It Certainly Feels That Way To Me

Happy 2014 to all of you and your families. 2014 has certainly come in with a bang for our island with fridget temperatures, blizzards, sleet storms, heavy rains, flooding, blackouts and rolling blackouts, oh what a time! As of yesterday all colleges, and our university and all grade schools are finally open. Our province is finally getting on track and all crisis’s has been taken care of and dealt with. News years eve my family planned a huge celebration as we do every year, music, singing, food (lots of food) and fireworks. The following day I was to cook a hot turkey supper for my siblings and their families, its tradition for our family. Unfortunately plans changed and a few days before new years I ended up in the hospital with acute cholecystitis which lead to an infection in my gallbladder. Tests also revealed that there is some damage to my liver but wont know the extent of it until after my surgery in the next couple weeks. I am currently home and taking oral antibiotics to help clear up the infection and also to prevent it from moving into my liver.

The key word I hear constantly is inflammation. Last summer I suffered with a continuous bout of pneumonia that lasted for almost 4 months and also stiffness within my heart making my beats faster than normal. I was told a normal heart contracts and rests, which is the beats we hear. Mine doesn’t rest properly after it contracts this is due to a thickening and a stiffing of the left ventricle. I was told I have inflammation of both my heart and lungs. During that time I also found out that I had inflammation of my liver and pancreas, I wasn’t feeling any ill effects of that inflammation, it showed up on tests that they were doing at the time.

I have an autoimmune inflammatory disease (PsA) diagnosed in Oct 2012 that is currently affecting both feet, right knee, both S I joints, lower back, both hands, fingers and wrists and also my right shoulder, up until Oct I was taking Plaquenil, prednisone and NSAIDS while awaiting insurance approval for Humira. I didn’t believe those meds were doing much for me because I still had significant pain, but dear oh dear, when I was told to stop taking the Plaquenil and my Prednisone went from 25mgs down to 5mgs I realized just how much those meds were helping, the intensity of pain shocked me but like everything else, I learned to adjust to it. It was also during that time while hospitalized my doctors informed me that I could not take Humira either because of my lungs. The day of my hospital release I go home to find a letter from my insurance company approving Humira, arggggg.

So fast forward to today and I am on absolutely no medication for PsA, not even NSAIDS due to my up coming surgery. My PsA feels out of control but my lungs feel a lot better, I haven’t had a bout of pneumonia since Oct and am feeling very good about that. I am told by my doctors that my medical history is complex and complicated and I understand that, what I don’t understand is why they haven’t found out what is the culprit to so many illness at once. I believe it’s the PsA, but I am no doctor and certainly do not want to offend any medical personnel who has spent years and thousands of dollars learning their skill but I feel they are missing something. Prior to Nov of 2009 I never had a sick day from work and other than my feet being painful all the time, I had no other symptoms of PsA or lung and heart issues. In Nov 2009 I contracted H1N1 virus that put me in the ICU for quite some time, it was after that time that all these other health issues started to surface. Was the H1N1 a trigger of more serious issues to come? It certainly feels that way to me.

It certainly seems like that to me too. The thread running through all your stories is inflammation. It would make sense to assume that the various problems have one cause. But I’m no doc either.
Good luck with the surgery. I hope that when you’ve recovered you can go on some really effective PsA drugs and feel a whole lot better.

Oh my. I am so sorry you are having such a terrible time. I'm not a doctor, so I can't answer whether or not the H1N1 triggered anything, but my gut says of course it did. I know it is pretty scary to not treat the PsA, particularly after everything you've gone through...but preventing a secondary infection after your surgery is probably a really good reason not to take things that suppress the immune system. Hopefully your surgery will go off without a hitch and you and your doctor will find the perfect combination of meds that will work for you. Good luck to you!

Thank you for your comments, your kind words were very much appreciated. I am actually looking forward to the surgery and knowing how much better I am going to feel when its all said and done. I also just found out today that I can work for a couple hours a day when I feel up to it. I am so happy about that I think I would work for free, just to be out and about and feel like I am accomplishing something. I don't like having a lot of free time on my hands, busy hands and a busy mind helps keep me balanced and happy

It’s great that you are feeling so optimistic. You WILL feel better after the surgery, and then you can make gains with your PsA. And winter WILL come to an end!

