About 2 weeks after my last post in October, just before Halloween, I went into the ER with pneumonia. A few days in the hospital on antibiotics led to respiratory failure, my being intubated on a ventilator, and put into a medically induced coma for about a week. This is the first time I've wanted to write about any of this. Maybe because after almost six months of being in and out of the hospital, I finally have a final diagnosis and I feel almost normal - outside of the physical damage that was done.
I officially have Polymyositis with Interstitial Lung Disease. It's a rare connective tissue (muscle) autoimmune disease with breathing issues. No definitive cause is known, but it means I'm on meds my whole life and I'm officially disabled. I can't lift my arms up over my head, and I can't lift my legs at the hip more than an inch or two right now. I'm in physical and occupational therapy to fix this and I hope to be back to normal in the months to come. I just have to stay on my steroids and anti-transplant rejection drugs forever to keep from a relapse. After experiencing what happens without these drugs, I'll gladly take those two and all the others given to me. I couldn't move without massive pain and my hands wouldn't open or close. Yay drugs, boo side effects.
It started with pneumonia. I couldn't catch my breath so I went to the ER. They admitted me, but I didn't get better so I went to the ICU. Just hours after I got to the ICU, the last thing I remember is saying I couldn't breathe and my chest hurt. Then it goes blank until I woke up a week later. My family says they gave me about a 50% of living while I was out. The hospital basically threw everything they had at me to keep me alive. I had crazy dreams from the drugs, and my son is what I remember most from the dreams. I had a tube down my throat and couldn't talk. I wrote on an eraser board the best I could, and a rolled my eyes a lot when I got annoyed, frustrated or angry. I did that a lot. Not being able to talk sucked. I did make a joke to my stepbro with hand motions (that didn't make sense to anyone but me) when I first came out of the coma. At least I kept my sense of humor, right?
Being in the ICU & having lost the ability to do anything on my own was humbling. Remembering the first time I had to stand up from the bed with a nurse's help is what keeps me going now when I get discouraged. Thank goodness for Xanax because that was the scariest moment of my life, after having been mostly immobile in a bed for weeks. Actually, the bill from that time is pretty scary too. My legs didn't work, my arms only moved at the elbow, and I needed help with everything. I'm trying to forget the tubes being removed and the other help the nurses provided. I could never work in healthcare, ever.
I went to the rehab unit for physical and occupational therapy, but the coughing from the pneumonia made everything so hard. Breathing is usually required when you exercise and I was struggling. I finally was able to walk up stairs and do a lot of my basic care and went home just before Christmas, even though I wasn't 100%. I was supposed to finish my rehab as an outpatient. I felt good and ready to go, but no such luck.
A week after getting home, the first week of January, my mom was here helping me and my right arm swelled up. Back to he ER! I had a blood clot in my right jugular. I was put on blood thinners and had to have my blood tested every week. I also would start to wean off the steriods/prednisone and get sick. I was in the hospital every month, if not every other week almost. I finally had to switch to a larger hospital because they'd had more exposure to my first diagnosis of ARDS - Adult Respiratory Distress Syndrome after pneumonia. I've had so many CT's and Xrays of my chest that I glow in the dark. I have about 8-9 DVDs of images from thouse and the ultrasounds to EKGs that it's just ridiculous.
Once I changed hospitals, I got better diagnosis of what was going on, but everyone kept looking at my lungs as the issue. Finally, this last episode of muscle weakness caused such distress that I couldn't even walk. A muscle biopsy was done along with many other tests, and I joke they went all Dr. House on me, but they found out I have an autoimmune disease. Finally! I was just happy to know what was going wrong with my body and how I can manage it in the future. Once I got into therapy, I rocked it and made super progress. Only two weeks in rehab and going from barely walking to being able to take care of myself at home. The doctors are super impressed and I'm really motivated to get better.
Yeah, it sucks I'm now permanently disabled, but it could be so much worse. My meds will help me get better and therapy too. The worst part of all of this? My son having to go live with my ex-husband until the end of the school year. I miss him more than anything, but I know his being with his dad is the only way for me to get well enough to bring him home. I see him this weekend and I can't wait. There so much more I have to say, but it's time to eat and take more meds. Here's to getting better!