Every morning when I open my eyes my first thoughts are how to maneuver myself out of bed so I can get to the bathroom!! From there I debate on which pain meds I need first and foremost, just the NSAIDS for now or should I go ahead and take that Lortab too before I regret not taking it later and whether or not it's going to be a Prednisone kind of day. It's a never ending process.
I love the movie "Freaky Friday" (either version) and often times feel that is what has had to have happened to me!! In my mind I'm still very young, vibrant, energetic and full of life. My reality, physically, is not the case ... I feel old, dull, tired and miss having a life. I want to know who the old lady is who stole my body!!! She can have this one back!!
When I look in the mirror I know it's really me and my body, but I feel like I'm trapped in this broken down shell and there is no escape!! I can see the Rheumatoid Nodules on my arms around my elbows, on my legs close to my ankles, around my knees, on my feet and my fingers too. I can see and feel the limp I walk with now and how slowly I walk too. I notice how my arms hang with a slight bend now, I can no longer straighten them out. I can honestly see these physical changes going and can most definitely feel my body breaking down. I still am having trouble accepting that this really is my reality.
Just three summers ago I was able to carry a 5 gallon bucket of paint in each hand. I was lifting and stacking those suckers 4 buckets high like they were nothing. I can't lift a single gallon of anything now. I can't grab the milk until it's almost empty and then it takes both hands. I can't unscrew the lid off the mayo jar or any other kind of jar for that matter :(
I very rarely drive these days and when I do it's down to the drug store less than a mile from my home. My shoulders lock up into excruciating pain not to mention I don't feel safe driving anymore. There just is no strength in my wrists or hands anymore. Some days I can barely pull my own pants up much less be in control of a vehicle!! I feel such a loss of freedom!!
I have adjusted my entire wardrobe to make my life simpler. I only own one pair of shoes that totally encase my feet and I just recently found those. I mostly wear my house shoes, sandals, clogs or slides. I own more skirts these days than I ever have my entire teen and adult life. It is so much easier to hike a skirt up than trying to fiddle with buttons, snaps and zippers.
I have chopped all my hair off (again) just so I can manage it. It was becoming too difficult to wash, brush and style it. I now use an electric tooth brush because I don't have the strength in my wrists and hands to really scrub my teeth. A 6 inch toilet seat riser has been a real help too ... nothing like being stuck and unable to get up without it!!
I realize now all the 'little' things I used to take for granted. Simple everyday tasks seem like major challenges most days. It is very frustrating, to say the least, when trying to brush your teeth and you can't squeeze the toothpaste or you can't turn the door knob to go outside. It's the 'little' things ...
I don't know what I did to deserve this fate in life. Maybe if I had eaten better, exercised more, partied less when I was younger, listened to my parents more ... maybe it doesn't matter what I have or haven't done. All I know is I want my old body back ... this one is broken :(
Monday, July 26, 2010
Saturday, July 24, 2010
A new journey begins
I have never blogged before, but can't imagine it's much different from keeping a journal. Well the fact I'm putting it all here on the web is a huge difference I suppose :)
So I'm going to start with my earliest memories of what I now know were possible symptoms of RA. There is no way I can confirm whether or not I had RA back then, as you can not turn back time, but I believe it may be true. Of course back then (in the 1970's) people didn't really talk about RA. Hell people don't really talk about it now with the exception of those of us whose lives it affects!! Rheumatoid Arthritis was something only 'old people' had.
I can remember as early as age 7 feeling the need to 'pop' my fingers and toes to relieve the 'pressure' I was feeling in them. Oh my mother would fuss at me and tell me 'You're going to get Arthritis if you don't stop doing that'. Now we all know that isn't true ... or is it??
My next vivid memory of these symptoms was in my very early twenties after I had my first child. My ankles would get stiff. I never really thought much about that though given I had sprained my left ankle twice during childhood. My knees would bother me from time to time. I never really gave that much thought either since I had had many bicycle accidents and roller skating mishaps as a child. My jaw would 'lock up' on occasion but I have TMJ according to the dentist I had seen in my teens. I just blew them off at the time to getting 'Arthritis'.
In my thirties I still had all these same aches and pains but really never gave it much thought. I was getting older and was trying to manage a full time job, my household, my marriage and raise 4 kids. I was juggling a lot and thought, it's just 'Arthritis'.
