I'm sitting here almost packed and ready to get on a plane tomorrow, and I'm grateful that I have a job to go to everyday. I know if I feel bored or lonely, then I can crank up the car and go to work. There's always something for me to do there. I want to review this week a bit and review some of the pros and cons.
I had to make a decision on Thursday that was not easy. Some back story on that - My kidneys are in bad shape. I take three different medications to keep them working at about 50%. I haven't gotten to dialysis shape yet, but lets just say that they don't work very well. The DMARDs and NSAIDs I have been taking over the years, combined with Type 1 diabetes, have both lowered the function. Therefore, I cannot take anything like Aleive, Advil, Meloxicam, or anything that takes the swelling and inflammation out of my joints. I burn everyday. I can't touch my hands behind my back. I've leaqrned to live with it, and the fact that my shoulder joints burn on a non-stop basis. Now to the decision - I am going to be traveling for work - toting bags to and fro through airports and hotels for the next week. I had a major flare this week. I needed desperately the medicine that is killing my kidneys.
I called my rheumatologist, and spoke with the nurse. They both decided that it's not in my best interest to get the shot. I thought back to Tuesday and Wednesday night and the pain and depression, and decided to get the shots. I can walk and move. The last flare got me almost everywhere - including my hip, feet, ankles, lower back, elbow, shoulders, wrists, neck and jaw. The shots were a necessity for me to keep working. They worked. I can move.
Now you would think that I would be happy about that. I feel more grateful and thankful than happy. I find myself annoyed - with myself. I still have a friend or two left. One of them called - holy shit, yes, called me Saturday afternoon wanting me to go to a birthday party. He would not take no for an answer. I didn't have to walk a great distance, and I needed to get out and be with friends. I was excited, so I went.
It wasn't long before I realized it was a mistake. I was at a stranger's house, and I only knew about three people there. I couldn't monopolize anyone's time to talk so I sunk down to that place where I just place a look of mild interest on my face and begin plotting the exit strategy. I did my round, spoke to everyone and shook hands, but my friend noticed I wasn't "my normal self." He offered to help, but I didn't feel right burdening him, so I talked for a few minutes and left.
The party was too much. I din't know many people. I didn't have a driver. I wanted to loosen up and have a good time, but I just couldn't make it happen. The night I needed a drink, I couldn't because I didn't have a driver. I'm not sure if it would've made things better or worse. I'm in a hole. It's dark down here. Somehow, I just don't feel safe anymore. I need that hand extended to me again.
The good news is that I have a distraction - work. There, I can forget about everything and focus on something else other than life. I work, I come home, and I sleep. I really miss having a life. I want to work towards being more pleasant to be around. The bad part is that I feel at peace when I'm by myself. I don't want to be pitied. I don't want people to feel sorry for me. I either want to be included or left alone. Either I'm in the inner circle, or leave me on the periphery. At this moment, I'm in no one's inner circle. Not even Phil or Chandra's. I have been sick and feeble enough to slip out of both of them. It hurts seeing their life go by and have other people know more about them than me, but I haven't been there. I don't deserve it.
I'm going to finish packing and revel in the fact that I can get in a jean size smaller than what I was last month.
Sunday, September 29, 2013
Tuesday, September 24, 2013
Pain and Responsibility
I feel bad today. Not just a normal, "I'm tired" bad, but really bad. At about 5 PM, I felt what is coming on, and there is no escaping it. My hip is getting that slow, progressive pain. I know I won't be able to sleep tonight. I've set my alarm to 3 AM. I know I'll need the extra hour to get ready. I'll be using a cane by morning, and I'll have to go in early so no one sees me using it. I'm not quite sure how I'm going to make it to meetings, but I'm sure that all the pain killers in the world will not help. To add insult to injury, my jaw is so swollen that I cannot chew, and I have a new nodule on the bottom of my left foot the size of a small chicken egg. I tried to take a picture of it, but you r4eally can't tell unless I get a picture of both feet and I'm not a bit flexible, ot to mention that I can barely lift my left leg.
