A Slew of News but Nothing New

 I should be in bed. It's nearly midnight and here I sit. No, I don't know why. It's almost as if after 9 p.m. I wake up. I'm tired all the time but there seems to be a window when I actually want to sleep. This is not it. 

There is something else, though. I'm troubled in my spirit. So many things have happened in the last two months. August and September were nightmare months, and September isn't even over yet. 

Unlike all the YouTube and TikTok prophets, I'm not predicting the end of the world. I think there will be a shaking of the planet. We're entering a dangerous phase, when anything can happen and most likely will occur. There's enough end-time prophets without me joining the que. Make no mistake, the Bible is very clear on this. 

Matthew 24:36 Amp, "But of that [exact] day and hour no one knows, not even the angels of heaven, nor the Son [in His humanity], but the Father alone." 

So, it doesn't matter what they dream. God does not reveal war plans to anyone. 

This may seem like it belongs on the Rendered Praise Blog but I don't have a special topic. It's just me sitting here, needing to go to bed. 

I'm in a lot of pain sitting these days. The "sit bones" are extremely painful. Walking hurts too. I'm trying to get in to get a shot but I'm not looking forward to that. My hands are giving me a lot of trouble, so if you see more errors, and Mike doesn't catch them in editing,you know why. It's mostly the right hand. Driving has been difficult, particularly trying to turn corners. The rotation of the wrist is stiff and swollen. Hurts like a devil.

My sister is improving, but I don't know the long-term prognosis. She has kept her foot but I'm not sure how things will progress. I don't think the foot doctor thinks this is just going away. He indicated to me that a second bone, next to the one that came out, will work it's way out as well. So.... 

Mike is doing OK. We're having trouble getting his BP down to reasonable levels, and that's scary. He could have another stroke. Mike has a brain disease called Moya Moya. No one here knows anything about it and we know of no treatment. I don't know where the nearest doctor for this is even located. 

I was overwhelmed by seriously ill people, and that prevented me from researching. They're getting better, but now I'm exhausted and running on fumes. My body is striking back with inflammation and an inability to sleep when I got to bed. My brain will not shut down without a concerted effort on my part. I have to recite a kind of mantra. It works, but it's frustrating. 

For now, I'll close this post. If you are familiar with Moya Moya, please comment or shot me an email. We'd like to find people who are familiar with it. Even it is just to get some idea of what we're up against. I will research eventually, but I'm still in shock over the whole thing. You don't always feel better when you know something. 

Answers on a Cup

 For over two decades, I've lived in almost constant pain. Real, I can't move pain for over 20 yrs. It went from bad to worse. And some days, I tell God how very tired of it I am. I just want it to stop.

 It doesn't, and neither do I. 

I enjoy being here, but I hate being here on days when so much fog clouds my brain that I can't think, write, or wash dishes. Days when I can't hold my hairbrush, walk without feeling like there's gravel in my feet, bend my knees, or simply sit in a chair on pelvic bones that feel like they've been hammered. And then there's the nerve damage in my arm and the carpal tunnel in both hands. 

On those days, I'm not happy. I'm not mildly annoyed either. No. I'm so angry I could punch walls or scream. One would hurt me and the other would get me arrested.  I also want that annoying person to experience what I'm feeling so I can give them the same treatment I'm getting. 

So, I'm furious on those days and avoid contact with as many as I can, even my family. Being nice is the most difficult thing in the world on those days when pain is using a stone to pound me into the ground. 

Add all that to my family that experienced their own pain. For example, Mike had a kidney stone and then a stroke. Phyllis has her foot in a boot from a near amputation, and David was laid off (he got another job). All that happened in the last 60 days. 

We all got problems, right? 

But today, the pain is less. The sun is shining. And for the moment, the world has not intruded on my psyche. So, for today, as the cup says, I'll just be happy and hope tomorrow is the same. 

What am I saying! I hope the next two hours are the same! 

May your day be pain free. However, I am available to listen if you wish to rant, cry, or whine. Because we should never walk away from someone else's pain.  

 

Everybody Oughta Go to Sunday School

 

This morning as I sat on the edge of the bed trying to get myself in a church frame of mind. My hands were hurting, and it stressed me. I was so frustrated and uncomfortable. But then I stopped and thought about all I had done in my life with these hands. I worked, made my and my children's clothes, upholstered furniture for my home, made curtains, wrote millions of words in stories, and worked to retirement using computers. Suddenly, I said, "Thank you Lord for these hands that are hurting. Thank you, that they let me work and earn a living to provide for my family." 

Yes, hours later, they still hurt, even as I type this. But I could get moving and dressed. I threw up my hair and went to church. I couldn't stand for long because of pain in my hip and feet, but after a few minutes sitting, I could stand again for a while. We have a long worship service, so standing is a thing. Oddly, my left hip joint was so painful sitting, very uncomfortable and I had to shift a lot. But standing, I felt like I had rocks in my shoes. Still, I can tell the new anti-inflammatory is working.

