Monthly Archives: March 2014

The joy of over extending.

When I go into the doctors office I often tell him with exuberance that I am doing great.  That I am dancing, hiking, working.  He often smiles almost sadly and nods and says, but how is your pain?  I shrug and say it doesn’t matter, and he says “so not so good, then there is room to improve and we will keep working”.  The truth is the pain is almost always there to some extent, its just a matter of whether or not the pain is bearable.  If its at all bearable then I do whatever I can, almost frantically because I know in a matter of hours I can be rendered immobile by pain. 

I have very fortunate circumstances, a family who understands my limitations, awarding jobs that give me some flexibility or are only a few hours a day at the most, and I tend to go out alone, that way I don’t disappoint anyone else if I can only stay out 40 minutes, or even have to go home before I even leave the parking lot.  I also know I am able to over extend myself for brief periods of time, because I will have the freedom to recover the week after.  So I allow myself occasional art festivals, or teaching summer camps. 

Sometimes I manage so well I forget that I am not healthy.  I volunteer at the gallery and then take a dance class on the same day and I feel invincible.  I teach an hour and a half class and make a meal and I start thinking I am nearly recovered.  (from an illness I can’t recover from).

Over extending myself doesn’t just lead to exhaustion but also to secondary issues.  I can manage a weekend long artshow by myself but then I will be exhausted for days, and not just that but my weakened immune system seems even more compromised.  So things like infections and flus start piling up.  I tend to fall down more often.  For days or weeks even I spend less time “living” and more time existing. 

Yet I am fortunate to be able to over extend myself for short periods of time and the rewards are so worth it.  Take this week for instance.  I am teaching a half day summer art camp.  I get to be an important part of the lives and education and self expression of some amazing kids.  I wake up early, make sure I am all in order for the day, try to eat some healthy fuel, and start the day with an excited smile.  I have a great time with the kids and being sick never crosses my mind, and if I feel sick I push the thought deep enough that it doesn’t bother me while I am teaching.  Then the kids leave.  And I clean up…usually dragging a bit by this time, hopefully I don’t have to do anything too strenuous like scrub floors but sometimes I do and that’s just part of the job.  Usually by the time I get in my car I am exhausted and by the time I get home I can hardly make it upstairs to bed.  I spend most the day in bed often just in a half aware mode, staring at the same webpage for an hour and it not registering or zoning out to the tv.  I fall asleep early and wake up with just enough energy to get me through the next day.  I can keep this up for four to five days.  Which is great because that is how long my classes last. 

Besides being able to do some awesome things by over extending myself for short periods of time I get another gift.  The repercussions make themselves so clear that I am left feeling always grateful.  Grateful that I am able to work at all, that I am able to sometimes dance or spend an hour in the woods, that once or twice a week I can lovingly make a meal for my family, that I can touch the lives and be touched deep in my soul by amazing and talented youth, that I have the time to create.  These things give me so much material for happy thoughts when I can do nothing else but lay in bed and live in my own head.

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Ribs dislocated.

I saw the chiropractor Wednesday and the adjustment was painful. He said the ribs were out pretty badly and the adjustment might not hold. By that PM I was pretty sure they hadn’t. Thursday I took two Alleve and made it to my sons concert and was even able to get through my dance class in the evening. My hopes were that the adjustment was just so hard on my body that I was still in a lot of pain from that. This morning my body insists I stop lying to myself. The pain is intense. I will make an appointment as soon as its a decent hour. In better news my now 6 day migraine much milder in intensity
. Even with the ribs my health seems finally on a little upswing.

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Filed under Migraines, slipping rib syndrome

Allergic reaction

After a long week of increasing pain I took my first prescription pain pill in a long time. The doctor gave me tramadol. It was great, I was out of bed and painting and felt decent for a change for a couple of hours before bed. Then I went to bed and woke about an hour later with crazy itching. Another medication I will need to add to my no thank you list. Luckily itching is the only symptom so no epi pen needed.

