tag:blogger.com,1999:blog-43779209832479936002024-03-05T08:12:18.644-05:00Me and MG - Riding the Myasthenia RollercoasterMy story of living with a chronic neuromuscular disease.Jenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.comBlogger85125tag:blogger.com,1999:blog-4377920983247993600.post-7742791238647098632014-02-15T20:43:00.000-05:002014-02-15T20:43:07.679-05:00I made it to the Benefit!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf22Wwh0EGrgYr6Wxi2UGY3fQ87iuOtmDVh5TdC_BYt6pAGO3mRG8kKgyxWx6sS60O0GACMW6u0OaGA3IKV-CBuoRIqKBuYbHpKwYJvKojgl47R3QIeq1bxL0WkQI_S41Yn_Ihr_lRj30/s1600/IMG_1295042530365.jpeg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf22Wwh0EGrgYr6Wxi2UGY3fQ87iuOtmDVh5TdC_BYt6pAGO3mRG8kKgyxWx6sS60O0GACMW6u0OaGA3IKV-CBuoRIqKBuYbHpKwYJvKojgl47R3QIeq1bxL0WkQI_S41Yn_Ihr_lRj30/s320/IMG_1295042530365.jpeg" /></a> I had such a great time. Thank you to everyone who came out and supported us by volunteering, attending, playing. It was fun and overwhelming. I'm still recovering, my Myasthenia Gravis flared and I caught a bug so I am resting. For now...enjoy the pictures!
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifG0uepVo_FMfyTeF6uKk6fnBQZ5eaxS0qibDQ2LpF2aVbBjlU2VI06UnEJAxQoLA6Se5YhLDFRs3itGZ6IaqLk7zxjTiNuVj18_gbRdn9FOosffsF_ddOoYc9iUen2c9vpQ6Ykm0twpk/s1600/2014-02-14+22.32.00.png" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifG0uepVo_FMfyTeF6uKk6fnBQZ5eaxS0qibDQ2LpF2aVbBjlU2VI06UnEJAxQoLA6Se5YhLDFRs3itGZ6IaqLk7zxjTiNuVj18_gbRdn9FOosffsF_ddOoYc9iUen2c9vpQ6Ykm0twpk/s320/2014-02-14+22.32.00.png" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZJc2sddCOo3Tht_HLYbApQjaogyE1FJKGxai0PGAxJ2zgc2QfPTOxsK5CD3-Z7JsQSSGcuXiOnM_Z363eo5DLBVtKuFTLa7UHXUH7ibiG2QsKyCUn6q9YELtXmP9sfuRz3n18h8anw48/s1600/20140213_214949.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZJc2sddCOo3Tht_HLYbApQjaogyE1FJKGxai0PGAxJ2zgc2QfPTOxsK5CD3-Z7JsQSSGcuXiOnM_Z363eo5DLBVtKuFTLa7UHXUH7ibiG2QsKyCUn6q9YELtXmP9sfuRz3n18h8anw48/s320/20140213_214949.jpg" /></a>Jenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com0tag:blogger.com,1999:blog-4377920983247993600.post-81585231632015134452014-02-02T10:02:00.004-05:002014-02-02T10:02:52.756-05:00"You look great today"...umm yeah...Oh how many times have i heard those words uttered? Way too many to count... or you sound great, or "that's a handicapped spot!"...really? I didn't realize that when i put my placard up. Like i want to use the spot. Like i want to HAVE to use the spot.
My entire life, I have struggled with the proper response to compliments. "Did I sound appreciative?" "I hope my thank you didn't sound egotistical."
But now, with an autoimmune disease, I have no idea how to respond. Of course the first two words are easy...a simple "thank you." But then my mind starts going...do I explain that it took hours of rest before i had enough energy to leave the house? Do I go into the intricate details of how i had to instruct my color blind husband where to find my outfit because I was too weak to go to get it. Do i let them know if I'm still in an hour i might look drunk... But I'm not, it's just my stupid illness. My Myasthenia Gravis?
People, most people, don't want to hear all that. So, I usually just say "thank you" and smile my crooked smile. Then i sit and worry... do they think I'm not really sick? Was that a compliment or sarcasm?
I don't want these thoughts in my head but there they are. Front and center. Most people, unless they've seen me during my many hospital stays or when I'm having a flare at home see the horrible disease this is too live with. I hide on those days.
Somethings I can't hide...i can't hide my weight gain or bloated face from the prednisone. I can't hide my left foot dragging. I can't hide my eye when it starts to droop but I do try to hide a lot.
That's what was on my mind today. I hope my post helps others not feel so alone. Jenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com2tag:blogger.com,1999:blog-4377920983247993600.post-91172715867123503332014-01-30T02:30:00.002-05:002014-01-30T02:30:40.913-05:00All Searching for the Same Thing - RemissionHello friends and strangers,
I'm writing this early morning (2:15am) to be precise to address something that was on my mind. Over the 5 years I've been dealing with this pesky illness not many can pronounce I have learned a lot.
For instance, I've learned that not only are each of our disease courses different, each Dr. has his/her particular treatment plan.
