was supposed to be patient after all). Well, I am one of the small percentage of people whose liver does not tolerate Imuran, so I beat mine up for 4+ months giving the medicine the old college try.
I feel like I have stepped out of a dark fog. Yes, I still have weakness and double vision and pain but nothing like I have put up with for almost 1/2 a year. A lesson learned indeed, and I am so greatful that there isn't any lasting damage. Until next time - God Bless - Jen
Anyway, the lesson I learned is that just because I have this new illness I am still learning to live with it is important to listen to my body. Had I done that I might have called the doctor in April and explained how lousy I felt every day. Instead I convinced myself that it was just something I had to accept and that was how life was going to be for the rest of my days. I have many friends with MG and they have fluctuations in their illness and continue on so I just had to put on my big girl pants and get on with it.
Well, now I know it was not the MG but the Imuran. Most MGers to great on it, even though it takes up to 18 months to show success (also contributing to me chalking all of my problems up to the MG, I was supposed to be patient after all). Well, I am one of the small percentage of people whose liver does not tolerate Imuran, so I beat mine up for 4+ months giving the medicine the old college try.
I feel like I have stepped out of a dark fog. Yes, I still have weakness and double vision and pain but nothing like I have put up with for almost 1/2 a year. A lesson learned indeed, and I am so greatful that there isn't any lasting damage. Until next time - God Bless - Jen
Tuesday, July 13, 2010
One Mississippi, Two Mississippi...
Ahhh, what a week. So, rewinding to last week I only worked Tuesday. Wednesday my lovely mother in law drove me to Greektown Casino to stay at the new hotel, very nice by the way, and have some fun pre neuro appointment in Ann Arbor. While I can't post on any new exciting winnings I was able to play from noon until 1am on 40 dollars so Chuckie Cheese for kids provided well. The last three hours I lost the $100 I won while waiting for my momma in law to return from her gambling bliss. I had gotten too weak to walk the floors in search of her and was afraid if I left my seat she wouldn't find me or I wouldn't get a seat back to sit in. When she did come back I still had $34 so not too shabby.
Thursday I went to the neurologist and my liver enzymes were through the roof so off the Imuran and on to Cyclosporine. We'll see how that fares. On day 4 of it I had a major migraine with nausea and an all over awful feeling but I am now on day 5 and doing pretty well. He also said we aren't seeing good enough results with my IVIG schedule so I now have to have in home IV treatment every week for 6 weeks and if no improvement it is on to Plasmapherisis and if that doesn't work we talk thymectomy...which I am not in the mood for, If I can live the rest of my life without surgery I will be a happy woman. As it stands, pre-MG I have had too many surgeries to list on any doctor's office paperwork.
He did run a panel for other autoimmune diseases given the skin symptom (Livedo Reticularis with Reynauds) but he thought it was probably the result of the frequent IVIG and my bunk heart. Thankfully the AI panel came back clean so I think he is correct.
Tomorrow is going to be one doozy of a stressor with a chest echo at 9am to see how my heart is holding up with all this abuse and my dad goes in to have his upper right lung lobe removed...too long to explain here, just keep him in your prayers.
Other than that, and I think that is quite enough, things are staus quo around here. Going well with an a$$load of stress dumped on us. No such thing as a calm week in the Walsh household. I am hoping the new IVIG schedule brings brighter and stronger days and I am already feeling loads better without the Imuran wreaking havoc on my liver.
John is in soccer camp and loving it, band camp is next month so he has been quite busy lately. Cindy is getting cuter by the minute. Pat is up to his eyeballs in school and staying strong and focused to get his degree and I am just 'eeking out the strength I have to keep my job and our house afloat.
I would say I will post soon but whenever I do that, I fail so until next time I hope you are all well.
Hugs,
Jen
Thursday I went to the neurologist and my liver enzymes were through the roof so off the Imuran and on to Cyclosporine. We'll see how that fares. On day 4 of it I had a major migraine with nausea and an all over awful feeling but I am now on day 5 and doing pretty well. He also said we aren't seeing good enough results with my IVIG schedule so I now have to have in home IV treatment every week for 6 weeks and if no improvement it is on to Plasmapherisis and if that doesn't work we talk thymectomy...which I am not in the mood for, If I can live the rest of my life without surgery I will be a happy woman. As it stands, pre-MG I have had too many surgeries to list on any doctor's office paperwork.
He did run a panel for other autoimmune diseases given the skin symptom (Livedo Reticularis with Reynauds) but he thought it was probably the result of the frequent IVIG and my bunk heart. Thankfully the AI panel came back clean so I think he is correct.
Tomorrow is going to be one doozy of a stressor with a chest echo at 9am to see how my heart is holding up with all this abuse and my dad goes in to have his upper right lung lobe removed...too long to explain here, just keep him in your prayers.
Other than that, and I think that is quite enough, things are staus quo around here. Going well with an a$$load of stress dumped on us. No such thing as a calm week in the Walsh household. I am hoping the new IVIG schedule brings brighter and stronger days and I am already feeling loads better without the Imuran wreaking havoc on my liver.
John is in soccer camp and loving it, band camp is next month so he has been quite busy lately. Cindy is getting cuter by the minute. Pat is up to his eyeballs in school and staying strong and focused to get his degree and I am just 'eeking out the strength I have to keep my job and our house afloat.
I would say I will post soon but whenever I do that, I fail so until next time I hope you are all well.
Hugs,
Jen
Friday, July 2, 2010
One doozy of a week!
Sorry it has been so quiet here, I just really needed a time out. I have had a very full week, some good, some bad. Sunday I almost ended up in the hospital when my whole body stopped working. I was sitting on the couch with my 4 year old and everything gave out. My legs wouldn't move, my arms wouldn't move, my head slumped backward, and when I tried to speak my tongue fell back towards my throat. My husband knew the drill and put a mestinon under my tongue, he had to hold my body and support my head so it would stay in my mouth. I came around after a long and scary 20 minutes or so and he watched me like a hawk. Monday I had a doctor's appointment and while I was quite exhausted I was no where near as bad as I was on Sunday.
So the doctor's appointment could take up a whole blog but I will focus on the nitty gritty. while I was there my arms, hands, and feet did something that has been happening off and on for the past 6 months. I now have confirmed Raynauds (where your fingers and toes turn white upon the slightest exposure to cold, then when they warm up they turn this freakish blue/purple color. This is pretty common and as long as I keep my hands and feet warm I don't have to worry about losing my fingers and toes. The more frustrating and frightening part of the appointment was when he saw my arms. He called it Livedo Reticularis and said it is linked with 3 autoimmune diseases, none of which is MG...of course. So I see my neuro next week and am supposed to discuss it with him. I am freaked out that I have another disease on top of this and that my meds have been masking the symptoms. Though I look for blessings in everything and the blessing in this is that if I do have another AI I have been receiving treatment for it since it started and it would also explain why my MG has not been responding to treatment as well as we had hoped.
Wednesday was wonderful, I woke up feeling awful and was so weak, stressed, and tired that I just could not work. So I called in and while I was resting my Grandma called and offered to pick me up. What a wonderful relief. I had a day of quiet rest in my Grandma's loving home. No kids asking for food or attention, no husband asking where this is or that is or can I make a phone call for him, no computer tempting me to work. I just relaxed and recharged...ahhh.
I am feeling much better today. We went to my in-laws this evening and the kids played in the pool. I sat on the edge and soaked my feet and enjoyed the sun and fresh air. I am so excited for the long weekend, I hope my health allows me to enjoy it. I think that about sums it up.
So the doctor's appointment could take up a whole blog but I will focus on the nitty gritty. while I was there my arms, hands, and feet did something that has been happening off and on for the past 6 months. I now have confirmed Raynauds (where your fingers and toes turn white upon the slightest exposure to cold, then when they warm up they turn this freakish blue/purple color. This is pretty common and as long as I keep my hands and feet warm I don't have to worry about losing my fingers and toes. The more frustrating and frightening part of the appointment was when he saw my arms. He called it Livedo Reticularis and said it is linked with 3 autoimmune diseases, none of which is MG...of course. So I see my neuro next week and am supposed to discuss it with him. I am freaked out that I have another disease on top of this and that my meds have been masking the symptoms. Though I look for blessings in everything and the blessing in this is that if I do have another AI I have been receiving treatment for it since it started and it would also explain why my MG has not been responding to treatment as well as we had hoped.
Wednesday was wonderful, I woke up feeling awful and was so weak, stressed, and tired that I just could not work. So I called in and while I was resting my Grandma called and offered to pick me up. What a wonderful relief. I had a day of quiet rest in my Grandma's loving home. No kids asking for food or attention, no husband asking where this is or that is or can I make a phone call for him, no computer tempting me to work. I just relaxed and recharged...ahhh.
I am feeling much better today. We went to my in-laws this evening and the kids played in the pool. I sat on the edge and soaked my feet and enjoyed the sun and fresh air. I am so excited for the long weekend, I hope my health allows me to enjoy it. I think that about sums it up.
Thursday, June 24, 2010
Summer and MG
Since we are in week two or more of weather in the 80's 90's I thought I would take a moment to address MG and heat. People with autoimmune diseases know all too well what the worst triggers for their illness are. These include stress, illness, infection, and obviously heat. Thankfully I have air conditioning, however it is a catch 22 because I LOVE SUMMER. Unless I am in a pool I cannot tolerate the temperature if it is above 75, I literally melt.
