I am good

As a society, and as a general optimist we are pretty much trained to say so much in response to the question “How are you?”  I found myself saying it to my doctor again, with a smile on my face.

Dr : “How have you been doing with your illness?”

Me: “Oh, I am great, how are you?”

Dr :  “You seem to be responding fairly well to the meds still, do you feel they are still working for you?”

Me:  “Well yes, they work great, I feel great.”

Dr.: “No problems with the weather change?”

Me: “Oh that, yes, well bad crushing chest pain that started three weeks ago, but it only lasted about a week, and its gone now, most the time”

Dr.: ” So you are you able to dance again?”

Me: “Well no, not really, I guess my breathing problems are still not under control enough for that.  Honestly I know this illness should be my biggest concern but the medicines are working well enough, and my breathing issues have been bad enough, that this illness hasn’t been my biggest health concern in over a year I feel great.”

But maybe what I should have mentioned is I wake up in pain, and sometimes can’t sleep because the pain wakes me.  And that no matter what mild activities I do all day, I am usually worn out and in bed by 5 pm or so. Ok sometimes 3.  And if I work or have plans in the evening, I have to plan for pretty much doing nothing all day, so I can make it to my evening plans and still be upright.  Maybe he could have made a slight adjustment to my medications to help.  But I think of that as being good.

In comparasion that IS good.  I am getting out of bed EVERY day.  Some mornings I exercise.  I am starting to spend some time with my good friends again.  I show up at my part time job, I volunteer occassionally at the gallery, I paint, I contribute to housework, I spend time with my family. For me these are things I have not always been able to do, and I am so grateful.  For me they are huge.  Comparisions make a huge difference to those of use who deal with chronic illnesses.  Life doesn’t have to be someone elses idea of good.  I didn’t lie to my doctor when I said I was good.  I just forgot his idea of good is different than mine.

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Turning a corner

For those following my health closely you probably know on top of being blessed with Psoriatic Arthritis I have also been struggling for the last year with a breathing problem that the doctors have loosely diagnosed as probably some sort of autoimmune toxic induced possibly originally acid reflux caused asthma.   This has lead me to give up dancing and hiking for nearly a year now, and at its climax last october and again this summer, has lead to periods of having to basically live in a bubble, having to avoid contact with strangers and any none controlled environment (such as the grocery store, or anyone who might me wearing deodorant, or any place someone may be smoking in the parking lot of).

After months of testing most of which have been inconclusive, and medications, and living in a bubble, my body has adapted to a somewhat normal stage again.  I still can not handle toxins.  Hooray for you, I am still your canary in this coal mine we call society.   I am now able to go to grocery stores, and out to dinner again.  My doctors think it was just an over exposure to too many toxins at once and that this may occasionally happen to my body and when it does, I will just have to withdraw from society until the danger passes.  I still can not dance, but I feel like I can start to function again.  Still not going to give up on a proper diagnosis, and staying on all the medicine.

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Arthritis in my hands waking me at night

The Remicade still seems to be working great, as far as I can tell.  I have had my physical adventures seriously limited due to breathing issues, so really I don’t over tax the arthritis much.

One thing I have notice is waking three or so times each night with crushing pain in my hands.  Like my hands just had a semi truck fall out of a sky and land on them.  This has been happening every night for over a week.  The strange thing is my hands seem ok during the day.  Has anyone else with PSA had this problem?  Maybe its the fact that they are not moving for a period of time, because during the day my hands are always moving.  Its a new symptom, like the others I can live with it, just curioous if there might be somthing I can do.

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just the way I am

So I do all I can to manage my Arthritis, and don’t drink, so that I can take what I need to take to manage my migraines, then have to watch my diet, so not to aggravate something else, and as soon as I get one thing nearly under control, an new thing pops up.  It just seems like its the way my body is.  I guess I am lucky, I have never had to deal with anything terminal.  But boy, the pain can be overwhelming.  I was having a great weekend, finally a couple days of breathing almost ok.  Don’t get me wrong, I will still having to use an inhaler a bit too often, and taking more medicine for some unknown condition than anyone should have to, but I could get through my day and fake being a normal person, that felt awesome.  I haven’t been able to do that in months.  Halfway through my day nausea hit.  I had woke with a migraine, so passed it onto that, I am used to ignoring “symptoms”.  An hour later unmistakable pain in my left flank, I had to leave work and drive myself to the ER, sure I had a kidney stone.  I did have a tiny kidney stone, but the ER doctor was sure the pain was caused by something I didn’t have three months ago, a cyst in my Kidney.  This has kept me writhing in pain on the days that I can breathe, but luckily it doesn’t seem to all strike at once.  My pain seems to take turns, Arthritis, migraine, kidney, breathing, ribs, sciatica, migraine.  Lucky me.  It’s just the body I have.  The thing is…I have been waiting.  My whole life.

