Out of the Blue

 In 2013, after the loss of my beloved father, I started having multiple health issues. It began with several UTIs, or maybe one long-lasting UTI that seemed to clear up but kept returning. Then, I had two kidney stones. From June through September, I felt terrible most of the time. I was exhausted, struggling to push away my grief, and focused on a job that brought me no joy. I was in a relationship that I depended on with a man I loved and trusted completely; I’d have cheerfully laid down my life for him. This was no small thing since I do not trust easily. I recall waking up one Sunday morning beside him, stretching, and crying out in pain. My entire body hurt. There wasn’t a muscle or a joint that wasn’t affected, from my neck to my toes. I felt as though I was catching the flu, complete with the full body aches, fever, and exhaustion it brings. Cold fear welled up in my mind; the recollection of that moment is as sharp and clear as though it just happened yesterday. I knew w...

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 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...

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 ...

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...

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...

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. ...

Tomorrow is May 31st. It will mark a year since my father died. A year ago...can it really have been a year? Has it been more than a year since I heard his voice? Since I saw him smile? Since I held his hand while he drew his last breaths? Wiped his face as his skin cooled, watched as the nurse listened for a heartbeat that no longer echoed? Does grief ever ease? The loss is greater now that I've had time to measure it, to consider it. To feel it. For most of my life, I believed the world would end when he died. He was the foundation of my life. He was the tree whose roots encircled the whole world. He was the shelter I sought when the storms were too frightening to bear. Every moment without him in the world seems pointless. Tragedies are deeper. Loneliness more bitter. Sorrow more profound. How can anything happen without him? How can the sun rise? How can it set? How can the rain fall? How can I breathe? But the sun does rise, and it sets. The clouds gather. Rain falls. ...

I never thought I'd spend so much of my time writing about pain. Looking back over the years I've been blogging - since 2008, though those old posts don't exist anymore - I can see that by far, most of my posts have been about pain, either emotional or physical. I used to write about emotional pain - the result of abusive relationships, loss, and sexual violence. These days I'm more caught up in physical pain, though emotional pain still has it's unfortunate place. When I was a kid, I mostly ignored pain. I was raised that way. If I complained of a headache I was invariably told, "you're too young to get headaches" and I went on with whatever I was doing. Obvious sickness received whatever treatment was necessary. My parents were not cruel, but they were practical; they knew that working on a farm was physically difficult and that injuries would occur and that pain would be a fact of life. They trained me and my siblings to work through and push past...

I have been plumbing the depths of my soul looking for some words of motivation or of hope. All I come up with is flat, meaningless platitudes. I tell myself things will get better. I tell myself I will learn how to cope with this pain. I tell myself that things aren't as bad as they seem. I am such a bad liar. A few years ago at Lent, I gave up lying to myself. It has become a habit to be personally truthful and I think that for the most part, that's a good thing. But it leaves me unable to self-comfort. I can't tell myself little lies and believe them, the way I used to. But I can still live in denial. It is a comfortable blend of not examining where things are or admitting how desperate I feel. I don't have to lie to myself to do this, I just don't spend time in self-reflection. I avoid examining how I feel. I push myself into other things; mindless things, like marathons of The Walking Dead or Supernatural, or hours of mowing my lawn - using the riding ...

I took a long walk through a cemetery today at lunch-time. The sun was buttery and bright, and the stone bench at the monument for Psalm 23 was rough and warm as I sat on it and leaned back against the rock. I closed my eyes and turned my face up toward the sky. The wind was blowing cool but the sun was stronger. For the first time in thirteen days I felt some peace. I've spent the past two weeks in near-constant prayer for one person or another, myself included, but the prayers never felt connected. They were incoherent, desperate cries for help. And that's what brought me there in the first place. I woke up this morning after only two and a half hours sleep with my body shaking and my eyes burning. I shook so hard I could barely get dressed. Because I felt so weak, I made myself eat; peanut butter toast with honey. I am down thirteen pounds since April 9th. Not necessarily a bad thing, but when you lose 13 pounds in 13 days because your stomach hurts so much that even the t...

I went to bed at nine o'clock on Sunday night. It is now Monday morning - 3:55 am right at this moment - and I have been awake since six minutes past midnight. The alarm will ring at 6:05. I keep telling myself that if I can just get to sleep now, I can still get two hours. I am so tired that I can barely keep my eyes open. But I have been lying here in bed for four hours with my eyes closed, trying to sleep, to no avail. My body is begging for sleep but my mind just won't turn off. And it's a vicious circle, the way it feeds itself; the more tired I am, the more pain I have. The more I hurt, the more my mind races. I have taken 15 mg of melatonin over the course of the past three hours, but it hasn't helped. It usually only takes 5 mg to buy a night's sleep. So I'm awake. At three o'clock, I gave up and started reading. The words blurred together and I couldn't focus. Finally I turned on Netflix. Now reruns of The Walking Dead are on in the backgrou...

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...