This morning it took 2 hours for my legs to work well enough to get out of bed. It is now 5:20pm and I am still stumbling and using the walker for safety reasons. In addition to my legs giving out the MG has attacked my muscles used for speech so it has been a quiet day in my home. I sound like a drunk when I talk and if I talk too long I have swallowing difficulties.
I know this sounds absolutely mortifying and while it is no walk in the park I am thankful that I have kept the breathing and swallowing difficulty at bay enough to avoid the hospital. Tomorrow is treatment day for me and for those of you who follow my blog you are well aware that as the days draw nearer to treatment I go downhill. The heat has just gotten the best of me this go around. I think two weeks ago it was my legs and eyes. I don't know why my legs have been a constant as I rest them when I am weak, maybe they just haven't had enough time to recover?
Some good things have happened in the past week that I would like to post on as well. Saturday was the Annual Meeting for the Great Lakes Myasthenia Foundation and it was a wonderful event. I met some new people and got to meet a few friends in person for the first time. The speakers did a fantastic job. Lisa Gigliotti was there to tell her encouraging story of living with courage and battling RA and MG. Dr. Glisson, a neuro opthalmologist presented a great presention with video on Ocular MG.
Wednesday, the radio show I taped 2 weeks ago aired locally. You can download it for free on iTunes, just search "The Johnnie Tuitel Show" or you can listen to the podcast here... http://www.publicrealityradio.org/programs/the-johnnie-tuitel-show/episodes/show-5-jen-walsh
I hope my readers are having a strong blessed week!
Jen
This morning it took 2 hours for my legs to work well enough to get out of bed. It is now 5:20pm and I am still stumbling and using the walker for safety reasons. In addition to my legs giving out the MG has attacked my muscles used for speech so it has been a quiet day in my home. I sound like a drunk when I talk and if I talk too long I have swallowing difficulties.
I know this sounds absolutely mortifying and while it is no walk in the park I am thankful that I have kept the breathing and swallowing difficulty at bay enough to avoid the hospital. Tomorrow is treatment day for me and for those of you who follow my blog you are well aware that as the days draw nearer to treatment I go downhill. The heat has just gotten the best of me this go around. I think two weeks ago it was my legs and eyes. I don't know why my legs have been a constant as I rest them when I am weak, maybe they just haven't had enough time to recover?
Some good things have happened in the past week that I would like to post on as well. Saturday was the Annual Meeting for the Great Lakes Myasthenia Foundation and it was a wonderful event. I met some new people and got to meet a few friends in person for the first time. The speakers did a fantastic job. Lisa Gigliotti was there to tell her encouraging story of living with courage and battling RA and MG. Dr. Glisson, a neuro opthalmologist presented a great presention with video on Ocular MG.
Wednesday, the radio show I taped 2 weeks ago aired locally. You can download it for free on iTunes, just search "The Johnnie Tuitel Show" or you can listen to the podcast here... http://www.publicrealityradio.org/programs/the-johnnie-tuitel-show/episodes/show-5-jen-walsh
I hope my readers are having a strong blessed week!
Jen
Thank you for the Award Kerri
My friend Kerri gave me this award. Thank you Kerri! Kerri is a fellow myasthenic, compassionate, an amazing author, a devout Christian, and most important an amazing friend and source of inspiration...
So my instructions are pretty simple and straight forward:
1. Thank the person who gave you this award. -- Check►
2. Share up to 10 things about yourself. Short & sweet
3. Pass the award along to up to 10 bloggers who you have recently discovered and think are fantastic!
4. Contact the bloggers you've picked and let them know about the award. -- of course!!!"
About Me:
1. I am a proud mama to a 10 year old - John and 4 year old - Cindy
2. I have been married to my amazing husband Pat for 11 years, love you honey!
3. There is no greater gift for me than the joy of doing things for others, I have had to get creative with this over the past year as my illness has stripped me of doing anything physical but I like to give emotional support or information on topics I am well versed in.
4. I wear many hats, I am a full time work from home travel agent, I moderate an MG support group (see link on the left for the google group if you have MG), I blog, I vlog (see you tube link on the right for videos on MG).
5. I just taped my first radio interview and it was a blast! You can listen to it at http://www.publicrealityradio.org/programs/the-johnnie-tuitel-show/episodes/show-5-jen-walsh
6. Before I became ill I loved to sing. I was in a band and frequented many karaoke hot spots.
7. I am a glutton for reality TV and medical dramas.
8. I love to read, when I don't have double vision:) My favorite author is Robin Cook.
9. I am double jointed and have hyper flexible joints, great for entertaining friends when I was a kid!
10. I love to travel, I have been to Luxumbourg, Germany, Sweden, Jamaica, the Bahamas, St. Thomas, and all over the United States.
Bloggers I would like to pass this award to.
1. avillagein10.blogspot.com by Kelly and Katy on infertility and the amazingly generous gift of surrogacy
2. seaglasss79.wordpress.com by Colleen an amazingly strong young woman battling Pulmonary Hypertension and kicking some butt
3. wendyusuallywanders.wordpress.com Wendy who is living life and battling MG
4. withcourageican.com Lisa, who has faced more than anyone should have to face and came out on top with Corragio! She wrote a book on RA and MG and is an amazing lady
5. ocular-myasthenia.blogspot.com Tom, blogging about ocular MG, he has done a ton of great research on the subject.
6. chubbycheeksthinks.blogspot.com great blog for fun and givaways by a mamablogger
7. rachelesthermgfoundation.org a mom posting about her daughter's battle with MG and she recently started her own foundation.
Thursday, June 17, 2010
I went to my office today...yeay!!
I wish I could say it was to work but at least I got to see the many faces that were a part of every weekday for so long. I was there about an hour to get some things that I have needed to make it easier to work from home. Everyone was so great. I am plum tuckered out tonight though. Our building is HUGE, I mean take four Wal Marts and stick them together huge and my office i smack dab in the middle so my legs are not working so great but my heart is happy.
I really miss being there so much. I am blessed to be able to work from home but it is such a great company, my co workers are like family and I miss them. Thank goodness I brought the walker or I would probably be in the hospital again but it was so worth it.
All things considered I am doing quite well today. I think the IVIG had a delayed reaction this go around so the breathing difficulty I had at the beginning of the week has subsided and the fatigue has calmed down.
On the kid front, John finally met some neighbor kids and is having a blast. I am hearing "I'm bored" way less. On the negative side, there are strange children in and out of my house and boys like to eat so the pantry runneth bare. Thank goodness I get paid tomorrow:)
Over and out.
I really miss being there so much. I am blessed to be able to work from home but it is such a great company, my co workers are like family and I miss them. Thank goodness I brought the walker or I would probably be in the hospital again but it was so worth it.
All things considered I am doing quite well today. I think the IVIG had a delayed reaction this go around so the breathing difficulty I had at the beginning of the week has subsided and the fatigue has calmed down.
On the kid front, John finally met some neighbor kids and is having a blast. I am hearing "I'm bored" way less. On the negative side, there are strange children in and out of my house and boys like to eat so the pantry runneth bare. Thank goodness I get paid tomorrow:)
Over and out.
Monday, June 14, 2010
Radio Interviews, IVIG, Gardening, Naps, Oh MY...
So I didn't' post as promised. The interview, while fun as all get out, was also quite a bit of an energy sucker...note to self, don't schedule radio interviews 2 days pre-IVIG... Anywho, I made it through the interview and it will now air on Wednesday June 23rd at 10AM on WPRR. The best way to listen is to download it for free on iTunes under The Johnnie Tuitel Show. It will be available a couple of days after the air date. We discussed Myasthenia (by the end of the interview both Johnnie and Angie Kay could pronounce it), we discussed "invisible disibilities", and we discussed funny topics, it should be a great show.
IVIG - Went so well that I think I was only awake for about 30 minutes of it. On the flip side, I am still quite tired and my nose is stuffed so I may be catching a bug. I just have absolutely no oomph, no get up and go, and my eyes are having less and less normal periods which is really having an effect on driving.
Gardening - Okay so I have a self proclamed "black thumb" however, this year, I have been able to keep 2 house plants alive for more than a week (actually going on 6 months), and my flowers outside not only look good but are growing at an exponential rate. I finally figured out how to dead head. So, I may not be a complete and total tool when it comes to gardening...woo hoo.
Naps - need 'em, love 'em, gotta have 'em. It is a necessary evil when you are weak and tired 24/7. I never, NEVER used to nap, now I am napping almost daily. Okay, Update-complete.
Out - Jen
IVIG - Went so well that I think I was only awake for about 30 minutes of it. On the flip side, I am still quite tired and my nose is stuffed so I may be catching a bug. I just have absolutely no oomph, no get up and go, and my eyes are having less and less normal periods which is really having an effect on driving.
Gardening - Okay so I have a self proclamed "black thumb" however, this year, I have been able to keep 2 house plants alive for more than a week (actually going on 6 months), and my flowers outside not only look good but are growing at an exponential rate. I finally figured out how to dead head. So, I may not be a complete and total tool when it comes to gardening...woo hoo.
Naps - need 'em, love 'em, gotta have 'em. It is a necessary evil when you are weak and tired 24/7. I never, NEVER used to nap, now I am napping almost daily. Okay, Update-complete.
Out - Jen
Tuesday, June 8, 2010
Going on the radio for MG Awareness..woo..woo!
So, I am very excited to report that tomorrow I am taping a radio show for MG awareness tomorrow. It will go on air next Wednesday on WPPR 95.3 in Grand Rapids or you can download the podcast on iTunes for The Johnnie Tuitel Show. Johnnie runs a local charity called Alternatives In Motion which gets wheelchairs for those whose insurance will not cover it. He is also an author, a public motivational speaker, and now a radio host.