I've learned that the city or state you live in can determine not only how you are treated but if you are treated. It's true! I have had friends choking, unable to stand or swallow sent home simply because the area they live in doesn't know how to treat myasthenia.
I've learned that relying on others for assistance is no longer a choice but a neccessity (very difficult for someone with a type A personality).
I've learned that in order to say yes to one person or activity,I have to say no to another. This has also taught me that saying no is a lot easier than I thought it would be.
Lastly, I've learned that some of the most important people in my life are people I've never had the chance to meet face to face.
I hope while you are on your journey you are able to learn something too. If you do, please share in the comments section.
JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com0tag:blogger.com,1999:blog-4377920983247993600.post-83264442589357682182012-07-27T09:52:00.001-04:002012-07-27T09:52:22.707-04:00Paying it ForwardNothing feels better than being able to pay it forward. We were recently blessed with the generosity of friends, family, and even complete strangers.
Today I ask you to view the link below and look into your hearts. You may donate online, mail a check (email me for Kerri & Doug's address), or at the very least, please share the link with friends and family, on Facebook, or on your blog.
www.giveforward.com/rallyforkerri
Lots of love!
JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com0tag:blogger.com,1999:blog-4377920983247993600.post-64259611567496475442012-07-13T07:57:00.002-04:002012-07-13T07:58:58.843-04:00The benefits of a breathing machine with Myasthenia GravisAfter two and a half years of living with this illness, my pulmonologist said, your diaphragm is so weak, you either need a Bi-Pap or a treach.
So, I swiftly booked a sleep study to try to get the machine. Thankfully, I had enough "events" to get the machine.
I love my bi-pap! Yesterday I was so weak I normally would go to the hospital, but I was able to use my bi-pap. What a great alternative! While I'm still run down today, I am hopeful with continued rest I wont wind up back in the hospital.
In other news, I have had to file for SSDisability. I know, I should have done it long ago...but I'm stubborn and hopeful. I wanted to try to keep working and hoped for a remission. That's not in the cards. We have amazing friends who are running a fundraiser.
Pray for our family I have been the sole source of income for our family and it
is hitting hard. Some resources aren't available to us since we have a land contract vs. a regular mortgage.
Anyway, I am again overwhelmed by the kindness of friends and strangers. We will get through this, we have to!
Did I mention that voice recognition software is awesome, except when you have a slurry voice..well, that is it for today, my eyes and speech are going. I wish you all a wonderful, strong day!
~JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com5tag:blogger.com,1999:blog-4377920983247993600.post-86269173389674402032012-07-12T09:06:00.001-04:002012-07-12T09:06:23.940-04:00Hospitals, ICU's, Heat, Stress, oh myWhat a summer! Michigan for 30 days close to or over 100 degrees? Yes, that landed me in the hospital.
May was an interesting month. I was denied Rituxan by my insurance, because MG is an off label use of the med, even though there is mounting evidence that it works...
So, my neuro scheduled me for a port surgery in Ann Arbor and 3 weeks of Plasmapheresis in Ann Arbor.
In a swift 1-2 punch, one week after the last treatment, I recieved a denial letter from my insurance company on the Plasma treatments, at times I feel they send me these letters just to make my condition worse and shorten my lifespan...I know, dark but that is where I am at.
Then in June I tried to return to work:
Day 1 - almost 100 degrees, worked with Bi-Pap on as breathing was week, took many breaks
Day 2 - recieved IVIG treatment, still going downhill, still on Bi-Pap 24/7, managed to work 4 hours when I lost consciousness...I chalked it up to the heat and planted myself in front of the air conditioner
Day 3 - Woke up, no voice, no vision, off to the ER, and was admitted to ICU, my NIF was 11. It used to be anything under 20 and you were put into a coma and intubated. Thankfully I had read numerous reports that Bi-Paps were being used on Myasthenics in the ICU setting as a successful alternative to intubation and I was able to avoid the vent.
5 days later - Discharged but still very weak, doctor ordered rest and follow up...
Then the lovely anemia caused by the Myasthenia flare ups. I saw my hemetologist last week Thursday and had an emergency blood transfusion.
Friday was off to the neurologist to see when I can return to work. Well, it doesnt look like that is going to happen. He said we are playing with your life now and you have exhausted all of the treatments, what you need is rest. I agree, I am one tired girl.
I am very thankful to the doctor's and nurses at Blodgett hospital who cared for me and saved my life.
Now we just have to make it through the next few months while the government decides what to do with me.Jenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com0tag:blogger.com,1999:blog-4377920983247993600.post-27390209963475431742012-04-25T16:48:00.002-04:002012-04-25T16:48:42.872-04:00You Might Be An MG'er If...This was shared by a dear friend of mine, Sandy. He gave me permission to share. This is what it is like to live in our shoes...
You Might be an MGer if?
You have a lot of trouble or need assistance in getting up from a kneeling, squatting, or being seated.
You (or your arms) get unbelievably tired from just washing and/or drying your hair or touching your face.
You have trouble lifting your foot up to step onto a curb, step, or ANY bump or rise, even in the floor.
You find that you no longer have good balance and wobble all over the place like a child's toy.
Even though you are no longer a child, you wake up with drool all over your pillow.
