Chronic illnesses

Just a warning, I have had only 10 hours of sleep in the last 4 days, only 2 last night. Well, this morning really. So I will apologize now for spelling and grammar mistakes, as well as complete and utter nonsense!

 

**A weird song/poem/thing I started but can’t seem to finish**

The world around me moves at a pace I don’t know/the face are a blur while I am full of woe/I feel dread, I feel anger, I feel envy/ They seem so happy in the life they lead/ I know for most it wasn’t handed to them/ but how can they not suffer/ while I have to struggle with my lot in life/ I don’t see the pain written on their faces/ as I am sure it is written on mine

The world moves so fast/ it is a pace I can not hope to match/ Hope and despair are my companions on this road/

The life of chronic illness is seldom talked about/ they ignore us, whisper about us/ we hide our shame, we carry it two-fold/ our minds start to play games/ we tend to join the ranks of the worst of all/ the ones that never see light, we all shun

The world moves so fast/ it is a pace I can not hope to match/ Hope and despair are my companions on this road/

 

**No clue, I was half asleep, in major pain, and my insides were trying to escape out my ass**

 

That being said, I saw doc today. Gave him my short story, 2 pages of symptoms, and 3 of possible illness, and tests for said illness, that sort of matched my symptoms. He ruled out 2 things firmly, and ruled out one, sort of, but added one to the list. Three others, while not officially ruled out, the organs/body parts involved in said illness have all come back fine as recently as April.

This left us with the one he added (fibromyalgia), Hashimoto’s, POEMS (sort of a mash-up of 5 things, hence the 5 letters) – which is unlikely, MS (again, unlikely), and Lupus, which he didn’t make any comment on.

The one page of tests many medical sites recommend would cost a few thousands of dollars (which means medical probably wouldn’t cover it), so he picked the 3 main “markers” that might warrant some of the other tests.

IF these tests come back with positive results, then we know that “We will have a LOT of work cut out for us before we send you to a specialist”, and the autoimmune route is one of the more likely scenarios. If they come back negative, then we are still at square one, BUT, it means more possibilities are ruled out, narrowing the field a bit, and he will try to push for an urgent referral to a gastroenterologist(Oh sure, I can spell THAT right, but not some of the other words – without spell check).

He’s hoping to be able to call me Monday with results. I’ll have to go in for them, but he’ll hopefully have them Monday.

Oh! While I was getting my blood done? The lab tech (who actually managed to hurt me when she poked me?? I NEVER feel the needle.) started the sign in process so I can see all test results on-line! It goes back however long the records are kept for! Of course, being as sleep deprived as I am, I never thought to ask if it include the actual images for things like CT scans, x-rays, and scopes. That’d be awesome!

Yeah, so Even if these tests show no inflammation markers, and my free T3 is normal, I feel like it is still a step in the right direction. Negative rules out autoimmune illness, IB(insert letter of choice here), and other baddies, along with worse thyroid problems. If positive, at least we have a direction to move in, and we can add more tests to narrow it down even further.

I will say, sleep deprivation is quite the torture method, I understand why they used it. Oops, forgot what I was going to type. The weird thing, besides the memory, is that you’d think being so tired I could sleep through the hubby’s sleep apnea snoring and jumps, but it actually makes me consider smothering him, or stabbing him. I become extremely annoyed and it feels like I’m about to drift off and someone pokes me with a pin at the same time a very loud bang sounds in my ear. oddest sensation.

Thing is, It makes me SO FUCKING PISSED OFF … hubby hasn’t been feeling well today … Oops, jumped ahead. hang on, back to beginning.

So I managed to finally get to sleep about 9 am, and woke up wide awake at 10:58 am. Within 15 minutes of being awake (give or take, it was JUST enough time to start a pot of coffee, pee, and have half a smoke (nope, haven’t quit yet. TRYING)) “it” started. The cramps, the twisting, the back pain. I described it to my husband as “the cramps, and pain you get right before diarrhea hits”, occurring to him, that is not normal, no one gets that unless something is wrong. Hmm Whatever, it is THE worst period cramp (for location), with labour pain (or, from what I have been told, gall stone pain). By the time I managed to get to the bathroom, it was in my back, up to my neck dull ache in lower back, to tingling near the neck. And the cramping turns to this odd twisting, cramping, spasming, with twinges of sharp pain. And like I’ve said, labour. I am unable to stop from pushing. It is just horrific. IF I catch it fast enough, the heat bag will easy that.

Sometimes when I get like that, it means I will have 2 – 6 more BMs through the day. Today, I got lucky. Just the odd stabbing pain on top of the constant spasms and cramping. No where near as painful as when I am going, but very uncomfortable.

Of course this all took place 2 hours before the doctor’s appointment. Thankfully I was only 5 minutes late, which meant I was early since he usually runs about 5 minutes behind. Still, I prefer being 15 minutes before I am supposed to be there.

I have not be without my heat bag more than 10 minutes at a time, and my back isn’t easing up much, but at least it is confined to my lower back and right arm (besides everything else).

So back to the being pissed off.

Hubby’s sleep apnea means on average he sleeps about an hour at a time, waking for anywhere between 15 minutes to an hour. Me, even with the pain and insomnia and exhaustion, I can usually sleep a SOLID 4 hrs min (max seems to be 6 hrs). So, logically I understand when every few days he spends ALL DAY IN BED. But, when I have had so little sleep, and I am in pain … and he doesn’t even TRY to offer me the bed? I feel like murdering him. Literally. I wouldn’t. I think. No, I wouldn’t.

The worst part? I get SUPER passive aggressive. INSISTING he is more important, and needs sleep more etc etc …. Because hey, I get SOLID sleep, and more than an hour, so of COURSE he should have the bed ….

and he takes it.

And I feel blinding red-hot rage.

And guilt.

And I cry, and feel depressed.

Then anger again.

It’s bad guys. THAT is what leads me to the murdering thoughts. That I TOTALLY wouldn’t follow through on. I’m sure? I know, I wouldn’t …

Honestly? I am pretty sure he and I are BOTH going crazy, each with our own problems, and neither of us is willing to tell the other the full story. He DOES feel the lack of sleep more, so, he DOES take the bed. And since I was brought up that everyone else should be put first, I end up playing the martyr (that’s right? Isn’t it? Or am I thinking of something else?), whatever. but when I feel the selfish part come up, the guilt over weighs it, and that’s when I become a puddle.

Thing is? He practically has to force me to the bed, when he insist he doesn’t need it, but I watch him fall asleep mid sentence, or mid click on the computer, or mid-channel change …. and I just feel like crap that I need sleep. I am nobody.

 

UGH. Whatever. He can have today, Hopefully tonight I will get some sleep. I have someone coming over tomorrow … eek, we’ll see how I am for that.

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