Sharing TMI

Yesterday I had a someone I don’t know extremely well, who is dealing with a chronic autoimmune, comment about how they appreciated that I was always comfortable talking about being sick, and how that was inspiring. I felt a little ashamed because that is something I struggle with.  I was just told the day before, by someone who had known me for quite some time, that they had no idea I was sick.  At other times I feel I share too much, go on and on.  If someone asks me how I am, I do my best to answer fine.  If someone asks me how I am feeling today, and I know they really want to KNOW (or maybe even need to know like my boss or husband), I have a harder time, Especially if I told that person for the last four days that I had a migraine, and things have gotten worse and not better.

I made this page specifically so I can share the worst of my illness and struggles, but I hardly use it.  Instead my very worst days come and pass without most people knowing.  If they last for weeks, months, maybe they get a posting here.  Perhaps a Facebook post so people know why I have stopped communicating and don’t take it personally, but I am more likely to just withdraw like I have done over the last couple of years.  I know I am not alone in this.  If those of us with chronic pain and illness talked about ALL of symptoms we couldn’t help but sound like we were complaining, even if we did nothing but list them.  We would totally bore ourselves and everyone else around us.  Sometimes I feel like I do this even though I try so hard to avoid it.

On the other side of the coin, we do have limitations, and limits on energy, and our friends and family and co-workers won’t understand this if we don’t communicate.  It’s particularly hard for those with invisible illnesses because we can appear healthy and most of us WANT to appear to healthy.  We want people we love understand we are sick, but not think of us as sick.

I have a friend with the same illness who asked her mother for a cane as a gift, when she saw her mother gifted her brother a lovely cane.  Her mother said “What do you need a cane for?”.  What do you need a cane for?  I hear those words all the time now, in my head, every time some relative says something similar to me.  We talked about it, it’s our own fault, if we complained more, they would understand WHY we needed a cane.  We don’t want to complain more.  We want to live more.  We don’t need to dwell in the negative.

There is a balance.  Helping to create universal awareness of chronic illness.  Helping myself by creating awareness in my world of my own illness and chronic pain.  Just like there is working hard, and doing all we can, and working too hard and doing too much. I am hoping to find that balance between sharing enough, and sharing too much.  Some days I know I cross too much in one direction, other days I probably don’t share nearly enough and some things just feel too heavy to share.  I am sure there are two of you or so who get the bulk of my “sharing” and instead of sorry I will say “thank you”.

I know I am not the only one who walks this line.  So this is to let you know your not alone.  I haven’t found the balance yet, maybe I won’t, but it’s one of those things I can keep working on until I get it right.

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Another day of feeling hit by a truck isn’t so bad

So today, I taught in the morning, was off by noon, when to pick up a cake, dropped by the pharmacy, ran another errand and was home before two.  I rested while designing a t-shirt start to finish and uploading it, then ran to the grocery store and shopped for dinner.

I noticed right away my legs were shaky, so I made sure I held onto to the sharping cart.  I took a phone call and realized I wasn’t quite coherent, which is a sign I am over tired. I also realized it was taking me far to long to shop, and I had been at the store long over an hour and a half grabbing just a few produce items and some half and half. I got to the car and felt as if I had been hit my a truck or at least several well swung base ball bats.  Every part of my body hurt, and I had to sit for a moment before I was able to drive home.  I felt like breaking down and crying but what good would that do.

Half way home the tears started.  They weren’t tears of pain however (well not completely).  I was thinking about my day, my whole week, my life, and how lucky I am.  I get to do so much in spite of my pain.  My pain didn’t stop me from teaching this morning.  It didn’t even stop me from going to the grocery store.  It probably won’t stop me from making a sweet potato casserole for my daughter for Easter tomorrow. If it does, I can always make it on Monday, and that will be ok too.  I was crying out of gratitude.

I may spend more time in resting bed then I ever imagined anyone happily could, but it isn’t so bad.  I have at least two friends and a cat who will spend time watching tv or movies with me in bed.  I have several friends and relatives I can chat with over Facebook across the world while resting in bed.  I have found so many ways I can be creative while in my room. I wrote a book, including creating about 50 works of art that are in that book!!! I have a job that is flexible enough that I am able to go in between 2-12 hours a week and they appreciate and respect me. I have a family that makes sure I have food to eat and takes care of household chores I can’t do. I have days where I feel great, and even more where I feel okay, and the days I feel miserable are still usually wonderful in some way. My illness always seems to take more time than I expect and I never seem to get everything done off my to do list, and the days never seem to have enough hours, but that is okay with me.  That just means I always have plans for tomorrow. As long as I keep getting tomorrows I can’t complain.  What’s a little pain when I get to do wonderful things like go grocery shopping, and run to the pharmacy and teach?  Tomorrow I just won’t try to do it all in one day.

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Vitamin D

I have heard a lot about taking Vitamin D, recently, not just for Psoriatic Arthritis but for all autoimmune.  I have a friend who takes extremely large doses daily.  She actually orders her vitamin D from Canada because she can get a higher dose there.  I have another friend who gets hers from the sunlight.  She gets at least 15 minutes a day, and is doing much better.  I know I ALWAYS feel better when on vacation, and one thing I do a lot of on vacation is I am outside.

When I am feeling bad at home I tend to handle up in my room or studio.  I am going to be adding Vit D to my health plan, probably with a combo of both high dose supplements and trying to get more sunshine.  Has anyone else tried this?  I will let you know how it works.

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Chronic Pain T-shirt

Here is the link for the chronic Pain T-shirt that I designed. chronicpain

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Creating art out of pain

I am an artist by trade and I often create while in pain.  I recently started turning some of my designs into T-shirts.  Last night I designed my first shirt to help others in pain communicate that pain.  It’s for sale on Amazon, you can search Katinkabelle or follow this link. Migraine T-shirt.  I plan on making additional ones for Chronic pain, PsA and Asthma as well, I will post the chronic pain and PsA ones here when I do.

migraine

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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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