Out of the Blue

I have not looked at, or even thought about, this blog for quite sometime. On March 13th, 2020, I was preparing to go home from work for what we all assumed would be a two week break while we worked out how we could keep a college campus open and still manage to stay healthy in the face of Covid-19. We were closed to the public that afternoon as we scrambled to clear out our offices so they could be deep cleaned and sanitized. My assistant and I went through the building, wiping down doors and surfaces. We talked about what we would do to stay safe when we returned. We shared our worries - I am younger than she is, but her health is better than mine. Still, we both fall into a high-risk category for severe or deadly infection from the novel coronavirus. We filled out forms to enable us to work from home for the next two weeks, and I put together a list of tasks for us to complete during our time out of the office.  Two weeks turned into five months - 2020 became the year that wasn'...

In August of this year, my doctor finally convinced my insurance company that the traditional TNF blockers like Simponi, Enbrel, and Humira weren't working for me. She prescribed Orencia. It is a once-a-month infusion, and finally - FINALLY - something is working! Is it a perfect cure? No. But I have been able to wean off steroids - I took my last 2.5 mg dose last week. It is taking my body some time to get adjusted to not having that Prednisone boost, but this morning, I woke up with a bit more energy and a bit less stiffness. However, I have been through a year-long odyssey of unabated pain, swelling, and joint deterioration. I started writing about it in July of this year, but it was too depressing to continue, so I let it go. During that year of extreme fatigue and pain, I almost believed that I would never get better; that the dark hollow I found myself inhabiting was the extent of my life. Thankfully, it was not - but I know that there are more valleys and hollows ahead. That...

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...

It has been an up and down, crazy kind of week. Some really good things have happened; the Supreme Court upheld marriage equality, for one. I am heterosexual but I believe in equal rights and am deeply passionate about my certainty that God loves and values everyone. Marriage equality seems to me to be a part of that. No one should be excluded from the ability to marry if they so choose. In addition, The Court upheld the ACA subsidy in states that did not expand Medicare, which is also an issue of human rights from my point of view. I believe that everyone should have access to health care and again, I believe that this is part of extending God's love in our world. Bravo, SCOTUS. Some not-so-good things have also happened. I have had health difficulties and life has become more problematic because of them. The Enbrel has not yet had time to take effect. I've been off Methotrexate for six weeks now, and my disease is flaring every few days. Fatigue, pain, fatigue, pain...the r...

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...

It is 3:21 am and I can't sleep. Well, that's nothing new. For the past week, I've been waking up at around 1:30 am and it doesn't seem to matter how much melatonin I take - sleep just isn't working right now. Fortunately, it's Saturday morning, so I don't have anywhere specific to be in a few hours. I can be as relaxed as I need to. It has been a long time since I've written here. Not because I've magically gotten well - I haven't. I received test results today that show the disease is continuing to progress, despite the increases in medication over the past few months. My right knee doesn't really look like a knee anymore - I'll spare you the description. The knuckles on my left hand seem to expand daily. There is always back pain and joint pain. But I have been feeling great anyway, and I can tell you why: Because I choose to. Things are hard. I work full time. I am in school full time. I just added another eight hour/week job wi...

I seem to spend a lot of time this way - sleepless, and alone. It is Friday night and I am very tired. It has been a long week. Earlier this month, my rheumatologist prescribed prednisone in a low dose, and I have been feeling better, but the last few days have been physically difficult. I've been very busy at work - and thankfully, very able to tolerate that level of activity. But not pausing to rest took its toll. By Wednesday night, I was unable to keep food down. I think it was a combination of medication and over-work, with a nice dose of stress thrown in. I was sick for most of that night, woke up sick the next day, and ended up working from home just in case it was contagious. By that afternoon, I felt better. I went to work this morning and managed to put in a full day in the office. That's a good thing, and it's probably due to the steroid. The problem is that steroids aren't a long-term treatment. The rheumatologist said I could continue this course of treat...

Since Wednesday, April 9th, I have not been able to keep solid food down or in my body. Right now, I feel about as empty and cold as I ever have. I spent Saturday in the ER, receiving fluids. The PA there was very caring and concerned, and it wasn't long before I was diagnosed with a severe kidney infection. I received Rocephin for the infection, morphine for pain, and another bag of fluids because I was so dehydrated. I came home on Saturday afternoon and ate some watermelon. I was very sick afterward. I didn't feel much better on Sunday morning, but again, I ate some solid food and lost it almost immediately. By lunch-time, I felt a bit better from having consumed about 20 oz of sports' drink. I ate a quarter of a piece of pizza, drank some water, and then I mowed the yard. Ok, I know how crazy that sounds. The day before I was lying in a hospital bed, shaking and unable to control my breathing, numb in my face and my extremities, and now I'm mowing the yard? How do...

