Tag Archives: Psoriatic Arthritis

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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Filed under Chronic Pain, Psoriatic Arthritis

Chronic Cough with PsA

I know better to diagnosis anything based on the internet but its still a wealth of knowledge that can help direct someone with an illness on what to bring up to their doctors.  I have had a chronic cough most my life.  It started as just a “nervous” cough when I was in my early teens.  In my early 30s it became severe and actually functioned my ability to live as I once had.  It was diagnosed as severe asthma, which wasn’t a surprise since I had sports induced asthma most my life.  They treated it for about 10 years as asthma, preventative drugs, inhalers, nebulizers, all to zero affect.  My sensitivity to chemicals got so bad it was often hard to leave the house.  Finally I got a new doctor who put me on a doze of meds for acid reflux.  Within days I felt better.  So now when my cough gets bad that is where I go again.  Its typical I take three to four kinds of meds for acid reflux when it gets really bad, sometimes it helps a bit, sometimes I still get worse.  Early morning, not being able to sleep because of my cough, it hit me that the cough got much more intense about the same time my body in general started to hurt mysteriously.  So I googled it.  Lungs and PsA.  And there it was.  Lungs, Aorta (which I already have), eyes, all organs can be affected by PsA.  Then I thought about what I was doing differently that might cause a flare up.  And it hit me I haven’t been dancing.  And when I don’t go dancing I no longer take several anti inflammatory a day. So I started the day with an Aleve and we will see how it goes, and also bring it up with the PsA doctor next time I see him.  Like the heart it probably won’t mean a change in the way its treated but I could possibly sto eating a whole container of tums in a day.

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Filed under symptoms of Psoriatic Arthritis

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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Tooth Pain

I have been experiencing severe tooth pain for several months now.  I mentioned it to my dentist who examed my tooth and said it was fine.  I went back a month later, and told him the pain was now excruciating, and he said I pointed out a different tooth.  Many of my teeth seemed sensitive in the test but since it was waking me up from sleep and the pain was lasting hours to days he called in another dentist and they agreed the root was compromised and started a root canal.  I go back in two weeks to finish it.  In the meantime not only is that tooth still sensitive, but so are most my bottom teeth, especially the ones in front.  My arthritis is so painful in my jaw that I started to wonder if maybe the pain was caused by the psoriatic arthritis.  I would like to know before I get any more root canals.  Of course its a new symptom and it could be my medicine as well.  I can’t seem to find that it is an official symptom,but my most common symptoms are not textbook.  I have found a lot of chat room post about people with PsA having tooth pain.  Thought I would put it out there to see if anyone has any feedback.

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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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Traveling

Well I have been through some stressful times since I last wrote but oddly enough even through those times my health has been on an upswing. Last month I took myself on a mind healing road trip to another state and my body didn’t rebel. It fact it seemed to flourish in the desert heat and I found lots of quiet time without daily distractions and finished my two best paintings to date. I also have started dancing again. I was unable to find swing locally so I have taken up Salsa and dance on the nights I am feeling my best. Often a night out dancing means I go for an 8 pm class and am home in bed by 9:30 but it feels so good to go out and be active and even make new friends. As I am feeling better and have some free time on my hands I have been spending more time with a friend who isn’t doing as well and that has been so emotionally healing for both of us that I don’t know how we managed without it. Those moments are also physically healing because we often watch TV together which gives me the down time I am often so reluctant to allow myself although I desperately need hours of it all day to avoid severe flare ups. I just wanted to blog to say I am feeling good. Living with Psa doesn’t have to mean not having a life. This week I am in Florida and is very wet here. Historically my body tends to hate the damp so wish me luck.

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Filed under Health, Migraines, Remicade

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