Tag Archives: Pain

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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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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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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Help for Migraines

I have found some things that help with migraines and I haven’t mentioned them here because they are just not things I am comfortable talking about. But if I can help one person have one less migraine it really feels like I should, despite my discomfort.

I can’t imagine there is anyone who knows migraines more intimately. I have had migraines that last four weeks without a break, ones that leave me laying on cold tile for days not being able to function at all, more commonly weeks, that turn into years where I have 3-5 migraines, with meds that work part way or temporarily, so I can function some but am just miserable while I function.

I have actually found something that works for me, or at least I think it does, its only been a couple of months, but so far great results. Its called CBD pills. Its a form of medical marijuana that doesn’t have any THC in it so it doesn’t get you high. This is important to me as people in my family have problems throwing their life way and I have always blamed the pot and I have very negative ideas about pot, so I personally would never want to smoke it. Its also important because I hate to be out of control of my body, my illness makes me out of control enough, so the idea of my mind or body out of control intentionally doesn’t sound like fun. I took the pills for a month, and within a week I went to just one migraine a week and a rather mild one. After the first month it went to less than a migraine a week and I went two months without any severe migraines. That hasn’t happened in well over a decade. Then I ran out of money and couldn’t afford the pills for a week (they are pricey at over $10 a pill that needs to be taken daily). I wound up with a four day migraine, that was responsive to medication but only for a few hours at a time. I know that isn’t enough time to conduct a scientific study but it certainly looks like its working to me. The doctor who prescribed it to me says its a preventative medication and doesn’t work for a current migraine but taken every night will lesson the occurrence of migraines. According to him you can take it any way so if you don’t mind the effects of marijuana or if you go to sleep right after you take it you can choose to take another form. I have also started using Indicream, which is a cream with medical marijuana in it, either with or without the thc, topically for my arthritis with good results.

I would be remiss if I didn’t mention another migraine treatment that I found over the year that helps. I found this out from my 90 year old great aunt of all people. This is often just temporary relieve, but when you are feeling miserable temporary is good enough. I am sure that I don’t need to go into this in detail, (or at least I hope I don’t) but its an orgasm. I know you don’t want to have sex when in a lot of pain so go ahead and just make it about the orgasm and pain relief.

(thank you Chris, for encouraging me to share with your post)

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Where did my daily health post go…

I was planning on posting daily and I did pretty good for a while…meaning maybe several times a week.  But its been months I think since I posted my last heath update. 

Part of that is because I had a rough time emotionally when I lost the gallery, but the great thing was my health stayed pretty decent through that time.  Second reason is that I have been too busy to blog.  But busy means I am feeling good enough to be busy.

I am doing infusions every 6 weeks instead of every eight, and really starting to feel the arthritis about week 5 so that seems like a good schedule for me.  Plus I have been keeping busy teaching art class to kids and adults, doing art shows, and even an occasional road trip or vacation.  I have been able to join friends for lunch, make dinners for my family and amazingly I have begun dancing.

Yes, dancing.  I have been taking 2-4 latin dance lessons every week and sometimes even a little social dancing.  My doctors are thrilled.  Not only is dancing helping to ward off the effects of the arthritis, but it is also helping with my weight problem, my mental health, my heart, and my attitude.  The down side is my feet ache 100% of the time.  And often after class I limp for quite a while, but I would do that anyways.

I am hurting now pretty much 24 hours a day, but I think a lot of that is lack of regular massage that I was getting before.  and somehow this ache while being active is much easier than the ache while in bed.

Today I had trouble sleeping, bad acid reflux, husband with a bad cough, and a couple of dislocated ribs being very angry.  But I also had a very busy day yesterday, drove an hour and a half to see a friend for lunch, then made it to another friends art reception, and still made it to my dance class.  Yes, I am in lots of pain, but really staying in bed has never made my pain go away, so I won’t do it until the day that I have to.  (Which happens about every third Monday).  Some people have bad hair, bad relationships, hunger, I just have to deal with pain.  I can do this.  I can keep creating a life I love and being the person I was meant to be.

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Four Week Flare Up

I have to write about my pain right in the heat of it, or I will forget about it when I am feeling good and never bother writing about it.  Last night I had severe chest and jaw pain, which had been getting progressively worse for a few days.  I took one aleve, than another a couple hours later but the pain stayed with me on and off until I went to bed.  I had a rough nights sleep.  My whole body seemed thrown suddenly from feeling really good into complete flare up.  My flesh is so tender that the pressure of the mattress and the weight of the blanket was more than uncomfortable but so painful I couldn’t stay asleep for too long.  I know this kind of pain can be greatly relieved by regular massage, and luckily I scheduled a visit to Massage Envy this morning.

On top of that pain I had a migraine.  I need to start paying attention to see if I regularly get migraines after Aleve, although I am not sure I can stop taking Aleve for the chest pain if I do.  I couldn’t find a quiet place to sleep in the house and someone’s computer was set to ping in a high pitch every time they got an email.

Maybe there is another reason I don’t blog about my pain very often, I feel like I just spent the last 10 minutes whining, when truly I am very fortunate.  The Remicade seems to be working great, at least for about four weeks, and my home and career circumstances offer some flexibility and understanding with my health issues.  But this is a blog I started specifically to deal with my health, help myself understand it and see patterns in it, and help others who may be going through similar struggles, so I can’t just avoid blogging on bad days.  Plus is I don’t complain to everyone here (and allow everyone the option of ignoring it) I would probably whine the ear off of someone close to me who has already heard enough, so this is a safe place to vent. 

Today I will try not to focus on my limitations, and try not to worry about the yoga classes and hikes I wanted to do but probably won’t be able to, and try to be gentle with myself and rest.  Life is good, life is still good.  The pain is like the tide, it will go out again too. 

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Filed under Chronic Pain, Coping, exercising with illness, Infusions, Migraines, Pain, PsA, Psoriatic Arthritis

Mean Reds

A few days ago I said I had to blog about how good I was feeling.  The problem is, when I am feeling really good I am too busy to blog.  I am working, planning parties and events and hosting them, going out with friends, taking morning walks, going to meetings.  That is how the majority of my last few weeks have been.  A few migraines thrown in, a night of over doing it so I could hardly walk, but mostly its been great. 

Its only when my pain gets really bad that I actually take the time to blog.  I woke at 3ish am with a mean red migraine that bordered on violet.  After two excedrine and a few hours its now just red.  I recently took an imetrix and can feel the poison of it coursing through my body.  I absolutely hate imitrex but will take it when I have to teach on a mean red day.  Got to be 100% for the babies.  I can’t take the imitrex shots at all but even the pill hurts.  I can literally feel in as pain going through my veins, in every finger and limb, across my cheeks.  I suppose I should welcome that pain as it means the meds are probably going to work, but I don’t.  I dread it.  I don’t know if this is a common reaction to Imitrex of if just my sensitivity to absolutely everything makes me feel the pain that more intensely.

I am going to try to focus on how well I will be feeling for my class this afternoon, and think about how tomorrow I am going to wake up feeling perfect and ready for a walk with my new friend in Fallbrook.

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