Posts

Showing posts from 2015

For what it's worth

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 out …

Dreams

These are only dreams. Reality is very different. In reality, little boys can pick up their father's guns and kill the little girl down the street. In reality, a man can make an anonymous purchase over the internet of enough ammunition to kill a dozen of people in a crowded theater, or nine students innocently seeking an education. Reality is inescapable, except in dreams - which is likely why we need them so much. This is one of mine, cased in my reality, which just happens to suck today; I am in a lot of pain and don't have the energy or the guts to push through it and go on with work, school, life. Better to seek solace in dreams.

I awoke in the night to the sound of the windchimes on the front porch. The curtains lifted, shifted; a breeze stole into my room. The night was black outside the window. The music of rain mingled with the chimes; fine-fingered droplets combed through the trees and if I held my breath, I could hear the the dying leaves sigh as they released their …

Decisions

I like having choices, but I don't like having to choose. I know how little sense that makes. It seems like a paradox, doesn't it? But it's true - having options is great, but when I'm comfortable with things as they are, I don't really like being faced with choices. Sometimes, the choice might lead me to a better situation, a better job, better education, or even better health. But, there's always that fear that I'll be jumping out of the safety of the boat, thinking I can walk on water like Jesus, and then sink like a stone.

I was presented with a couple of opportunities just last week that put me in this kind of situation. A friend called to tell me about a job opening that she thought I'd be interested in. I wasn't sure that I was interested, frankly - I really enjoy my current jobs - but I thought it would be interesting to actually hear a bit more about the position, so I called and left a message. After a little back-and-forth, I had an inter…

Conflicted

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 re…

Imagine

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 s…

Post-Enbrel

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 even…

E-Day

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 …

More progress

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. E…

Rolling away the stone

A year ago tonight was one of the worst nights of my life. Or I thought it was. It was the night when my boyfriend broke up with me after a year and a half of serious relationship. He had hinted at marriage several times, and it was understood between us that it was what we were both looking for. Then I got sick, and everything changed.. At first, he just seemed distant. Then it was more than distance - I knew he didn't want to be there when we were together. He was more than a million miles away. He wasn't even on the same planet. I asked him several times what was wrong, and if he was happy in the relationship. He would only speak briefly about anxiety and depression, but refused treatment. Pride would not allow him to seek help. It was something, he said, he had to deal with on his own.

So he broke up with me and I really thought it would kill me. I nearly let it kill me, truth be told. After all, the rest of my life had fallen apart. What was there to live for? I had lost …

Progress?

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 has …

Celebrate

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 with co…