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'...

I threw my back out last Saturday. I've always thought that saying "I threw my back out" is funny - it doesn't really mean anything, but everyone knows exactly what has happened when I say it. I'm in terrible pain at the L5/S1 vertebral area. I can't bend, find it difficult to lift my legs to walk, and turning over in bed is agonizing to the point of impossibility. Let me be crude but honest as I include that bathroom processes are now greatly complicated for a number of reasons, from getting there to cleaning up, to getting up and getting my pants back in place. We never realize how much effort goes in to simple activities of daily living until we aren't up to performing them. I have missed the last two days of work. I have tripled my steroid intake. I am alternating heat and cold therapy and have included my TENS unit and seen a chiropractor. The pain is still pretty bad. I have to go back to work tomorrow, and I'm not sure how I'll get through...

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...

How can it be December already? For what it's worth, it feels like just a couple of months ago, it was spring-time; I was watching leaves pop out on the trees and reveling in the warmer weather and the hyacinths and daffodils blooming in my yard. I blinked - and slept a few times - and now it is December. The trees are bare and the landscape is grey. Where in the world did the time go? I've noticed that the older I get, the faster time passes. I'm sure there's an equation straight from Einstein's brain that would explain this phenomenon, but for now, it's enough that I've noticed it. I am older, time passes faster. Sometimes I feel like I'm standing still while the world whirls on around me. Is it any wonder I'm dizzy? Confused? Left feeling like I've missed important things? And yet each minute, each hour, seems to crawl by with the same snail's pace as always. Years ago, I sat with my dad in the hospital, waiting for my mother to come...

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...

Since I've been diagnosed with RA, several people have asked me what RA pain feels like. Well, really, it's a crap-shoot. It depends on the day and the relative reason for the pain. Obviously, the pain is all caused by the disease, but sometimes the triggers are different. Stress causes pain. Over-work causes pain. Exhaustion causes pain. Today, I am having pain and I can't pinpoint what brought it on. I have been careful not to push myself too hard this weekend, so I know it isn't physical exertion. But since this pain is keeping me awake when I desperately need sleep, I thought I'd try to describe it. Imagine that deep within your joints, there lives a colony of tiny demons. These evil little bastards love nothing more than to torture; they live for the sole purpose of creating exquisite agony. Sometimes they attack your joints with blowtorches and you feel as though you are burning from the inside out. Sometimes they go after you with hammers and chisels; each ...

I had my first injection of Enbrel on Wednesday of this week. I signed up for the Enbrel support program, which covers my costs for the first six months and assigns a Registered Nurse to come to my home and walk me through the first treatment. My nurse's name is Nancy, and she was great. She spent an hour and a half with me, and we had a fun time. I also managed to learn a lot about the medication in the midst of talking and laughing about a little bit of everything. Sometimes, you meet someone who is just meant to be a friend. It was like that with Nancy. I'm very glad that she will be available to help me out, but more than that, I'm glad to have met her. The injection went well, but I have to admit that it hurt like bloody hell for about twenty seconds.  It takes fifteen seconds for the medication delivery, and it felt like injecting battery acid mixed with broken glass. Fortunately, the pain went away almost immediately. So far, I've had no site reaction - not eve...

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...

The latest lab results are in, and the news is good. Or bad. It depends on how you look at it. There is one level in particular my doctor has been watching, hoping to see downward movement with this latest increase of Methotrexate. I'm at the highest dose possible, but the C-Reactive Protein  inflammatory marker in my blood still managed a two point increase in the last month from 19 to 21.4. Normal levels are 4 or below. Neutrophils, leukocytes, and the white blood count are still elevated. That means the Methotrexate is not working. This is bad, but it is also good. Methotrexate is the kind of medication that can do more harm than good to those who use it regularly. It was also the last of the DMARDs my doctor wanted to try before moving into the newer classes of biologic medications. Those are extremely expensive, but they also work much better to treat RA, and with fewer side effects. Health insurance will pay for these meds, but only after every other avenue of treatment h...

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...

Last time I updated this blog, I said I was finally going to start Methotrexate, aka MTX. My doctor suggested I take the medication at night, just before bed, and she also suggested that I take it on Friday or Saturday night, so I could recuperate on a day off, because you only take MTX once a week. I decided on Saturday nights, mainly because Saturday is the day I spend catching up on housework, yard-work, and homework. I took my first dose of MTX last Saturday night. The side-effects were noticeable within thirty minutes. I got dizzy, then nauseated, but nothing worse than that. The next day, I felt tired, but not really much more tired than normal. All this week, while I've been on vacation, I've felt nauseated. It is a low-level kind of nausea, reminiscent of morning sickness. It was still as prevalent yesterday as it was the day after I took the meds for the first time. Last night, I took my second dose. This morning, I woke up feeling something I haven't felt sinc...