I am just excited to have the opportunity to spread awareness. I will report more tomorrow...stay tuned!
I am just excited to have the opportunity to spread awareness. I will report more tomorrow...stay tuned!
Monday, June 7, 2010
Things don't always go as planned...
Well, I was very excited going into the weekend as it was my 11th wedding anniversary on Saturday. We arranged for my sister to take the kids overnight, we have not had the house to ourselves in 4 years! And I figured it couldn't be worse than our 10 year because that was the day I was admitted to the hospital with stroke like symptoms and this MG rollercoaster began.
Anyway, I digress, instead of a quiet, romantic weekend. My sister's kids were sick and our family got a stomach bug. So, I think we will try again next weekend...wish us luck.
On the MG news - I am pretty weak today, I think it is fallout from getting sick. Though the heat wave has seemed to have passed and that is helping with the breathing difficulties. I am looking forward to my treatment this weekend and hopefully some alone time with the hubby.
Anyway, I digress, instead of a quiet, romantic weekend. My sister's kids were sick and our family got a stomach bug. So, I think we will try again next weekend...wish us luck.
On the MG news - I am pretty weak today, I think it is fallout from getting sick. Though the heat wave has seemed to have passed and that is helping with the breathing difficulties. I am looking forward to my treatment this weekend and hopefully some alone time with the hubby.
Friday, June 4, 2010
Blog Hop Friday, please view the MG Awareness video below
Well, it is Friday once again. Time for a blog hop. This has been one heck of a week but we are getting through it. It has seen ups and downs but my symptoms are controlled and that is what counts. I wish all of you a Blessed weekend. Please click the link below to blog hop and remember to leave comments!
Wednesday, June 2, 2010
June is Myasthenia Gravis Awareness Month
Thank you Jonathan, Sandy, Janet, Heather, Courtney, and Kerri!
Monday, May 31, 2010
Myasthenia Gravis - A tricky little bugger...
Well, I should have known better, really I have been dealing with the reality of this illness for almost a year now. However, I will not let my hope for remission escape me. It keeps me going, it keeps me positive when I feel good. It allows me to make the most of my life which is greatly limited by my MG.
This past weekend was wonderful. I had my IVIG on Thursday afternoon/evening and the treatment went well. Friday I made it to John's field day at school and we went out to lunch before I crashed for a nap and my mg symptoms sprouted up in the evening with the droopy eye and difficulty walking. Saturday, I spent 5 hours at my dad's pool with the kids, it was a lovely day and I spent most of the time floating on the raft with my 3 year old on my lap going for "boat rides." I slept soundly Saturday night and Sunday we had a three hour swim trip at my dads. I was starting to think that the IVIG and Imuran had magically made the turn to where I would have more normal days than not...not so fast Jen!
So this morning I awoke to my husband trying to get me to breathe properly and get me my much needed Mestinon. My speech was slurred and I could not swallow. He got the pill under my toungue (a little trick I learned from a fellow myasthenic for when you can't swallow) and within 30 minutes I could speak and swallow again. It took another 45 minutes for me to be able to move my legs and get out of bed but I think it is most important to push myself each day to not give in to being bed bound. On bad days my brain tries to win the war and just succumb to the illness but I have two little faces counting on my presence and I will not let them down. Even if it means spending the day in the recliner.
I am feeling a little better but my vision is too poor to drive anywhere and I have the lovely foot drag going on when I walk, hello old friend walker...man are my shoes getting beat up! So, today I rest and hope that it will allow me to have a productive energetic day tomorrow. Here's hoping!
Jen
This past weekend was wonderful. I had my IVIG on Thursday afternoon/evening and the treatment went well. Friday I made it to John's field day at school and we went out to lunch before I crashed for a nap and my mg symptoms sprouted up in the evening with the droopy eye and difficulty walking. Saturday, I spent 5 hours at my dad's pool with the kids, it was a lovely day and I spent most of the time floating on the raft with my 3 year old on my lap going for "boat rides." I slept soundly Saturday night and Sunday we had a three hour swim trip at my dads. I was starting to think that the IVIG and Imuran had magically made the turn to where I would have more normal days than not...not so fast Jen!
So this morning I awoke to my husband trying to get me to breathe properly and get me my much needed Mestinon. My speech was slurred and I could not swallow. He got the pill under my toungue (a little trick I learned from a fellow myasthenic for when you can't swallow) and within 30 minutes I could speak and swallow again. It took another 45 minutes for me to be able to move my legs and get out of bed but I think it is most important to push myself each day to not give in to being bed bound. On bad days my brain tries to win the war and just succumb to the illness but I have two little faces counting on my presence and I will not let them down. Even if it means spending the day in the recliner.
I am feeling a little better but my vision is too poor to drive anywhere and I have the lovely foot drag going on when I walk, hello old friend walker...man are my shoes getting beat up! So, today I rest and hope that it will allow me to have a productive energetic day tomorrow. Here's hoping!
Jen
Sunday, May 30, 2010
Corragio! What it has done for me and my family.
Okay, first I have to give a shout out to my new friend and (unbeknownst to her) mentor, Lisa Gigliotti. Lisa has lived with two autoimmune diseases, namely Rheumatoid Arthritis and Myasthenia Gravis, and while facing many difficult challenges, pain, loss, and adversity she has never lost sight of what the powerful female mentors in her life instilled in her. Live with courage (Corragio!), never give up (Testadura!), and, there are many things in your life you CAN control.
What a message I needed to hear! While many of you know that the inner Sicilian in me does not allow me to lay over and play dead, I have had many challenges with the disease that has taken over my life since last summer. Like a ship in the night I have been navigating rough waters, not knowing what rough seas lay ahead. Daily pulling from places I did not know existed, the strength to work full time from home, raise my children in a loving and fun household, and make sure the man of my dreams and caregiver (something he did not sign up for 11 years ago) knew I adored him every day.
I feel God's presence and my Nana - Minnie Gegliano Brown - led to me this lighthouse, this beacon of hope - Lisa. I am sure she will be humbled to read this as she is not boastful. She mearly tells her story as it is - true and from the heart. But it would be wrong of me not to acknowledge the powerful change I have already felt sweep through me since finishing 2/3 of her book - Corragio! Lessons for Living From an Italian Grandmother Despite Illness, Pain, and Loss
I was led to this book by my local Myasthenia Foundation of America Chapter's Executive Director - Jamie Sheppard. She said that Lisa would be speaking at our annual MG meeting in June so I looked her up and there was the website www.withcourageican.com I looked at the website and read an excerpt from the book and felt an immediate connection. I too have Italian roots and shared a very close relationship with my Nana (Nonna as Lisa's family addresses her Grandmother), I too have Myasthenia Gravis, and I too am a Catholic Michigander. I wrote to tell her how excited I was to meet her and read the book and she sent a copy to me.
I am currently in the midst of devouring it. There are other similarities we share and the road of life and the cards we have been dealt can keep neither of us down. At a time where I was most concerned that my illness would rule me for the rest of my days, there arrived in my mailbox a beacon of hope. While I know I will fight this battle for the rest of my life - for there is no cure - I will not give up the fight. If it means I continue to endure the IVIG every 2 weeks, so be it. If it means swallowing an obnoxious amount of pills to ensure I can breathe, speak, walk, and talk - so be it. I will continue to fight. My children will have the healthiest mother possible because I will fight.
If you are a reader of my blog plagued by Myasthenia, or any chronic illness, I urge you to read Corragio! It is a story of rising up against all odds. It reminds us that while there are things that are taken from us physically, there remain many things that we control. We control how we react, we control what we do or do not do each day, we control what activity we try (maybe we find out our body will not participate but at least we can smile broadly and say we tried). This book has touched my life and changed my outlook. While I do not know what the future holds, I am ever thankful for the wonderful people I have met on this journey.
Last week, I could not see well enough to drive and had breathing problems so severe I worried I would end up back in the hospital. Today, I drove, I swam with my children, I watered the flowers. To those of you reading my blog not stricken with illness, heed my words - do not take the little things in life for granted, for it is the little things in life that make living so grand. Cherish them, take them in, for they are a gift. We are all on a ship, we can be the Captain of or vessel or a mere passenger, it is our choice. I have one thing to say and it will lead me from this day forward - Corragio!
Jen
Friday, May 28, 2010
My 2nd official participation Blog Hop Friday!
This is a great way to generate buzz. Please visit the following links, , http://www.mypixiedreams.com/ , http://www.mynewlifeasmom.com/ , http://takeamomswordforit.blogspot.com/ , http://www.breebeebracelets.blogspot.com/ , http://aguilarfamilyadventures.blogspot.com/ now take a gander, if you are interested comment or follow and hop along to anyone else who suits your fancy. Happy Hoppin' Friday!
Jen
Tuesday, May 25, 2010
Cindy's Story - How I saved my daughter's life
This is a tearjerker. I submitted this story about a week ago to Associated Content and they just agreed to publish it. It is the story of how we almost lost Cindy when she was only 6 days old, but how trusting my intuition and in the Lord saved her and beat the odds.
http://www.associatedcontent.com/article/5414564/malrotation_of_the_intestine_cindys.html?cat=25
Jen
Sunday, May 23, 2010
A little dose of silence is bliss..
