Saturday, February 15, 2014
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!
Sunday, February 2, 2014
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.
Thursday, January 30, 2014
Hello 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. Jen
Friday, July 27, 2012
Nothing 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! Jen
Friday, July 13, 2012
After 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! ~Jen
Thursday, July 12, 2012
What 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.
Wednesday, April 25, 2012
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!!