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. ...

As much better as I feel after having changed my diet and started taking anti-inflammatory supplements like turmeric and magnesium, I still have some bad days. Today is one of those. I got up feeling great this morning. Went through the house to take the dogs out for a walk. I bent down to fasten a leash onto Oskar's collar and couldn't straighten up. I threw my back out! Well, not really. There usually isn't anything out of place when a back injury occurs. Generally, it's just a strained or pulled muscle. Then swelling occurs around the injury and that presses on the clusters of nerves that run toward the legs; it can cause pain in the hips and numbness or tingling in the feet. Minor back injuries occur for the stupidest of reasons - a sneeze, lifting something as light as a coffee pot, or just bending over to fasten a leash. You don't have to have RA to experience a back injury. I've injured my back several times in this manner - usually after having over-us...

I've always picked up new concepts and ideas really quickly. Not to brag, but learning has come easily all my life. Until it runs up against my stubbornness or a habit I really don't want to break. Like it did this weekend. I was on vacation last week. All week long, I did really well with my anti-inflammatory food choices. I ate a lot of fresh vegetables from my garden, cherries, strawberries, raspberries, lean protein, and nuts. I avoided gluten but when I had it, I made sure it came from whole-grains and was a small amount, or I was careful to balance it with lean protein and plenty of vegetables. I felt really good all week long, so much that I was able to go on a long hike on Wednesday. And then I got cocky. I thought it would be fine to loosen up a little on Sunday. My daughter made brownies and I am a total sucker for brownies. So I ate three. They were small but in the end, it didn't matter. I woke up at three o'clock this morning in agony from head to toe. ...

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...

In my last post, I talked about alternative treatments for RA. For the last week I have experimented with diet as a way to help control my inflammation. I was feeling pretty good by Friday, and on Saturday, I decided to eat "normally" in order to see if the change was real or only a placebo effect. Yesterday's menu included eggs and grits for breakfast, a sandwich for lunch, and spaghetti bolognese for dinner. I had oatmeal-chocolate chip cookies for dessert. I didn't eat too much of anything, but by this morning I had gained four pounds of fluid and I felt awful. My voice was rough, my sinuses inflamed, and my body ached, especially my left shoulder, both hips, and my right knee. I got up around seven this morning and I felt so bad that I thought about just sitting on the couch under a blanket and abandoning my original plan of heading out for an early morning hike. After some thought, I decided to go ahead and hike. Yes, I felt bad, but I would probably feel jus...

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...

Yesterday was beautiful. Blue sky. Warm sunshine. It was humid but not unbearable. My bones, joints, and muscles felt okay, so I got up and went hiking in the Cherokee National Forest, which is practically just out my front door. My love of the woods is something I got from my dad, and that's why I chose to go hiking yesterday to mark the day of his death. Also, I needed to be somewhere else, doing anything I could to keep from thinking about the loss. When I was around fifteen, my dad and I would go walking in the woods around our farm. He would tell me stories about where the brandy distillery used to be, relatives who used to farm the land, or take me to see old abandoned houses that were hidden in the forest. He knew everyone who had lived around there and could tell tales about all of them. One of the most difficult things about having RA is that it limits the amount of hiking I can do. There's nowhere I feel closer to my dad than when I'm in the woods. Since I...

I had plans for today. I wanted to go hiking, or at least walking in the woods. If I didn't feel like being that active, I was at least going to go out, get groceries, maybe get a hair-cut, and pick up some broccoli plants for my raised beds. I knew that was pretty ambitious - I haven't had a lot of energy since the bottom dropped out of everything last week. But I thought I might at least get a couple of those things done. Uh. No. Sometime in the night, RA decided that none of those things would be happening today. And because I know there's always a chance that this will happen, I had some secondary plans I thought I could manage; laundry, cleaning up and decluttering my bedroom - which has gotten awful over the past week and a half. Nope. Not gonna happen. I woke up around three am and noticed that my mouth, throat, and eyes were dry and burning. That is never a good sign. I got up to get a drink and was still fairly mobile. A little stiff but nothing too bad. I ...