Category Archives: exhuastion

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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Filed under Chronic Pain, Coping, exhuastion, Health, surgery, Uncategorized

Remicade day

Today I get my remicade infusion. I am at the doctors now and I will be here the next 4-7 hours. I have an allergic reaction to the remicade so they pump me full of antihistamines and steroids.
I also had to take steroids for bronchitis last week and I feel swollen up like a puffy balloon.

The pain that mimics a heart attack started 3 days ago, so my body is ready for the infusion. I just wish I could get it without steroids. I would rather be fat with less pain than less fat with more pain. (Thin is something I don’t even worry about, not going to happen).

In a few days I will be back to hiking and Dancing that’s to Remicade and these nurses here taking care of me.

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Filed under Chronic Pain, exhuastion, Health, Infusions, PsA, Remicade

health update. tired- 5/5/13

I have been feeling well but I haven’t been sleeping well. Most nights lately I am getting 2-4 hours of sleep and usually with my condition I need about 8 to make it through the next day. My health has been holding steady in spite of it, but I am starting to fear a big crashing flare up. I have Remicade on Monday and I am sure I will sleep then, as the meds put me out for the most part of 24 hours. Not sure what is keeping me from sleep, some migraines yes, but also an unsettled feeling of something just not being right, maybe exasperated by the early symptoms of menopause.

Still life is good, my healthy streak is holding, and feeling loved by good friends lately. Thank you universe for a great weekend at the gallery and a lovely visit with distant counsins and from out of town and family and support and love found in unexpected places.

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Filed under Coping, Daily Journal, exhuastion, Remicade

Spring flare up

Well it seems like the remicade is working, but I have been having such a flare up its leaving me a bit beat up and depressed. I am dreaming of the days I used to hike a few times a week. Just small hikes, under three miles all, but manageable, even on pain days. These days, driving to work, and walking out the door seem almost more pain wise than a person should be able to handle. At the same time the migraines are also hitting me nearly daily again, giving more credence to the theory that they are both related.

I know my weight isn’t helping the pain, no one in pain needs to carry around an extra 50 lbs, but pain doesn’t help me manage a compulsive eating disorder either. It was easy to hide an eating disorder when my days consisted of 5 to 7 hours of physical activity every day, but now when getting dressed in the morning takes half my energy for the day, exercise seems like a luxury I may never have again. I actually feel like I am mostly in control of the eating issues lately, as many meals out I split, and I have mostly avoided mindless empty calorie snacking, and make better dietary choices for the most part. I bring up the eating disorder because I know I am at risk from just moving from one to the other. When I see myself in the mirror lately, my first thought is I have to start purging. How else can I get this weight off? I have tried expensive diet plans in the past, and just self control and they just leave me depressed and any weight I lose gets put right back on as soon as I have to take steroids. The dietary lifestyle choices I have made obviously aren’t enough. I know bulimia isn’t an answer to anything, but its something I have struggled on and off with when I get very stressed out in the past. Maybe its just a way to have control somehow over something. Amazingly enough I seem to have lost my appetite for the first time in my life these past few days, so maybe that will all take care of itself with some luck.

I have been trying to manage the pain and depression productively. Painting it out like I do migraines, and oddly enough losing myself in data entry with the books for work seems to give me someplace to focus except for the pain. I have been taking Aleve daily, and I am grateful my doctor doesn’t through pain pills at the arthritis because I would be tempted to numb my mind and take them. I have some friends who smoke or eat pot for pain who have been trying to convince me. But I don’t think I can every get over my issues with pot. I have seen it ruin too many peoples lives and destroy all their ambition. I know taking it for pain is different,and I am all for legalizing it for any purpose, but I have have a repulsion towards it I don’t think I can get over.

On the plus side my paintings have taken a more creative expressive turn. Are they any good? It’s nearly impossible for an artist to see these things objectively, especially when they are new borns. But they are good for me, pure expression and something to focus on besides pain.

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Filed under Chronic Pain, depression, exercising with illness, exhuastion, Health, Migraines, Psoriatic Arthritis, Remicade

Fat and Lazy

In the last 6 months I have gone from chubby to downright fat, the evenings I spend visiting with family and watching tv. Yes I have food issues and yes I have illnesses, but in the past I have always been able to keep myself on the chubby side and avoid becoming obese. I can only manage weight with diet on a temporary basis, every “diet” becomes emotionally traumatic after any period of time. I have cut down on things like fried foods, empty calorie snacking, and cooking with a lot of butter, while at the same time not forbidding myself any of those things. I keep thinking I should join a gym again…or what I really want is a jawbone pedometer that will keep track of my steps with an app. It will also count calories.

