Deja vu – But not the fun kind.

For as long as I can remember, I have had odd Deja vu “episodes”. As a kid, it was more like remembering a dream. No ill side effects. Just dreams I never had (that I could remember) popping into my head. Didn’t help I had a VERY vivid imagination, so I just chalked it all up to that. It wasn’t like I had it a lot, maybe one a year or so?

In my teens, I think that whole time I maybe only had maybe 2 episodes. Again, just figured it was memories of my childhood. Once I became an adult and had my son, they became more intense. They started to have physical effects as well.

When we lived in town (from sons birth until he was 8?) I only had maybe 2 in that whole time, but those were the first ones I had that had the physical symptoms. I would get sweaty, but cold, narrowed field of vision (slow blackening of vision), very intense nausea, and other symptoms similar to what most people get just before passing out or throwing up.

*knock on wood* I have yet to pass out from it, but during the episodes, while I am conscious, what feels like a short time, usually turns out to be about 5 – 10 minutes. Once we moved out-of-town, I began to have them more often, almost one every month or two. At that time, it was the same “vision”, almost like I was looking through a veil (like in cheesy movies when they see through time – cloudy, but you could step through and be there). The harder I tried to focus on the “memory” the worse the nausea would get.

Once we moved to this house, the first few months I had quite a few, then they slowly disappeared. I hadn’t had one in over a year, only to get hit with one last night.

This was the most intense one I had had in a very long time. It was so bad it affected my stomach problems, I felt very sure I was going to throw up and have diarrhea. I was sure of it. Usually I can control nausea, force it to pass, but I was fighting it so hard, and felt I couldn’t get a handle on it.

It was a different “vision” than any I have had before, and the shower spray and song I was listening to seemed to be the triggers? It was absolutely scary.

I have researched it in the past, and it seems to be either “Nothing to worry about, just past lives or forgotten memories being recalled” (Not getting into THAT … pftt) or “They are petite mals from epilepsy”

I finally (last year when I had a few in a row) asked my ex-nurse Mom about it, and without even telling her what I had researched, she stated with conviction and authority “Oh. Tell your doctor, you are having petite mals”.

Of course, it is the ONE thing I forgot to add to my list of symptoms, and have never mentioned them to my doctor. *forehead desk*

Someone remind me for my next visit.

I’m a dork.

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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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Hope is dangerous

I have yet another doctors appointment this Friday (just had one Monday). This time, it is not to “fix me” or treat symptoms, or placate me. This time, at my doctor’s suggestion (when I asked about a specialist), we will sit down with my list of symptoms, my list of theories on what I might have and why, and figure out WHAT specialist I should go to.

Thing is? I KNOW it is going to take MONTHS to get into a specialist, and he wants to send me to one over in Kelowna (which means an over night stay), But I will let him know I am willing to go to Vancouver, or even Edmonton or Calgary, over night is over night, 4 hour or 9 hour drive, either way it’s not a lot of difference. And if a longer drive means a better doctor, or shorter wait times? Then let’s do it.

Knowing that it could be months to get in, I am strangely optimistic about this appointment. I have no clue why? I did warn the doctor that I my list includes ALL symptoms, even non stomach related. After all, maybe, just maybe some of them are connected in some weird way.

After all these years of different health problems, and being married, and having a kid (and a demon spawn that has left a permanent scar in this family), you would THINK I would have learned how to control and suppress hope. And in many ways and thinks, I have. But, it’s weird. I can’t seem to stomp out this spark. Sort of annoying really.

It’s like a house fly that is super smart and knows how to escape just as you are about to crush it. But comes right back as soon as you let your guard down.

DAMMIT!

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Lost in thought

I think I mentioned a few posts ago, I have quit keeping track of my health in my journal I made. Not sure why? The making was the best part of that whole process. I have gone a different route, for now. I have made a list of illnesses/disease that fit majority of my symptoms (of course the only two that work are both auto immune disease. Go figure), and why they fit my problems. I have also started a list of ever last symptom I have, even if I know it is just some random, common type.

I am doing this, because I need to get my doc to refer me to a specialist. The general consensus with my family is an internist. As mom said, even if he is not the right guy, he will know more than a GP, and will be able to refer me to the proper specialist. Whatever. I just need a solution to my issues. I don’t care how, but I only have 23 days to get this solved, then I HAVE to go back to work. I know they only want me back if I am 100%, but that’s just tough titties! I can’t afford to be off work once EI runs out, so they will just have to deal with sick me. And I will just have to plow through, hoping that I can manage to work through whatever this is.

I am 55% sure that I could work 4 days a week, 6 hour shifts. It would be very hard, but I am sure I could do it? That would also allow me to keep the minimum hours needed to stay on the benefits.

The only other plan that would work, is winning the lottery. But since I don’t live in Ontario (the largest concentration of Canada population – and where ALL the winnings seem to go), my chances are slim to none for that plan.

I’ll keep hounding the doctor(s), and I WILL get some sort of answer and get back to work by July 1st. Some how.

 

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TMI!

Just need to whine, vent, and swear.

My bowels are over the top bad today. I have gone three times now, each progressively more painful than the last.

This time, I have years rolling down my face, and I can not stop them. Between the feeling of being turned inside out, acid in the fecal matter, and the hemorrhoids screaming from the pushing (not by choice. Much like labour, it is by reflex, not choice. Actually feels like I have an elephant trying to crawl out my ass), along with the bowels cramping and twisting, the pain I am in is very close to an 8. Damned near a 9 at points.

What can I say, I have a high pain threshold. *Shrugs*

Still not quite as bad as what sent me to the hospital. That truly felt like I had molten metal coming out my butt, and broken glass in my colon. Plus like someone was trying to cut their way out.

No, this isn’t THAT bad. But enough I needed my heat bag set to nuclear, and a new box of Kleenex for the tears and snot.

It is times like this, I am reminded why I am not working, and why I have moments where I actually want to be dead! Or paralyzed from the waist down.

No feeling, no pain.

The hardest part is, because of my newest medication, I can not take Percocet (which doesn’t work on the hemorrhoids, but DOES work on the back, pelvic, and bowel pain). Percocet is a life saver when it gets this bad. But the new medication, even in its tiny dose, is a opiate blocker. I’d have no adverse reactions, just be a waste, as it wouldn’t work.

Thankfully, in the time it took to type this out on my phone, the pain has subsided (thank you nuclear heat bag!!), and the distraction of posting has kept me from panicking. I had begun to hyperventilate. Which is never fun with asthma.

So, sorry about the graphic images, but thank you for allowing me to calm myself by traumatizing you.
NOW maybe I can get more than an hour of broken sleep?? Usually when the pain and “labour” is this bad it means I have finally rid myself of what was irritating me. Loose lining, or just being backed up – not constipated, or because I am mid-flare.

Over 24 hrs awake (I am not counting my two attempts at sleep, because while I dozed, I didn’t get restful sleep and could feel the sharp cramps keeping me from real sleep)! I need more sleep than that.

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