Phil is rather pleased with himself. He knows I've had a stressful day, yet he keeps coming in here making it more stressful. I tell him to leave me alone, but he keeps saying, "I told you so. How are you going to get to Pennsylvania like that?" He's right. How am I, indeed? I haven't been able to eat today. I never had the chance to sit down and eat lunch. I came home to cook dinner, and he made a vulgar remark about the fish I was cooking. I threw it out. I've eaten a banana and a pear today. I can stand to miss a few meals.
I want to be back to normal. I want to be free of this monster. I want to be hugged and told that It will be OK. I want to be able to continue to provide for myself. I want the luxury of knowing that I can get up in the morning and be able to move. I want my friends, my confidants. They don't want me. I have become useless and have nothing more to offer.
The real pain hasn't settled in yet. It's only a niggling of what's to come; however, the emotional pain has set in. I'm so offended by every tiny jab, remark, look, presence. I have so many worries on my mind. My chief concern right now is not getting fired. Two weeks ago, this same thing happened, and I was out for two days. My body and brain are separate, but, without my body, my brain is sinking into a dark place. I have to make myself smile. I don't find much humorous. I have to force myself to be bearable to be around. I want to throw in the towel.
The problem is that I have people that depend on me. Phil depends on me to pay the bills. Until I get canned for being crippled, I have a great team at work that depends on me. In short, I have responsibilities. No amount of rest will make me better, so I will press on. I'm not really sure how I'm going to make it to PA. I hope I can make it there and back. My brother is getting married on the 5th. I would like to be there for that. I bought Braves tickets for the 6th, but my best friend has other things to do that day. I may just go by myself.
I have seen no positive progression in my RA. I'm being crippled in body and soul. I have no support to bring me out. I will just learn not to expect anything good and just keep humping it until I can't anymore.
Phil is rather pleased with himself. He knows I've had a stressful day, yet he keeps coming in here making it more stressful. I tell him to leave me alone, but he keeps saying, "I told you so. How are you going to get to Pennsylvania like that?" He's right. How am I, indeed? I haven't been able to eat today. I never had the chance to sit down and eat lunch. I came home to cook dinner, and he made a vulgar remark about the fish I was cooking. I threw it out. I've eaten a banana and a pear today. I can stand to miss a few meals.
I want to be back to normal. I want to be free of this monster. I want to be hugged and told that It will be OK. I want to be able to continue to provide for myself. I want the luxury of knowing that I can get up in the morning and be able to move. I want my friends, my confidants. They don't want me. I have become useless and have nothing more to offer.
The real pain hasn't settled in yet. It's only a niggling of what's to come; however, the emotional pain has set in. I'm so offended by every tiny jab, remark, look, presence. I have so many worries on my mind. My chief concern right now is not getting fired. Two weeks ago, this same thing happened, and I was out for two days. My body and brain are separate, but, without my body, my brain is sinking into a dark place. I have to make myself smile. I don't find much humorous. I have to force myself to be bearable to be around. I want to throw in the towel.
The problem is that I have people that depend on me. Phil depends on me to pay the bills. Until I get canned for being crippled, I have a great team at work that depends on me. In short, I have responsibilities. No amount of rest will make me better, so I will press on. I'm not really sure how I'm going to make it to PA. I hope I can make it there and back. My brother is getting married on the 5th. I would like to be there for that. I bought Braves tickets for the 6th, but my best friend has other things to do that day. I may just go by myself.
I have seen no positive progression in my RA. I'm being crippled in body and soul. I have no support to bring me out. I will just learn not to expect anything good and just keep humping it until I can't anymore.
Sunday, September 15, 2013
Moonwalking and Humiliation
For several reasons, I've taken a few months off. First, I embarked on a journey in my treatment called, "Swapping." Second, If I wrote about every flare I had, then I would have to write everyday, and I simply don't have that that sort of tenacity. After all, battles will wear a person out. So let me tell you how my disease has progressed since May.