I want the jawbone as if all I need is incentive and I will start walking laps around the neighborhood. I want it as if all I need is little hints to suddenly have a “healthy” life style. Hey, maybe I will even get some little dumbbells to wrap my aching fingers around and swing back and forth while I walk. Everyone walks…walking is easy! I know if I could just find the energy to get down to Best Buy and buy the little jawbone I will suddenly have limitless energy. In my head its my magic little pill to a slim body, to endless energy…to not feeling like my legs are being smashed with hammers with each step I take. I have a friend who on her day off spends the day cooking for the whole week. I might do that too if I can find a day off besides the one I spend in bed. Maybe not a weeks worth of cooking, but a big pot of greens and a pan of fried rice might get me through the days I grab fast food on the way to work because I woke up already with limited energy. I am sure there are things I can do that are reasonable. Instead I crave a little black bracelet that will constantly be reminding me of how lazy and weak I am. Days like today I should focus on being grateful I can walk. But since I can’t spend the day in bed anyways if I can find the strength and energy to drive to Best Buy and walk into the store..I might have to get myself a Jawbone, so I can start feeling like I am on the road to health again..instead of this road…

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Filed under exercising with illness, exhuastion, Pain, Psoriatic Arthritis

Daily Health Journal- Nov. 1, 2012

Yesterday was a big day for me.  I stayed home resting until about one then ran a couple of errand before class.  By the time my kids arrived for class I was energized.  I am so fortunate to have a job that I can plan my energy around and that I get so excited about that my body always seems to rally itself without fail.  I managed wonderfully all through class and didn’t even feel a bit of pain or tiredness until I was cleaning up.  By the time I got home I was exhausted and limping, which often happens, but feeling satisfied at another few hours spent changing the world in tiny ways.  Normally I would have limped up to bed and dinner would have magically appeared but that was not an option last night.  Last night was Halloeen.  On Halloween we have a family tradition of hosting a party for friends, neighbors and family in our driveway.

I pulled up and was delighted to find my husband and son had already decorated, got out the bbq, and tables, and had the whole thing ready to go.  My husband had even set up a candy passing out area for me, so I could feel like I was helping and not do too much.   It was  so great to see old friends that I hadn’t seen in way too long drop in.  My grandmother and Dad and Janet had adorable costumes, and my son’s band played to a crowd of teenagers and mothers.  I got to see my favorite little babies, and held them inspite of the pain my body was in.  I often felt like crying my body hurt so badly, but I experience pain all the time, and if I went and laid down the pain would continue, so I tried not to do too much, but enjoy the gift of friendship and love that surrounded me.  Too often I stay home because of pain, thinking if I drop in for a just a little, and am subdued because of pain, that I will just ruin the party.  Last night taught me that pain or not, my loved ones are happy to see me, and even those who have known me a long time, are perfectly fine that I am not the life the party.

For a while now I have not been able to hike and workout and my body, which was on the chubby side to begin with is certainly showing it.  I miss my outings with nature.  I miss my clothes fitting.  I miss not being able to do as much volunteer as I used to do.

Yet right now I am excited about the things I can do and the oppurtunity I have.  I have  a job that only requires short bursts of energy that I can plan for in advance, that in some way or the other touches my heart each day I am there.  I have family and friends that love and support me, no matter if I am healthy or not.  I have a rare golden oppurtunity right now of opening an art studio/gallery with my partner in an artsy town, that we will be making as comfortable as possible with my illness in mind, so that being in the studio won’t be any harder on my body than being at home.  Comeplete with a sofa and blankets in back, so if I get really bad I just need to close the doors and turn off the lights and get some rest.

Right now my body feels like it has been hit by a truck.  It hurts no matter how I move it or not move it.  But my heart and head is filled with love, satisfaction and the glow of oppurtunity, knowing that this life is worth living, no matter what my limitations and pain intensity.

 

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Filed under Chronic Pain, Daily Journal, exhuastion, Health, Psoriatic Arthritis

Daily Health Journal- Oct. 31

Well I won’t be able to call this a daily health journal if I don’t start writing in it more.  Just by the time I get done with running my errands and taking care of my responsibilities I go to lay down and once I lay down for the evening I don’t move again until morning.

It’s 3 am and I am up with acid reflux.  I don’t know how someone with acid reflux as bad is mine forgets they can’t eat pizza, but I ate it.  I suppose its better than being up with a migraine or other pain.

Monday I had Steve Ito work on my shoulder again and it hasn’t bothered me since.  He also worked on my migraines again and my morning migraine wasn’t  there when I woke on Tuesday.

I also saw Dr. Le about the Remicade and Psoriatic Arthritis on Monday.  I was hesitant to have the Remicade every 6 weeks instead of 8 but the pain does come rushing back after just a couple of weeks and I want to get the most benefit I can from the Remicade so I am following his advice and getting the infusions every 6 weeks instead of 8.  Its a hassle since I can’t drive myself and its so far away.  It means someone’s whole day is taken just driving me there and back and waiting for me while I have the infusion. Dr. Le told me about a law called the Family Leave Act, where an employer must give a family member time off to get necessary care.  My husband does get family medical leave but its really good to know about this law and I am sure it can help others if I don’t need it.  Basically a doctor would just need to fill out forms that any HR department would have.  Still I know I am out of service for a couple of days after the Remicade, and that I am asking someone else to take a whole day for me, made me hesitant about agreeing to the more frequent infusion.  But it really does seem to be working, and I so much want to live a normal pain free life.

I have read that the Remicade is a chemotherapy, and I know its not as brutal as cancer chemo, but it was still a little shock to see it in writing on some paperwork the office gave me.  I guess if it works they can call it whatever they like.

Some wonderful news is a friend is going to be sharing a little art studio/gallery space with me.  It’s going to be something that will work around my illness, we will but a heater in, and a sofa with lots of little throw blankets so I can be comfortable when there.  It will also have tons of flexibility so I won’t need to go in at all on bad days.

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Filed under Chronic Pain, Daily Journal, exhuastion, Infusions, Migraines, Psoriatic Arthritis, Remicade