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Between the cracks

October 11, 2011

Sometimes it feels like I’ve slipped between the cracks. No matter how many times or how loud I scream “help me”, no one hears it. I’m falling apart physically, losing everything that has given my life meaning, fighting as hard as I can to hold on, and being told to just wait a little bit longer over and over again. The only person that seems to take me seriously is Dr. Fabulous, but she’s understandably hesitant about prescribing anything to help me. She’s getting frustrated too, but won’t step outside her bounds. I wouldn’t want her to, she shouldn’t have to, and I hate having to ask her for another prescription for tegretol. I may have to ask for a prescription for baclofen as well because the spasms are getting too much to tolerate. It’s incredibly painful, and it’s getting obvious to those around me that don’t know about the specifics of my health problems. It’s kind of humiliating going to her for these things. It’s not her area, not her problem, but I have no choice. It’s like having a good relationship with the mechanic you take your car to, and asking him to fix your air conditioner. It’s not her job to be doing this, I shouldn’t be asking for this, but I don’t have any other choice and I hate that I have to ask the one person that is on my side to creep outside of their scope of practice. I see her next week.

There is no copy of a requisition for a spinal MRI in my file at the MS clinic. There is no copy of a requisition for an ultrasound either. I know the ultrasound one was sent, but the lazy local hospital hasn’t sent them a blank one of their forms so I don’t have to go out of town again to get it done. As for the MRI, who knows. Could be that they sent it and just didn’t make a copy, could be that they forgot to send it in the first place. The MRI department does not have voicemail, they just stick you on hold and don’t pick up. After being transferred between the same 4 numbers multiple times, I eventually got an appointment with Dr Kickass. The appointment is at the end of December; I might be on their cancellation list (so if someone cancels an appointment, they call me to see if I can take their appointment), or I might not be. I really don’t know. I don’t even know where the appointment is since I was being bounced back and forth between the MS clinic and the neurology department. My form for disability services at school has to be signed and in the school’s file by November. They are audited in November. If my form is not signed and in there by that time, any assistance I am getting (my accommodation for the TN, more on that later) and any future assistance I may need will be cut off because in their eyes I am just faking to take advantage of them. If I start to lose my sight severely again or can’t walk again, I will be fucked. I will not be able to do the work, I will not even be able to get to classes, and will be forced to drop out of school or stick with it and fail.

So, tomorrow I have to try calling the MRI department again and hope they answer the phone this time. If they do, I can find out if they received a requisition at all, and if they did, how far down the list I am. I have to call the ultrasound booking department at Big City Hospital again and hope they’ll just forward the original requisition to Local Hospital and maybe, just maybe, Local Hospital will accept it and book an ultrasound. All of this should be handled by secretaries; why I have to do it is beyond me but it’s definitely getting me frustrated, stressed out, and really disillusioned with the MS clinic, Dr. Kickass, and Big City Hospital in general.

I used to think of this mess as “I can wait for a DMD, I just want to take care of symptoms until we can confirm this 100% as MS before starting the needles”. That attitude has changed drastically. “It’s been 8 years since your symptoms started, waiting a bit longer won’t do much harm”. No, because the harm is already done. I have permanent problems now (the numbness and tingling/pins and needles is constant and has been since that stupid relapse in the summer). How much more damage has to be done before I’m allowed to slow this disease down? No more waiting. When I finally see Dr Kickass, I will not be leaving that exam room without a prescription for interferon. The time for being nice and pleasant and agreeing with the doctors 100% is gone. Now it’s time to get something done and start taking care of things. I will not wait until I’m in a wheelchair for the rest of my life to be treated. DMDs (disease modifying drugs, the treatments that slow down the progession of MS) have been prescribed to other patients who were not yet given a definite diagnosis, so why am I the one being forced to wait? No more. It’s like I’m being punished because Dr. Quack ignored my symptoms when they first started. I’m not tolerating this any longer, and it’s starting with my first MRI.

The first MRI was done in Hellhole MRI Clinic. They put up a fight when it came to actually handing over the results to Dr Kickass. They only gave her a report starting what they believe were the results. That is bullshit right there. So, at the end of the month when my dad is on holidays, we’re taking a roadtrip. We haven’t settled on an exact date yet, but I know it will be the last week of October. I’m calling them as soon as we settle on a date, telling them “you will have a copy of the IMAGES and report ready by such and such date”, and I’m driving up there, signing the waiver, getting the images, and seeing for myself what showed up. They proved themselves to be incompetent yet we’ve spent the last few months relying on their word? No, that is unacceptable. I will bring the images with me next time I see Dr. Kickass so she can see the images for herself as well.

I have to stay away from support groups for a while. I’m so angry with the people that brag about stopping DMDs. How dare you? How dare you waste the time of a neurologist who could spend that time treating someone that actually wants to treat their disease? How dare you take up the time and resources of the insurance and drug companies to get the cost of your DMD covered then just drop it like it’s nothing? If you don’t want to be treated, then stop taking up everyone’s time and go rot somewhere.

Part of me wants to just give up. I cried for a good hour at least. I called my friend and honestly, didn’t get much support. I get that everyone has their own problems and I understand they are going through their own pile of hell right now, but maybe something a little bit more than “uh huh” “ya” “oh man” is appropriate when your friend is crying their eyes out to you. I called my mom and she’s just mad and trying to take control of the situation. I have to beat it into her head that no, she can’t call on my behalf because I am not a minor and medical information is confidential so she won’t be told sweet fuck all. I have to tell her repeatedly that yes, I’ve done that and this and no it didn’t go anywhere. I just feel like everyone is sick of hearing about it. Well, too bad, you’re not going to stop hearing about it until it stops going on. Plan and simple. Everyone has the right to bitch and vent when they need to, and it just so happens that right now I need to. If you don’t want to hear it then do us both a favour and walk away, hang up, whatever, just raise your hands, rinse them off, and say I’m done so I know not to waste my time with you. I had to take some tegretol in front of some classmates today on break, and there was an awkward silence and glances back and forth at eachother like “wtf is that?” Gee, that wasn’t embarassing and humiliating (FTR: I did not tell them what it was or what it was for. I just popped my pill and changed the subject). Oh, and about the accommodation for the TN: I had 2 tests today (rocked one, second one I’m not sure on), and both teachers reacted like “oh is this an accommodation? Surely it must say that you have to take the test in a different room, but you’re giving it to me last minute so I don’t have to abide by it today!” Had to point out to each of them that no, it is not having to do with tests, so read the whole thing not just skim over it and focus on the word “disability”.

I’m done crying for now. I’ve got that out of my system, and now I’ve got my game face on. I’m angry, I’m fed up, and I’m not putting up with being ignored anymore. This has to end now. The light at the end of the tunnel is a very slow moving train, and I’m tied to the tracks. It may take forever for the train to get to me, but by the time it gets here I’ll have the knots undone and be ready to derail that fucker.

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