Monday, July 21, 2014
You Want the Truth?
I also know I am going to receive some random emails and comments from people that read me often but don't comment [but love to email me, what is up with that? I don't mind, really, but...um, weird?] - this post is going to pull them out the woodwork and I am ready for the attack.
After this week? I am pretty sure anything y'all sling at me is going to be cupcakes With pretty icing and sprinkles
Have at it.
So? Here we go.
I won't time line this because that is boring as sh*t - but to do this in a one-two-three [and four! yes there is a four] fashion...here is what is going on, in succinct fashion.
Well, succinct for me. Get snacks.
Initially we were told I had Lupus, which it turns out I don't have [they THINK]...but I do have a sucky ticker. Meaning? I was diagnosed with Congestive Heart Failure. We'll get back to the Lupus misdiagnosis in a few, but bear with me because the CHF happened first.
Let's visit how fun that was/is/always will be, shall we? It means my heart does not pump to the capacity yours [you healthy bitches you] does - and works extra hard anytime I do ANYTHING. Stairs, bend over to get a pan out of the cabinet, raise my arms to take a shower, drive my beloved Ozcarz. Oh hell, I am pretty sure picking flowers would congest my heart at this point. I spend more time spitting ....well never mind that.
They told me 4 years ago that a heart transplant would be a good option because I am so young and the damage had been done to my heart was enough to warrant a transplant.
Anyone want to ask why the damage had been done? No? That's Okay....let me tell you....
I have had anemia my whole life. And not the run of the mill "Oh I am having my cycle and I have lost that blood" This is severe anemia - to the point I have had several blood transfusions, including one to save Evie's life while I was a week from giving birth to her [my life too, but let's focus Janine, shall we?]
I was told time, after time and time and again "We simply don't know why you suffer from this and we can't fix it." Meanwhile...my heart was working overtime to make up for the lack of iron in my blood and dingdingding - BAM - my heart failed. We just didn't know it. For years. And you know what? Don't argue with me. . .this is what happened.
Okay, moving on.....two years after THAT skippy little diagnosis, I was told my liver was shutting down. I was hospitalized for 7 days for that fun rodeo while they tried to figure out what the hell happened. Considering I don't have hepatitis, don't abuse drugs or alcohol and gee.....those blood transfusions couldn't be corrupt, COULD THEY?
Nah - turns out it's a whole other thing - but the transplant I am actually waiting on, IS my liver. Which can be done by live donor. Which means anyone who has my blood type and wants to go through the pain and bad hospital food can donate to me.
HOWEVER. And y'all had best listen to me - I never told this story before because I know you Tadpoles. I would have [partial] livers lined up on my doorstep, because you are that way. Heck. I am that way...except I don't think anyone really wants "Larry" [yes, I named my liver. I figure he is giving me such sh*t he deserves a name. And "Larry the Liver" has such a ring dontcha' think?]
I love you all so much for all that you give me and offer, but this? Let's just pretend it doesn't exist, okay?
Oh, wait...it gets better [laughing here!] no I don't have Lupus [they think] but all of my tests [blood and x ray] explain the pain I fight everyday as advanced rheumatoid arthritis. Which is JUST the most SPECTACULAR, TICKLEY DISEASE EVER!!!!, I will have you know.
And the sarcasm drips down the screen.
Holy hell. THIS? On top of the fatigue and the breathing and the whole "Great car Skip but you are too busy barfing into the sink to drive, how's this working out" thing....
I can't even begin to explain how bad this hurts. I read back through this blog and realize how many years things were so bad and I was never diagnosed.
I have been in pain for years. I am not going to talk about the failure that are the meds they prescribe or won't prescribe to me for this pain.
This is absolutely unimaginable to me. I wonder everyday what the hell I did so horribly to have to put up with it all. Is this the price I pay for wonderful kids, a great husband and still being alive?
I am terrified at how bad this going to become in the future. I re read over my posts from the past years and I shake my head, wondering how everyone missed this [doctors] , but Sunday? Today?
I could not walk down the hall. To go to the bathroom. The combination of everything is just too much.
I am sitting in a padded chair, too scared to go to bed because I know how bad it will hurt. And that sounds simple [simply stupid?] to you Tadpoles, but it isn't to me. It hurts being alive at this point and all I want to do is sleep, oh. . . .sleep, the idea of it, the beauty. . .. yet - not within my reach.
I honestly pray for death some days. And there is the truth I don't think you all can handle. I shouldn't be that selfish, when so many have it worse. And what about the kids? Steven?
Sorry if it isn't Skippy enough for you or you see me playing so nice on FB, but if you had the days I have had you might' be praying for death too. The only difference is I have been in this pain for years. And lying about it.
I will do my best to post a happier post soon. This isn't the Skippy you like. I know that.
But I warned ya'. Sorry about it all. [and look at me, apologizing and stuffz.]
See ya' on the flipside.