You want to put a note on your front door saying "My house is a mess because I don't have the energy to clean or pick stuff up".
You get tired just standing at the kitchen sink, in line at the store, talking to friends, etc.
Holding your arms up to read a book or the newspaper feels like you are trying to lift 100 lb. weights.
You get worn out from the repeated sitting and standing you do in a church service.
You have trouble rising to a standing position from a regular height chair.
Your cheeks/jaws get quickly worn out from talking OR chewing.
You have trouble raising your head from the reclining position after the beautician or barber washes your hair OR when you are simply lying down in bed.
Even though you have NOT been drinking, you stagger and weave like a DRUNK.
You choke on your own saliva.
Food gets caught in your windpipe and you have to cough vigorously to get it out.
Washing windows, writing on a chalkboard, holding a steering wheel to drive, and other tasks that involve raising your arms in front of you are things that you find impossible, extremely difficult, or totally exhausting.
Laughing hard gets you so totally out of breath that you must rest to recover.
You trip over the tiniest things, even the CARPET, because your feet don't go where you "tell" them to.
You can no longer whistle or blow up a balloon.
You slur your words after a couple of minutes.
You get out of breath when having a "good" cry.
You run out of breath before you finish saying a sentence.
You don't have enough breath to clear your nostrils when you blow your nose and this seems to lead to sinus infections.
You have trouble getting a firm grip and end up dropping or spilling things.
You find that writing notes to people is easier (takes less energy) than TALKING.
Sunlight and bright lights bother you and sometimes increase your other symptoms.
Singing has become difficult or impossible.
You find yourself constantly clearing your throat.
You notice your heart beating rapidly after the slightest effort.
You find yourself sweating profusely without any apparent cause.
Water or other liquids come out of your NOSE when you drink.
Chewing gum is next to impossible or WEARS you OUT.
Turtlenecks and other clothing with collars make you feel like you are choking.
Any kind of temperature extremes makes you worse – hot/cold food, hot/cold drinks, hot/cold rooms, hot/cold weather, hot/cold showers/baths, etc.
You see double after a few drinks……..and then realize they were NOT alcoholic!!
You are trying to adjust your eyes, one at a time (double vision), and someone nearby thinks that you are WINKING at them!!!!
Walking up stairs is next to impossible.
After reading a page or two in a book or magazine, everything becomes blurry.
Your mouth or throat will not even let you YAWN when you are tired.
A change in weather leaves you weak and short of breath.
You sit down to eat and cannot manage to bite through your food to chew it.
Your neck wobbles around so much that you either use your hand or arm to support your chin OR wish that you had a neck brace.
You use your hand on your chin to help you chew OR to keep your mouth closed.
You have to call someone to help you get OFF of the toilet.
You have totally unexplained dizziness.
You feel like your teeth have shifted -- changing the way that you chew and making you sometimes bite the inside of your mouth.
You have had an "accident" that caused you to abandon a pair of underwear.
You feel like it SHOULD be acceptable to eat from a trough because the food is going to fall out of your mouth anyway.
You are on a FIRST NAME basis with the local EMTs and ER staff.
Putting on socks, panty hose, or long johns is a "Kodak" moment and leaves you sweating, frustrated, and totally wiped-out.
Dressing in "layers" makes you feel like you have put on a straight jacket.
You've left blood and skin samples on sidewalks all over town.
When you get "that look" on your face, family and friends get out of the path to the bathroom.
Fatigue so overwhelms you that even putting up the dishes requires SEVERAL rest breaks.
Mouthwash is no longer useful because you cannot GARGLE!!Jenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com0tag:blogger.com,1999:blog-4377920983247993600.post-22688941425153212842012-04-09T16:08:00.002-04:002012-04-09T16:14:52.214-04:00Reality Check<a href="http://3.bp.blogspot.com/-pnnjNm67rIE/T4NCEkw_rOI/AAAAAAAAAFY/iMpjILaZ2Jw/s1600/candle.bmp"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 259px; height: 194px;" src="http://3.bp.blogspot.com/-pnnjNm67rIE/T4NCEkw_rOI/AAAAAAAAAFY/iMpjILaZ2Jw/s320/candle.bmp" border="0" alt=""id="BLOGGER_PHOTO_ID_5729495797301488866" /></a><br /><br />Today I blog with a heavy heart. Two dear friends and fellow myasthenics passed away in the last week. It just hits home how serious this illness is. My dear friend Steven who rallied around all newly diagnosed patients to give them the nitty gritty no holds barred what to expect version of this illness and Julie, always ready with a laugh or a joke. She, like me, continued to live and work with this illness beyond what some would consider common sense. She just worked on Friday.<br /><br />This is not an illness that slowly eats away and and then the doctors say, get your things in order, say goodbye. Yes, we know we are ill everyday but we also know people who go into remission, people who have MG in their 80's even 90's and we hold onto that.<br /><br />I pray for that for all of my friends with this disease but this week reminded me what an infection, a swallow down the wrong tube, or a new medication can do to us. Steven and Julie lived life to the fullest with this disease and I dearly miss them both. I know they are free of the burden of this illness but Myasthenia robbed both of them of a goodbye.