Well let's start by saying I am very tired of feeling ill. I have been trying to kick this cold and sinus infection for like a month. I'm not used to feeling so shitty all the time. I am just hoping that once the Imuran finally kicks in full force that I will see significant change and this will make all this sickness worth it. I'm so afraid that my liver enzymes are elevated due to the Imuran and they will take me off it after I have waited the last 6 months for it to finally start to do it's job! I know there are other immunosuppressants but that will be back to square one of waiting for it to kick in and staying on steroids in the mean time. I'm tired of the effects steroids have on my body, most recently just the swelling of my legs.
I take a water pill to help counteract that, but honestly I just feel like I have to pee every 20 minutes and haven't noticed much change yet in the swelling department.
Im on round 2 of antibiotics and hoping that this time they work! It makes life so much easier to deal with when my face doesn't feel like it's going to explode.
Please don't think I am complaining because I am not. I'm happy with the progress I make daily however small it is.
I also started taking a probiotic like Mum B told me about. Hoping to help my gut a bit and start having less stomach issues as a result. Guess we will just have to wait and see how it goes.
So it's been about 3 months since my last IVIG treatment. I had one the end of Sept/beginning of October.
At first I was petrified as to what would happen to me if I stopped but it seems that my symptoms have not worsened and some have actually improved so I guess my doctor really does know what she's talking about. Not that I doubted her just that this whole experience is all new to me and I just wasn't sure exactly what was going to happen.
While I certainly do not miss getting the IVIG I do miss spending that time with my parents. It was nice to have someone there with me even if I was sleeping! And I do miss some of the fabulous staff that helped treat me. I know a lot of people talk shit about Kaiser but I have really had exceptional service all around.
I know I did have some issues with nurse potty party and her terrible attempts at IVs but once I found sherry who wasn't afraid to feel for a vein through my tattoos instead of having to see them life got easier.
So if anyone ever tells you that you can't get an IV through a tattoo that's a load of shit I had multiple over my treatments. Also the myth of an epideral through a tattoo is false. I questioned that before my lumbar puncture in the ER. Where do all these stories come from? Do people still hate tattoos that much in 2014?
I have noticed that in the last few months that I haven't noticed my hair shedding quite as much as it was while on the IVIG so I'm hoping that continues to stay that way. The last thing I want to worry about on top of everything else is losing my hair.
Does this make me vain? Yes probably but considering my current moon face status I can't really be rocking the shaved head look. Even though I once enjoyed having half my head shaved.
Prednisone has really started to work it's magic on my body. I've been on high dose steroids since June and have disgusting stretch marks appearing all over the place. Some are dark and incredibly large, some look like divets, and mostly my legs look like cottage cheese. Not to mention the fluid retention In my knees and ankles.
It's hard to feel attractive when you are carrying around an extra 30 pounds on top of all these other things.
I mean I don't think I'm hideous or anything don't get me wrong, I know my body has been at war with itself but damn can I get a break!? Even if you just give me back my unbloated face I could probably cope. Well I guess I will cope regardless since I don't have a choice.
Once my second walker arrives it will make my life SO much easier in this place! As of yesterday my walker and all supplies have shipped ;)
I'm looking forward to it arriving along with my duct tape to decorate my current ugly slate gray walker. Yipee!
So let's talk about today stats shall we?
Hands quite tingly today. Woke up this way. Not sure if it's from writing yesterday or prepping and preparing food but regardless numb and tingly.
On days like today I can't help but think maybe they will "wake up". They never do but I can't help but hope right?
Stomach is less angry than last night. It was very annoyed by my choice to eat fresh spinach. I love it so much but my digestive system does not.
Legs - muscles feel a bit sore, thigh still hurts from where delta dropped me! Feet warm yet very tingly. Been having shooting pains through my feet and into my toes. I haven't had these pains since before I was diagnosed, I'm not sure if that is a good thing or bad thing but I will say it's quite annoying!
Body - legs feel cold yet I'm sweaty I think it may because I don't feel well but I'm not sure. But it's weird having a cold sweat going on.
Head - while my annoying sinus headache has seemed to have finally given me a break what's going on inside my head never seems to stop. Wheels always spinning!
I keep having the most bizarre dreams and I'm not sure if that's a manifestation of what is going on in my head or what but they make no sense.
Last night was about getting tattooed and there was baby ducks not the colored mallards that swim in lakes but like white farm ducks.
I kept trying to get to my appointment but Aaron kept going on and on about the ducks.
I stopped at the store on the way to pick up some cigarettes and a lighter.
I said I wanted Marlboro lights in the tall box and the girl asked me if I was from Ohio.
So needless to say I woke up and was all WTF?!
So while on the one hand I am happy to actually be sleeping on the other I am not sure that I prefer this craziness instead.
Ahh the human body, it's such a mystery.
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