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....
RA SUCKS.
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.
18 comments:
You're gonna have to do a helluva lot worse than that to scare me away. You're stuck with me, kid.
I know how awful RA can be, and my heart goes out to you. With the kind of pain you've been enduring, your feelings are understandable. It's beyond frustrating that it took the doctors so long to figure things out. I don't suppose you wanta tell me what your blood type is, do ya?
12:34
I know I'm not the one you'd most want to here from, but I still love you. I pray for you all the time. I understand INTELLECTUALLY what you are saying- as much as I can without going through it. I am honestly glad to see you actually let it out, instead of it "just seeping from behind the mask". I can only imagine how persecuted you must feel. I love you, will keep praying. You won't lose me, even if you want to.
Sulks back into hiding...
I really can't even imagine… I went through a bad back spell this spring (had to have my husband put my socks on for me) and barely managed to make it through my work days (somehow). I can't imagine, chronic pain that goes on for years… I'll be praying for you (((hugs)))
Ditto, you are stuck with me (and 2nd Man by default, ha). My mother had severe back pain for years, and while it did ebb and flow, I saw how a chronic pain could be so debilitating. Yours just doesn't ebb does it? Hang in there sweet lady!!
Welp. Let's see here... what to say that I already haven't.
1) You can't have my liver. I need it. All of it. It's the only part of me that's actually working.
B) My X-rays will be done on my hands (feet were done last week) to see the stage of RA I have in my wrists and elbows. So I can and can't relate, as my RA appears to be still manageable... most days. (Today it was the hips... that's new...WTF?)
B2) My cysts are still ruptured, so when I do have a moment of "hey nothing hurts" (It was Friday, after a bit of tequila, also why I need my liver. Don't judge it was my preliminary pity party)another cyst seems to act up and put me in my place. Even though they are supposed to be "medicated" and under control now.
and
3.14) My test results come back this week. They are most positive that I have sjorgen's, with RA, with Ceiliac, with non functioning tear ducts, AND a failing thyroid. The kicker? They are not sure if it's JUST sjorgen's or Sjorgen's from Lupus. Both of which I thought we had ruled out weeks ago. *sigh*
So... I'm not worse off, but I'm only coming to your party if I can bring my own bag 'o fun, Mkay? But I will take one of those sparkly yummy BUTTER CREAM iced cupcakes people are throwing at you, and sit right beside you smelling the icing. Please and Thanks.
I have fibromylgia and Chronic fatigue syndrome. When I run even a bit of a fever, my joints ache so bad I could cry. One doctor said it was just arthritis. So, how come it does not hurt so when I don't have a fever? Doctors shake their heads.
Share my liver with you? Sure, if they can figure out why I have constant pain in liver, gall bladder, and ovary (maybe appendix)on that side almost continually. I suppose when I go into the hospital with emergency, someone will figure what ruptured.
However, I can still walk, sort of with my back problems. I can drive and almost get out of the car without groaning and hobbling when I walk.
I need no transplants like you do. My heart is strong and not diseased or failing. I rarely throw up. Sooo, I don't feel better because you feel so horrible. I don't feel better at all. If I could make you well with a wish, it would be done.
I do understand pain, just not your level.
I'm with you about RA sucking. I was diagnosed almost 3 years ago and no one understands. It hurts to stand, to walk, to sit, to everything! I don't know if it is the steroids or what, but I stay depressed and all I want to do is cry. I just keep it all hidden, put on my fake happy face and go to work. :(
Hang in there!!
All I have to say is I love ya gal, hang in there. My aches and pains are so minor compared to yours. I had JRA as a youngster, so bad that they told me at 12 I'd never walk again. Well I showed them and you can to. Hang in there Skippy, sending prayers, love and hugs your way <3
All I have to say is I love ya gal, hang in there. My aches and pains are so minor compared to yours. I had JRA as a youngster, so bad that they told me at 12 I'd never walk again. Well I showed them and you can to. Hang in there Skippy, sending prayers, love and hugs your way <3
All I have to say is I love ya gal, hang in there. My aches and pains are so minor compared to yours. I had JRA as a youngster, so bad that they told me at 12 I'd never walk again. Well I showed them and you can to. Hang in there Skippy, sending prayers, love and hugs your way <3
I just want to add a little foot note to what I said earlier as I know that some who read the comments may not understand our warped and twisted kinship. It wasn't meant to be a competition (I know you know that) because the truth is, if it was, it would be the WORST GAME EVER. I hate that either of us have to even know this game, much less play it, or that you're on level ten. It's too bad it's not as easy as an right click-arrow over to collect more coins and earn more lives, isn't it? Because if it was, I'd gladly give you some of my extra gluten and sugar free lives to keep ya going. (((HUGS)))
Love ya, Skips. Honesty is always the best policy, and you are such a brave woman. I would love to squeeze the hell outta ya, but it would hurt you too much... so how about a virtual one?
Mwah....
you have done nothing to deserve this. it's just the roulette of life. some people get the double whammy (or triple) and some people float through life. Like me who the worst thing I have had to deal with at this point is a bad thyroid and osteoporosis. this is what I think. the introduction of GMO foods 20 years ago has ruined people's health. The rise of all sorts of heinous diseases correlates with the rise of GMOs and the chemical soup and poisons so prevalent in our food supply. Plenty of independent studies confirm this. If any product you buy has corn or soy or sugar beet or canola products in it it is 98% likely to be GMO. and they are trying to introduce more and more GMO foods. killing people for profit. we never buy packaged foods, buy from farmers when we can, and buy organic as much as possible. I'm not saying that's what is at the root of your problems but I do think many people suffer from ailments they would never have if our food supply wasn't polluted.
so OK, I'm off my soap box. I wish I could make you better. I'm glad you are letting it all out. keeping all that pent up can't be helping.
Praying, that's all I can do. I hope you can feel the love from here in Minnesota.
Blessings!
You can post whatever you like. Your true friends stick around no matter what.
Crazy you mentioned that part about your liver. My mother had CHF, but she died from liver disease. Yes, she did drink, so her situation was different. Still, I never felt like she was a bad enough drinker to have died from it. I wonder if there is a correlation with CHF and liver failure. You just made me think of that possibility.
Of course, you will be here forever. I won't think otherwise. And you'll have me pestering you the whole time.
*shaking head*
Well the truth is out now, and we're still here...
I am sorry you are in such pain, at one point years ago I was in constant pain due to herniated discs for over a year. Couldn't even tie my own shoes- so I "get" what's like to be in constant pain. It is draining, depressing and I too prayed at times for everything to be over. I was fortunate, and after surgery was able to get back to "normal". I still have times when it gets bad, but not like before.
All that being said, I "get it" and I'm sorry you're going thru this, you don't deserve it. Hang in there- I will continue to pray for you!
A virtual hug from your favorite Duke Mom. XOXO
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