Pain & Things....

2014 by Cynthia Maddox 

There is no telling what tomorrow will bring, especially where I'm concerned. I have felt great today. Only a sore left pinky and a sore right knee. Pretty much everything else feels fine. No depression, no anxiety, no runny nose, no swollen neck, no cloudy brain, no unusual tiredness. Totally bizarre. Ah well, tomorrow is another day. I hope.

On a lighter note, my RA doctor's nurse called me today to see how I was doing off the methotrexate. I gave her the same spiel as the one above. She said my doctor wants to suggest another medicine. Yes, you heard me. I'm have no inflammation and I need another med. Avara. Not much better than methotrexate in that regard. Most of the same symptoms. You can have a fatal liver failure in as little as 6 months! Wow.

I've been force to evaluate what quality of life I want. Crippled hands and feet and pain or death. Gee, I dunno, what do you think?

Anyway, I see her Thursday. I'll say no for now. I ordered this stuff that was recommended by my son's pastor in Arkansas. I got last week and started using it on Friday. Isotonix OPC-3. A powder you mix with a small amount of water and drink once a day. Supposed to help with inflammation. Well, I don't know. I stopped taking the methotrexate a week ago this past Saturday. I had moderate pain in my joints and I was taking two Tylenol 8hr pain reliever three times a day. The pain receded but only taking the Tylenol. Since Saturday, I have not taken the Tylenol but about three times all total. So, is the stuff working? I don't know. I could just be at the end of the flare. It could be the weather improved. It could be prayer. It could be anything. This is the frustration of RA. You don't know until it happens.

Tomorrow I go for the MRI on my neck. I have to say, today the neck is better. Dave told me he had been having his church pray for me. So, maybe that is what happened there. It is better, much better. I still go numb when in certain positions but I don't think it is happening as quickly or as extensively. I'm thankful, whatever the vehicle. All thing work together....

Now, I'm headed for bed. Yes, early. I woke up this morning before the clock and allowed myself to lie there and wake slowly. The clock snooze is usually so annoying but it wasn't this time because I was actually awake. I wasn't very sore when I got up and I think the slower pace helped.

The one thing that really helps is sleep. If I get lots of good sleep, I feel much better. Problem is, the sleep I usually get is not very good. Too short, disturbed, and pain-filled. So the solution is part of the problem.

Still, I'm hoping for another good day. Pray for this MRI. They're looking for a herniated disk. I'm not. I don't think it is there.

The Winding Stick

This is how I do it. There may be other or better ways. This works for me.

On A Sunny Day - First Walk of 2014

I was so excited when I left work today. It has been a beautiful day and the sun shone all day. Temps were mild. By the time I got off at 4 p.m. it was 68 degrees. I came straight home, got my walking shoes on and headed for the cemetery. I managed to walk 1.28 mile in less than 30 minutes. I couldn't believe that. It's been about 6 months since I was able to get out there to walk. I think maybe September or October was the last one.

I'm now in the process of withdrawal from methotrexate. Pain levels are rising. I wasn't about to let a nice day go to waste. So I walked and enjoyed it so much. But my hands, shoulders, back and neck are hurting mildly. I'm probably going to bed early because of it. I need the sleep.

Anyway, to save time, here's my video of the first walk. Look at the sky! I promise I'm not going to video every walk this year. How boring they must have been for everyone. I didn't even finish posting the last few months. Even I got tired I think. A lot goes into production of them and I just didn't have time.

One thing I meant to put in my video but forgot was this photo. This is the headstone of a woman and she is buried between what I presume is her two husbands she outlived. I so hope her life was better than her name would indicate. I laughed about this when I found them last year and shared it in a video I don't think I ever posted.

Death in a Bottle

I elected to not take the Methotrexate this weekend. It was a difficult decision and one for which I have no doubt I will suffer painful consequences. But I was already suffering consequences from the decision to take it. Within one month of starting it the pain in my joints was 100% better. The trade off was that the glands in my neck started to swell and I developed some kind of severe pain in the side of my neck below my ear that rapidly worsened to the point that turning my head in certain positions was agony. I developed numbness along the bottom of my jaw on that side and if I kept my head in that position long enough, the numbness crept up the side of my head and down to my shoulder. I had no explanation for it.

It was obvious to me that something wasn't right. When I returned to the doctor about two months later, I told her the problem and she completely ignored it. Made no reference to the neck pain at all. I mentioned I went to my Primary care physician and she thought it sounded like torticollis. She didn't seem interested and did not check the neck and gave the lymph glands a passing probe. "Yes, they're slightly swollen."

I became more and more depressed, to the point I was spending a lot of evening alone in my house crying. I also mentioned this to her but she didn't feel it was an issue, despite the flyer for the medicine saying this was a side effect of methotrexate, as are the swollen glands.

The swelling worsened. Those under my arms were a bit tender. I was using heat and cold packs on my neck day and night when I was at home. They helped a bit. The neck pain and stiffness got slightly better. It has not gone away. But as of the morning, after not taking the once a week dose yesterday, my glands have dramatically shrunk. I've felt exhausted for a while now, as I think I've mentioned on here. I'd  have to look back but I think ever since I've been on the Methotrexate I've been more tired. Yes, I did hurt less in my joints but my quality of life has not improved.

