Howdy, folks. I hope you’re not tired of me talking about my health. It’s been a long, strange ride when it comes to my health after I was diagnosed with GPA at age 19. For more on that, see https://frazzleddaisy.blog/2020/07/05/what-the-health/ and https://frazzleddaisy.blog/2020/07/07/what-the-health-part-2/.
When I was first diagnosed after getting out of the hospital, I underwent some aggressive treatment with some scary medicine. I was on Cytoxan, which cause some dramatic side effects, and I was on prednisone. Many of you have probably taken prednisone before. I was taking a very high dose. Prednisone has some horrible side effects as well, including weight loss or weight gain. Guess which one I had? I also ended up with moonface and acne (I never had acne as a teenager).
So, I was diagnosed at the end of November, at Thanksgiving. I was a sophomore in college, and I stayed home the rest of the semester. I was in a lot of pain. I had a kidney biopsy in the hospital, and because of this I could only sleep sitting up. The worst pain, though, was in my two toes that I almost lost due to the blood vessels getting destroyed. I still have problems with them to this day, especially in the winter. But at the time, the pain was just horrible. You know that feeling you get when you are outside in the freezing cold for a long time, then go somewhere where it’s warm, and it hurts? Imagine that times 10 and never going away. Took weeks for those toes to heal, but I am SO GLAD I still have them.
So, we all decided I was well enough to go back to college the next month. So, I did. It was exhausting, and I still couldn’t accept the fact that I was really limited in what I could do. I was a resident assistant, and I remember the boss had us go to one of those ropes courses for a team-building thing. The course involved physical exertion, which I just could not do. This was my first encounter with someone thinking I was lying and making things up about being sick, because this boss didn’t believe that I wasn’t able to participate. I was forced to, and it was horrible.
On a wonderful side note, this boss was later fired. Two reasons: One, he WALKED IN on other female RAs while they were in the shower area only wearing towels in their dorms and was super inappropriate in other ways with the female RAs (including me, but not as badly as others). While this was likely the main reason, the other was that when I left for the rest of the fall semester, I called him and told him that I would not be coming back for the rest of the semester and to tell everyone that I was deathly ill, and he could share all the details he wanted to. Come to find out that he didn’t tell ANYONE, and everyone thought I was just slacking off. Nice. There was a look of shock on everyone’s faces — including my boss’s boss — when I was like “Uh, I almost died. Did he not tell you?”
So, anyway, I struggled for a while as I slowly got back to being able to just live my life. That summer, I got an internship at the newspaper where my brother worked, and I lived with him for the summer. (That was a crazy fun summer!) During that time, I was pretty depressed, though, and I gained a TON of weight. The prednisone was a huge factor, but my diet was too.
So, after seeing the photo above, when I got back to college I went on a diet. It was actually super easy to diet in college because there was a great cafeteria that offered a lot of healthy options. And I went from drinking regular soda to Diet Dr. Pepper, which was what got me into drinking all diet soda. (I do not drink soda now, and I now know that diet soda is actually not great for you. But, at the time, it helped me so much.) I lost a TON of weight, and I got to the lowest I’ve ever weighed in my adult life: 160 pounds.
So, I kept that weight off for awhile, but life is difficult and stressful, and I’ve been up and down on weight ever since. Now, I’ve been up for a few years, and I am so tired of it. I’m still stuck at 25 pounds, by the way. Ugh.
GPA has hit me hard in other ways. I am currently on my sixth rheumatologist, which is one of the kinds of doctors that handles GPA. Two of my doctors retired, and I’ve moved a bunch of times. What doesn’t help at all is that each doctor has different ideas of treatments and determining if I’m in a flair or whatever. I have had to really lay the law down on keeping my treatment as is sometimes, because I don’t want to change if I’m doing OK. I’ve had primary care physicians who have never heard of GPA.
I also have had arthritis for more than 10 years now. Many folks have thought I was just making it up. I mean, who has arthritis at 25? Me, apparently. It started in my knees. Now it’s in my knees, hips, feet and hands. I get flair-ups that affect my shoulders to where I can’t move my arms. I can’t drink alcohol — I defied that order a while ago and ended up with messed up liver test results. I also can only take Aleve for pain, sparingly. Tylenol affects the liver, so can’t take that. Can’t take Anacin or Aspirin. And Aleve is really touch and go, because it can affect how my body absorbs my regular medicine I take for GPA.
I am not writing any of this seeking pity or anything. This is just some insight into the life of someone who was diagnosed at a young age with a life-altering and potentially deadly disease. Please remember that people do suffer from invisible illnesses. If you talk to me, and I am not jumping with joy and happiness, don’t take it personally. I’m just exhausted. Every day is a struggle, and I don’t want people feeling sorry for me or whatever, so I put on a happy face a lot. Most of the time, it’s sincere. But sometimes, it’s not. And that’s the case for a lot of people out there. Don’t judge a book by its cover, and don’t judge a person by the mood they’re in at that moment.
On a fun note, I changed my Instagram account to https://www.instagram.com/frazzleddaisy/. I was so excited that I could do that, haha. I am going to try to post a photo a day, even if it’s something completely random. Check it out! Also, I am going to try to learn how to do video and other stuff on there. And I don’t know hashtags too well (I’m old? Or some other reason). So, enjoy my frazzled fumbling.
Until next time!