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Midnight migraine

Wee hours of the morning I woke my husband to get me migraine Meds. The sound or my own breathing was painful. Infact just the air pressure on my ears sounded like screaming. By 4 am I was wide awake and still in miserable pain. I could hear my pulse so loud in my head. It didn’t take long to realize it was irregular. Thuda, thuda, thu —–(4 second pause). I don’t know if the odd pulse was causing the migraine or the other way around. But the noise of it was driving me crazy. Then I remembered what my musical friend Carlos said to me about static over a loud speaker at a restaurant. He said think of it as music. Then I started to think of Don Baarns Musicality lessons. Soon I was counting the heart beats like music one and two and three, pause, pause, pause, pause. Before too long I was doing preps and double pirouettes in my head. Dancing to the rhythm of the pain. It was calming. I hope when it’s time for me to leave this plane I can let go of fear and just let my imagination dance to the rhythm of goodbye.

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Filed under Chronic Pain, Coping, Migraines, Pain

Pain journal

I have a brand new symptom and I don’t like it one bit. I don’t know if its my psoriatic arthritis or a side effect of the remicade or mysterious new ailment.
It feels like some is stabbing me with a sword up through my shin bone. It started last week with shooting pains through my wrists but the pain is intensifying and over a larger area now. It’s enough to make me drop what I am doing and scream. But then I goes away, after a very long few minutes. And I am ok, except for all the other things causing me pain.

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Is it all Latex?

I woke this morning still itching from yesterdays Latex allergy reaction. My whole body itches, my eyes, inside my ears, and I have a big welt on my foot that has gotten worse and itches enough that I want to cut my foot off. I went to sleep determined to talk to my doctor, concerned that the Remicade allergy he gives me a big bag of steroids and another of antihistamines for could be me reacting to all the other latex used in the infusion office, or maybe even some tube or connection they use on my IV. This morning I woke thinking about other times I have had this reaction when I didn’t think latex was involved. Every single time it was in the emergency room, before I knew I had a latex problem, and I just assumed it was a reaction to the pain medication. They give me antihistimines which never seem to do anything for the itching but make me tired enough I can sleep anyways. I am not sure if this is a case of the more I know, the more paranoid I will get, or the more I know, the safer I will be. A friend told me we all die in the end, but I am not ready to die any time soon, so I need to be more diligent at keeping the latex at bay.
I have had trouble with reactions in AZ with latex in restaurants but I have only had a California latex food incident once. Since the new law it has happened twice in two weeks. I guess its time to know as much as I can about my own allergy, the way my body reacts and what I can do.

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New California Law just might Kill me.

Starting January 1st California implemented a new law that would require food workers of all sorts to wear gloves during prep.

This will have unintended problems with some food prep, such as making a lemon twist, or preparing sushi, both rather impossible with gloved hands, but also waste time and money as the gloves need to be changed every time a new food is being handled. There is a fear that to save that time and money that gloves will be changed less often, and a dirty glove is much worse than a clean hand.

For me though the issue is much more personal and much more important. I have a fairly severe latex allergy and latex gloves being used to prepare my food can be deadly for myself or others with a latex allergy. Even gloves being used in the same kitchen, even if not used to prepare my food can be dangerous. Latex gloves release very small particles in the air when snapped, or put on or removed that not only get into the food being prepared but also become airborne and can land on any food in the area; which is what happened to me today. I ate a salad with completely recognizable ingredients and also had checked prior as to latex use in the restaurant and was told they don’t use it. Well it turns out they do in the preparation of some foods and some clean up. Latex gloves didn’t touch what I ate, but I had a reaction anyways. First my mouth started hurting, then my eyes started itching and within 5 minutes my whole body was on fire with a horrible itch and I was having trouble talking and breathing. I got dizzy and felt faint and confused. I probably should have called 911 but I didn’t realize at the time it was early symptoms of anaphylaxis. Instead I took two benydryl and cancelled my afternoon class, and was careful not be to alone. Even after the double dose of antihistamines 5 hours later I am still itchy.

Latex gloves are illegal in three states in food establishments but California added a glove law and forgot to make latex gloves illegal.
Latex gloves are very tactile and fit tightly so may often be preferred by food handlers than the plastic ones that fit loosely and can fall off easily. Synthetic alternatives to latex gloves can also cost more.

I first thought I might have to quite eating out to be safe, but what is protecting the food at my grocery store from containing latex particles. Anything food by hand in california now may have been touched by latex gloves, that includes bags of greens, ready made sandwiches, any raw meats, sliced cheese, breads.

For now I will continue asking if restaurants use latex gloves in their kitchen, but I will also take a daily antihistamine and also never again leave the house without my dpi-pen. Restaurant owners, if you use latex gloves you might want to put it on your menu or even in your window, the last thing you want is to follow this new law and wind up killing someone.

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