I would be stiff in the mornings but after a hot shower and getting everyone up and around I would be fine. I would go work 10 to 11 hours a day (I was in management and had to put my time in). I worked a very physical and demanding job but handled it quite well at the time. After the drive home I would be so stiff and have trouble getting out of my car. I blamed the long days on me feet for that.
In 2007 I had a major life change after my mother had a heart attack and quadruple by-pass. We moved to be closer to her and my dad. I took a few months off work and decided that when I did go back to work I didn't want to work such a physically demanding job. I thought I was getting to old to put in the time and effort I had done at my previous job. I went to work a short period of time in retail, only to become a highly paid and glorified stock person. :( After the Christmas rush I decided I just couldn't take it anymore and I quit. I then went to work in a deli/bakery ... I thought 'How hard could that be?'.
At first this new job wasn't too bad. I eventually became the Cake Decorator and was having the time of my life expressing my creativity!! During this time I was also helping my folks remodel a home they had bought. It was a lot of physical work, but I was having fun with my husband, kids, mom and dad in designing and doing the remodel. After about 6 weeks my hips locked up on me and I thought maybe I was over doing it a little. I just delegated more of the tedious stuff for the kids to do. A few weeks after that both of my knees started hurting all the time. I called my doctor.
I wanted to make sure I hadn't sprained or strained anything when I went in to see my doctor. I told him all the work I had been doing but he wanted to run a 'special' test on me. He did the RF and some other blood work on me. When the labs came back his nurse called me and told me the doc wanted to see me. I knew it had to be bad if he wanted to talk to me personally instead of the nurse conveying the message to me.
I went in to see him and he told me I had Rheumatoid Arthritis and he started me on Plaquenil once a day. At that point in time I had no clue what RA really was. I initially thought to myself 'Well it's official, you have Arthritis'. I would soon learn it is much more than that!! My doc referred me to a specialist that I wouldn't be able to get in to see until December ... this was August(2008)!! Oh well I thought I'll just take these pills and see what the specialist has to say. My RF number at that time was almost 600.
I finally got in to see the specialist and at that time all he did was double my dose of Plaquenil. I had asked him about the Biologics I was seeing commercials for and he told me we weren't ready for that yet. I was naive and uninformed about what was going on with my body or how to communicate with my Dr. I just went with what he told me ... he was the specialist, right?!?
January 7th was the last day I worked. My hands and feet were so swollen I could barely move and just touching my hands sent me into tears. I went to ask my boss if I could leave to go to my doc to find out what he could do for me. She actually had the nerve to tell me not to cry about it. I was in so much pain I could barely walk and then I had to face driving myself home and back up to my docs!! I could barely turn the key to start my damned car!! I got in to see my regular doc and he gave me shots in my hands and feet and told me to take a week off to rest my feet and hands. That turned into another week off then two more weeks off and so on and so on.
In February the Specialist added Folic Acid and Methotrexate to my treatment. I had a reaction to the Methotrexate and he yanked me off of it by the 3rd dose. I was so swollen and couldn't walk or barely move!! Finally in mid March he started me on Arava. At this point my RF numbers were close to 1300!! I don't know if it was the warmer weather moving in or the Arava, but for a brief time I thought I was feeling better. That would change in just a few short months. By November I was feeling pain all the time and my 'stiffness' would last upwards of all damned day!!
I was super frustrated with the Specialist I was seeing. He would dismiss my questions and told me not to believe everything I read on the internet about RA, the tests that are sometimes used or about the treatment options available. He told me that if the Arava didn't work our next step would be Gold injections. REALLY?!?! That is an old, outdated treatment option!! I wanted to stop being in pain!! I didn't want to keep playing Guinea Pig to see if this or that would work. I wanted to get to the heart of the matter!!
I spent most of the rest of the winter in bed!! Most days I needed help sitting up, standing up, going to the toilet, brushing my hair, putting my clothes, socks and shoes on and couldn't stand the pain to brush my own damned teeth!! I couldn't wait to get our Tax Return ... I was going to use money from that to see a different Rheumatologist since I had lost my Insurance coverage anyway. In the mean time we bought me a wheel chair. I was tired of being stuck in this house and everyone else being stuck in the house because I couldn't go anywhere!!
