Category Archives: Chronic Pain

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

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

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

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

Rough day

Woke with a migraine but gone on it quickly and within two hours was able to manage a drive to the San Diego Airport. The rough part was the excruciating pain in my teeth and jaw. I took an alleve on top of the excedrine I had already taken. Half way to the airport I took another. If feels like someone has taken a railroad nail and nailed it into my jaw. The pain is spreading all the way to the back of my head. I am glad I get to be a passenger on the way home. If I felt any better I might be able to feel sorry for myself but the pain isn’t letting me focus on anything but pain.

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Filed under Chronic Pain, Migraines

Feeling Blue

If you know anything about my pain scale you know feeling blue is about as good as it gets!! While I was in Florida I had a bad string of migraines but after they faded I have been on an upswing. I am without a doubt that the Remicade has changed my life for the better. I am still achy and limping for a couple hours in the morning and I still get occasional heart attack like chest pain and have rough days, but I am feeling better physically than I have in years. In early July I started Salsa dancing, and often just could manage part of the beginning lesson, but now I am taking several lessons a week and able to stay an hour or two for social dancing afterwards. I feel blessed with a new vitality. I am listening well to my body when it tells me to slow down and take a rest for an hour or two, and find that in return my days have many more hours in them and I can be more productive.
I just want to remind others with chronic illnesses to not give up. Keep trying things until something works for you. This blue period I am going through might not last forever but if it doesn’t it will serve to remind me to keep trying to live my life to the fullest and to find medical and health treatments that improve my life.

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