Church has always been a source of comfort, but in the last couple of years, less so. I want to be there, but constant, unrelieved pain takes all your energy and saps your strength. I get frustrated and depressed. Having to smile and be nice is difficult. You can't tell people you're uncomfortable and don't want to be there. No one wants to know, and most are uninterested. Oh shush, you know it's true. 

Some church people often believe that church attendance overcomes pain. It does not. God can heal. He hasn't healed me and I couldn't tell you why. I've asked, but that's above my security clearance. However, no one wants to hear that either. We don't want to face the reality that God doesn't always fix things. And telling people at church that all I want is to be home in a comfortable chair doesn't float well. Mostly, they don't know how to respond or how to make a judgement of the person feeling that way. Compassion comes to mind, but that can be equally difficult for some. 

However, my pain was better today, and I enjoyed seeing my two friends and talk with them. My friend Sandra is about to visit her home in Ghana for a bit, so I was glad to see her today. She called me when I missed a couple of Sundays. Do you know what that does for a person dealing with chronic pain when you do that? She is such a lovely person and I just love her and her family. And the Jung's are some of my favorite people. And Sister Joan, another transplant from Africa, is a bright spot with her lovely hats. I always look for her hat to see if she is there. 

Lunch was ready when I got home, more or less. Last night I made lunch for today so when I got home all I had to do was warm it up. That was a relief. Now, I've spent the afternoon just sitting here relaxing and wish I could get rid of the neck pain. Nothing much touches that but adjustments to my sleep positions and sitting positions. At it's worse, I have numbness down my left arm and into my fingers. Burns most of the time but I seem to have learned to live with it. And there are a few things I can do to make it less uncomfortable. So, I'll manage.

All in all, the day has not been a bad day. 

Disobedience

 So, I just got done cleaning the garage! I could barely walk for over a week. I've had severe pain in every major joint and my hands. This pain wasn't caused by my fibro, because my OTC medication for it works well. 

No, the doctors removing my anti-inflammatory medication, Lodine caused this. They decided I could go to pain management. You know, narcotic painkillers. Not happening. I've been dealing with the results of that since February and it had become almost impossible to take the trash to the street. And God forbid I should have to get on the floor. It has been so depressing and stressful to not be able to do anything constructive. I've sat in the chair watching videos and reading when I could focus. 

Monday evening, I had to get on the floor to get something behind the computer. Y'all, I thought I was going to have to call someone for help. I could not get up. My knees were in so much pain and I couldn't lift myself. And I'm not the svelte 130 I was when I came to Evansville. I stayed on my knees and wondered who I could call. I remembered David is in town now and was off that day. So I considered calling him to come help me. 

Do you know how humiliating it is to have to call someone to help you off the floor? Can you even imagine how frustrating it is not to be able to just stand up? I decided that I could do it. 

I grabbed the desk chair and positioned my body in the seat, and got my feet under me. And that sounds much easier than it actually was at that time. Let me just say my knees were extremely unhappy with that decision. I managed to get up and had to immediately sit down in said chair. And yesterday, they paid me back in spades. Hips and knees united in a front to fell me with a swoop. I was in so much pain. I woke this morning in only moderately less pain.

So, how could I clean the garage today? 

I broke the unspoken rule that says do what the doctor says. I took an OTC naproxen. It is half the dose of my prescription. Within one hour, ALL my pain had abated to a one. Knees work fine. Feet don't hurt. Hands are not swollen and stiff. Shoulder doesn't hurt. Neck doesn't hurt. 

Yeah, I'm pretty annoyed, but there is nothing I can do about the doctor's orders. I just don't have to follow them. Their reasoning was "too much risk". I've been on it for 20 yrs. And two other meds I take have life-threatening risks. They have to monitor my eyes because of one of them. It can cause permanent blindness. 

I'm just thankful I feel better this afternoon. My morning looked bleak until I took that pill. 

More of the Same

Things have been rather slow since I got back from Arkansas. My RA has been at near peak performance for months and I've grown a bit weary of it. A good day here and there is never enough relief. The barrage of storms that continue to roll across S. Indiana are a constant source of pain and the pain keeps me exhausted.

They are once again going to adjust my Cpap machine to try and reduce my apnea events. Obviously, I'm having too many. Is this why I'm tired? Who knows. I'm in constant pain, usually moderately severe. I sleep in pain and I wake in pain. You don't rest like that. So, I don't know if the adjustment will help.

And no, the Humira has not helped. They said six months to see a change. I'm 3 months in. Very little improvement, if any, is noted. In fact, I see signs of things worsening. I'm gaining weight because I can barely walk most days and have less strength in my legs and arms. Jars present Olympic challenges. Any work performed robs me of days of energy.

Reading is difficult because concentration is bad. Writing is difficult for the same reason and my hands hurt. Sitting hurts my back after long periods but walking hurts my hips. I actually feel better mentally when I can get some exercise if joint pain doesn't make it impossible to bear.

This has been a year of hell. I'm not usually a quitter but I've stopped fighting. It isn't going to get better. I don't want to think about what it is going to become.

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.