<br /><br />Goodbye my friends ~ See you on the other sideJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com1tag:blogger.com,1999:blog-4377920983247993600.post-76996993337206337862011-12-30T08:45:00.002-05:002011-12-30T09:13:02.394-05:00Reflections on 2011<a href="http://1.bp.blogspot.com/-4Rv_ah6k_eE/Tv3AsQcYpOI/AAAAAAAAAFM/lv1WaPz4Q3U/s1600/happy%2Bnew%2Byear.bmp"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 133px; height: 100px;" src="http://1.bp.blogspot.com/-4Rv_ah6k_eE/Tv3AsQcYpOI/AAAAAAAAAFM/lv1WaPz4Q3U/s320/happy%2Bnew%2Byear.bmp" border="0" alt=""id="BLOGGER_PHOTO_ID_5691917370626974946" /></a><br />Wow, what a year. When I think back I can't believe that this time last year I was unemployed and battling insurance companies to have my thymectomy. Compared to the battles fought and heartache I went through I would say this year is much better.<br /><br />This year as the New Year approaches I am sitting comfortably at home with an amazing new employer, I have made friends across the continent and globe for that matter that mean so much to me and I would not know were it not for this illness, I have recently been elected to our local Myasthenia Gravis Foundation Chapter's Board of Director's, I won <em></em>The Coraggio Award<em></em> at the Annual Myasthenia Foundation's meeting, I survived my thymectomy and while I spent too much time in hospitals this summer it has been months since I have had a crisis. I was also honored to be asked to speak to a group of 200 pre-med students at Michigan State University and was interviewed on the radio. For not getting around much I sure made a footprint!<br /><br />This year I am so thankful for my Doctor's who believe in me and trust me and work with me to be as healthy as I can. My physical therapist and therapist who push me just far enough to keep my physical and mental strength at their peak. My family, friends, and even complete strangers who have helped with rides, companionship, finances we are So Blessed! And I can't wait to pay it forward!<br /><br />Looking forward my hope is to heal more, to go into remission, should that not be in my cards then I wish for my Illness to continue to be a vessel. To educate, comfort, and support others going through this. My biggest wish for this year is for Pat to successfully complete his Software Engineering program at Ferris. He so wants this and I am so proud of how far he has come.<br /><br />To all of my readers, thank you for your love, your support, and your prayers. A very Happy Healthy New Year to you all!<br />JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com1tag:blogger.com,1999:blog-4377920983247993600.post-31462271674703677692011-12-29T10:44:00.003-05:002011-12-29T10:51:52.433-05:00Forgiving myself for things I cannot control.In the spirit of the New Year I am going to try to get out of my funk and get over myself. I am who I am and I cannot help the fact that I have this disease, but I can choose how to respond to it. More times than not I find myself apologizing for the fact that I cannot walk or talk or go out or see. Is that how I would treat someone else with a severe illness, expect an apology? Goodness no! and yet I find myself saying I am sorry everyday, in fact sometimes I weep.<br /><br />You see, not too long ago I was the go to girl, the party planner, the social butterfly, the Yes I Can Woman. Now I cannot drive, many days I cannot speak, sometimes I can't even lift my glass to take a sip of water, and that is if I can swallow. But the crazy part of this illness, called Myasthenia Gravis, is that there are parts of every day where I can do most things. As long as I don't overdo it I can make it through one day at a time.<br /><br />I am not saying that 2012 will not have it's share of hospital stays and treatment reactions. What I am saying is I will accept myself for who I am. I will not apologize. I will love myself and I will give what I can. That is all I can do and I am darn proud of how far I have come.<br /><br />Each of you are special and each of you still has something to learn and to offer. Embrace it! You mean something! You are not your disease!<br /><br />Love and Peace,<br />JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com1tag:blogger.com,1999:blog-4377920983247993600.post-37411625743505630032011-12-27T09:40:00.002-05:002011-12-27T09:46:45.859-05:00My dirty little secret, exposed..Oh the humanity!<br /><br />While it is no secret that I have Myasthenia Gravis (due to the blogs, vlogs, being on the board, etc...) I don't like people to see me symptomatic. In part because I don't like having to explain over and over again, and in part because I do not want those nearest and dearest to me to see how much I truly endure. If I time it right, they just think I have a neuromuscular illness they can't pronounce that sometimes makes my eyes and mouth look funny and at times makes my foot drag.<br /><br />Well here are the last two weeks in a nutshell...it was "get over yourself Jen" bootcamp. 1.5 weeks ago, went shopping with Pat and fell out of the electric shopping cart, yes I fell out of the cart while reaching for benedryl (my IVIG premed). I was mortified, I am really much weaker than I thought.<br /><br />This past weekend we had my brother and sister in law stay with us for Christmas. All went well with me going to sleep before the symptoms hit full force until the last night. I got so bad I was choking on my saliva, couldn't walk straight, and Pat went to bed before me so they had to help me get to bed and saw the dreaded bi-pap that I hide.<br /><br />I almost ended up at the hospital again as I stopped breathing multiple times but pat was able to wake me enough to prompt the machine to breathe for me. So now what? I don't know, working today, seems foolish but we need the income. For those of you who pray, I could use some.<br /><br />Love, health, and happiness to you and yours as we approach this new year!