I went to my new Rheumy March 16, 2010. She could see immediately how swollen and inflamed all my joints were. She hadn't even looked at the X-ray results or labs I brought with me from my regular doc yet. My RF at this point was almost 1800 (my other rheumy had told me these numbers mean nothing?) and X-rays showed erosion beginning on several of my joints. She and I discussed treatment options. She asked me how I felt about Biologics. I told her I had read up on all of them and was a little nervous about some of the risks involved and side effects. She told me that yes, there is risk, because we are basically stopping my Immune System in it's tracks since it doesn't seem to want to play nice. I told her I was willing to try anything at that point. I was in tremendous pain and almost at my ropes end!!! She gave me a 'super' steroid shot for immediate relief and my first shot of Humira.
By the next day I was hobbling around the house, but at least I was up and out of bed!! The day after that my best friend and my girls loaded me and my wheelchair up and headed to the mall!! By that weekend I was at the zoo with family and friends getting wheeled around and having fun and was out of the house!!!
The Barometric Pressure going up and down still messes me up and tries to knock me down!! Once a month my hormones are against me and cause flare ups too. For now though, at least while it's warm outside, I feel I have huge improvements in my life!! I'm not constantly in bed, not constantly in pain so severe I just want to end it all and I'm not feeling as hopeless as I was.
I know there is no cure and that as time goes by I will more than likely have to move onto another treatment option. I know that as time goes by my body will slowly (hopefully slowly) deteriorate and eventually I will be totally and completely dependent on others for my every need. Until that day comes I will continue on the journey of Life and take it one day at a time. I will cherish the good days and fight like hell to get through the bad!!
Hope I did okay on my first Blog entry ... until next time. ~ K ~
So I'm going to start with my earliest memories of what I now know were possible symptoms of RA. There is no way I can confirm whether or not I had RA back then, as you can not turn back time, but I believe it may be true. Of course back then (in the 1970's) people didn't really talk about RA. Hell people don't really talk about it now with the exception of those of us whose lives it affects!! Rheumatoid Arthritis was something only 'old people' had.
I can remember as early as age 7 feeling the need to 'pop' my fingers and toes to relieve the 'pressure' I was feeling in them. Oh my mother would fuss at me and tell me 'You're going to get Arthritis if you don't stop doing that'. Now we all know that isn't true ... or is it??
My next vivid memory of these symptoms was in my very early twenties after I had my first child. My ankles would get stiff. I never really thought much about that though given I had sprained my left ankle twice during childhood. My knees would bother me from time to time. I never really gave that much thought either since I had had many bicycle accidents and roller skating mishaps as a child. My jaw would 'lock up' on occasion but I have TMJ according to the dentist I had seen in my teens. I just blew them off at the time to getting 'Arthritis'.
In my thirties I still had all these same aches and pains but really never gave it much thought. I was getting older and was trying to manage a full time job, my household, my marriage and raise 4 kids. I was juggling a lot and thought, it's just 'Arthritis'.
I would be stiff in the mornings but after a hot shower and getting everyone up and around I would be fine. I would go work 10 to 11 hours a day (I was in management and had to put my time in). I worked a very physical and demanding job but handled it quite well at the time. After the drive home I would be so stiff and have trouble getting out of my car. I blamed the long days on me feet for that.
In 2007 I had a major life change after my mother had a heart attack and quadruple by-pass. We moved to be closer to her and my dad. I took a few months off work and decided that when I did go back to work I didn't want to work such a physically demanding job. I thought I was getting to old to put in the time and effort I had done at my previous job. I went to work a short period of time in retail, only to become a highly paid and glorified stock person. :( After the Christmas rush I decided I just couldn't take it anymore and I quit. I then went to work in a deli/bakery ... I thought 'How hard could that be?'.
At first this new job wasn't too bad. I eventually became the Cake Decorator and was having the time of my life expressing my creativity!! During this time I was also helping my folks remodel a home they had bought. It was a lot of physical work, but I was having fun with my husband, kids, mom and dad in designing and doing the remodel. After about 6 weeks my hips locked up on me and I thought maybe I was over doing it a little. I just delegated more of the tedious stuff for the kids to do. A few weeks after that both of my knees started hurting all the time. I called my doctor.
I wanted to make sure I hadn't sprained or strained anything when I went in to see my doctor. I told him all the work I had been doing but he wanted to run a 'special' test on me. He did the RF and some other blood work on me. When the labs came back his nurse called me and told me the doc wanted to see me. I knew it had to be bad if he wanted to talk to me personally instead of the nurse conveying the message to me.