Ahhh, for the past two hours my house has been, knock on wood...silent! I love my family very, very much but this week you would think I lived at the zoo. John, my 10 year old showing off his newest wrestling move. Cindy, my four year old just running, jumping and singing for the fun of it. And Pat, my 41 year old, creating new songs on his guitar...love ya honey.
Anywho - currently, John has been whisked off by my in-laws and Cindy and Pat are napping. No TV, no radio, lights off, drapes open, air conditioning on...Bliss! I know if this went on too long I would desperately want the chaos back but these little peaceful breaks give me time to rest and reflect on what I am so grateful for.
This week brings another IVIG treatment, a long holiday weekend off work, Field day at school, and whatever else life decides to throw our way. But for now, I can ignore my responsibilities and bask in life...what's that I hear "MOMMY" Gotta go - Cindy just woke up, literally! Instead of knocking on wood, I should have prayed, that put me in my place!
Have a Blessed week everyone!
Jen
Anywho - currently, John has been whisked off by my in-laws and Cindy and Pat are napping. No TV, no radio, lights off, drapes open, air conditioning on...Bliss! I know if this went on too long I would desperately want the chaos back but these little peaceful breaks give me time to rest and reflect on what I am so grateful for.
This week brings another IVIG treatment, a long holiday weekend off work, Field day at school, and whatever else life decides to throw our way. But for now, I can ignore my responsibilities and bask in life...what's that I hear "MOMMY" Gotta go - Cindy just woke up, literally! Instead of knocking on wood, I should have prayed, that put me in my place!
Have a Blessed week everyone!
Jen
Friday, May 21, 2010
5 Question Friday
Rules for Five Question Friday: Copy and paste the following questions to your blog, answer them, then visit Punken to link up. If you'd like, the blog hop code is available for you to grab!
If you don't have a blog, but want to play along...feel free to answer the questions in the comments of this post, or any blog along the blog hop way!
Questions for Friday, May 21st:
1. Do you have an iPhone and, if so, how do you get apps and what are your favorites?
No, I have a very old Motorola flip which I rarely use b/c I'm rarely mobile in and automobile;) Love my laptop though..
2. What is your fondest memory of K-3rd grade?
I LOVED learning about the letter people in Kindergarten and had the sweetest teacher...Mrs. Bougois.
3. What makes you cringe at the thought of touching?
handles in public restrooms
4. If you could have any celebrity show up on your doorstep who would it be and why?
Dr. Oz because he is smart, personable, and caring.
5. What would you say is your best physical feature?
My legs, when they work:)
If you don't have a blog, but want to play along...feel free to answer the questions in the comments of this post, or any blog along the blog hop way!
Questions for Friday, May 21st:
1. Do you have an iPhone and, if so, how do you get apps and what are your favorites?
No, I have a very old Motorola flip which I rarely use b/c I'm rarely mobile in and automobile;) Love my laptop though..
2. What is your fondest memory of K-3rd grade?
I LOVED learning about the letter people in Kindergarten and had the sweetest teacher...Mrs. Bougois.
3. What makes you cringe at the thought of touching?
handles in public restrooms
4. If you could have any celebrity show up on your doorstep who would it be and why?
Dr. Oz because he is smart, personable, and caring.
5. What would you say is your best physical feature?
My legs, when they work:)
Wednesday, May 19, 2010
A Bit Preoccupied
Okay, so I can't juggle, at all anymore. One thing at a time. And I have not been tending to my blog like I should. I have been a bit preoccupied with volcanos (I'm still a travel agent), kids with colds (was really hoping for allergies), my eye symptoms going bonkers last week, a stomach bug on Monday (while dealing with volcanos and board meetings and trade shows - that were near the volcano) - OH MY! Not to mention what I have been doing in my down time...yes, I think I still have that, hanging by a thread though. I am working on increasing MG awareness for the month of June. I posted a Vlog about it at http://www.youtube.com/watch?v=10dmkPufXtA so if you are reading this and have MG, check it out. Also, if anyone that contacted me about the PSA is still interested, you have about 24 hours before it is complete so send me your contribution if you are still interested.
Sound Off On Volcanos - I Do NOT like you Mr. Eyja Fjallajokull eruption! - last month you made me work on my IVIG day to help stranded travelers, not that I could do much, now you prevent 1/2 of our US travelers from making it to the biggest trade show in 3 years...I could go on but there are refunds to process!
Sound Off on Colds - Seriously...could you give us a break? Our family really isn't that big! Could we dodge that bullet for say one month...eh? Just a thought.
Sound Off on Symptoms - Do you think you could maybe pick a spot and stay there for awhile? I already know the answer to this but it never hurts to ask. Just when I figure out how to walk without all signals firing my leg works fine, just when I learn how to type with one hand I have to relearn how to type with two, just when I get used to compensating for lack of depth perception...well you get the drift.
Sound of on Stomach Bugs - Yeooowch, you wiped me out! 'Nuf said
On the flip side, sometimes things happen for a reason. Maybe I should chill - just a thought! I am grateful for so much. I am so very greatful for all the wonderful people I have met through this blog and the vlog. You all keep me going and I am blessed to have you in my life.
TTFN,
Jen
Sound Off On Volcanos - I Do NOT like you Mr. Eyja Fjallajokull eruption! - last month you made me work on my IVIG day to help stranded travelers, not that I could do much, now you prevent 1/2 of our US travelers from making it to the biggest trade show in 3 years...I could go on but there are refunds to process!
Sound Off on Colds - Seriously...could you give us a break? Our family really isn't that big! Could we dodge that bullet for say one month...eh? Just a thought.
Sound Off on Symptoms - Do you think you could maybe pick a spot and stay there for awhile? I already know the answer to this but it never hurts to ask. Just when I figure out how to walk without all signals firing my leg works fine, just when I learn how to type with one hand I have to relearn how to type with two, just when I get used to compensating for lack of depth perception...well you get the drift.
Sound of on Stomach Bugs - Yeooowch, you wiped me out! 'Nuf said
On the flip side, sometimes things happen for a reason. Maybe I should chill - just a thought! I am grateful for so much. I am so very greatful for all the wonderful people I have met through this blog and the vlog. You all keep me going and I am blessed to have you in my life.
TTFN,
Jen
Saturday, May 15, 2010
Five Question Friday, one day late and deeper in debt:)
Questions for Friday, May 14th:
1. Take your pick...date night, girls night out, or night out alone? date night
2. Can you touch your nose with your tongue? yes, but not recommended
3. What is your favorite flower and why?
Lilacs..I love their scent
4. If you could go back in time, what advice would you give yourself? Do NOT open a restaurant...just one of many pieces of advice
5. If you won the lottery, what is the very first thing you would do? Pass out
1. Take your pick...date night, girls night out, or night out alone? date night
2. Can you touch your nose with your tongue? yes, but not recommended
3. What is your favorite flower and why?
Lilacs..I love their scent
4. If you could go back in time, what advice would you give yourself? Do NOT open a restaurant...just one of many pieces of advice
5. If you won the lottery, what is the very first thing you would do? Pass out
Monday, May 10, 2010
Calling fellow myasthenics....
Okay, to quickly give reflection on how things are going, it is like I am on a boat with rough waters, then calm, then, rough, then calm...such is life right? My eyes are definitely becoming more of a bother, I am losing strength and suffering more ocular effects than I have in quite some time. With that said, I can't complain much because I am starting to fall into more of a cookie cutter myasthenia pattern. More "normal" during the day, less so at night. Mornings continue to be tough, by that I mean mustering up the strength and stamina to get out of bed. The insomnia has subsided. I swear I went for 4 solid months of not sleeping an average of 2-3 nights per week. I'm glad that ship has sailed...knock on wood.
So, why the title? I have a really cool project in mind. I would like to invite other myasthenics to participate. Without giviing too much away, I want to create a PSA that really paints a picture of us as a whole while focusing on the snowflake aspect of this illness. If anyone is interested, please send me a message and I will connect with you to go over the info.
I hope spring is in full swing for all of you out there in cyberland. Stay strong! You are all in my thoughts.
Jen
So, why the title? I have a really cool project in mind. I would like to invite other myasthenics to participate. Without giviing too much away, I want to create a PSA that really paints a picture of us as a whole while focusing on the snowflake aspect of this illness. If anyone is interested, please send me a message and I will connect with you to go over the info.
I hope spring is in full swing for all of you out there in cyberland. Stay strong! You are all in my thoughts.
Jen
Saturday, May 8, 2010
Up and down week...
Well, the last post I was feeling so good. I like those days/hours/minutes. Yesterday was not one of those days. My eyes were just awful. I posted a video on my youtube channel because it was so severe. I could see out of one little slit on my right eye. Fine if you can rest, bad if you have 5 hours of work left. I made it though. And I took it easy last night. After 11.5 hours of sleep I am feeling pretty perky this morning. One cup 'o joe and a mestinon down and I am ready to take on the world:) Though I will not take on the world or the world will take me down.
Today I will cuddle with my cutie pie, watch shows, eat nutritious meals and just relax. Maybe a lavender bath...ahhh, I'm celebrating Mother's Day one day early. Happy Mommies Day to all the fellow Moms out there.
Today I will cuddle with my cutie pie, watch shows, eat nutritious meals and just relax. Maybe a lavender bath...ahhh, I'm celebrating Mother's Day one day early. Happy Mommies Day to all the fellow Moms out there.
Tuesday, May 4, 2010
Feelin' groovy..da, da, da, da
I just get so giddy when my IVIG does the trick! I am feeling awesome! Energy..ahhh, strength...ahhh, vision...YES! And, biggest news of all....my baby turns 4 on Wednesday. Cinco De Mayo! Happy Birthday Miss Cindy Sassafrass.