<br /><br />JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com0tag:blogger.com,1999:blog-4377920983247993600.post-37289126270855155882011-12-02T10:53:00.002-05:002011-12-02T10:59:42.219-05:00Up, Down, Round, and RoundSo the rollercoaster continues. This week certainly had it's shares of ups and downs. I thought I was headed for a full blown crisis on Tuesday. Thankfully the respiratory therapist and my doctor agreed that changing my breathing machine would help and I avoided another lengthy hospital stay. <br /><br />I have had quite a bit more pain as well, that seems to happen each time I experience a flare. By the end of the day my wrists just ache and shake from typing all day. My neck hurts and is too hard to lift. Walking...out of the question most of the evening, my feet just drag. I can handle all that as rotten as it sounds but the breathing and swallowing issues have to go!<br /><br />I am having a hard time swallowing the pills that make me strong enough to swallow pills, how ironic is that? I feel like there is a pile of bricks on my chest. I just want to breathe.<br /><br />Where are the ups? Oh yes, I had a wonderful week with my new found family of flakes, much laughter. Even through the ups and downs of this wretched disease, I have a caring and understanding employer who allows me to rest and regain my strength. I continue to be overwhelmed daily by the donations...thank you so much! I am truly blessed..Peace and Happiness to you and yours this 1st December weekend - JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com0tag:blogger.com,1999:blog-4377920983247993600.post-4510612086233852882011-11-25T07:05:00.003-05:002015-11-25T22:03:30.570-05:00On Holidays with Myasthenia.....<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDUtugBVZlnsyUR76EjIDYoOARir_DVQx0Mgmc_x_oHLFqgEUzlL4BglrLhBFJ27_f1b4J3_FzJyuhBGgTPn5HEGtddQS3howzjyRSuNQWmGF2ubc9HOus56MIQ7uwS5rMyGyEEZ0ymGQ/s1600/20151031_113849.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDUtugBVZlnsyUR76EjIDYoOARir_DVQx0Mgmc_x_oHLFqgEUzlL4BglrLhBFJ27_f1b4J3_FzJyuhBGgTPn5HEGtddQS3howzjyRSuNQWmGF2ubc9HOus56MIQ7uwS5rMyGyEEZ0ymGQ/s320/20151031_113849.jpg" /></a></div>For those of you with Myasthenia, you know why I chose this photo. For those of you without, it is to give you a sense of what it feels like to walk in our shoes all day every day. It is like walking against the wind. Perhaps that gives a better perspective as to why we look normal in the morning and by evening everyone around us is telling us to "sit down" and asking "do you need help?" and "are you alright?"<br /><br />These are all kind questions and we get used to them, however with someone battling the same roller coaster day in and day out it can be overwhelming in large quantities. I was always one to like the spotlight, I used to sing onstage for crowds, I enjoy public speaking...yes I am strange like that and no I don't claim to have the "moves like Jagger." But back to my point, while concern is kind it is not the type of attention I like or am comfortable with.<br /><br />So this is how yesterday went for me:<br />6:30AM - 3:00PM - Worked, not too busy but enough to not be boring <br />4:30PM - ate a fine dinner prepared by my hubby and kids (I helped with the bisquits)<br />5:30PM - feeling pretty weak but not wanting to let anyone down went to my in-laws with Cindy<br />6:30PM - started feeling the dreaded full on weakness wave (the fact that I couldn't speak louder than a whisper by 5:00 should have been a clue but I am still hard headed an yes a bit in denial)<br />7:00PM - asked for a ride home...at this point I couldn't lift either foot off the ground, was full on slurring my speech, and one eye was half open...this is when the barrage of concerned questions came about and also the time I just wanted to crawl into my snail shell and hide.<br />7:30PM - Home...safe...recliner...life is good (or the same as it was yesterday)<br /><br />Which brings me to the next topic I wanted to cover: I have lost the ability to assess myself.<br /><br />As I have become more ill, I have avoided more outings, I am less social (well in the physical sense, I certainly make up for that on the phone and online) but I used to go out with friends all the time. So I am home and I accept my limitations and do what I can when I can, then I rest and I don't really take stock in how/when I am feeling weak like I did at the beginning of this illness. But the reality is (I realized last night in response to said concerned remarks) I am a wreck every single night. There isn't one day that goes by that I don't have double vision in the evening, lose the ability to speak like myself, lose the ability to lift things heavier than a water bottle and sometimes that too. <br /><br />I am writing this post because last time I saw my neuro I told him things are going well, they are the same. Well they really aren't if I am honest. I am getting worse, slowly but surely, and I am just sitting here accepting it. Well I tell you what, I am not ready to give up the fight...I still have a chance at remission and gosh darnit I am going to fight for one.<br /><br />So family and friends, that is what a Holiday is like with MyastheniaJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com2tag:blogger.com,1999:blog-4377920983247993600.post-86224435795072066582011-11-21T07:04:00.003-05:002011-11-25T08:42:24.196-05:00I feel like George Bailey..While my life with illness has been an open book on my blog I am very secretive when it comes to my family and my finances. At any rate, things have gotten very difficult at home (gulp, can you hear me swallowing my pride), with surprise dental issues with the kids and more (yes more) hospital visits from me, and a surprise increase in our monthly mortgage...well we hit a wall.<br /><br />My sister, my amazing sister, set up a fundraising page for my family and I am just overwhelmed by her kindness, the kindness of strangers, and of family and friends. I think we just might make it through the holiday season.