I have spent my life waiting for the day I would be healthy.  I think its time I come to terms I will never have a healthy body.  My body is a lemon.  Hey…I will live with it.  It works…kinda.  The heart keeps beating, the brain is kinda awesome, the blood keeps pumping, the nerves work, it could be so much worse.  It doesn’t need to go to some junk yard, there is no replacement body.  I will keep doing what I can to take care of it.  But I am going to stop waiting for it to be another body.  A perfect body.  Maybe it was environmental, not having proper nutritional as a child, or something I was exposed to, or just genetic, I may never know why, but its time for me to start having some acceptance.  I don’t mean giving up.  I still will continue my fight to be as healthy as possible.  But I am going to stop waiting to be healthy.

I went to Europe last Spring,  I took a 18 hour plan ride with fear of a kidney stone, I had asthma attacks weather in French castles or super clean dutch homes, one day I was in so much pain I sat and cried in a street where I could not speak the language, until I could pull myself together and fit a seat in a cafe until I felt well enough to walk.  I could have waited until I was all better, but I just waited until I was better enough.  I had a friend say the other day that I was lucky, that when I was better I get to go back to a normal life.  The thing is, this is my normal life. My normal life is one of shoddy health.   And she is right too, I am lucky. I know a lot of my friends are waiting for me to get better.  Waiting until I can go dancing again, waiting until I can travel, waiting until I can go out and have fun.  I have a few friends who aren’t waiting.  A very few who are my friends anyways.  I love all my friends, but those who aren’t waiting, who love me as I am, sick and all, I am learning from you.  I am going to stop waiting too.  Its time for me to start loving me as I am.

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Asthma update 

My asthma had stabilized over the last two months at “not good enough to dance with but good enough I could function with a halfway normal life” but this week it has taken a sudden an alarming turn for the worse. I am back on my inhaler too many times a day, basically unable to function even with mild tasks after lunch time, using my nebulizer several times a day again. There have been a few times in the last two or three days I have wondered if I could just check myself into a hospital, so I know I will be safe and not be a bother to my family and friends but I don’t think HMOs allow for that. They give me a fix that will last a few hours and charge me $100 and send me home. Feeling a bit helpless. Maybe it’s just lack of oxygen to my brain. 

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Asthma and cigarette trigger

in September of last year I step out of a dance club to get some cool air and sucked some in a big unexpected lung full of cigarette smoke. Yes, unexpected, this wasn’t a typical bar but a club of dancers, the kind that danced for hour on end and smokers are pretty non existant, and if someone smokes it’s far from the entrance or patio. I had my first asthma attack in probably about 7 years. I had no inhaler on me and couldn’t get it under control and the smoker didn’t leave so I did. Three days later my lungs were still irritated and just walking by a smoker outside a shopping center set off another attack. I went home and found my inhaler and it had expired 5 years prior. Within a week I could no longer handle  any chemicals, so no perfumes on friend or strangers, no public restrooms, even cigarette smoke on someone’s clothes could set off a severe attack. Dancing became impossible and oh how I love to dance, but then most things became impossible. Working, even for very short hours, grocery shopping, feeding my family or myself became what seemed nearly impossible hurdles that took great planning and all my strength and energy. I have switched medicines so many times since then to get something that allows me to function and live somewhat normally, yet dancing still seems not quite possible. I take four medicines a day to control my asthma and most days haven’t needed my rescue inhaler unless exposed to a strong perfume or around someone who smokes. So I was getting better. I even danced for an hour one night. But now I am back on my rescue inhaler more times a day than recommended, back on my nebulizer and back to going through life actively “working” to breath. I am also acutely aware of how my breathing problems might be a hardship for others.  Sometimes I think I should move out into the woods alone away from chemicals and cigarettes, where at the very least my coughing won’t bother or worry anyone. It wouldn’t be too bad to live off s’mores and have a nightly view of the stars as long as I was camping someplace where the nights weren’t too cold. 

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Health while traveling 

after nearly a month of traveling with what has been for me nearly ideal health my body seems to be in a nose dive. First the asthma cough started up again, then the migraines, then an infection, arthritis flare ups, worse asthma and migraines and me feeling like crawling into bed and staying there a month.  I suppose it’s ok. I have had a great trip and at least I will not leave thinking Europe is the cure for all the ails me. 

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