I have a condition that most who know me are aware of but
don't understand. In fact I don't understand it myself. I'm not talking about
my HIV status but something that has affected me for the last three years.
I can't bend my knee.
It started in my right leg and the first time it happened I thought it was just my leg falling asleep as I would soon gain mobility as the day progressed. Eventually it got to the point where the stiffness I was experiencing started to stay around much longer. I was puzzled to what it was and as if I didn't have enough to deal with already.
I questioned if it had to do something with my current medicine regime. At the time my body was resistant to all medications based on my inability to take my medication on a timely basis. Because of my actions, there was nothing to prescribe as my body was rejecting everything. The only option for me was to inject myself twice a day with a drug called Fuzeon. This involved a needle of which I had no problem with others inject me, but doing it to myself brought out my fears. Luckily or maybe unlucky for me I was eligible for a study of a needless gun called a Bio-Injector where it shoots the liquid medication through your skin by using small carbon monoxide cartridges.
Although I could shoot myself anywhere I chose my right leg as it was more convenient. Sometimes it hurt; sometimes it was like a mosquito bite. Ironically it was around the same time that I started to feel the stiffness in my right leg. Needless to say I stopped the study right away.
Yet three years later I'm still dealing with the after effect. I've been playing Scooby Doo wondering if the Bio-Injector was responsible or was there something else going on. So far in my investigation I've been to three top notch hospitals and in each my case is like an episode of the X-Files. The doctors just can't understand what's going on with my leg. I've gotten diagnoses from polymyostis to 'stiff person syndrome' to “we just don’t know”.
And the worst part of not knowing is that they throw drugs at you hoping it will work; only it ends up as a band-aid. So I have had my experience with Presidone (steroids) to Valium which relaxes your muscles but has an addicting factor. As well as compromising your immune system even further.
So currently exploring hospital #4 and hope I can find answers there. As it's a immune disease it's frustrating, yet I see others in worse shape in me in wheelchairs or using walkers and I remind myself not to complain, Until I find out what's going on we're going all natural with acupuncture, treadmill, swimming and stretching.
Lessons if any to be learned. It’s never about the disease. There are always side effects that your body exhibits. For those who think it's all about taking a pill, think again. The virus branches out and affects other parts of your body and it's not always an easy fix. I may still be able to climb the mountains displayed in the ads, just going to take a little longer.
Yet what keeps me going and not complaining is remembering that no matter what I'm going through, there's always someone worse off than me. So still finding blessings in my discomfort. Taking that into account I may not be able to have a bended knee but I can stand tall in the struggle!
I can't bend my knee.
It started in my right leg and the first time it happened I thought it was just my leg falling asleep as I would soon gain mobility as the day progressed. Eventually it got to the point where the stiffness I was experiencing started to stay around much longer. I was puzzled to what it was and as if I didn't have enough to deal with already.
I questioned if it had to do something with my current medicine regime. At the time my body was resistant to all medications based on my inability to take my medication on a timely basis. Because of my actions, there was nothing to prescribe as my body was rejecting everything. The only option for me was to inject myself twice a day with a drug called Fuzeon. This involved a needle of which I had no problem with others inject me, but doing it to myself brought out my fears. Luckily or maybe unlucky for me I was eligible for a study of a needless gun called a Bio-Injector where it shoots the liquid medication through your skin by using small carbon monoxide cartridges.
Although I could shoot myself anywhere I chose my right leg as it was more convenient. Sometimes it hurt; sometimes it was like a mosquito bite. Ironically it was around the same time that I started to feel the stiffness in my right leg. Needless to say I stopped the study right away.
Yet three years later I'm still dealing with the after effect. I've been playing Scooby Doo wondering if the Bio-Injector was responsible or was there something else going on. So far in my investigation I've been to three top notch hospitals and in each my case is like an episode of the X-Files. The doctors just can't understand what's going on with my leg. I've gotten diagnoses from polymyostis to 'stiff person syndrome' to “we just don’t know”.
And the worst part of not knowing is that they throw drugs at you hoping it will work; only it ends up as a band-aid. So I have had my experience with Presidone (steroids) to Valium which relaxes your muscles but has an addicting factor. As well as compromising your immune system even further.
So currently exploring hospital #4 and hope I can find answers there. As it's a immune disease it's frustrating, yet I see others in worse shape in me in wheelchairs or using walkers and I remind myself not to complain, Until I find out what's going on we're going all natural with acupuncture, treadmill, swimming and stretching.
Lessons if any to be learned. It’s never about the disease. There are always side effects that your body exhibits. For those who think it's all about taking a pill, think again. The virus branches out and affects other parts of your body and it's not always an easy fix. I may still be able to climb the mountains displayed in the ads, just going to take a little longer.
Yet what keeps me going and not complaining is remembering that no matter what I'm going through, there's always someone worse off than me. So still finding blessings in my discomfort. Taking that into account I may not be able to have a bended knee but I can stand tall in the struggle!
1 comment:
I just want to say you are awesome for sharing your story! Many of us that do not know much about the disease just go on day to day and just think "hmm I dont have it so I dont have to worry"
Thank you for opening my eyes to more than just the disease!
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