The danger of Optimism

This is a bit hard to write, but I think others with illness, especially invisible illnesses might find comfort and company in my words.  Yet, I know by putting them out there its a bit counter productive for me, making me a bit more vunerable than I prefer to be, maybe some in my life will feel like I am ‘guilting’ them, that isn’t my intention.

I feel a great many people, especially those who have invisible illnesses, go to great lengths to hide their pain, not to appear whiney, not to become burdenous, and not to let their pain or illness become the focus of their friendships and relationships.  Our illnesses already take up way too much of our own lives.  Even on bad days, we say we are fine, on really bad days we might say “oh, I don’t feel great today, I think I will say in”, but we rarely say “Oh, I feel like I really might die today, just from the pain, and I don’t even know if I can get myself grapes and a glass of water from the kitchen”.  When we have pain that might send a grown healthy man to bed we might smile, get dressed and think, “oh good, today I can handle enough to do the shopping, and run to the post office, and maybe if I can handle it, make myself a healthy smoothy” because after all, its less pain than yesterday.

So who’s fault is it when someone says “Well you don’t look sick” or “You don’t act sick” or even one step further “are you sure  you are sick and your doctors aren’t just trying to get rich off of you?”.  Can we blame those well meaning friends and aquaintences?  I recently had someone who I consider a good friend tell me that maybe if I stopped going to the doctors so often I wouldn’t feel so sick.  This is a person that calls me for every problem they have, no matter how small, and I always try to help them, no matter how much pain I am in.  This is a person I have taken care of when I was in a lot of pain and sick, because they were sick, and they are not used to being sick and I am.  I was stunned.  Without medical care I know I would be dead by now.  Years ago I was using a cane, which I no longer have to use because of medication.  I had at one time lost the use of my hands and could no longer paint, which is my career.  Of course my reaction was that this person, who is suppose to love me, didn’t want me to have a life as fulfilling as possible, wanted me to have even more pain, did not care if I breathed, did not care if I could paint, or walk. Did not care if I lived.  Why would someone say something like that to me.

Then it hit me, there is only one reason.  It wasn’t that that person wished me ill.  It was that he didn’t really believe I was sick.  That is because I never give up.  I show up to work if I can possibly walk.  If there is a funeral or a wedding, or a childs first birthday, or a baby shower, or a friend having a breakdown, I will show up for my friends if I can take a breath and take a step, without moaning outloud in pain.  Maybe that gives people the wrong idea about me.  Maybe that is why people will tell me I don’t look sick when I am honest and tell them I just can’t go out to dinner because I am having a not great week.

I know I am not alone.  I know there are hundreds of thousands of people out there, who hide their illnesses every day, in little and huge ways.  I also know its hard we we do such a good job at hiding it, that we fail to get the support we need from those we care about.

I partially started this page so I would have a place to share my pain freely, and yet I hardly do.  It still feels too much like complaining. I encourage everyone who has an invisible illness to have at least a few friends they can talk to, tell the truth to.  Or at least a blog where they can spill it all out, maybe for no one at all to ever read.



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A Change in Perspective

I haven’t written here in a while, and not because I haven’t been having trouble with my arthritis, but because so many other health problems have been so much worse.  Infact, I seem to have drawn the short straw with health, and have no less than half a dozen long term health issues, and it seems like I always have several short term health issues I am dealing with as well.  I kept waiting though, until I was over them.  I have been waiting for years until I was healthy again.  Maybe many of you are on the same boat, waiting for the magic medicine, or health regime to work, so that you can be healthy and finally do all the things you have wanted to do, and be yourself again, like a normal person.

The last two years have been rough.  On top of the arthritis, I have had severe asthma and acid reflux that have really made it hard to breathe and effected my lifestyle.  One thing I have learned is that psoriatic arthritis, can make any health issue, however seeming unrelated worse, because if our body is a mess somewhere, the inflamation will get worse in that area.

I had surgery a couple months ago, to help with the reflux, which made the asthma worse, and caused a horrible, embarrassing cough.  After the surgery I suffered from several miserable side effects, some still going on months later, that I have learned I may be dealing with long term.  On top of that I am still coughing, a lot.  In fact I am coughing nearly as much as I was, about 70% as much as I was.  I was disappointed, cressfallen.

I went to my doctor, who has been helping me all along with the breathing issues.  I told him I felt the surgery was a failure.  I told him I was still coughing, a lot.  He reminded me that although I was still coughing I was off three medications, all of which I was taking a dangerous amount of, any of which could have been life threatening alone.  He reminded me the goal was to stay alive and to keep breathing.  He said he felt the surgery was a great success.  I was coughing, it was annoying, maybe a little embrasssing.  So what?  I was breathing.

I was told before the surgery that with my health conditions they wouldn’t even do this surgery on me, except that they felt they needed to in order to save my life.  Now I am breathing, every day, and very rarely having to take emergency asthma medications.  The surgery was a success.  The point wasn’t to turn me into a perfectly healthy person, it was to make sure I kept living.

I think that every day I was feeling like a failure because I was tired by 4 pm, or I would be fine one day and exhausted for two after, or I would just hurt all day long and feel like not doing anything at all and getting a little done was all I did.  I was a failure because I wasn’t healthy.  I wasn’t like everyone else.  I wasn’t my ideal self.  I wasn’t this being who could hike, and travel whenever I wanted, or go dancing like my heart yearns to, or even who can make dinner every night.  But I am alive, I am breathing, I have good days, and not great days, and even the bad days I manage to make it through.  I am not failing, I am surviving.

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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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