Friday, July 27, 2012

Paying it Forward

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. Lots of love! Jen

Friday, July 13, 2012

The benefits of a breathing machine with Myasthenia Gravis

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

Hospitals, ICU's, Heat, Stress, oh my

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.