Pain Awareness

I had quite forgotten to post about this, but I did at least make it by the last day of the month.

September is/was Pain Awareness Month.

In honor of that, I’ve picked up a meme I’ve seen in a few other places about pain and invisible illness:

1. The illness I live with is: Ehlers-Danlos Syndrome, classical type. Acid Reflux caused by a hiatal hernia. Fibromyalgia/intractable pain. Migraines (simple, cervicogenic, and complex). Raynaud’s syndrome. Asthma. Ideopathic insomnia and alpha wave intrusion into delta sleep. Bipolarism. Side effects of EDS: Orthostatic intolerance, plantar fasciitis, frequent dislocations.
2. I was diagnosed with it in the year: The main dx, EDS, came in January 2009. Simple migraines dx’d in 1998, cervicogenic migraines in early 2009, complex migraines Sept 2009. asthma and plantar fasciitis in 1994. Acid reflux started in mid-2008. Fibromyalgia is still only a tenative dx, intractable pain is what they have officially called it since Jan 2008. The sleep problems were both diagnosed April 2009. Bipolarism diagnosed in 2000
3. But I had symptoms since: I suppose I’ve been symptomatic with EDS since I was 8, which would have been 1991. Fibromyalgia/intractable pain started in August 2007. I’ve had sleep problems, including what are probably night terrors, since I was very young. I probably was symptomatic with bipolarism starting in 1996. The other issues were diagnosed within 2 months of when they started, for which I am very thankful.
4. The biggest adjustment I’ve had to make is: Where to start? Asking for help. Asking for extentions. Scheduling myself oh-so-carefully. Not being completely independant. Dropping activities that risk my joints. Daily exercise. (okay, so I was doing that before I was sick, but I was a gym rat then, and now I do my entire routine at home because I need very specific things!)
5. Most people assume: that I’m healthy – after all, nothing shows on the surface. The next biggest assumption is that I’m blind, because I work with a service dog.
6. The hardest part about mornings are: Oh god. I hate mornings. I tend to wake up groggy and stiff, oh so painfully stiff. My body doesn’t want to move. I have to get up, correct the position of the vertebrae in my spine and an unpredictable number of other joints.
7. My favorite medical TV show is: Does Bones count? I don’t like medical TV shows, as a rule, because they tend to make it look like there is one approach to treating each complex illness, when the truth is that there are myriad treatments that get tailored to an individual
8. A gadget I couldn’t live without is: air conditioner/fan. I faint if I overheat badly, and besides that I have trouble sleeping without the white noise and air circulation from the fan.
9. The hardest part about nights are: getting to sleep. Getting comfortable.
10. Each day I take 22 pills.
11. Regarding alternative treatments I: am tenative about them. Studies are so up and down about them. Thus far, the only one I’ve used is meditation for pain control, and it’s not as effective as I would like.
12. If I had to choose between an invisible illness or visible I would choose: certainly not being caught halfway between the way I am now!
13. Regarding working and career: I worry. I worry a lot. I hope that I will be able to practice once I am out of school, but I’ll admit that the terror of not being able to does crowd my thoughts sometimes.
14. People would be surprised to know: You know, I’m not sure I can come up with anything that would surprise people anymore! I’m a bit of an open book. Umm…
15. The hardest thing to accept about my new reality has been: The loss of my independence, and the constant pain. I’m not sure which of those two has been harder.
16. Something I never thought I could do with my illness that I did was: I…I haven’t done anything all that amazing yet. If I manage to figure out a way to work full-time, or to take a full-time course load, that will shock me.
17. The commercials about my illness: The only commercial about EDS that I’ve seen was for a medical mysteries TV show. The commercials about fibromyalgia did offer drugs that actually help, a huge amount! The migraine commercials tend to annoy me. An asthma commercial may have saved my life. Most commercials for mood disorders piss me off because they imply that all you have to do is take a happy little pill and you can be a happy little person. The most successful sleep medication I’ve taken was one I asked for after seeing a commercial for it.
18. Something I really miss doing since I was diagnosed is: Dancing. Oh god do I miss dancing.
19. It was really hard to have to give up: Dancing, swordfighting, fencing, archery. Renaissance re-enactment. Sewing. Rock-climbing.
20. A new hobby I have taken up since my diagnosis is: Knitting. Jewelry making.
21. If I could have one day of feeling normal again I would: go for a hike and a challenging climb up a natural rock face.
22. My illness has taught me: To accept what I cannot change (most of the time – I still throw the occasional tantrum about it)
23. Want to know a secret? One thing people say that gets under my skin is: ‘I admire you’ or ‘You’re so brave.’ No, I’m not. I’m a human being, is all. Don’t admire me for not curling up and dying. I continue to live my life because the alternative is pretty unpalatable, though to be honest the alternative does come to mind now an again.
24. But I love it when people: Just acknowledge that this reality is pretty harsh. I don’t want pity or admiration, I want understanding. I know it’s a lot to ask.
25. My favorite motto, scripture, quote that gets me through tough times is: I am not my body. My body is a vessel for me, and nothing more.
26. When someone is diagnosed I’d like to tell them: You are the expert on your own body. Think of a doctor as the consultant you call in to help guide your body to better health. Not all doctors are created equal, so don’t be afraid to get a new one. Above all else, look for a doctor who listens to you!
27. Something that has surprised me about living with an illness is: how often people disbelieve you about your experience, your reality, your symptoms.
28. The nicest thing someone did for me when I wasn’t feeling well was: Cooking. It may sound silly, but my first year of law school, I wasn’t feeling well near Spring exam time. My boyfriend made me a huge pot of stew and a pan of the most amazing manicotti, and having all of that wholesome, delicious food so easily available was really awesome.