I am feeling blessed beyond words. I am coming up to one year with this mess of a disease and I can say today I am feeling just great. I hope and pray it last through to the next treatment. The weather is certainly helping. Cool enough during the day to keep the doors and windows open and warm enough at night to keep the windows open. The fresh air is, well, refreshing. I just love this time of year. The lilacs bloomed too, I have the fragrance of fresh cut lilacs throughout the house. If anyone tries to say the mind and body are not connected, they are flat out wrong. That is not to say a positive attitude can heal, nor a negative one kill but they certainly have an effect.
I plan to post a new video tomorrow on my Vlog on a good day, if all goes well, to show just how normal I am when I don't have symptoms. Here's to looking at the bright side of life. Thank you for all your prayers and support.
Much love,
Jen
Friday, April 30, 2010
weak, strong, sight, blind, happy, sad,..
I am feeling pretty good today. I am well rested and hooked up to the IVIG line. I am growing a bit tired of the see saw that is my life. Yesterday for example I couldn't wake up, I mean CoUlD NoT WaKE Up! Once out of bed if I moved my foot my toes scraped the floor, I fell into the recliner and opened my laptop but was too weak to type in my password. After an hour of this I grew emotional. My voice started to slur, my patience waivered. Then I took a long bath in Lavender Epsom Salts....this helped my mood and my voice improved. I decided at that point to take the opportunity to video tape and share my eye symptoms with the world. The response has been tremendous. So many people were out there wondering if they were alone in their symptoms until they saw...me. THis made all the embarrassment and trepadation worth it. Here is the video...
Monday, April 26, 2010
Stepping into new and frightening waters...
well I crossed a line I said I wouldn't cross. After much urging from some fellow myasthenics I have created my very first Vlog on You Tube. The purpose is to put a face to MG for those newly diagnosed and looking to see what the disease is all about so I am not prettied up and I am experiencing some eye, voice, and mouth weakness. Feel free to check it out but please be kind...
http://www.youtube.com/watch?v=pF5J4LmmviI
http://www.youtube.com/watch?v=pF5J4LmmviI
Frustrated with the ups and downs of this Roller Coaster
So, I had a busy weekend. Saturday my mother in law picked the kids and I up to see a play. One would thing sitting for two hours would not exhaust me but i was stumbling around and relying on my walker for the rest of the evening. Sunday was much better, I even managed to do some cleaning. It has been a while since I have been able to accomplish that. And I felt fine afterward. Typically I have to chop chores up into little tasks so I don't fatigue out but I was able to unload and load the dishes in one session and unload and load the laundry in one session. I felt okay for the rest of the evening but the beast struck again this morning. I remember hitting the snooze button but my husband said the next time the alarm went off he lifted my arm and it fell like a noodle, I couldn't even open my mouth to annunciate...just mumbles that were incoherent. He let me sleep another 1/2 hour and brought me my AM dose of Mestinon with coffee. That helped get things moving but I had to sit on each step to get upstairs and I am relying on the walker to get around as I fell again. My whole body aches, like the flu without the fever, and my typing which is usually travel agent fast is a series of slow methodical clicks. Each of my fingers feels like a 10 pound weight. I wish there wasn't such a lapse in time between doing too much and it's effects. I am tired and a bit grouchy today but I know this too shall pass.
Jen
Jen
Saturday, April 24, 2010
Appetite and chronic disease
After making an "appetite bigger than stomach" mistake yesterday, and continuing to pay for it royally today, I thought I would blog about my personal challenges with food/weight loss/weight gain/etc...
When I first became ill with Myasthenia my muscles atrophied fast, my diaphragm was very weak, and my oxygen exchange was so poor that I relied on an oxygen tank to walk anywhere/sleep/shop/drive pretty much anything but sit in a chair. During that time I struggled constantly to eat. Eating made me feel sick, nauseaus. My organs weren't functioning properly due to lack of oxygen so it was very difficult to digest anything I ate. During that time I lost 25 pounds in as many days. I became so frail that one of the doctors put that she suspected anorexia in her notes. This saddened me as I fought daily to eat...anything.
After my diagnosis my appetite came back but by that time my stomach had become pretty small. Once I started the Mestinon I was getting stronger and food didn't disgust me anymore. I remember the first week I started the med going to my favorite lunch joint and cleaning my plate...I paid for that dearly when I learned what happens when you hit your max dose of Mestinon. For those of you who don't know, it hangs out at the neuromuscular junction giving the nerve signal a better chance to make it to the muscle receptor. When you hit your magic dose, it tends to stimulate the colon...suffice it to say I didn't gain any weight from that lunch;) But that's enough about that fun topic.
Moving forward to the medication that everyone who is anyone in the autoimmune disorders community eventually gets prescribed; PREDNISONE...oh the dreaded, beautiful prednisone. Get too little, it doesn't help at all... get too much and you end up with moon face, hump back, hair where you don't want it, and much much more...get just the right amount and hopefully you won't suffer major mood swings, diabetes, or osteoperosis. Fun right? One thing is for sure, no matter what your dose you will get hunger attacks where you can't control your appetite. this happened to me yesterday after a visit to Taco Bell...therein lies my first mistake!
So, lessons learned, just because the pit of your stomach is telling you it is a good idea to drink a bucket of Dr. Pepper and eat two taco supremes followed by a mexican pizza does not mean you should follow instruction. It turns out the stomach has a small IQ and a horrible memory. It has almost been 12 hours and I can still feel the ball of fast food hell eating a hole in my stomach lining. Oh, and in case you were wondering...if you cave in and listen to your stomach like I foolishly did..DO...NOT..BUY...FOOD...FOR...THE...KIDS...what they don't know won't hurt them. But when they come home from school 2 hours later and want to dine on what has your stomach in a vice, well you don't want to find out:)
That is all for now Ta, Ta, I am off to plays with the kiddos.
Hugs,
Jen
Friday, April 23, 2010
Busy Week - Busy Weekend
Hello All - Well, while I am still affected daily by my MG, I am happy to report the last few days have been quite nice. Yesterday I made it through a very busy day of work only having to take three breaks to rest my eyes. My legs didn't go out on me until 10pm and that is a huge accomplishment given that I was struggling from the time I woke up on Monday. My grip has remained weak and that interferes with my typing but I am trying as hard as I can to make do.
Today I woke up with the double vision and drunken sailor walk but was in good spirits, as was Pat. He just finished Winter Semester last night and is very excited. I am proud of him too for getting a 95% on his last Calc test...Woo Hoo...now of course he signed up for Summer Semester so there is only a week off before the craziness starts again but I am so proud of him. Pat sometimes thinks it is cute to do impersonations of me when I am symptomatic, I do not find humor in it but if it keeps his little caregiving heiney sane...have at it. I am so thankful to have his love and support. I know there are single mom's and dads out there battling chronic illness and I just don't know if I would have the strength to do it. I admire you.
Okay - Stress Updates -
6:30AM - Cindy woke up early with a stomach ache and I couldn't stand on my own so Pat grabbed her. Thank the Lord it was hunger and not the stomach flu that has been going around. I had high stress for a minute and then fell back to sleep.
8:00AM - Work computer not cooperating - Stress at a 10
9:00AM - Figured out the problem only to be hit with 20 trip requests - Stress at a 7
10:00AM - Traveler questioned my knowledge of a certain travel topic I specialize in 6 times. "If you don't trust me, please stop asking:)" - Stress at an 8
Rest of day - We'll See...
If all goes as planned and i am feeling okay I have a big weekend planned. My mother in law is going to pick me and the kids up on Saturday to see the play she has been working on, that will be fun. And John made a new friend so we are going to meet his family on Sunday. I wish everyone a Blessed Weekend.
Jen
Today I woke up with the double vision and drunken sailor walk but was in good spirits, as was Pat. He just finished Winter Semester last night and is very excited. I am proud of him too for getting a 95% on his last Calc test...Woo Hoo...now of course he signed up for Summer Semester so there is only a week off before the craziness starts again but I am so proud of him. Pat sometimes thinks it is cute to do impersonations of me when I am symptomatic, I do not find humor in it but if it keeps his little caregiving heiney sane...have at it. I am so thankful to have his love and support. I know there are single mom's and dads out there battling chronic illness and I just don't know if I would have the strength to do it. I admire you.
Okay - Stress Updates -
6:30AM - Cindy woke up early with a stomach ache and I couldn't stand on my own so Pat grabbed her. Thank the Lord it was hunger and not the stomach flu that has been going around. I had high stress for a minute and then fell back to sleep.
8:00AM - Work computer not cooperating - Stress at a 10
9:00AM - Figured out the problem only to be hit with 20 trip requests - Stress at a 7
10:00AM - Traveler questioned my knowledge of a certain travel topic I specialize in 6 times. "If you don't trust me, please stop asking:)" - Stress at an 8
Rest of day - We'll See...
If all goes as planned and i am feeling okay I have a big weekend planned. My mother in law is going to pick me and the kids up on Saturday to see the play she has been working on, that will be fun. And John made a new friend so we are going to meet his family on Sunday. I wish everyone a Blessed Weekend.
Jen
Wednesday, April 21, 2010
Reflecting on my Blessings
I wanted to reflect on my blessings today. I am feeling quite well and have read some posts from friends that have gone through too many trials and tribulations. So I will list all the amazing things I have been blessed with in this life regardless of the crap that has been spewed in my general direction.
