CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • Finally Saw The Rheumatologist Today

    I have been having arthritis pain for a very long time. The pain got much worse when I was finally able to stop needing Prednisone all the time back around October, I believe. It took a while to get into the rheumatologist for a new patient appointment but today was the day!

    I liked the doctor. While he was examining me, he was squeezing my joints in my hands, wrists, knees, shoulders, etc. (ouch!), he noted joint swelling as well as tenderness/soreness. He was able to make a quick diagnosis. I do, in fact, have Cystic Fibrosis Related Arthopathy (Arthritis). It mimics rheumatoid arthritis but it’s not really labeled as rheumatoid arthritis. It does have the same joint pain and swelling, etc. Due to it being related to CF, it makes this a different class of arthritis in a sense but mimics and looks like rheumatoid arthritis.

    Here is the treatment plan…He prescribed a medicine called hydroxychloroquin (Plaquenil) 300mg once a day. This is a rheumatoid arthritis medicine. Unfortunately, this medicine doesn’t start to work right when I start taking it. It can take up to 3-6 months to start to feel the full effects of it. So fingers crossed that it does in fact help and I don’t have any of the noted side effects. As you know, my body doesn’t like to play nice or by the rules, so here’s to hoping that my body accepts it and it helps! What’s another 3-6 months of pain, right? I mean, I’m in some sort of pain all the time anyway.

    He also prescribed a different anti inflammatory medicine called nabumetone (Relafen) 500mg twice a day as needed for the arthritis pain. I am stopping the anti inflammatory, Meloxicam, that I was taking for the arthritis pain. It’s not doing much anyway.

    I have an appointment to see him again in 3 months to see how I’m doing on both medicines. Obviously, If I have any issues before then, I will call and get an appointment before the 3 months.

    Until next time…

  • Winter Is Too Long…Mental Health Check In

    Winter is my least favorite season. I hate cold weather. I want to sweat, not shiver! I dislike the lack of sunshine. Thankfully, here in East Tennessee we don’t get much snow. When we do get snow, it is usually melted away within a day or two.

    Now for the reason I’m pointing this out…this winter has seemed to be dragging on forever. Winter is my least favorite season for another reason. Winter is when my depression gets hit really hard.

    I get the “winter blues” ( seasonal depression) starting around mid November or so. This of course is on top of regular old clinical depression.

    The winter months have been brutal this year. Yes, I have “good” or “decent” days where I have more motivation to do things and those days I do all that I am capable of doing. Then there are the not so good days. On those days getting out of bed, doing my breathing treatments and holding the couch in place all day is what gets accomplished. I’ll try again the next day.

    This winter, there has been hard life things that have happened to throw a major wrench in my “decent” days.

    November was a shitty month, to say the least. November 4th we had to help our last fur baby, Otis, cross the rainbow bridge. He was 15.5 years old and had developed doggie dementia and progressed rather quickly.

    He had defied the odds before when he was around 10 years old. He was diagnosed with Immune-Mediated Hemolytic Anemia (IMHA). IMHA is a severe, often fatal autoimmune disease. Thankfully our vet caught it quickly. He stayed in the doggie ICU for about a week and received a blood transfusion. During this whole ordeal, it was discovered that he also had the beginnings of lymphoma. So to say he defied the odds is an understatement. Losing Otis was really hard.

    Then on November 20th we lost one of our best friends. My husband served with him in the Air Force here in TN. They moved back to TN when he retired. My husband was able to hire him on where he worked at the time. I can’t really even put into words how hard his loss has been in many ways. So much for pushing through November. It was more like trying to swim in mud but all I was doing was sinking.

    December was my 3 month pre transplant check up. They wanted to see me back in 3 months again. Being seen every 3 months verses every 6-12 months is a little heavy for a number of reasons.

    January 19th was the 10th anniversary of my mom’s passing. January has been a hard month for me for the past 10 years for the obvious reason. I don’t even have to be purposefully thinking “oh it’s January, here it comes.” January comes in like a wrecking ball and there’s no stopping it.

    January 26th, I lost a good friend to cancer. January was not a good month either.

    Then February 1st comes…my 46th birthday. I tried my best to “shake off” the bad January vibes and celebrate. It was a weird birthday this year. The friend I lost to cancer, her birthday is the day after mine. That may have had some to do with it feeling off this year, among other things.

    I’ve obviously been dealing with other medical crap as usual…bad arthritis pain, lower back pain where my surgery was, the cold weather making all my aches and pains worse, carpal tunnel pain, bad acid reflux, trying to find a new pancreatic enzyme because the Creon I was using changed manufactures and stopped working, being tired and worn out often (some of which is depression related and CF related), the list goes on.

    With all that said, I am still trying to swim through the mud as best as I can.

    Until next time…