Sometime during the middle of May, I had blood drawn, and two conclusions were made about my RA - Enbrel wasn't working as well as my doctor had hoped. and the NSAIDs I was taking were ruining my kidney function. I was taken off all NSAIDs, including Aleve. I was taken off my once a week injection of Enbrel, and it was swapped with Humira- once every two weeks. I continued with methotrxate, a low dose chemotherapy, and in the place of my NSAIDs, I was given a drug, circa 1950's, called Sulfasalazine, a sulfa drug as large as a button for me to take two pills, three times a day - gag.
Week 1 was fine. I exhibited no change. The second week, I began having weak flares. I expected this. I was coming off the Enbrel and the Humira and Sulfasalazine had not begun to work yet. My hands would hurt one day, the next my shoulders, the next my knees and then my feet, elbows, wrists, lower back, fingers, thumbs, hips, jaw.....on and on and on. For four months, I had constant, consistent flares everyday. Not crippling or long lasting, but pretty bad.
I saw my rheumatologist during this period. I now have permanent joint damage to my left elbow. It seems like the flares were so bad that my joint attempted to escape my body by exiting the area it belonged. It now lives on the outside of my elbow and is very painful. I was notified that I'll have to have it replaced, but as long as it's not that painful, then I can put it off.
I also have persistent nodules growing on my fingers and the pas of my feet. They are painful, but cushioned shoes help.
A few weeks ago, I had blood drawn again. The normal ESR (sed rate that measures inflammation) in an adult female should be between 18 and 21. Mine was 125. The normal anti CPC (measurement of antibodies) should be 6. Mine at diagnosis was around 400. Mine a few weeks back was 612. I also saw my Diabetologist last week who measured my kidney function, and it had decreased 40% in the past 3 months.
The results of all of these tests is that I have begun taking Enbrel again, and I have a new medication for my kidneys. I also cannot take any NSAIDs or have anymore steroid injections for flares. I have to make a choice - live in constant pain or lose a kidney.
So you're sitting here asking yourself, what does this have to do with moonwalking and humiliation? On Thursday morning, I woke up with extremely stiff joints, more-so than usual. During the night, I had applied several ice-packs to my hips and shoulders - nothing new. I was having problems getting around, but that's an absolute normal morning for me. Usually by the time I get to work, I've worked out most of the kinks, but my right hip was catching and beginning to ache. I decided to take a half of a pain pill at 5 AM. I knew what was happening, but I was hoping if I stayed moving that the flare would not happen.
By 7 AM, the pain was bad, but I could still pick up my right foot and use my hip. I could still walk. I tool a fast paced trip down the receiving dock and around to the ops office - about a 1/4 mile, and sat down for a 30 minute meeting. It was hard to get up but I did, and I used a rolling chair as a walker for a moment. I went back to my desk and took a whole pain pill at 8.
I was finding it increasingly difficult to make small treks - to the copier, to co-worker's desks..etc. I needed to go into the receiving office to do some research, but when I got up, not only was there a fire blazing in my hip joint, but the increased pain of a serrated blade being jabbed into the joint and twisted accompanied the former. I could not use my hip joint to lift my leg to lift my foot.
I needed to get into the receiving office with as little pain as possible. The only way I could get there is to drag my foot, so I turned around and moonwalked into the receiving office. The problem was that it was witnessed, and I tried to joke, but that didn't work. I eventually got what I needed, and I ran into my my boss. She told me to go home. I made some excuse, and told her that I would be OK, but I knew I was wrong. It was getting worse. I actually contemplated wheeling myself out in my chair. I decided to leave and hobbled to my car (walking backwards a bit and dragging my leg). I had to hoist my leg into my car. It wasn't easy. Getting out and up five steps at home was worse.