I've felt for years that my situation was the result of a virus. I watched a video that scared the heebee jeebees out of me a few night ago and kept me up most of the night with what I heard. It was horrible. I will not post the link here. If you want to watch it on YouTube look for Dr. R. E. Tent and a video about autoimmune disorders. I warn you it is insanely scary and sounds like a science fiction movie of epic portions. That was just the first hour.

The second hour, which I skimmed because I was in shock by then, he talked about his patients. He indicated Epstein Barr is connected to rheumatoid arthritis, headaches, and chronic fatigue. Last year, the first five months of the year, I was sick with what my Primary care doctor said was a "recurrence of the Epstein Barr virus". I couldn't believe that then because the symptoms I was having were not familiar to me when I was sick last year. That's mono and I had never in my life had that virus. Apparently, I did. You can have mild cases or just be a carrier.

In light of what I know now, it makes so many thing much clearer. And instead of throwing poison at it there has to be something else. No, I have no idea what. I just know that I believed for years that my condition was the result of a virus. I have no idea why I believed that, I just have always done so. It acts like a virus to me. And no, I'm not a doctor but I read and I pay attention to my body. I listen to it.

So, despite the devastating effects that are probably in store for me with the RA and the pain I am very familiar with,  I see no reason to take a medicine that has, in four months, made me as sick, if nor more so, as I am with RA. In the video, he called Methotrexate "Death in a Bottle".

If you pray, if you know someone who is able to pray for healing please bring my name to their attention. If you take Methotrexate or have in the past, I would like to hear your experiences on it. And if you know of reputable alternative treatments to any of these, I want to know.

Thinking On Thursday

I think I couldn't have asked for a lovelier day that today. The sun shone all day and there was no biting wind to cut through your clothes. When I came home for lunch it was warm enough to leave my coat open. I still needed it but I didn't have to be wrapped in a bear rug. And the final bonus is that the snow was melting... again.

Work was meh. Not very hectic and I actually had only about four phone calls. That's almost astounding. Rarely do I have a day with less than ten. It ranges from 125 to 170 a month. I have has 225 one month. Thank God that is rare as well. So, I came home tired but not in a metal stupor.

I'm not writing and I hate it. I am, of course, doing this blog but this is the easy part. Very few people read or comment and I don't feel compelled to writer riveting prose. I've done a bit on my novel but it is virtually impossible to do more than a few hundred words and I went through a week where when I tried, I simply wanted to toss it all out the window and pretend it never happened. Everything about it stunk. I didn't, of course, but the impulse is still hanging around.

No, the creative stuff is what I'm having the most trouble with. I simply can't shake the brain fog. This is about as bad as it has ever been and today is a bit better than usual. I feel as if I need days and days of sleep. I push through the work day to come home feeling as if I've done an all nighter. I could go to bed at 7 p.m. and sleep but I'd be up in six hours in pain and my schedule would really get out of whack. I doubt I'd get through the work day.

I think it is time for a real vacation. Seriously, I need to start planning it. I have to do it well in advance or I will just sit at home and do nothing. Which, if I think about it, sounds heavenly if I could be sure no one would need something. No, the only way to do that is leave town. But funds are severely limited and thus my choices. I would dearly love to have a week, in a room, on the beach where I could wake up in the morning and look out and see the blue ocean and hear the waves. I'd go sit in a chair or lie on a blanket in the sand and bask in the warmth of a coastal sun. I'd slater up with lotion with just enough spf to let me toast a bit. The cost of that little trip is beyond me.

The other problem with this idea is with the fog in my brain I don't like driving and going places because it becomes very confusing after a bit and extremely tiring. So, I'd end up feeling depressed to be stuck in one place alone. I suspect it is why I really don't do the shopping thing at all anymore. I used to tolerate it once in awhile if I had company. These days, it ends up a long walk to nowhere and I feel that time could have been better spent and have cost me less in terms of money and energy.

Tonight I've just played it quiet and easy. Took a hot bath, had waffles and sausage for supper. Had a cup of coffee, which I might regret, and discovered that Apple Cider Vinegar in ice water stops my indigestion. Go figure on that last one. I actually like the tart taste of this drink and for some reason, the vinegar makes the water seem colder. I just used about a teaspoon in a 8 ounce glass of water and ice. I didn't realize the indigestion was gone while. That's when I realized I could have those waffles, sausage, and coffee. An upside down day, for sure.

Now I think I will stop this and get ready for bed. Last night I was in bed by 10:30. I am planning on doing that tonight. I'd like to do it for several weeks and see how I feel. One of the problems with fibro is sleep deprivation. No matter how much you get, it seems to never be enough. And, if you really don't get enough, you pay a heavy price. The fog is near impenetrable.

So, good night sweet prince, wherever you may be. Our paths are not destined to cross. For you are there and I am here. And never the twain shall meet.

To the rest of you, g'nite.