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'...

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...

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...

I had my rheumatologist visit today. For those of you who follow my progress with RA, here's my latest news. I am off Methotrexate! WOOHOO! I can't say I'm sorry to see it go. I felt better for the first month or two of MTX, but the benefits faded over time. So it's out with the old and in with the new. In this case, the new is Enbrel. I am registering for Enbrel support this afternoon. I may qualify to receive my first six months for free, and afterward with only a $10 copay per month. That is perfectly reasonable. I am glad, because though I hope it doesn't happen, there is the possibility that my work could change in the near future and my health insurance might change right along with it. But more than the financial aspect, I am glad to be able to move away from the medications that aren't working and into something that just might really change my health for the better. The past month has been hard, but the past two weeks have gone beyond hard to insane...

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 consider myself lucky because I don't have enemies these days. In the past I have, unfortunately, known people who wished me ill. Some of these people actually caused physical, emotional, and psychological damage. But that time in my life is over, thank God. These days, my greatest enemy is... Stress. I bet you thought I was going to say myself, right? Well, at one time in my life that would have been true. I have been at war with myself off and on for most of my 40+ years. But not anymore. If there is one thing that years of therapy has done for me, it is to remove my ennui toward who I am. No, I am comfortable with myself. I know who I am, what I love, what I need, and what I want. I have a realistic sense of my own self-worth and a willingness to work hard for the good things I deserve, whether those are relationships, better health, or just quiet down-time. A lot of my stress comes from my job. Most of it, if I'm being truthful. When things are good there, I love it...

I saw my rheumatologist on Tuesday. She had the results of my most recent blood tests, which were two months old. The shortage of specialists means I only get to see her once every eight to twelve weeks, so the blood tests are always old by the time we review them. In this case, it was only a comparative review. She compared my numbers from July to the first tests I had done in early September of 2013, the tests I had run in January of this year, and the second set of tests I had done in April. There was good news and bad news. The good news is that there are no signs of lupus, which is what my current rheumatologist worried about. The bad news is that with the exception of a slight blip in April, my inflammatory markers and rheumatic factor have not changed since last year. This is despite nine months of treatment with Plaquenil and anti-inflammatories like Mobic and Relafen. I haven't gotten worse, but I haven't gotten better, either. The next step in treatment is Methotr...

I had a four day weekend for Labor Day, and being sick today turned it into a five day weekend. Last week was crazy busy at work and I really pushed myself to complete some tasks that were critical. I got home exhausted every evening, so my house was in terrible shape by Friday, and that was with my daughters helping clean after school each day. I was very tired when I got up on Friday morning, but I decided to clean house anyway. I've gotten a bit smarter about it, though - I clean for thirty minutes and then rest for thirty minutes. Or twenty minutes, or ten - the point is to balance activity with rest. So I made it through Friday pretty well and the house was clean by the end of the day. The girls went to their dad's that afternoon, and they each took their dog along, which left just me and Oskar, my shadow-weenie, at the house for three days. Talk about vacation! I was too tired to go out Friday evening, even though I had planned to go listen to some music with a friend. ...

Let me share with you the shape of a day since I developed this autoimmune disease: I wake up. The room is pitch black, partially because I have purged it of all electronics including my alarm clock with a digital display, partially because I have the blinds closed, and partially because it is four a.m. and the sky hasn't begun to lighten yet. The first thing I'm aware of is the pain in my right shoulder and the inability to close or fully open the fingers of my right hand. Next I feel pain in the small of my back - this has been with me since July fifteenth; I don't think it'll be leaving me any time soon. I try a cautious stretch, and hear the succession of pops and crunches as my joints stir for the first time today. I assess the damage. Will this be one of those days - still infrequent, thank God - when I just can't get out of bed? Will I be able to shake off the stiffness and stretch out the soreness and get to work on time? Or will it be the kind of day wh...

After my recent bad experience with Prednisone ( Touch and Go ), I have been giving a lot of consideration to alternative treatments and therapies for RA. Medications are wonderful when they work as they are meant to, but the lists of side effects with approved RA drugs are long and frightening. Probably the best of these treatments are the biologic medications - they work in two-thirds of patients, and slow or halt the progression of the disease. The problem is their cost. A year's worth of treatment with Enbrel or Humira could cost as much as $40,000. Health insurance may pay a portion of this cost, but because the expense is so great, most insurance companies require that all other treatment options be exhausted before approving biologics. Plaquenil isn't working well for me - I've been taking it since January and haven't experienced much beneficial change. I am reluctant to try Methotrexate because of it's side effects, which include hepatotoxicity, chronic he...

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...

Yesterday, I stood on top of a hill sprinkled with tiny yellow buttercups that danced and nodded in the breeze. The sky was bright blue with white ripples of cloud. Down the hill, families had gathered at the playground and the air echoed with children's laughter. On the path that wound around the hill's crest, an occasional jogger or dog walker passed. I watched and waited. Since I moved far away from home, I've developed a habit of searching faces for ones that are familiar. At first, I was "seeing" people I knew everywhere. In the past year or so, that's pretty much stopped. I've settled in, I guess. I've stopped looking for friends and family in the strangers around me. But not yesterday. Yesterday, I was hoping against hope to see a familiar face. So much so that I almost convinced myself that I had. But my heart knew I was wrong, even when my eyes were convinced otherwise. So I stood, and I waited, and let the wind blow over me. It was a beaut...

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...

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...

Back in 2011 I bought a house - the first one I've ever owned. It has good bones; a sturdy roof, attractive brick, a large yard. The person who owned it before me was in the process of renovating when he sold it. The house was built in 1989, which incidentally is the year I graduated high school. The previous owner made some important upgrades. A new roof. Hardwood flooring in a pretty mahogany shade. Tile in the kitchen and bathroom. He was planning on renovating the kitchen by putting in new cabinets, counter-tops, and appliances. He was going to finish remodeling the bathroom by removing the 1980's style grey fixtures and replacing the ugly medium oak vanity and light bar with more modern editions of the same. But something tragic happened. He was in a very bad car accident, which left him unable to walk without a walker for more than a year. By the time I met him, he had graduated up to a cane, but he wasn't able to use his hands effectively at that point, and finishing...

It Could Always be Worse , by Margot Zemach, is a funny children's book about a man who lived in a little hut with his wife and six children. His house was so crowded and his children and wife were so quarrelsome that this poor man sought the help of his rabbi, who advised him over the course of several visits to move his cow, his goats, his chickens, and his mother-in-law into the house. Each time the harried man came to the rabbi complaining of the noise, the smell, the fights, and the cramped quarters, the rabbi would say, "oh, it could always be worse!" and order him to add another member to his menagerie. Finally the rabbi lets the poor man off the hook and tells him to move the animals out and send his mother-in-law packing. The man comes back to the rabbi, happy and relaxed, bragging about how clean, quiet, and spacious his house is now that it's just him, the wife, and the six kids. The rabbi was right - things could always be worse no matter how bad the man...

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...