So, did you make it through all of that? If you have questions or comments about things I wrote there, as always, post away!

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(Not) coping

Wednesday, Sept. 23-

I didn’t make it in to school today. Today, I’m a pinball machine that has been bumped off balance one too many times, eyes blinking ‘Tilt! Tilt! Tilt!’

It’s something you can’t make a habit of, missing school – especially in law school, where a huge part of what you learn, you learn in class. But sometimes, life catches up with you a little too hard.

It is one thing to know you are having a test done to discover whether you have an auto-immune problem with your thyroid. It is, as it turns out, entirely another to actually be having it done. In half an hour, I leave to go drink some radioactive iodine. Sounds yummy, doesn’t it? They scan my thyroid, and I leave, and come back to the house that is empty because the boyfriend spends two days a week at his school, 90 minutes away, where he works as a tutor (which pays his tuition and gives him a stipend to live on). I do so hate coming home to the empty house.

And really, it’s not just the thyroid. It’s the headaches, too. You see, in the last month, I’ve had out of control migraines. Headaches bad enough that my medications don’t begin to tame them, far more frequent than they’ve ever been. We don’t know why there was this sudden shift in activity. Counting yesterday, I’ve had 3 migraines in the space of a week. It’s absurd, disruptive, frustrating, and frightening. My disability level is bad enough without losing 3 days a week to migraines.

I ended up in the ER on Friday because of the most severe migraine I’ve ever had, and now they think things are at a new level: ‘complex’ migraines. Thursday and Friday, I kept having minor problems with my vision – blurring, moments of double vision, complete loss of depth perception from time to time. They tell me that means there’s some neurological involvement with the migraines, which isn’t good news. Not that it’ll do any permanent damage, just that the migraines have the potential to be that much more debilitating. It was also the most painful my head has ever been, so severe that the first day of the migraine, I came home from class and took my migraine medications, and even though they didn’t work, it didn’t occur to me to go to the hospital.

___

At that point, I had to leave to make it to my thyroid testing. I found out, when I was there, that whether my condition was autoimmune or not, it would be treated just as it has always been treated – a dose of synthroid to balance things. Nothing more, nothing less. It was, in its way, a very soothing answer. There would be no new treatment, nothing to change the balance of the way things have been with my thyroid for the past 6 years. It was a little uncomfortable, the thought that if your body is attacking your thyroid, they don’t do anything about it, but I suppose it is what it is.