1. I was blessed to meet the love of my life, my soulmate, at the young age of 18...going on 19:)
2. Due to that fact we married and were blessed with 2 beautiful children before i was diagnosed with this ugly disease
3. My husband stands by my side, and literally lifts me up, when this illness gets the best of me.
4. My friends and family have rallied around me and given all of their energy to help make sure that my children don't suffer from my suffering.
5. Even though this illness can take me out of commission physically, it hasn't taken me mentally
6. My employer values my work so much they have allowed me to continue doing what I love from home so I don't have to go on disability.
7. I was blessed with children when I was well so I don't have the stress of trying to grow my family while this illness has taken so much from me.
I am feeling pretty lucky in life today. That is all for today. May God Bless my friends and family who have supported me with their love through this difficult time
Love,
jen
1. I was blessed to meet the love of my life, my soulmate, at the young age of 18...going on 19:)
2. Due to that fact we married and were blessed with 2 beautiful children before i was diagnosed with this ugly disease
3. My husband stands by my side, and literally lifts me up, when this illness gets the best of me.
4. My friends and family have rallied around me and given all of their energy to help make sure that my children don't suffer from my suffering.
5. Even though this illness can take me out of commission physically, it hasn't taken me mentally
6. My employer values my work so much they have allowed me to continue doing what I love from home so I don't have to go on disability.
7. I was blessed with children when I was well so I don't have the stress of trying to grow my family while this illness has taken so much from me.
I am feeling pretty lucky in life today. That is all for today. May God Bless my friends and family who have supported me with their love through this difficult time
Love,
jen
Friday, April 16, 2010
Feeling pretty good
I've just finished my IVIG and I am doing pretty well. I'm tired from the benedryl but once that wears off I should feel like the energizer bunny. The session flew by today because I slept through most of it. It amazes me how far we have come with medical advancements. 50 years ago Mestinon was around but beyond that I would be in pretty bad shape. Fast forward to the present and not only are there three prescriptions to manage this uncurable disease but the IVIG would have been unimaginable. I am blessed to be able to receive treatment in my PJ's in the comfort of my own home. If I get hungry (which I do quite a bit with the steriods they use at the beginning of my treatment) I can cruise on over to my own fridge. If I have to go to the bathroom I use my own. I have full control of the remote if I am alert enough to follow the plot of a movie or TV show and the absolute best part of receiving treatment at home is opening all of the doors and windows and letting the fresh air flow through the house. I can't do that tomorrow as we will have quite frigid temperatures.
The temperature fluctuations in the midwest are as drastic as my condition. Yesterday it was sunny and 80 degrees outside, today it is in the 60s, tomorrow we will be lucky to hit 50. I'm going to try to be my own physical metorologist and really hone in on what kicks off my symptom flare ups. So, starting today I am going to jot down the amount of sleep I got the night before, any stress that was unexpected, and how I am feeling in general. My hope is to be more in tune with my body and reduce the triggers that are in my control.
Sleep - 9 hours
Condition in the AM - Quite weak, difficulty with speech and walking
Condition in the afternoon - Speech back to normal, still some intermittent weakness but not severe.
Stressors - Concerned about being ready for treatment on account of waking up late, everything worked fine and I was ready on time. Super stressed that I couldn't work today on account of the volcano from Iceland that is impacting many of my international travelers. Thank the Lord for Rosie running back up in my absence. I owe her flowers and lunch:)
Stress level (1-10) - 8AM - 7, 12N - 4, 3P - 4
Feeling in General - Pretty Good:)
Happy Weekend everyone! And thank you Kerri for your kind note.
The temperature fluctuations in the midwest are as drastic as my condition. Yesterday it was sunny and 80 degrees outside, today it is in the 60s, tomorrow we will be lucky to hit 50. I'm going to try to be my own physical metorologist and really hone in on what kicks off my symptom flare ups. So, starting today I am going to jot down the amount of sleep I got the night before, any stress that was unexpected, and how I am feeling in general. My hope is to be more in tune with my body and reduce the triggers that are in my control.
Sleep - 9 hours
Condition in the AM - Quite weak, difficulty with speech and walking
Condition in the afternoon - Speech back to normal, still some intermittent weakness but not severe.
Stressors - Concerned about being ready for treatment on account of waking up late, everything worked fine and I was ready on time. Super stressed that I couldn't work today on account of the volcano from Iceland that is impacting many of my international travelers. Thank the Lord for Rosie running back up in my absence. I owe her flowers and lunch:)
Stress level (1-10) - 8AM - 7, 12N - 4, 3P - 4
Feeling in General - Pretty Good:)
Happy Weekend everyone! And thank you Kerri for your kind note.
Wednesday, April 14, 2010
Anxiously awaiting Friday...
My body is telling me it is time for my next treatment. It took 2 hours to get out of bed this morning. Do you have any idea how insanely irritating it is to start your day off not being able to lift your arm to turn off the alarm, knowing you have to get up to work, no one is in the house, and you have to pee? I wish I could say today was the only day but sadly, no this has become at least a once a week occurance.
I did get on the computer by 8:30 and kept my sheets dry so that was a major feat in and of itself - Ha! You gotta laugh at yourself right?
So update on the exercise bike...I got a hesitant, tentative okay. I had to promise to only do the lightest setting for 5 minutes every other day the first week, then bump it up by 5 minutes and follow the same routine the next week etc... If I felt, weak, dizzy, or anything else I am to stop and start back at a lower setting/shorter duration or just not do it that day.
On Monday I did my 5 minutes, I cheated and did it again in the evening and think I kicked major toxins that were locked in my muscles into the blood stream because the headache I experienced was of monumental proportions. Thank you Lord for making the maker of Imitrex!
In fun news, Pat is working on a video game project for his digital design class and had John and Cindy help him. I put a couple pics up for your viewing enjoyment...
I did get on the computer by 8:30 and kept my sheets dry so that was a major feat in and of itself - Ha! You gotta laugh at yourself right?
So update on the exercise bike...I got a hesitant, tentative okay. I had to promise to only do the lightest setting for 5 minutes every other day the first week, then bump it up by 5 minutes and follow the same routine the next week etc... If I felt, weak, dizzy, or anything else I am to stop and start back at a lower setting/shorter duration or just not do it that day.
On Monday I did my 5 minutes, I cheated and did it again in the evening and think I kicked major toxins that were locked in my muscles into the blood stream because the headache I experienced was of monumental proportions. Thank you Lord for making the maker of Imitrex!
In fun news, Pat is working on a video game project for his digital design class and had John and Cindy help him. I put a couple pics up for your viewing enjoyment...
Monday, April 12, 2010
Turning a new leaf
Things are looking up around here. I am still feeling pretty darn good. Well enough in fact that I have made a call to the neurologist to get the "okay" to start riding the exercise bike. My grandparents are downsizing right now and called last week to see if I would be interested in a "like new" Schwinn exercise bike. It is just like the one I used at the gym so I am super stoked. I don't want to kick off another exacerbation though so I will patiently wait for the call. See, with MG if my antibodies are on the rampage and I start working a muscle they feel called to action to strike and the last thing I want to do is send those nasty buggers to my legs again. It is killing me to look at the bike and not be able to use it but I'm being a good girl.
Spring Break has ended and the kids are back in school. Pat has a major project for his Software Engineering class so he is up to his ears in work and it is pretty quiet around here. I have the windows open, there is nothing like fresh air and sunshine to cheer one up. I just steeped some jasmine tea and I am enjoying the silence. I think this is going to be a good week.
Saturday, April 10, 2010
Had a good, "normalish" day - whoo hoo!
I am happy, and relieved, and content to post that I had a good day. A boring, run of the mill, livin' life on a Saturday kind of day that I hoped for for so looong. There isn't much to report but that but it is ALOT and I am so happy. I think this weather thing has alot to do with it. It was a nice sunny, not too hot, not too cold day. I had the windows open and the kids and hubby were in good moods and the whole day was just nice. I hope tomorrow will be the same. I am going to get some rest because that is important too. I hope all my friends and family out there are having a nice weekend as well.
Here's to normal -
Jen
Here's to normal -
Jen
Thursday, April 8, 2010
In need of direction, an answer, patience, or at least hope..
Okay, enough is enough, I am at my wits end. I cannot tolerate this lack of energy anymore. I am sore, weak, tired, and brain fuzzy. This is progressing into just being down in general. My blood test results were not startling enough to warrant anything other than some extra iron supplements and spacing my Imuran into one pill three times a day versus three pills once a day. It is getting rediculous the amount of pills I have to pop to survive. If I didn't know how I felt without them I may suspect them of being the culprit of my problems but I have had times when I have forgotten a dose and believe you me, I am in much more dire straights without the meds. To give my nearest and dearest an idea of how much work goes into just taking my pills I will layout for you how often I have to take my medicine.
6:00am - 3 pills - 2 types for MG (Myasthenia)
8:00am - 4 vitamins, 1 pill for OH (orthostatic hypotension) and sometimes 1/2 pill for MG
10:00am - 1 pill for mg, 1 pill for orthostatic hypotension
12:00pm - 2 vitamins, 1 pill for OH and sometimes 1/2 pill for MG
2:00pm - 1 pill for mg,
5:00pm - 2 vitamins
6:00pm - 1 pill for mg
8:00pm - 1 pill for thyroid
10:00pm - 4 pills for mg (three of these I will now divide and take with meals at 8, 12, and 5)
2X week change my estrogen patch
Albuterol if I have an upper Respiratory infection - usually needed once every couple of months
Pain medication as needed - try not to take and if I do it is only in the evening
IVIG - Treatment every 2 weeks for 6 hours straight
IV Prednisone - with my treatment
8 Benedryl day of treatment and tylenol day of treatment
So in any given day I have to take at least 22 pills including vitamins and in any given month I have to take 688 pills...crazy huh? I eat healthy, drink tons and tons of water, and I'm trying to exercise but that carries it's own risks.