Thanks Seenie..... Winter can't come to an end fast enough, the entire island is experiencing more blackouts again this evening,, supply definitely isn't meeting demand. Hope your enjoying Cal enough for both of us lol

Hi Easternlady,

I read your post with much interest. First, let me say I am not a physician, and the information I am posting is only from my own personal experience. I, much like you, was never sick a day in my life before I contracted a salmonella infection in 2008 which put me in the hospital for weeks due to severe sepsis. I’ve been diagnosed with PsA, along with multiple other illnesses and infections since that time. What I wanted to share with you is that an astute infectious disease physician did an extensive immunology work up on me and I was diagnosed with Primary Immune Deficiency Disease. What I’ve been told is that my body does not develop the antibodies needed to fight these infections, which is why I stays sick with everything from pneumonia to staph abscesses all over my body. I was sick all the time!
I am currently undergoing immunoglobulin replacement therapy. The good news is that the infections have almost ceased, but the bad news is with my jump-started immune system, my PsA is worse. My doctor told me last week that we must focus treatment of the lesser of the two evils. In this case, infections that could (and almost) have killed me, versus the pain and inflammation of PsA.
I’m telling you this because my immunologist, rheumy, and the infectious disease physicians all think the bout of sepsis was the trigger for all the problems I’ve experienced since. As explained to me, when your body is severely debilitated by illness, infections, and the like, if we have these latent tendencies (for lack of a better word) for autoimmune diseases, such as PsA, they can rear their ugly heads and essentially take over the body in your debilitated state.
I don’t know if you’ve had the immunology work up or not, but it certainly made a difference for me when they found out the root cause.

Wishing you a much healthier 2014!

Hi Easternlady,

I never even gave it a thought but I also had the H!N1 right before the massive flare that finally got my diagnosis.

That was a bad flu, by any measure a very dangerous bug, and since I was not yet treated with immune suppressors, probably one of the biggest immune responses my body had ever put up. I was not in the hospital, but my husband works in a hospital and got it. Two days later I was in bed with him laid out flat, with barely enough strength as to microwave food out of the freezer and drink out of a case of water by the bed for 10 days I remember how lucky we were, grateful to survive.

If anything could kick the immune system into overdrive I would guess your right.

Thank you for your comments and information Sherri and Dot, was much appreciated and eye opening. Sherri, during my infliction of the H1N1 and along with my respiratory distress I also had developed a severe case of sepsis, during that time my husband was told by the doctors treating me that there was a good chance I wouldn't make it, guess they had no idea how stubborn I am lol. I am certainly going to research Primary Immune Deficiency Disease and then will speak with doctors about it. Its the first time I have heard of this disease and right now my doctors are pretty much stumped as to whats been happening with me. Thank you for the information and I hope you are doing well. Happy 2014 to you and your family. Dot, I am sorry you came down with that damned virus during that time, you and your husband must of had a horrible time being at home with it, I couldn't imagine. That virus has reared its ugly head again this flu season, some are saying its not like it was in 2009 but I am still quite nervous of it and am doing everything in my power to avoid it

Thank you for your kind words Sybil, your right about the inflammation, I never thought it was such a big deal until this past year and a half, guess we have to walk in these shoes or clogs to fully understand how damaging it really is. Thank you for noticing that I am perky lol, I really am most of the time and the times when I don't feel it naturally, I work on it. State of mind is so important and makes such a huge difference to how we feel, its a big reason I try not to dwell to much on my issues and just carry on with my day with a positive outlook. Not always easy to do and its a work in continuous progress lol

Not a doc either, but I can remember the day I scraped my knee on the sidewalk and the subsequent starting of my psoriasis following that. Or get really bad "razor burn" after shaving that totally turned into psoriasis. Lots of people have a precipitating event, is what I'm saying. Is their an Immunologist in your area that you could see? I'm sure you're tired of seeing doctors but maybe that one could help tie everything together. Best of luck.

Thank you for your response Sunny. I have has psoriasis for the last 40 years or more, diagnosed originally as eczema until several years ago a dermatologist did a biopsy and found it to be psoriasis. I have had it for such a long time its become part of who I am and I no longer try to hide it. I am very lucky to only have it on my feet all the time, sometimes on my hands and all the time on my scalp. I have never noticed psoriasis developing on injured skin so am also very lucky on that account as well. I did a search and I am very happy to find there is an Immunologist/allergist a 2 hour drive away. I will be asking my GP for a referral to see this doctor at my next appointment. I got some awesome feedback from this blog, am so happy I posted it. Hope you have a great day and an awesome 2014