I saw my doctor on Friday, and he went over the test – he said that I have nodules in my thyroid, which are affecting its productivity, but that it’s not auto-immune. A good thing, he said, as it meant no new treatment and no surgery. Eep! Totally not what they told me would happen for AI thyroid problems on Wednesday, but I suppose it doesn’t matter since I don’t need it.

I’m finishing this entry now, on Sunday, because it felt like something worth posting.

I suppose it gives a little view into the headspace of living with this boggling array of disabilities and health problems. It’s a shade embarassing to admit I have days like that, but well…I do. I think that, too, is part of living with all of this. Sometimes, it just overwhelms you into shutting off for a bit.

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Reality?

I have a minor problem.

You see, I’m a very creative person, and as such, I have incredibly vivid dreams and daydreams.

It can make reality a little hard to believe. Sometimes, it gets this dream-like quality, this sense of unreality, that makes me wonder if what I remember is real.

I’ve been like this for as long as I can remember. There are times when I’m not sure if years of my life happened; when I think that I’ll wake up and discover that I’ve dreamed about what happened in the last year or two and it’s all just wishful thinking about what will happen in the future. I’d think I’ll wake up and discover that I’m not in college, I’m still in highschool. That the whole relationship with this guy is something I dreamed up after a nice first date, or that I imagined him entirely during a dull dry spell.

It happens to me now, but I suppose it’s a little different now. Now, I think…I can’t possibly be as sick as I am. My joints, they really wouldn’t do that. The pain, that couldn’t really happen like that – not to me. The fatigue, well obviously that’s just my imagination. The GI problems, they can’t be as bad as all that. The bladder issues, surely I’m exaggerating how bothersome they are. The list goes on and on.

It’s worse than usual right now. You see, a little over a week ago, I was so sick from a flu virus that I had to go to the emergency room. I was dehydrated to the point of delerium, and then I got a migraine from the dehydration. I spent some time believing someone had put something in my head, which was causing all the pain. I tried to dig it out with my fingernails, and begged my boyfriend to remove it.

Recovering from the virus was rough – they managed to get the gastrointestinal symptoms that had sent me to the ER in check that night, but I’m sure you all know how it is with the flu – you just have to slog through the symptoms, and sleep a lot. I did both, and I’m STILL feeling the after-effects.

That’s enough to make the world a little dream-tinged, but that’s not the whole of it.

My health insurance that I’ve gotten from school for the past two years doubled the premiums. I couldn’t afford them without some serious financial hardship. Fortunately for me, I have medicaid. I could drop the insurance without worrying about what will happen to me, because medicaid will cover things. I know I am very lucky in this.

I dithered over it, though, and ended up making the decision last minute. While the medicaid is going to save my ass, the thing is, medicaid is not in all ways equal to my former health insurance. I have fewer options on where I’m going to go for certain types of care, and one of the specialists I was supposed to see isn’t covered by medicaid so I’ll have to find another one in the same specialty. I’m limited on how often I get to see some of my specialists.

The switch in insurance has also meant that one of my medications was no longer covered. I had to stop taking Avinza, because without my insurance it was about $15 per pill. Ouch. Now, Avinza is a slow release morphine medication. The slow release is a good thing, because it means you maintain a relatively stable amount of the medication bio-available, rather than the swinging dips and peaks you get with short-release medications.

Unfortunately, because I dithered, I could not get in to see my pain specialist before I ran out of Avinza. I went through a day and a half of withdrawals – always hot or cold (and occasionally both), diarrhea, muscle spasms, nausea, headaches, irritability, anxiety…morphine withdrawal is a nasty beast to deal with.

It also added more intensity to the odd dreamy feeling. My pain couldn’t be caused by my body, it had to be related to the medications. Maybe I was imagining everything – the whole thing just a product of my over-active imagination.

Now, I know that’s not the case. After all, I have a therapist and a psychiatrist who are both quite certain that my pain is organic – that is, caused by the body – not a matter of psychoses. My doctors are all firmly convinced that the pain is real, and my illness(es) is/are real, and all of my symptoms are real.

…so why is it that sometimes I’m not?

Well, I know the most likely answer to that, and I’m sure you all do, too, if you think about it. If this is reality, and I’ve got such an active imagination, why wouldn’t I dream a ‘reality’ where none of this has come to pass?

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