I went in to see him and he told me I had Rheumatoid Arthritis and he started me on Plaquenil once a day. At that point in time I had no clue what RA really was. I initially thought to myself 'Well it's official, you have Arthritis'. I would soon learn it is much more than that!! My doc referred me to a specialist that I wouldn't be able to get in to see until December ... this was August(2008)!! Oh well I thought I'll just take these pills and see what the specialist has to say. My RF number at that time was almost 600.
I finally got in to see the specialist and at that time all he did was double my dose of Plaquenil. I had asked him about the Biologics I was seeing commercials for and he told me we weren't ready for that yet. I was naive and uninformed about what was going on with my body or how to communicate with my Dr. I just went with what he told me ... he was the specialist, right?!?
January 7th was the last day I worked. My hands and feet were so swollen I could barely move and just touching my hands sent me into tears. I went to ask my boss if I could leave to go to my doc to find out what he could do for me. She actually had the nerve to tell me not to cry about it. I was in so much pain I could barely walk and then I had to face driving myself home and back up to my docs!! I could barely turn the key to start my damned car!! I got in to see my regular doc and he gave me shots in my hands and feet and told me to take a week off to rest my feet and hands. That turned into another week off then two more weeks off and so on and so on.
In February the Specialist added Folic Acid and Methotrexate to my treatment. I had a reaction to the Methotrexate and he yanked me off of it by the 3rd dose. I was so swollen and couldn't walk or barely move!! Finally in mid March he started me on Arava. At this point my RF numbers were close to 1300!! I don't know if it was the warmer weather moving in or the Arava, but for a brief time I thought I was feeling better. That would change in just a few short months. By November I was feeling pain all the time and my 'stiffness' would last upwards of all damned day!!
I was super frustrated with the Specialist I was seeing. He would dismiss my questions and told me not to believe everything I read on the internet about RA, the tests that are sometimes used or about the treatment options available. He told me that if the Arava didn't work our next step would be Gold injections. REALLY?!?! That is an old, outdated treatment option!! I wanted to stop being in pain!! I didn't want to keep playing Guinea Pig to see if this or that would work. I wanted to get to the heart of the matter!!
I spent most of the rest of the winter in bed!! Most days I needed help sitting up, standing up, going to the toilet, brushing my hair, putting my clothes, socks and shoes on and couldn't stand the pain to brush my own damned teeth!! I couldn't wait to get our Tax Return ... I was going to use money from that to see a different Rheumatologist since I had lost my Insurance coverage anyway. In the mean time we bought me a wheel chair. I was tired of being stuck in this house and everyone else being stuck in the house because I couldn't go anywhere!!
I went to my new Rheumy March 16, 2010. She could see immediately how swollen and inflamed all my joints were. She hadn't even looked at the X-ray results or labs I brought with me from my regular doc yet. My RF at this point was almost 1800 (my other rheumy had told me these numbers mean nothing?) and X-rays showed erosion beginning on several of my joints. She and I discussed treatment options. She asked me how I felt about Biologics. I told her I had read up on all of them and was a little nervous about some of the risks involved and side effects. She told me that yes, there is risk, because we are basically stopping my Immune System in it's tracks since it doesn't seem to want to play nice. I told her I was willing to try anything at that point. I was in tremendous pain and almost at my ropes end!!! She gave me a 'super' steroid shot for immediate relief and my first shot of Humira.
By the next day I was hobbling around the house, but at least I was up and out of bed!! The day after that my best friend and my girls loaded me and my wheelchair up and headed to the mall!! By that weekend I was at the zoo with family and friends getting wheeled around and having fun and was out of the house!!!
The Barometric Pressure going up and down still messes me up and tries to knock me down!! Once a month my hormones are against me and cause flare ups too. For now though, at least while it's warm outside, I feel I have huge improvements in my life!! I'm not constantly in bed, not constantly in pain so severe I just want to end it all and I'm not feeling as hopeless as I was.
I know there is no cure and that as time goes by I will more than likely have to move onto another treatment option. I know that as time goes by my body will slowly (hopefully slowly) deteriorate and eventually I will be totally and completely dependent on others for my every need. Until that day comes I will continue on the journey of Life and take it one day at a time. I will cherish the good days and fight like hell to get through the bad!!
Hope I did okay on my first Blog entry ... until next time. ~ K ~
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