Those of you who have been keeping up with this blog know about the problems I've been having with my doctor. I made another request this week to get results of my bloodwork, which was taken on March fifth. Yesterday I got a call back from the nurse who told me that the results were back (as if I didn't know that already, it had been a month!) and that my markers hadn't changed much - I showed a one-hundredth of a percent of improvement on my SED rate, but that was all. Then she asked how I responded to the steroid. I reminded her that I had called her about it several times and had left messages to say that it worked pretty well. I also reminded her that the doctor had said I could continue low-dose steroid treatment to help with the pain and inflammation. She replied that the doctor did not continue steroid treatments, despite the fact that they both told me he would. I felt completely jerked around and I told her so, though I used different words. She did not try to ex...

It has been exactly three weeks now since I've had a call returned from my Rheumatologist or his practice staff. At this point I can't even get test results from these people. These results were promised to be ready on March 7th. I could fully describe my frustration, but I've always believed that profanity is the lowest form of communication, so I'll pass. Suffice it to say I am thoroughly disgusted. So - moving on. I've made a new appointment with a different provider who comes highly recommended. Her practice is about twenty miles away but it will be worth the drive if she will just listen and work with me to devise a treatment plan. In the meantime, I will continue to take Plaquenil and manage my pain as best I can. It is certain that my current doctor isn't interested in helping to treat it. Friday morning, I woke up with the "knuckles" of my big toes on each foot swollen and throbbing. My feet and ankles were puffy and creaky. My knees and ...

I had my third rheumatology visit this week, and this visit was all about pain. In addition to getting a baseline on my joints and mobility, my doctor ordered another full set of bloodwork in order to gauge the effectiveness of the Plaquenil. But all that was sideline stuff to me. I was interested in talking about pain. How do I manage it? How do you treat it? I am not happy with the answer I received. I presented my doctor with a month's worth of journal pages detailing daily pain levels. I told him how many times I'd had to go into work late or leave early due to pain. I described the really difficult days I've been having and asked about options for pain treatment. His answer was to take me off the anti-inflammatory I'd been taking and give me a steroid shot. I asked him what my other options were. He didn't offer any. So I took the steroid shot. The nurse asked me to call her in two days and tell them if my condition had improved. I said I would. I was - and...

Yesterday, I received a call from the rheumatologist's office asking if I could come in for an early appointment the next day. The test results were back, and they had a cancellation, so the timing was right. I said I could, and asked if they could tell me about my lab results. The woman on the phone declined to discuss it because she was a member of the office staff. So I settled in to wait. Knowing that I would soon find out about my condition and prognosis made me very antsy, very unsettled. I didn't sleep well, but I woke up feeling just about par. Time and a hot shower took care of most of the stiffness and by 8 am, I was on my way across town to see my doctor. He went over the x-ray results first, assuring me that there was no discernible damage in the joints of my hands. He said there was damage to other joints - knees, hips, elbows, and shoulders, and that it was made evident by the grinding, crunching noise these joints make whenever I use them. He said my lab work w...

I had my first rheumatology appointment today. I started having symptoms in July 2013, and the first blood tests that showed up positive for Rheumatoid Arthritis were performed in August. As soon as those results came back, my doctor started calling specialists to get an appointment for me. There are two practicing groups with Rheumatologists in my area, and one in the next town. The first appointment they could get was more than three months in the future. I tried calling, too, but there were no sooner appointments available. So I waited - and my condition got worse. I went from having mostly good days with some stiffness and pain to having mostly bad days with brief - sometimes only hours-long - periods of normalcy. In the interim between the first blood tests and today's appointment, I saw my general practitioner three times. Each time, she prescribed different anti-inflammatory medications which were supposed to help my symptoms and the pain. They didn't help. One of them...

Yesterday started out clear and cold, but by late afternoon, clotted clouds covered the sky. I didn't have to look out the window to know that, because the waves of exhaustion and low-grade fever started rolling over me at around 11 am. As soon as that first burning sensation in my ears and eyelids hit, I knew that a low-pressure system was moving through. Most of the prevalent information that is available insists that people with rheumatoid arthritis have never been proved to suffer unduly during rainy or cold weather. The prevailing information is wrong. Yesterday's exhaustion was debilitating. I was at work when it hit, and found myself in danger of nodding off in the middle of some critical tasks. I consumed coffee and went for a walk through the building, hoping to wake myself up. It helped a bit, but when I came back to my office and settled in again, sleep washed over me until I felt as though I was drowning. I put aside the bank reconciliations I was doing and inst...

Hi. My name is Amy, and I am - well, I'm lots of things. And I'm not very fond of labels. Let me just say that I'm 42 years old. I have one failed marriage under my belt, a couple of bad relationships, and one really good one, which is ongoing. I like hiking, reading, writing, and playing the bongos. Until last year, I was in reasonably good health. Then, from out of nowhere, came near-constant pain, stiffness, and exhaustion. Lots of other things were going on at the same time - grief for my father, who was recently deceased, severe work-related stress, and kidney stones. But after the work-stress eased a little and the grief mellowed just a bit, after the kidney stones had passed, I still didn't feel good. My back was agony, my hips screamed, and my knees crunched with each step. My hands, wrists, elbows, and shoulders ached constantly. And I was tired - oh so tired - I could fall asleep within minutes, no matter where I was or what I was doing. It went on this way f...