Yes, I have Cystic Fibrosis. Yes, It's mostly known for the damage done to our lungs. But, it's not JUST a LUNG DISEASE.
To be honest, when I was younger I had more serious GI (stomach) issues than serious lung issues. I've had many, many surgeries where part of my intestines were removed (I only have 60-70% of my intestines left). I have/had liver struggles, bone/joint issues, reproductive issues, and more. Also, I have mild cerebral palsy ( diagnosed at age 3). For my CP, I did lots of physical therapy, wore a leg brace for 10+ years, and see an eye specialist. I had surgery on both my eyes to cut and tightened my eye muscles a couple years ago. So, yes... while overall I struggle the most with my lungs, it changes day- to-day.
Some days I do my meds and have no issues. Some days I have stomach issues, some days my joints hurt, sometimes my allergies are causing me to cough a lot. It just depends. One issue I have never "officially" had diagnosed is my Arthritis. CF-related Arthritis is rare and not like other normal types of "arthritis." So it is difficult to find a Rheumatologist that fully understands the CF side of the equation. It started when I was young. My joints would freeze up and I'd be in unbearable pain if I moved. I'd get mild fevers and sometimes spots would appear on my body (mostly legs).
I have always rested, tried not to move, and took ibuprofen when the flare ups occurred. That was the only plan I had. Doctor said it would suffice. But, now it's harder. Being an adult... with these flare ups make it a lot different and more difficult. I can't just lay around for 3-5 days when a flare up occurs. This last flare up was almost TWO WEEKS! I have kid(s), home, job... So I called my doctor at Cystic Fibrosis Clinic and asked for another referral. I'm not super optimistic this time around. I have been to THREE different Rheumatologists in two different areas of Illinois and they all tell me same thing: well since you aren't flaring up at today's appointment, we can't do anything... You have a decent pain tolerance, maybe just feel fortunate it's not every day..
Yes, I'm VERY grateful. But, it doesn't just hurt to use them, I physically am unable to use them. They physically freeze up and have limited mobility. How can I work, type, write, pick up my kid? How is that okay to just deal with it? The doctors usually offer pain meds, which I always turn down. I don't want pain meds. I want to get an actual diagnosis and plan to avoid these flare ups and get them under control when I do have them. I don't want to mask the pain, I want to solve the problem.
This has been 22 years and counting.... I'm ready for answers and a game plan!!! My first appointment will be mid-July. Here's hoping to someone actually taking the time to figure it out!!!!
For me when my fingers or elbows lock up for a few seconds the pain is bad enough. I can't imagine what it must be like for your joints to freeze up for extended periods of time. Tried to look up research on cf related arthritis. But not much info to be found. And most of what there is outdated. What I found on joints locking or freezing is caused by bone rubbing on bone due to wearing away of cartilage. Cortizone injections may help. Saw the movie Five Feet Apart thought it was very good. Although I don't know how easy it would be to have a clandestine birthday party without anyone finding out. Or walking out of hospital to see the lights without anyone noticing. Well hope you are able to get help with your arthritis. Looking forward to cf walk on June 29th
ReplyDeleteThanks Doug! Yep, hopefully with more research we will learn more about CF related Arthritis! Glad you liked the movie! I agree the dinner party- not likely. However, leaving my hospital is pretty simple. In fact, I walk to subway across street occasionally even (with permission). So that I will give them. LOL And can't wait for the CF Walk!!! Thanks for all the support over the years, we all appreciate it!!
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