I want to talk about independence for a moment. Until you've had to have someone help you in bed or help you put on clothes, or even walk, then you never truly can realize how independent you are. I used to think it was mostly a state of mind, but I had at that moment, come to physically depend on Phil to help me around. I know that it's only temporary, but I also know that I cannot live that way. It's humiliating.
I want to digress for a moment and talk about another time I felt humiliated. A few of you know that I went blind in 2004 and 2005. One day when both eyes were very bad, Phil had driven me to the convenience store in Chattoogaville. I was going to stay in the car, but he told me my sister was there, so I decided to get out. I got out of the car and struggled to get my footing and was groping for the car to hold onto. She hissed that I should stop doing that and that I looked stupid. I got back in the car. And that's all I have to say about that.
I called into work on Friday. I thought I would have gotten better since the flares start getting better after the worst pain (that I had felt the night before). I tried to get up and scuttle with a cane and work out the pain. By noon, it hadn't happened. I really wanted to go in. Later that day, my manager called to check on my well being. He was checking to see how I was doing and meant well. My psyche is as such that when my disability is brought to light, I will do one of two things - get pissed and clam up or burst into tears. He mentioned me walking backwards and tears shot to my eyes immediately and, thankfully, the phone broke up and I ended the call.
You see, I'm very independent. I have worked since I was 16. I've always done for myself. I have been the sole provider for me and Phil since 2009. I don't like being viewed as weak. It's bad enough that Phil has to see me that way, but last week I had shown my employees, co-workers, and boss, that I was incapable of walking. My lack of being able to do something so simple had humiliated me once again.
I don't like or enjoy doing it, but I've had to come to grips with the fact that one day in the future I will not be able to walk at all or type or write or hold a bottle. I really don't want to think about that.
So the flare is mostly over. I'm able to get around without a cane today, and I haven't needed a pain pill today. I'm thankful that I can get around once again. I'm going to have to learn to live with the humiliation of being crippled. I'm looking into ways to control the flares. So far, I've read that diet can impact the recurrence of flares, so I'm going to try that next. We'll see.
Sometime during the middle of May, I had blood drawn, and two conclusions were made about my RA - Enbrel wasn't working as well as my doctor had hoped. and the NSAIDs I was taking were ruining my kidney function. I was taken off all NSAIDs, including Aleve. I was taken off my once a week injection of Enbrel, and it was swapped with Humira- once every two weeks. I continued with methotrxate, a low dose chemotherapy, and in the place of my NSAIDs, I was given a drug, circa 1950's, called Sulfasalazine, a sulfa drug as large as a button for me to take two pills, three times a day - gag.
Week 1 was fine. I exhibited no change. The second week, I began having weak flares. I expected this. I was coming off the Enbrel and the Humira and Sulfasalazine had not begun to work yet. My hands would hurt one day, the next my shoulders, the next my knees and then my feet, elbows, wrists, lower back, fingers, thumbs, hips, jaw.....on and on and on. For four months, I had constant, consistent flares everyday. Not crippling or long lasting, but pretty bad.
I saw my rheumatologist during this period. I now have permanent joint damage to my left elbow. It seems like the flares were so bad that my joint attempted to escape my body by exiting the area it belonged. It now lives on the outside of my elbow and is very painful. I was notified that I'll have to have it replaced, but as long as it's not that painful, then I can put it off.
I also have persistent nodules growing on my fingers and the pas of my feet. They are painful, but cushioned shoes help.
A few weeks ago, I had blood drawn again. The normal ESR (sed rate that measures inflammation) in an adult female should be between 18 and 21. Mine was 125. The normal anti CPC (measurement of antibodies) should be 6. Mine at diagnosis was around 400. Mine a few weeks back was 612. I also saw my Diabetologist last week who measured my kidney function, and it had decreased 40% in the past 3 months.
The results of all of these tests is that I have begun taking Enbrel again, and I have a new medication for my kidneys. I also cannot take any NSAIDs or have anymore steroid injections for flares. I have to make a choice - live in constant pain or lose a kidney.
