Year in review update

My health has continued to improve throughout the year.  It turns out about 85% of my GI issues were due to the reaction of the Methotrexate I was taking for the PsA.  After about a year of tests and diets, etc, it was great to finally have an answer and a solution.

When I stopped taking the Methatrexate my inflammation from the PsA got worse.  My skin, my chest, fingers and feet are all flared up.  So instead of going back on Methatrexate (NOT GOING TO HAPPEN), my doctor has increased my Remicade dose. Not sure if it’s helping yet.

I also stopped taking the antidepressants the neurologist gave me for migraines, and the other medicine I was on for years that wasn’t helping.  With he anti-depressants I wasn’t feeling like me, and I wasn’t painting much.  Both are deal breakers, I would rather have the pain than not be me.  Oddly I seem to be having LESS migraines since stopping those meds.  I have recently started B12 and C0-Q 10 recommended by my doctor to help minimize them.

Bad chest cold kept me down for about 6 weeks, but finally I think the cough is fading and I am ready to get out dancing again.  My health keeps improving and I am on less medication than I have been on in decades.  I am feeling happy too.  I just need to get my muse back, I can live with this much pain.

Dance, Diet, etc.

It’s been a while since my last post.  Sometimes for me that is because not much has changed, but sometimes it’s a good sign.  For me my health has taken a change for the better.  I still have some major issues, but my asthma is now under control, which made a huge difference with my quality of life.  My Psoriatic Arthritis is now doing well with the remicade infusions back to being regular, and my numbers are good.  That isn’t to say I don’t still have daily pain, and sometimes my heart feels like it’s being crushed, but it does mean I get out of bed every single day, and I have been able to go back to dancing!  With my asthma controlled and the PsA controlled I am now able to focus on my migraines, and am seeing a neurologist, and my gi system, and seeing a specialist for that.  I am allergic to ALL foods (since my surgery for fundiplication, which is what helped the asthma) and can not eat without medication.  There is some possibility EVERYthing wrong with me is related in some way to PsA but in the US there doesn’t seem to be Autoimmune doctors.  Instead we get sent to doctors to treat whatever symptom our autoimmune illness seems to be attacking at that moment.  For an illness that attacks the joints, bones, organs, and GI system, eyes and skin, that makes it rather rough.  Anyways, I had to get to the point where I could breathe and walk before I could focus on getting rid of the many migraines a week, and the digestive issues, but now I can. Getting back to dance has been a life saver, not just with my health but with my emotional well being.  I have always loved dance and never felt quite like myself without it.  I may feel exhausted the next day after dancing, but it sure beats feeling exhausted after not doing a thing.

Going back to dancing made me focus on another health issue.  I had to do something about my bad shoulder.  Yes, I knew it was probably my arthritis, and not a lot I could do about it, but it hardly moves without severe pain; it’s hard to dance like that.  So I started going to a Chiropractor.  After frustration and no help that lead me to ask around and find the best Chiropractor I could.  It’s been about two months and I have improved about 50%.  This Chiropractor has also put me on a no carb, protein and fat with some green veggies only diet.  I hate it.  I hate it because I really don’t like eating meat, and I am in day 10 of a migraine.  He finally explained to me today the reason for it.  If my body doesn’t have carbs to burn it will burn my fat for energy, which is where it has been storing all my toxins, which will lead to me feeling awful.  Ok then.  Bring it on.  I can take it.  If the result is improved health somewhere down the line… (hopefully not to far away) I can take a little extra abuse.  This is not my first 10 day migraine.  I can deal.  But man… what I wouldn’t do for a bowl of brown rice right now…

 

Living with Abandon

A while ago out to lunch, a friend was complaining about their sick roommate, who seemed to be sick only when convenient, because this person when felling well did things like went out to the movies or out to dinner, sometimes even choosing getting dressed up to go to dinner instead of doing the dishes or some other important chore. I was wondering what this person could possibly think of me.

I will make travel plans when I feel a little better, fingers crossed that I will feel okay for the trip.  If I have a good day I will leave my home without consideration for chores, and go for a short hike, visit a friend I have been missing for months, or do something else that I haven’t been able to do for some time.  I know I will probably pay the price and not feel great the next day, maybe I will feel miserable even, but there was a good chance I was going to feel miserable anyways. This is how I live.  I could make the choice to stay in bed all the time, I don’t hurt too much when I do that, but I don’t HAVE to do that, and I would rather live with more pain and more activity and fun.

Last night I went dancing.  It was the first time in years.  I took it easy but still had a great time dancing a few dances as well as the easy lesson.  I slept in until 10 am and felt like I had been run over by a truck.  That was all fine.  I had a bite to eat out, and got mildly gluten poisoned for the sauce I think, and got sick immediately, and passed out for several hours. Woke up feeling miserable an hour late for an art opening I had to be at.  I quickly got dressed and crawled out the door and made it to the opening feeling like a half stepped on slug.  I wound up finding a sofa to curl up on and staying there during the whole of my visit at the opening and leaving early.  But I made it.  Then I went home and back to bed.  I live life.  It may not be the life I used to live, or the life others live, but it’s a wonderful life.  I won’t let other people’s judgement make me feel guilty about living fully on my good days.  I hope you won’t either.

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.

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.

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.

Chronic Pain T-shirt

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

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.

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.

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.