<br /><br />Pat has been amazing, cleaning, cooking, going to school full time, and being a full time chauffeur to the kids and myself (with all my doctor's appointments I don't know how he has time to study or sleep).<br /><br />Since it is Thanksgiving week I just wanted to say how thankful I am for my wonderful family, friends, family of "Snowflakes", doctors who love and listen to me, and in thankful memory of the most wonderful mom a girl could ever ask for. She was only 47 years old when cancer took her from us. So, thank you Lord for surrounding me with good, caring, and loving people!<br /><br />Here is the link my sister set up, her words make me tear up everytime I read them:<br />http://www.giveforward.com/mgjensupporters<br /><br />Love,<br />JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com0tag:blogger.com,1999:blog-4377920983247993600.post-61111622843909158102011-08-24T10:55:00.003-04:002011-08-24T12:21:55.619-04:00Sound off on Insurance companiesFirst, I must say I am thankful to have insurance, it is true, I am. However, I do not think they realize the extent to which I loathe their practices. Nor am I naive enough to think they care what I think, but this is my sounding board so I will speak my truth and be done with it...get it off my chest because I am not a happy camper at the moment.
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<br />For those of you with serious chronic illnesses you are aware that managing your insurance/doctor's appointments/referrals/prescriptions/etc...is a Full Time Job. A job without pay, a job that only creates stress and awe at the purposeful lack of common sense and ignorance coming from the decision makers. What never ceases to amaze me however is the fact that I know they are trying to reduce their spend but while they dilly dally over comparatively inexpensive medication approvals or appointment approvals, I end up hospitalized and another $15,000 - $25,000 is in the hole for the insurance company...all which could have been prevented mind you if they listened to my doctor in the first place.
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<br />This weeks fun all began with a change in my IVIG dose and frequency. Instead of 40 grams every 10 days my doctor wants me back on 30 grams every 7 days. given the fact that this worked well in the past and I have been in the hospital 2 times in the last 30 days it is the best that can be done to control my illness. So...last week, my home infusion company called to let me know they would send my nurse since I already have the medication and hopefully the authorization would be through by the time I needed my 2nd treatment.
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<br />I coordinated with my nurse and everything was set for 1:30pm yesterday. Now, you have to understand what is involved in prepping for a treatment. Every time I have IVIG I take benedryl and pain medicine an hour before and I use lidocaine to numb the skin covering my port. This leaves me very drowsy and I am allergic to all tape known to mankind so I also wind up a bit itchy from covering the lidocaine.
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<br />Sometimes my nurse runs late because of another patient so I patiently awaited her arrival...that is until about 2:15pm when I started nodding off. Not wanting to be rude I waited until 3pm, at this point I was ticked that she hadn't called but thought, maybe something was wrong. When she answered she was surprised that no one had called me...they decided not to do my treatment until insurance approved my change in treatment...it is a lower dose so it is actually the same price as what they approved previously.
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<br />So I called my doctor, the pharmaceutical company, my infusion company, and my insurance company. By 5pm they agreed to give me my treatment so I don't end up in the hospital but now I have one week for the insurance company to come through and approve treatment or I am left hanging. I don't have the energy to call my insurance company today, I am already weak and I am worried the stress will make me sicker so...I will call tomorrow..yikes! And that is today's 2 cents.Jenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com1tag:blogger.com,1999:blog-4377920983247993600.post-14277084623529440042011-08-22T12:38:00.003-04:002011-08-22T13:28:28.238-04:00On working..living...staying out of Club Med...Well, those of you who know me are aware that big changes have been happening in my life. First, at about the same exact time I started a new job working from home, I had my first appointment with my neuro at U of M since my surgery. At that time I had been off work for 9 months and had 3 months under my belt since my surgery. I was feeling better than I had in a long time. I still struggled with daily weakness but the length and severeity was reduced and I hadn't had a breathing crisis in months. Compared to an average of 4 times a year that is a milestone.
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<br />At any rate, my neuro decided to space my IVIG to every 10 days and reduce my predinsone as well. I thought !wonderful! but was foolish in not taking into account what a life changer working 40 hours a week was going to be. I thought "hey, you used to carry an oxygen tank and had no meds, you can certainly work from home feeling as good as you do now" Well I am a bullheaded 10% Sicilian and if I set my mind to something that is that:)
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<br />It took about 60 days and me dragging my foot, slurring my speech, tired as all get out to end up in the hospital with a full fledged crisis. For those of you who don't know what a myasthenic crisis is, it is when the muscles used for breathing and swallowing are too weak to work. I was aspirating on my own saliva and could not catch my breath. My husband saved my life because it all happened while I was sleeping. Not a good way to start the day.