So you're sitting here asking yourself, what does this have to do with moonwalking and humiliation? On Thursday morning, I woke up with extremely stiff joints, more-so than usual. During the night, I had applied several ice-packs to my hips and shoulders - nothing new. I was having problems getting around, but that's an absolute normal morning for me. Usually by the time I get to work, I've worked out most of the kinks, but my right hip was catching and beginning to ache. I decided to take a half of a pain pill at 5 AM. I knew what was happening, but I was hoping if I stayed moving that the flare would not happen.
By 7 AM, the pain was bad, but I could still pick up my right foot and use my hip. I could still walk. I tool a fast paced trip down the receiving dock and around to the ops office - about a 1/4 mile, and sat down for a 30 minute meeting. It was hard to get up but I did, and I used a rolling chair as a walker for a moment. I went back to my desk and took a whole pain pill at 8.
I was finding it increasingly difficult to make small treks - to the copier, to co-worker's desks..etc. I needed to go into the receiving office to do some research, but when I got up, not only was there a fire blazing in my hip joint, but the increased pain of a serrated blade being jabbed into the joint and twisted accompanied the former. I could not use my hip joint to lift my leg to lift my foot.
I needed to get into the receiving office with as little pain as possible. The only way I could get there is to drag my foot, so I turned around and moonwalked into the receiving office. The problem was that it was witnessed, and I tried to joke, but that didn't work. I eventually got what I needed, and I ran into my my boss. She told me to go home. I made some excuse, and told her that I would be OK, but I knew I was wrong. It was getting worse. I actually contemplated wheeling myself out in my chair. I decided to leave and hobbled to my car (walking backwards a bit and dragging my leg). I had to hoist my leg into my car. It wasn't easy. Getting out and up five steps at home was worse.
I want to talk about independence for a moment. Until you've had to have someone help you in bed or help you put on clothes, or even walk, then you never truly can realize how independent you are. I used to think it was mostly a state of mind, but I had at that moment, come to physically depend on Phil to help me around. I know that it's only temporary, but I also know that I cannot live that way. It's humiliating.
I want to digress for a moment and talk about another time I felt humiliated. A few of you know that I went blind in 2004 and 2005. One day when both eyes were very bad, Phil had driven me to the convenience store in Chattoogaville. I was going to stay in the car, but he told me my sister was there, so I decided to get out. I got out of the car and struggled to get my footing and was groping for the car to hold onto. She hissed that I should stop doing that and that I looked stupid. I got back in the car. And that's all I have to say about that.
I called into work on Friday. I thought I would have gotten better since the flares start getting better after the worst pain (that I had felt the night before). I tried to get up and scuttle with a cane and work out the pain. By noon, it hadn't happened. I really wanted to go in. Later that day, my manager called to check on my well being. He was checking to see how I was doing and meant well. My psyche is as such that when my disability is brought to light, I will do one of two things - get pissed and clam up or burst into tears. He mentioned me walking backwards and tears shot to my eyes immediately and, thankfully, the phone broke up and I ended the call.
You see, I'm very independent. I have worked since I was 16. I've always done for myself. I have been the sole provider for me and Phil since 2009. I don't like being viewed as weak. It's bad enough that Phil has to see me that way, but last week I had shown my employees, co-workers, and boss, that I was incapable of walking. My lack of being able to do something so simple had humiliated me once again.
I don't like or enjoy doing it, but I've had to come to grips with the fact that one day in the future I will not be able to walk at all or type or write or hold a bottle. I really don't want to think about that.
So the flare is mostly over. I'm able to get around without a cane today, and I haven't needed a pain pill today. I'm thankful that I can get around once again. I'm going to have to learn to live with the humiliation of being crippled. I'm looking into ways to control the flares. So far, I've read that diet can impact the recurrence of flares, so I'm going to try that next. We'll see.
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