Category Archives: Coping

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

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 and Hair loss

I remember when I first started the Remicade, within my first two infusions I started losing my hair.  I told my doctor who thought it was probably something else, do to hair loss not being one of the listed side effects.  Then I started researching online and found that others had experienced hairloss and that hair loss up to 1/3 seemed to be the norm, and not rare at all.  More rare was more extreme hairloss, and in a case or two it seemed to cause total baldness. 

I am lucky, born with a huge think mane of hair, I had plenty to lose.  After the first few months my hair loss seemed to stop, but in the last couple of months I have lost a lot more.  I bet I have lost at least half my hair.  My hair dresser has noticed as well.  In my case my hair now lays smoother and dries hours quicker, so I can’t say I am suffering for it.  But I am concerned for those with less hair who might have the stress of hair loss now adding to their ills. 

Remicade is relatively new and there aren’t a huge group of people who have used it more than a few years so long term side effects aren’t even reported yet.  Don’t get me wrong if the hair loss continues I probably won’t give up Remicade as it really seems to make a difference in my health, pain and lifestyle.  Besides I can rock hats, they add a certain flair.  I did want to share this issue with others though who might be considering Remicade, or experiencing the hair loss.  Maybe if enough of us share our stories they will add it as a side effect. 

Time to go paint.  Losing some hair is worth the price of being able to use my hands to create!

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Filed under Coping, Infusions, Remicade, Side effects, Uncategorized

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

The benefit of a poor memory

When I am feeling well I feel invincible. It’s hard for me to remember when my last flare up was, even if it was a week ago. Its hard to remember I can’t plan camping trips a month out with any definite confidence, or that I probably shouldn’t plan a road trip alone.

The flip side of that is when a flare up hits it hits hard, not just my body, but my confidence and spirit. It whammys my hopes and dreams and self confidence. When its hard to get through a quiet day, then there is no hope for visiting with friends in the evening, or even joining my family for dinner. I can go into a rather morbid depression if I don’t keep my mind busy.

The great thing is, when I am feeling well, I just don’t think about that much. Sure the fear of it creeps up on me all the time, but I can spend my healthy days smiling, and creating, and making big big plans, and getting as much work done as possible so when the illness does hit me hard, I won’t get too far behind.

Today is a good day. I am going to spend the rest of it acting like I have never been ill and will never be ill again. It’s not a bad way to live.

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Filed under Chronic Pain, communication, Coping, depression, Health

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