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<br />Of course when I was feeling stronger and could speak my doctor's at the hospital asked what I thought set off the crisis. I said...must be the heat, and we had some car trouble, and my meds have changed. Not once did I admit that I was not strong enough to make it through a full workday...that would go against my very nature. In my head I am superwoman but in my body I am gumby...or Mr. Bill, depends on the day!
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<br />So I tried to go right back to work but that was stupid, I was seeing double and sounded like a drunk sailor. I ended up taking a week off to rest and felt better. I was back on all of two weeks when the same thing happened. BAM! In my sleep, couldn't breathe, Pat waking me up by shaking me and telling me to breathe.
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<br />This time I have to say I saw it coming. Every day by six I had a hard time catching my breath, talking, reading, thinking. By eight pm (the time my shift ends) I felt like I had sand bags on my shoulders and as if I were walking through quicksand. I called my neuro and asked if I could go back to weekly IVIG but he wanted to try upping the prednisone first. I did that but obviously it was not enough. I ended up in Club Med a 2nd time.
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<br />I have to say in all the years since diagnosis, I have always had crises during my waking hours and could always see them coming. Of course I now know I let it get too far and lost how in tune I was with my symptoms. So, I will now be back on the weekly IVIG and the higher prednisone dose until I see my neuro in October. My local neuro will see me next week to go over what happened and discuss my work situation.
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<br />So here I sit, contemplating what is the best thing to do. If anyone has the magic answer I would love to hear it. Currently I am back from a week off and am putting in 1/2 days. I really want to work but I know that want is not always should. I tow a fine line between doing too much and doing so little I start to go bonkers so if you have any pearls of wisdom please keep that in mind. I am giving it the third round of the old college try but I want to be here for my kids and what I was doing before put that in jeapordy...jen...signing out for now!
<br />Jenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com1tag:blogger.com,1999:blog-4377920983247993600.post-55244037376891528172011-04-18T08:51:00.002-04:002011-04-18T08:59:32.384-04:00Patients, my dears...patienceAs anyone with MG or caring for a loved one with MG knows, Patience is crucial, though quite possibly the most frustrating parts of the illness! Ask me the most difficult aspect on a bad flare up day or worse during a crisis and you might get another answer but most days it is patience.<br /><br />Patience for test results and with skeptical or downright mean docs in the beginning.<br /><br />Patience with your body daily.<br /><br />Patience with your meds to work.<br /><br />Patience to see if your thymectomy put you in remission..aha, you knew I was going somewhere with this;)<br /><br />While I am not there yet, I am happy to report that I am healed up quite well with three tiny scars to boot. A little scar tissue pain and neuropathy type pain from time to time but nothing awful. I am still struggling with daily symptoms but I am just trucking along like usual trying to live as normal a life as possible.<br /><br />I am excited for our local MG Chapter's annual fundraiser..the 5k in May. I will post a link here to donate for all who are interested. As you know if you are reading this blog, it is a very worthy cause...love, Jen<br /><br />http://www.crowdrise.com/JenWalshJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com3tag:blogger.com,1999:blog-4377920983247993600.post-71653951295549404482011-03-03T03:56:00.002-05:002011-03-03T04:06:57.995-05:00To hell and back, My Thymectomy...Yes, it was the scariest hospital stay of my life, and I have had some doozies! I am battling a night of insomnia and thought my faithful readers deserved an update as to why it has be so long since I have posted.<br /><br />WARNING - This is a long and graphic story but I think the help it may give others outweighs the disturbance it may cause so be warned before reading.<br /><br />CONFESSION - I am too weak and tired to type this out so I am cut and pasting from my post in my MG support group, but the story doesn't change so here goes...<br /><br />Thank you all for the well wishes. There were a few errors at the hospital <br />so I think my story is not the norm but I am an honest gal and hopefully my <br />story will help others avoid difficulty. With that said, I thought all my <br />bases were covered prior to surgery. I met with the neurologist and he sent <br />orders for IV mestinon during the procedure, 24 hours of ICU observation <br />following surgery, and a neuro and respiratory therapists following me for <br />the duration of my stay. Here is what really happened. <br /><br /><br />Day 1 - arrived at 5:30, took my last oral mestinon, spoke with the surgeon <br />and anesthesiologist and went to surgery at 7am. At 12 noon, I opened one <br />eye in ICU, the other would not open and I could not speak well at all, the <br />anesthesiologist and nurse were hovering over me very concerned and I <br />motioned for them to come close. I was able to get out "put mestinon under <br />tongue" before I lost the ability to speak. The nurse ran and came back in <br />a flash with the mestinon. 15 minutes later I could speak. They were <br />floored by how quickly I turned around. I asked about the IV mestinon and <br />the anesthesiologist said it wasn't in the orders....urgh!!! <br /><br /><br />Then they sent me to a regular recovery room on the heart center floor. My <br />pain was well managed through the epidural. Oh, I had the Da Vinci surgery <br />by the way. <br /><br /><br />Day 2 - Had a bad nurse who didn't come on time for my mestinon. The <br />second time this happened I was headed for crisis and again the mestinon had <br />to go under my toungue. I was pretty loopy from the pain meds and was <br />having a hard time assessing my own condition. When the PA from the <br />surgeon's office came in I inquired about pex and she didn't know what I was <br />talking about. I asked her to check with the surgeon. The rest of the <br />evening was uneventful. I even took a few walks. As far as the spirometer <br />(the breathing tube to keep the lungs healthy) they told me to do what I <br />could tolerate which was 2 inhales about 4 to 5 times a day. <br /><br /><br />Day 3 - Really feeling weak in my whole body. I saw the PA that morning and <br />said I am really concerned and would like to see a neuro. She said she <br />would relay this to the doctor. 