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.
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