Out of the Blue

The past six months have been brutal. In addition to rheumatoid disease, my doctor suspects I have fibromyalgia, and that would explain the all-over body pain I've been fighting. It is bad enough to have your joints inflamed, swollen, and aching. Add in the feeling of coming down with the flu - throbbing muscles, pounding headache, incipient nausea - and you have a description of the past half-year for me. My right knee has been swollen and very weak. After a couple of weeks of pain that I could manage, about two months ago, my right leg was in agony from hip to ankle. Driving was the worst - just the twenty minute drive to work was torture. I developed two large knots behind the knee, which was, itself, about the size of a grapefruit. I had an emergency appointment with my rheumatologist, who put a steroid shot into the knee, under the kneecap. In a joint so full of fluid, the addition of more liquid was almost unbearable. After another week or so, my knee began to respond to th...

The only thing I regret about having taken a new job is that I had to miss my quarterly rheumatology appointment today. I have rescheduled it for a month from now; by then, I will have the sick time built up to cover it, and I hope that my health insurance will have kicked in as well. I may need to put it off for another month, though. It is possible that coverage won't begin until April 1. Knowing that I will have excellent coverage greatly helps my stress level, which keeps me feeling pretty good, but I hurt for people who don't have the same opportunities. I completed my taxes on Sunday afternoon, and because I spend a lot on medications and health-care, I decided to itemize those costs and see if I qualified for a deduction. I did - costs needed to be more than $3700 and they were. My out of pocket costs for health care and medication exceeded the $3700 limit. In checking that number, I saw how much my insurance policy had paid for my care. My Enbrel alone cost the compan...

In 2004, William Bridges wrote Transitions: Making Sense of Life's Changes. The subject of the book is exactly what it seems to be; Bridges explores the changes we experience in life and how we tend to handle them. During the course of the book, Bridges suggests that before there can be a beginning, there must be an ending. In other words, something old has to stop before something new can begin. Thus the title of this post, "The Beginning in the End." And also, if you're a fan of the TV show Bones - I am - then you recognize it as a nod to the 22nd episode of the fifth season. In that episode, nearly everyone who worked together at the Jeffersonian scatters for the four corners of the earth. It is the end (seemingly) of a very successful team and partnership. I started working at Cherokee Church in 2009. It was another beginning in an ending. My 18 year marriage was dissolving and I needed full-time work to support my kids. In order to come to Cherokee, I had to re...

Tomorrow is the big day, the day I've been waiting for since I was diagnosed with RA. Tomorrow is Enbrel day. I saw my doctor on April 9th and she prescribed Enbrel for me then because Methotrexate wasn't working very well. Unfortunately, I had a massive rash on the left side of my body from neck to the tips of my fingers, so I had to wait until that cleared before starting the new medication. That meant stopping Methotrexate and not replacing it with anything else for two weeks. I know that Methotrexate wasn't helping enough, but I had no idea how much it was helping until I stopped taking it. The last few days have been hard. By Sunday of this week I was walking with a cane again, and today was consistently painful from start to finish. The only medication I take for pain is Tramadol, and I take one of those daily, as needed. Today, I felt like I needed one every couple of hours. But the end of the day is here, and it is almost bedtime, and tomorrow is the big day! I am...

I had the final visit with my current rheumatologist today. If you haven't been keeping up, let me recap: I started seeing this particular doctor in January. I have been unhappy with his level of involvement from almost the first visit. I decided to change doctors when my current rheumatologist took over a month to give me results of an important blood test despite my having called and left several messages. Then when I saw him again, he wanted to make important decisions about my treatment based on results that were six weeks old from a blood test that had been done only a month into the treatment plan. In March, I made an appointment with a different doctor, but because the waiting lists for specialists in this area is so long, the first appointment I could get was at the end of July. About a month ago, I injured my right knee while walking. I heard a pop and then there was bruising and swelling. It was somewhat better in a few days, but every time I am more active - for active...

On the sixth of May, my Rhematologist prescribed low-dose Prednisone to help with my progressing RA. I'd been taking Plaquenil since the end of January and hadn't seen much change in my condition. So he suggested stopping the NSAID Relafen and starting with a daily steroid. I did not want to take steroids for several reasons. Weight gain was my primary concern, but it turned out to be groundless; I actually lost weight while taking it. The common side effects for Prednisone are insomnia, infection - I'm already at higher risk for that because of the Plaquenil - excess stomach acid production, excess appetite, and nervousness. However, I also wanted to feel better physically - the pain was difficult to manage, and the fatigue was almost impossible, so I said yes to Prednisone. Initially, I did feel better. I was more physically able to keep up with my days. I had less stiffness, and the tendonitis in my right elbow went away entirely. Overall, I felt closer to normal phy...

One of the lovely gifts of RA is the accompaniment of chronic pain. People with RA suffer from stiffness, swollen joints, and extreme fatigue, too, but the pain is really something special. Sometimes - much of the time for me, thankfully - it is like background noise, that muzak you hear in K-Mart but don't really listen to unless the same song plays over and over, and it's a cover of something by Michael Bolton that you really hate. Most of the time, it's a down-beat version of some easy-listening song from the late seventies that is droning and annoying but possible to ignore. Yesterday, I had one of those screaming Michael Bolton days. Words aren't enough to describe the kind of pain I had yesterday, but I'm going to take a stab at it, because hey, why not? And also because a huge part of being honest about life and about my disease is not sugarcoating anything, especially to myself. It started with a low-grade fever, as it so often does. Around 10 am, my voc...

Today is the third day on Plaquenil. Several folks have asked me is it helping yet, and the answer is no. The thing about Plaquenil is it takes anywhere from 2 to 6 months to make a difference in the disease process. So, more waiting. I think the best thing I can say so far is the Plaquenil isn't hurting. Well. That isn't entirely true. I'm having pretty vicious stomach cramps right after I eat, but they go away within a few minutes. I am having low-grade nausea which is comparable to early stages of morning sickness. On the plus side, it has become much easier to stick with my Weight Watchers eating plan. I have almost no appetite. I do get hungry, but nothing sounds tasty, so I'm just as happy with veggies and hummus as anything else. I woke up to cloudy skies and impending rain today. I'd had a really good week, RA-wise. I was active, worked every day with little pain, and was even able to sneak in some laundry and exercise. This morning I could barel...

It is 2:40 am as I begin this post, on the first morning after I began taking Plaquenil for my RA. I had the final blood test and the pre-Plaquenil eye-exam last week. The prescription was called in on Thursday and I picked it up late Thursday night. I decided to hold off on taking the first dose until after work on Friday because I didn't want to be sick on the job. Boy, am I glad I held off. About thirty minutes after I took the first dose, which is 300 mg daily, I started to feel a bit itchy. Then a lot itchy. All over. I monitored myself but no rash developed and I didn't have any difficulty breathing or swelling. After another thirty minutes the itching went away. Then the queasiness started. By then it was late, and I was tired, so I decided to go to bed. I went to sleep pretty quickly. And then I woke up. Stomach cramps. Nausea. Just a general icky feeling all over. I stayed in bed for a while and then gave up and got up. Worked on my taxes. Drank some water. Tried n...