Category Archives: surgery

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.

Advertisements

Leave a comment

Filed under Chronic Pain, Coping, exhuastion, Health, surgery, Uncategorized

Daily Health Journal- Oct. 18

This morning I went to the doctors to get the staples out after my gallbladder surgery.  My hips hurt from arthritis enough that I was limping, but I was able to sweep the downstairs before having a PTA member come over to do some paperwork.

By 3 pm I was laying down and am tired but not feeling horrible.  Every day I get out of bed and dressed is better than doing neither of those things.

I find it interesting that my arthritis didn’t bother me in the hospital or the first week after the infusion or most of my recovery very much.  Maybe it works better right after the infusion then fades as time goes by.  Hope this is a good sign for the Remicade.  And I am so lucky, made it through surgery, and recover with no infections!

Leave a comment

Filed under Psoriatic Arthritis, Remicade, surgery

Surgery and Remicade

The rule is if you need surgery you need to plan it at least 6 weeks after your last Remicade injection.  The reasons being remicade compromises the immune system, and surgery not only leaves someone vulnerable to infection, but also can leave the body weakened and unable to fight infection as well.

The problem I had was that I not only had a gallbladder full of gallstones, which may have been able to wait the 5 more weeks for surgery, but that it was infected.  Once all my doctors realized the gallbladder was infected it they were very quickly on the same page that it needed to be removed immediately.  The infection I already had was more dangerous than a hypothetical one I could possibly get.

The great thing is that when the removed the gallbladder they removed all the infection.  Blood test showed that they got it before it entered any other part of my body.  I feel really fortunate.  I am so glad I listened to my body and went into the emergency room.  A gallbladder full of stones is painful as heck but an infected organ in someone with a compromised immune system can be life threatening.

After care is a bit of an issue but nothing that can’t be handled.  I was given a private room in the hospital to limit my contact with other people.  My husband spent my day in the hospital vacuuming my room and scrubbing my bathroom, making sure I had clean sheets, etc.

I need to limit my company, which is very hard because I love people and company and I also hate to tell people they can’t see me.  My grandmother seemed hurt when I suggested she didn’t need to come to the hospital and bring my dad and his girlfriend.  I dearly wanted to see her, and found it easy just to risk it and let her come.  My family I need of course and they are taking precautions like showering as soon as they get home and washing their hands and using antibacterial gel when they come into my room.  I am restricted to my room because I am not a great housekeeper in the first place and it will be much easier to ask my family to keep my room sterile than the whole house.

If someone really wants to visit me I need to make sure they haven’t been ill, or around anyone who is ill and that they wear a face mask while they are visiting.  I feel like I am being a little paranoid and maybe I am, but if I get sick my body won’t be able to fight it like it would normally.

I woke last night thinking I was silly, and that I should just act normal. My energy level is ok and I actually feel decent with the pain meds.  But I woke and spoke with a family member and realize I am doing the best thing for my body, and the people who love me.  I am going to try not to worry about people thinking I am being silly or paranoid, not even when that person is me.  I am just going to allow myself to be a little extra high maintenance for the next week or two.

My doctor said he normally sends people back to work in a week or two.

I am going to keep this limited exposure at least until I see the surgeon for a follow up next week. Maybe a less limited expose for the week after,and I plan on going back to work in two weeks.

2 Comments

Filed under Remicade, surgery