Sicko

I'm sick.... again.

This time it's been six days but what seems to happen, is that my multiple ailments start to overlap making things really hard. Most days I have some sort of physical problem that I'm managing and usually I can have an alright day. Sometimes another thing will creep in.

I was sick for three full months with the H1N1 flu and it was awful. I'm still thankful that I was able to manage through Christmas because it's really hard to explain to people what I'm dealing with and also hard to get all of my obligations taken care of.

Well, whatever I have right now was given to me by my son and of course they sail through it and keep functioning but I screech to a sudden halt.

My stomach has been giving me problems, my skin has eczema that's flaring so my face is itchy, blotchy and red, my throat is killing me, peeling lips, my tongue is swelling and my eyes are gumming up horribly. So badly, in fact that my eyes are completely red and are crusted over when I wake up in the morning. I'm a mess. I'm getting a little worried this cold/flu is manifesting itself to be something sinister.

I was just at the Dr. last week, before this cold thingy took hold. Right now it's graft vs host, pollen from our early spring and the bacteria or virus rampaging around my body. Good grief. It's in miserable little moments like this that I feel a wee bit sorry for myself.

I had to go out today to buy fake tears and watch my sons rugby game. Luckily I have the largest pair of sunglasses known to man. I had several people say, 'cool shades' which made me feel a little bit less of a red eyed freak. Of course my youngest son said, 'those sunglasses look TOO big!'

Ahhh, the bigger the better, little one. The bigger the better.

Happy Appointments to All

Just a quick note to say I'm away at my oncology appointments and won't be able to get back to people probably until after Christmas.

Wish me happy appointments :)

Trouble

Right now I'm wavering between writing an angry rant and having a pity party. My body is a mess. I went to my GP because I'm not even sure how I'll be able to get through and make it to my other appointments. I'm continuing on doing all the things that a parent needs to do like getting groceries, driving the boys to their sports but I can feel the negative impact of doing these things. I feel like I need to curl up for a week and let my body heal.

I have a thousand things going through my mind right now but they aren't settling into any particular thought or emotion. I'm just tired. My body is in trouble on so many levels.

My Christmas Wish

The flu has a really tight grip on me and won't let go. It seems to be an extension of the H1N1 coming back to haunt me in so many ways. I received a cal from my oncologist today who talked to me on the phone about what is happening regarding the graft vs host symptoms. She thinks it's my immune system gone into haywire overdrive triggered by the H1N1 and the vaccine. It was just too much on my immune system to deal with so it attacked me where it was attacking me before.

My blood work is slightly off and my liver is slightly unhappy. I will still see my doctors on the appointments just before Christmas. She thinks she may have to put me back on the prednisone for a period of time. It's a possibility anyway.

I don't think I can cope with that, so I just plan to have it all fading away by then. My wish is for stable health for Christmas.

Holding Pattern

I'm back to the ol' holding pattern, fending off pain and waiting for my doctors to give me appointments. I have to admit, I'm not pushing much and just letting things happen in a relaxed fashion. I just feel a little lost. I had just graduated to not quite being followed by my doctors like I could self combust at any moment. I just really want to be left alone.

Avoiding the doctors though, would mean surgery and other nasty things in the future. I try my best to be a good little patient but really I want to run away and never go back. That's not too helpful to my body so I have to suck it up.

I made a list the night before last, of all the symptoms that have come back. Dry eyes, vaginal pain, peeling lips, all over body pain, arthritic pain and a spastic bowel. I'm wondering now if the body pain is actually a symptom of the graft vs host? It came back suddenly and at the same time as everything else.

So, just waiting....

A OK Stamp of Approval

So I had my oncologist appointment yesterday and she says everything looks good! My vagina has turned out okay after the surgery and I have no active signs of graft/vs/host. My blood work looks normal! For the first time in 3 years!

I wasn't even sure I'd hear that said to me again. My brothers stem cells are settling in nicely and starting to get along with me.

I didn't get the big lowering of my medications I was hoping for, which is a bit of a disappointment. She doesn't want to "rock the boat". That's fine except for the steroids make me sick. I'm on such a low dose that most medical professionals don't think there would be side effects but I have them anyway. When they did my transplant they said I was the ward's "Star" patient because I was young, fit and otherwise healthy, which was a wonderful thing to hear! Shortly after that, though, I turned into the problem patient because I had adverse reactions to almost everything they gave me. They were constantly juggling drugs. It was awful.

Anyway, she did say I could stop taking one drug, the steroid. Yay! Last year when I was taken off the steroids for 2 months I started bouncing back quickly. I expect some good results in the weeks to come.

So my medication schedule is going to stay mostly the same. The one difference is that the first row of my pill box (early morning) will now be empty. The rest is still full. I also think that I've found a mistake in my drugs. Mistakes happen often so you have to be very vigilant and aware of what you're taking. I have so many doctors that it makes it hard to keep track of who's doing what. Scary.

I also am well enough now to start getting all of my immunizations done. Apparently that will take a couple of years to get them all. I'm ready to roll!


And my oncologist was very curious about what happened with my vagina and cervix. I'm the human anomaly again. She has never seen a case where the vagina was attacked by the graft/vs/host while the rest of me seemed okay. Very unusual apparently. It's the story of my life. She said she has also has never seen a case where the cervix actually closed over and blocked. At least that means I'm special.

During the surgery they released 250-500 ml of fluid from my uterus which is the same amount as my chocolate milk. I was like the human utero, water balloon.

So I think I will name myself Ms.Spectacularly Unusually Special, for the day.