Here are my blood test results, I finally got them in the mail. Next to the actual numbers are my baseline results from a little over a month ago. From the way that I feel it is significant but I guess it is too close to normal range for the doctors to do anything yet...yawn...
WBC - 3.6 was 5.19 at Baseline
Hgb - 11.3 was 13 at baseline
Hct - 32.8 was 38.7 at baseline
A/G ratio - .9 no baseline for reference but it says normal range is
1-2
In positive news, Pat is almost done with his first full year back in college and I am so proud of all the hard work he has put in. I am blessed to have an amazingly supportive group of family and friends that continue to come clean and babysit myself and the kids on my really bad days when Pat is at school. Work continues to go well, I am so blessed to be able to work from home, we would be begging on the street corners and I would not have access to medical treatment if I didn't have my job. The kids are filled with joy and I can't help but be happy when I am around them. For this I am most thankful. Your continued words of support and prayer are always appreciated. I will try to keep my body strong and my head positive. I know things have been dire on my blog but as important as it is for me to stay as calm and relaxed as possible, it is very therapeutic and diagnostically helpful to have an accurate representation of my journey so no fluff and puff here, just the nitty gritty, though I will continue to focus on the positives in my closing so as not to fall into a deep dark abyss.
Blessings of spring, sunshine, and strength to you and yours
6:00am - 3 pills - 2 types for MG (Myasthenia)
8:00am - 4 vitamins, 1 pill for OH (orthostatic hypotension) and sometimes 1/2 pill for MG
10:00am - 1 pill for mg, 1 pill for orthostatic hypotension
12:00pm - 2 vitamins, 1 pill for OH and sometimes 1/2 pill for MG
2:00pm - 1 pill for mg,
5:00pm - 2 vitamins
6:00pm - 1 pill for mg
8:00pm - 1 pill for thyroid
10:00pm - 4 pills for mg (three of these I will now divide and take with meals at 8, 12, and 5)
2X week change my estrogen patch
Albuterol if I have an upper Respiratory infection - usually needed once every couple of months
Pain medication as needed - try not to take and if I do it is only in the evening
IVIG - Treatment every 2 weeks for 6 hours straight
IV Prednisone - with my treatment
8 Benedryl day of treatment and tylenol day of treatment
So in any given day I have to take at least 22 pills including vitamins and in any given month I have to take 688 pills...crazy huh? I eat healthy, drink tons and tons of water, and I'm trying to exercise but that carries it's own risks.
Here are my blood test results, I finally got them in the mail. Next to the actual numbers are my baseline results from a little over a month ago. From the way that I feel it is significant but I guess it is too close to normal range for the doctors to do anything yet...yawn...
WBC - 3.6 was 5.19 at Baseline
Hgb - 11.3 was 13 at baseline
Hct - 32.8 was 38.7 at baseline
A/G ratio - .9 no baseline for reference but it says normal range is
1-2
In positive news, Pat is almost done with his first full year back in college and I am so proud of all the hard work he has put in. I am blessed to have an amazingly supportive group of family and friends that continue to come clean and babysit myself and the kids on my really bad days when Pat is at school. Work continues to go well, I am so blessed to be able to work from home, we would be begging on the street corners and I would not have access to medical treatment if I didn't have my job. The kids are filled with joy and I can't help but be happy when I am around them. For this I am most thankful. Your continued words of support and prayer are always appreciated. I will try to keep my body strong and my head positive. I know things have been dire on my blog but as important as it is for me to stay as calm and relaxed as possible, it is very therapeutic and diagnostically helpful to have an accurate representation of my journey so no fluff and puff here, just the nitty gritty, though I will continue to focus on the positives in my closing so as not to fall into a deep dark abyss.
Blessings of spring, sunshine, and strength to you and yours
Tuesday, April 6, 2010
Oh so sleepy...yawn...
Imagine having the flu for over a month. That is how I feel every day. I wake up with achy joints, sore muscles, and fatigue that is unexplainable in words. I don't know how much more of this I can take. I am waiting for a call back from my neuro in regards to my blood test results one month post starting Imuran. It turns out my white blood cell count, hemeglobin, hematocrit, and a/g ratio are all low and it is making me feel like absolute crap. If you google it, you come up with the boy in the bubble or other scary stuff. Basically I have no immune system and zero energy right now. I want to go back to feeling crappy the way I got used to, at least I could function then. Sorry so down, I am just sooo tired.
In more positive news, the kids had a blast for Easter. Cindy calls the Easter Bunny "Bunny Easter." John is getting a little too old, but never too old for candy and money:) I woke up Easter morning unable to walk, about 2 hours later I was mobile and then during brunch I couldn't use my hands any more, kinda hard to eat when you can't hold a fork...that passed as well, don't worry I'm not starving:)
Sunday, March 28, 2010
Teetering on another exacerbation
Well, the week hasn't gotten any better. Imagine if everything you saw looked like the picture above. That is what happens to me when my vision gets bad. This time it was even worse. I had to take off Thursday and Friday due to extreme weakness in my legs, severe vision issues (I can't even call it double vision it looked like I was trying to focus through vaseline coated glasses), and shortness of breath. My neurologist was out of town so the team of residents and the IVIG nurse reviewed my file and came up with a "keep Jen out of the hospital for the weekend" plan. My mestinon has been increased from 60mg every 4 hours to alternating 60/30mg every 2 hours. This has helped a little bit but a little bit at best. I fear the next step is either increase the predinsone or add another day of IVIG each month. I don't want to do either. The prednisone will make me a hairy, fat, emotional wreck, and the extra IVIG will take up a third whole day each month. I am supposed to hear back from the neuro tomorrow to see how I am doing and find out the plan moving forward. I was told that the temperature changes in the spring and fall can have a major affect on myasthenics. I hope that is the case and in a few weeks things will calm down again. I'm praying as I am really sick of being such a burden on family. Well that is all I can type for now. I am still exhausted.
Tuesday, March 23, 2010
Why it is important to follow protocol
From Tuesday, March 23rd (Accidently saved as a draft)-
Today, I sit in the dark with my sunglasses on, trying to get through the day with a raging migraine. It is completely my fault because I didn't follow protocol for my IVIG. Things had been going so well that I didn't take each dose of benedryl, and while I took the tylenol during the treatment I didn't continue for 24 hours, then the real naughty part...I did not adequetly hydrate. All of the above resulted in a mild allergic reaction on Saturday night, itching, swelling, fun, fun, fun...and then a headache Sunday and Monday followed by a Migraine today. It is one of those migraines that feels like there is a bear trap, a rusty one, clamped down on your brain just twisting and pulsing. I am trying to hydrate but being so far behind the 8 ball has done me zero favors.
I am also having increased difficulty breathing. This hasn't happened in awhile and is totally freaking me out - I do NOT want to go to hotel Spectrum Hospital for another extended stay. I had a Pulmonary Function Test at my new pulmonologist and hopefully the test just fatigued me and this will pass...we'll see. My MVV (maximum voluntary ventilation) numbers came up 20 points but are still 40 points below where they should be. This was the first thing back at the end of the summer that clued the specialists into the fact that my disease was neuromuscular in origin. I am happy that the number is up but the pulmonologist said we really need to get it higher. My Maximum inspiratory and expiratory pressures each went down 5 and 6 points respectively. This is the measure of diaphragm strength so this is extra discouraging. My pulmo is going to consult with my neuro to see the best way to strengthen my diaphragm without causing further weakness. The problem with myasthenia is that the area being attacked can actually get worse with physical therapy if you do too much. It is like shining a flash light on it. If my body things my neuromuscular transmission is a virus, then the muscles being worked get attacked. Oy! You can win for trying. I am going to rest and try to get stronger.
Today, I sit in the dark with my sunglasses on, trying to get through the day with a raging migraine. It is completely my fault because I didn't follow protocol for my IVIG. Things had been going so well that I didn't take each dose of benedryl, and while I took the tylenol during the treatment I didn't continue for 24 hours, then the real naughty part...I did not adequetly hydrate. All of the above resulted in a mild allergic reaction on Saturday night, itching, swelling, fun, fun, fun...and then a headache Sunday and Monday followed by a Migraine today. It is one of those migraines that feels like there is a bear trap, a rusty one, clamped down on your brain just twisting and pulsing. I am trying to hydrate but being so far behind the 8 ball has done me zero favors.
I am also having increased difficulty breathing. This hasn't happened in awhile and is totally freaking me out - I do NOT want to go to hotel Spectrum Hospital for another extended stay. I had a Pulmonary Function Test at my new pulmonologist and hopefully the test just fatigued me and this will pass...we'll see. My MVV (maximum voluntary ventilation) numbers came up 20 points but are still 40 points below where they should be. This was the first thing back at the end of the summer that clued the specialists into the fact that my disease was neuromuscular in origin. I am happy that the number is up but the pulmonologist said we really need to get it higher. My Maximum inspiratory and expiratory pressures each went down 5 and 6 points respectively. This is the measure of diaphragm strength so this is extra discouraging. My pulmo is going to consult with my neuro to see the best way to strengthen my diaphragm without causing further weakness. The problem with myasthenia is that the area being attacked can actually get worse with physical therapy if you do too much. It is like shining a flash light on it. If my body things my neuromuscular transmission is a virus, then the muscles being worked get attacked. Oy! You can win for trying. I am going to rest and try to get stronger.