4 hours later I sounded drunk and my eyes <br />were really going. I told my nurse I was getting very close to a full blown <br />crisis and something needed to be done. <br /><br /><br />She checked my chart and saw that the PA typed "pt looks stable, no signs of <br />weakness, no need to consult neuro" Well I started crying, terrified for my <br />life, the nurse was ticked, and so was my sister. My sister paged my neuro <br />at the University and the nurse paged my local neuro. My University neuro called my room and I told him what was going on. He was livid and took the hospital <br />neuro's phone number and said if he didn't speak with him w/in the hour I <br />would be airlifted to Ann Arbor. <br /><br /><br />Before I had the chance to hear back my throat closed off completely and I <br />could not swallow. They were suctioning my secretions while I communicated <br />on paper with one working hand and one barely open eye. They put a mestinon <br />under my tongue and 45 minutes later my throat opened, then the neuro ran in <br />the room. He was at the other hospital and could not believe how long it <br />took for someone to contact him. He brought the PA in and chastised her in <br />front of me. They brought respiratory in and my NIF (diaphragm strength) was 20 (one point above the protocol to ventilate). I also couldn't move my head at all. <br /><br /><br />The neuro said they were moving me to ICU and would start PEX asap. He said <br />if I went any further downhill I would be put into a coma and vented. When <br />I arrived at ICU they said my hemoglobin was 6 and that was too low for <br />PEX. I had a blood transfusion and they started IVIG. <br /><br /><br />Days 4 - 5 - <br />Stayed in ICU and NIF increased to 25, Hemoglobin rose to 9. Four more days <br />of IVIG scheduled. <br /><br /><br />Day 6 - <br />Moved to regular room, NIF at 30, Hemoglobin still 9. They ordered another <br />transfusion. <br /><br /><br />Day 7 - <br />Potassium low, had to drink potassium and developed thrush from the <br />antibiotics. Feeling much stronger but still 50% of the strength that I <br />entered the hospital with. <br /><br /><br />Day 8 - <br />All numbers normal, got to go home!!! Will have visiting nurses for a <br />month....boy am I tired! <br /><br /><br />The pain is getting better every day. My thymus was normal size but <br />abnormal pathology - Follicular hyperplasia...yeay!!! My neuro says this <br />gives me a better shot at remission and I will hold on to that hope. <br /><br /><br />All in all I am thankful I had the surgery but know my neuro was right in <br />recommending I have surgery at his hospital and not here where I live. <br /><br /><br />If you are still reading this, thank you! <br />JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com6tag:blogger.com,1999:blog-4377920983247993600.post-77178348049000088782010-11-29T09:06:00.003-05:002010-11-29T09:16:01.825-05:00Fun WeekendThis 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!<br /><br />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.<br /><br />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:)<br /><br />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???<br /><br />Blessings to you and yours,<br />JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com2tag:blogger.com,1999:blog-4377920983247993600.post-53743250841356961392010-11-19T14:32:00.002-05:002010-11-19T14:44:33.143-05:00Never a dull momentWell 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Ta Ta for now and happy Friday!<br />JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com1tag:blogger.com,1999:blog-4377920983247993600.post-84508088230383852132010-11-08T09:59:00.002-05:002010-11-08T10:06:58.064-05:00A busy week aheadSo 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.<br /><br />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.<br /><br />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.<br />JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com1tag:blogger.com,1999:blog-4377920983247993600.post-16807021587472056622010-11-05T14:30:00.002-04:002010-11-05T14:52:55.926-04:00Another 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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:)<br /><br />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.<br /><br />I hope this helps someone. For now, I rest and recharge. Stay strong.<br />JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com1tag:blogger.com,1999:blog-4377920983247993600.post-11445779186477623492010-10-18T09:13:00.002-04:002010-10-18T09:21:05.250-04:00The 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.<br /><br />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!<br /><br />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.<br /><br />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...<br />JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com1tag:blogger.com,1999:blog-4377920983247993600.post-12119820159468031202010-10-06T09:34:00.002-04:002010-10-06T09:42:54.871-04:00Report on the PortHi 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.<br /><br />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!!!<br /><br />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:)<br /><br />That is about it for an update, I hope you all find yourselves well and happy and strong!<br />JenJenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com1tag:blogger.com,1999:blog-4377920983247993600.post-62826522445712379022010-09-16T09:37:00.002-04:002010-09-16T09:54:24.405-04:00Med 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...<br /><br />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. <br /><br />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. <br /><br />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.<br /><br />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.Jenxr77http://www.blogger.com/profile/12608233263313831379noreply@blogger.com2