4/12/11
Tuesday (is Raid Night)
Somehow this is much more believable then Friday.
Also, homemade lasagna today! w00t!
4/4/11
Turns out I have Bechterews.
Well its not really that much of a shocker. The idea that it could be Bechterews I have has been circulating for about a year now, but its hasn't come to the point where they actually wanted to give me the diagnosis or alter my treatment any until this stage.
I've been experiencing a lot of back problems, the last year especially. I felt it's become progressively worse, and unfortunately since I already had a diagnosis and am on medication, I feel that it haven't really been taken very seriously by the Reumathologist dept. of the hospital I'm connected to. Which isn't really anything I'm not used to; you never feel you're taken seriously unless you talk to the doctor that is specifically appointed to taking care of you; and getting an appointment with that doctor, well -that's easier said then done. So you get stuck with all these emergency doctors or who ever is available, and since they have no interest in reading your 8 year long file and have no idea how viable your claim is or how "whiny" this particular patient is, they usually just solve it by going "ahuh... ahuh... So maybe some cortisone and uhh... have you tried Voltaren?".
Thank you, yes, I've tried just about every goddamn pill on the market. Trying to actually move your treatment forward in a slightly faster phase is really a uphill sprint on rollerblades.
But yeah; since my X-Rays have proven I now have some ... "changes" to the lower back bones, coupled with some other symptoms I've had since the very start of my illness, its become pretty clear its Bechterews I'm dealing with. I was kind of hoping that for once it was just some tendon stress that could be solved with some back massage or some fancy voodoo, not another permanent sticker on my bum.
On the other hand its good to finally have some validation that I'm not just imagining it, that I'm not just being "that whiny patient" and that there is a goddamn problem and its not something to just brush off. When you walk around with a problem that is bothering you every waking minute for so long, and no medical authority figure tells you that this is real, then you really start doubting yourself, doubting if you are actually feeling abnormal amount of pain. Because after all, how do you measure pain?
And this is one of the reasons I feel so tired. Trying to measure myself up to a normal standard is just not possible, I have no idea what is normal and what is not anymore. When I wake up in a bad shape and I look out and its raining, I'll find myself blaming the weather. If I did something that would stress my joints the day before, Ill find myself blaming yesterday's activities. But when there's nothing to blame I feel lost.
And then I'm reminded of something my mom once said; "The reason is, you have rheumatism".
She seem to understand one thing many don't; that it might be just as hard, or harder, for me to comprehend what I am actually going through. I know its difficult for those around me who is affected as well, although most handle it well -I have had unfortunate experiences where others have been more conflicted about what to expect from me, resulting in unnecessary bickering or just plain mistrust -that was especially something that was true for the first years after I got ill.
The truth is, you can't see that my body is messed up. Neither can I.
You can't find reason for why I don't function. Neither can I.
You can't fix it.
And neither can I.
Really the only thing that I have that you don't, is the pain. You should think I'd be more certain about the scenario, knowing that I will have these problems for the rest of my life; by I constantly question myself, much because I reflect the feelings others around me portray in relation to my illness, and it makes me uneasy and uncertain.
Its like I'm stuck in some medical matrix and I still haven't figured out what reality I belong to.
So if you're confused, then I welcome you to my realm. We can have tea and compare scars, or maybe just don't say anything at all and just simply pretend that there's nothing left to say about the matter, because its solved or not even happened and everything is understandable all of a sudden and complications is a thing of the past...
I've been experiencing a lot of back problems, the last year especially. I felt it's become progressively worse, and unfortunately since I already had a diagnosis and am on medication, I feel that it haven't really been taken very seriously by the Reumathologist dept. of the hospital I'm connected to. Which isn't really anything I'm not used to; you never feel you're taken seriously unless you talk to the doctor that is specifically appointed to taking care of you; and getting an appointment with that doctor, well -that's easier said then done. So you get stuck with all these emergency doctors or who ever is available, and since they have no interest in reading your 8 year long file and have no idea how viable your claim is or how "whiny" this particular patient is, they usually just solve it by going "ahuh... ahuh... So maybe some cortisone and uhh... have you tried Voltaren?".
Thank you, yes, I've tried just about every goddamn pill on the market. Trying to actually move your treatment forward in a slightly faster phase is really a uphill sprint on rollerblades.
But yeah; since my X-Rays have proven I now have some ... "changes" to the lower back bones, coupled with some other symptoms I've had since the very start of my illness, its become pretty clear its Bechterews I'm dealing with. I was kind of hoping that for once it was just some tendon stress that could be solved with some back massage or some fancy voodoo, not another permanent sticker on my bum.
On the other hand its good to finally have some validation that I'm not just imagining it, that I'm not just being "that whiny patient" and that there is a goddamn problem and its not something to just brush off. When you walk around with a problem that is bothering you every waking minute for so long, and no medical authority figure tells you that this is real, then you really start doubting yourself, doubting if you are actually feeling abnormal amount of pain. Because after all, how do you measure pain?
And this is one of the reasons I feel so tired. Trying to measure myself up to a normal standard is just not possible, I have no idea what is normal and what is not anymore. When I wake up in a bad shape and I look out and its raining, I'll find myself blaming the weather. If I did something that would stress my joints the day before, Ill find myself blaming yesterday's activities. But when there's nothing to blame I feel lost.
And then I'm reminded of something my mom once said; "The reason is, you have rheumatism".
She seem to understand one thing many don't; that it might be just as hard, or harder, for me to comprehend what I am actually going through. I know its difficult for those around me who is affected as well, although most handle it well -I have had unfortunate experiences where others have been more conflicted about what to expect from me, resulting in unnecessary bickering or just plain mistrust -that was especially something that was true for the first years after I got ill.
The truth is, you can't see that my body is messed up. Neither can I.
You can't find reason for why I don't function. Neither can I.
You can't fix it.
And neither can I.
Really the only thing that I have that you don't, is the pain. You should think I'd be more certain about the scenario, knowing that I will have these problems for the rest of my life; by I constantly question myself, much because I reflect the feelings others around me portray in relation to my illness, and it makes me uneasy and uncertain.
Its like I'm stuck in some medical matrix and I still haven't figured out what reality I belong to.
So if you're confused, then I welcome you to my realm. We can have tea and compare scars, or maybe just don't say anything at all and just simply pretend that there's nothing left to say about the matter, because its solved or not even happened and everything is understandable all of a sudden and complications is a thing of the past...
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