Thursday, March 11, 2010
Silence is bliss...
So I have been silent for a few days and it didn't go unnoticed. It is a good thing. I think my new treatment and outlook are helping with my overall health. I also went from 5-6 hours a day working from home to 8 hours a day and I am tolerating it quite well. I still have my weak moments but comparitively less than last month. I think it also helps that the weather is changing. We had 6 straight days of sun and it was warm enough to open the windows. My bulb plants are sprouting too and that always gives me warm fuzzies. It means that Easter is on the way, I'm glad Cindy has gotten over her fear of bunny rabbits.
For an MG update I have had longer periods of strength daily. My worst moments are in the early morning and in the evening. I have a little bit of eye weakness but not enough for full on double vision most of the time and I am walking less like a drunken sailor and more like an elderly shuffler so that is an improvement. I spent the last two days sanitizing everything before I touch it because Cindy has a monster bug and I am terrified that I will catch it but I have felt pretty darn good...knock on wood.
The fear lies in what I know happens with my illness when I have a bug I go downhill fast, the last two times ending in multi-day hospital stays and all the warnings on my Imuran prescription. If I followed that I would live in a bubble so that is a bit freaky. The trick with these autoimmune disorders is to supress the sick, confused immune system without allowing real germ enemys from laying seed during the supression...hopefully I won't have anything to report in that arena.
That is about it for now. I am thankful that things are starting to return to some semblance of our "normal." We arent there yet but we are certainly on the road... I will try to commit to posting more regularly, it is just hard with the return of life, and that is a good thing.
TTFN
For an MG update I have had longer periods of strength daily. My worst moments are in the early morning and in the evening. I have a little bit of eye weakness but not enough for full on double vision most of the time and I am walking less like a drunken sailor and more like an elderly shuffler so that is an improvement. I spent the last two days sanitizing everything before I touch it because Cindy has a monster bug and I am terrified that I will catch it but I have felt pretty darn good...knock on wood.
The fear lies in what I know happens with my illness when I have a bug I go downhill fast, the last two times ending in multi-day hospital stays and all the warnings on my Imuran prescription. If I followed that I would live in a bubble so that is a bit freaky. The trick with these autoimmune disorders is to supress the sick, confused immune system without allowing real germ enemys from laying seed during the supression...hopefully I won't have anything to report in that arena.
That is about it for now. I am thankful that things are starting to return to some semblance of our "normal." We arent there yet but we are certainly on the road... I will try to commit to posting more regularly, it is just hard with the return of life, and that is a good thing.
TTFN
Saturday, March 6, 2010
Great Day!
This morning I awoke with more vim and vigor than I have in the past year. Most mornings I feel as though I am walking through wet cement in the middle of thick swamp fog. I think it is a combination of this commitment to giving and the modification to my treatment. Whatever it is...I LIKE it:)
Last year, before my illness hit me, I was working out in the gym at least 3 times a week and was like the energizer bunny mom. Many things have changed for my kids, ages 3 and 10 but most of all just the mom they knew. I know it is scary for them to have seen me in the hospital so many times. They have been so brave and loving through this all but since I was feeling so well, I wanted today to be about them. Today I give with a child's heart, today I give with a child's heart, today I give with a child's heart.
What I did for my kids today:
1. I let my oldest stay home from school and bought him a new video game.
2. I took the kids to Toys R Us and Taco Bell for lunch (we have been eating very healthy at home lately so this was a huge treat).
3. We added on $2 to our bill to support Autism research and the kids each received a sticker to proudly wear.
4. I let them pull out all of the really loud games and played with them, you know Whac-A-Mole, Hungry-Hungry-Hippo, I even let them jump on and pop the bubble wrap.
5. We had a dance party in the living room.
6. We had dinner on a blanket on the living room floor and called it a picnic. I let them pick what they wanted for dinner so we had Steak, Crab Legs with Butter, French Fries, Broccoli, and M&M's and Rolo's for Desert.
7. We ordered a movie on TV and stayed up past bed time cuddling on the couch with a big sleeping bag and a bowl of popcorn.
8. I spent extra time reading and praying with each of my children and sent them off for a long night of sweet comfortable dreams.
What a great day, I got to be a kid again too! May all of you enjoy the peace and joy of blissful innocence.
Jen
Last year, before my illness hit me, I was working out in the gym at least 3 times a week and was like the energizer bunny mom. Many things have changed for my kids, ages 3 and 10 but most of all just the mom they knew. I know it is scary for them to have seen me in the hospital so many times. They have been so brave and loving through this all but since I was feeling so well, I wanted today to be about them. Today I give with a child's heart, today I give with a child's heart, today I give with a child's heart.
What I did for my kids today:
1. I let my oldest stay home from school and bought him a new video game.
2. I took the kids to Toys R Us and Taco Bell for lunch (we have been eating very healthy at home lately so this was a huge treat).
3. We added on $2 to our bill to support Autism research and the kids each received a sticker to proudly wear.
4. I let them pull out all of the really loud games and played with them, you know Whac-A-Mole, Hungry-Hungry-Hippo, I even let them jump on and pop the bubble wrap.
5. We had a dance party in the living room.
6. We had dinner on a blanket on the living room floor and called it a picnic. I let them pick what they wanted for dinner so we had Steak, Crab Legs with Butter, French Fries, Broccoli, and M&M's and Rolo's for Desert.
7. We ordered a movie on TV and stayed up past bed time cuddling on the couch with a big sleeping bag and a bowl of popcorn.
8. I spent extra time reading and praying with each of my children and sent them off for a long night of sweet comfortable dreams.
What a great day, I got to be a kid again too! May all of you enjoy the peace and joy of blissful innocence.
Jen
Friday, March 5, 2010
I have been slacking...
Sorry I haven't posted in awhile. It has been quite the week. I had my four hour drive across Michigan on Tuesday. Thankfully the roads were clear and it was sunny, I am also thankful that the patient before me was late and I was early so Dr. Teener spent twice the amount of time he usually does with me. I was wiped out on Wednesday and on Thursday had my IVIG with 250mg of Solumedrol. Which is liquid Methylprednisolone. Dr. Teener didn't want to increase my daily pred dose but wasn't thinking I'm quite where I should be ideally (a.k.a. the "normal" that is posted in the neurology textbooks). We have also added to my pharmaceutical cocktail the drug Imuran. Imuran is an anti-rejection drug given to organ transplant recipients and many sufferers of auto-immune disorders. I started that Wednesday night and had some indigestion - common side effect but man oh man - Thursday morning was brutal...
I woke up and could only open my left eye slightly, I went to stand up and fell, I climbed up onto my walker seat and shuffle stepped it to my daughter's room where I was too weak to open her bedroom door. I ended up in a pathetic looking ball until my Mestinon kicked in and nurse wonderful arrived with the IVIG. I am happy to say I feel like a new woman today so hopefully things will continue to progress. The Imuran takes 6-12 months to work in which time (if it works) we will phase out the Solumedrol and hopefully the IVIG....Happy weekend everyone!
Jen
I woke up and could only open my left eye slightly, I went to stand up and fell, I climbed up onto my walker seat and shuffle stepped it to my daughter's room where I was too weak to open her bedroom door. I ended up in a pathetic looking ball until my Mestinon kicked in and nurse wonderful arrived with the IVIG. I am happy to say I feel like a new woman today so hopefully things will continue to progress. The Imuran takes 6-12 months to work in which time (if it works) we will phase out the Solumedrol and hopefully the IVIG....Happy weekend everyone!
Jen
Sunday, February 28, 2010
29 Gifts - I have taken the challange
And invite you to do the same. About a month ago, I was reading a magazine article about a woman close to my age who was diagnosed with MS one month after her wedding. After a downward spiral of negativity, she spoke with a close friend and alternative healer who encouraged her to give away 29 things in 29 days and how it changed her life for the better. I thought it sounded like a good book to check out, unfortunately since I haven't been driving (let alone shopping), I did not make it out to get the book. In truth, I forgot about it altogether.
About a week ago, my Grandmother, who is always thinking about other people, saw an interview with the authot, Cami Walker, on television. She ordered 2 copies immediately, one for me and one for her dear friend Kay who is suffering from chronic pain. I received my copy in the mail on Friday and I devoured it. I decided to take the challenge and signed up online Friday evening. I started my 29 days of giving yesterday and had one of the best days at home that I have had all year.
I encourage you to check it out as well at www.29gifts.org and the first person who shows interest or a need I will give my copy to. I think things happen for a reason and this new way of living will heal me, not cure, but heal. I had a wonderful day yesterday. My gift was to push myself a little bit further and give my family a normal day like we had before I was sick. I did not sit in the recliner all day. I gave my husband time off by doing the dishes (this was a 4 hours project but I did them:), I did the laundry (1/2 of it), gave Cindy a bath, Pat got to take a nap, John had friends over, Cindy and I read books and played games and I just ate it all up. The peace and joy that was in the house, the calm, the absence of worry is priceless. It is truly easier to give from a place of love and purpose and it changes your perspective.
I did pay for it today a bit. I had to sleep a little longer and my right eye is weak but that's pancakes for what I received in return. Happiness and calm in those whom I love more than anyone else on this planet.
i dare you to take this challenge and let me know how it works in your life.
Jen
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