March 2009


So this conversation took place early yesterday morning, and I thought it had some very good questions and thoughts brought up. All tweets are between myself and @H2Ohexagon

Oh… and I don’t think family members of mine who are Christians are going to be the most happy to read some of it… but I’m posting it anyway, because the majority of it has less to do with religion, and all of it is interesting!

# 03:04 Do you believe that every single ice crystal is designed with a purpose? Is there a built in mechanism in water? Or innate spirit? (posted by @H2Ohexagon)
# 03:05 @H2Ohexagon That’s an excellent question. I wonder if it’s a combination of all three! #
# 03:25 @autoimmunelife Do you belive that we are also created/beeing created/are creating ourselves? How does it make you feel about lupus?
# 03:26 @H2Ohexagon That one is going to take some thought, and probably several twitters lol #
# 03:27 @H2Ohexagon Hmm…. I think Earth was created, but whatever entity it was then became uninvolved… I also think we become who we are #
# 03:27 @H2Ohexagon Through a means of self creation… if that makes sense… like physically we were created, but after that we become who we are #
# 03:28 @H2Ohexagon Through our actions and choices, and the actions and choices of others that affect us…. so in that way we create ourselves #
# 03:28 @autoimmunelife Do you think we can heal ourselves from lupus? I have meet a few who believe this. I don’t know if my faith is that strong!
# 03:28 @H2Ohexagon as far as the lupus…. I’m really not sure at all how it relates to the rest of that…. it’s something I havent thought about #
# 03:29 @H2Ohexagon I just know I’m angry and upset about the lupus, even as I accept that I have it, I don’t accept it… not sure how to explain.. #
# 03:29 @H2Ohexagon I think that there are actions we can take that can help heal us from lupus… but having so many AI diseases, I’m not sure… #
# 03:30 @H2Ohexagon how we would go about actually healing ourselves with these illnesses. it’s our bodies rebelling against us. fighting themselves #
# 03:31 @autoimmunelife Yes, I know. They say we go through stages of sorrow, over and over again. It’s impossible to accept, on some levels.
# 03:32 @H2Ohexagon Yes…. And my lupus diagnosis was less than six months ago… so I’m still having all sorts of emotions #
# 03:33 @H2Ohexagon My endo I do a lot better with, though it’s getting so much worse that I’m yet again going through a grieving process #
# 03:34 @autoimmunelife I was born with it, as we (lupies) all are, it is a part of who I am like my eye colour But it’s my own body killing itself!
# 03:36 @H2Ohexagon That’s an excellent way to put it!! It’s just hard to accept that my body is killing itself… I was born with endo too… #
# 03:36 @H2Ohexagon But didn’t have issues til I was 14 (period start) and wasn’t diagnosed til 20, Lupus started getting severe last year… #
# 03:36 @autoimmunelife Those who say we can heal ourselves, say that the most important thing is to clear ourelves from fear and bitterness. 😦
# 03:37 @H2Ohexagon It hadn’t ever interfered with my life before, and I didn’t have enough symptoms for a dx. #
# 03:37 @H2Ohexagon Not sure I can disagree with them there… bitterness, fear, anger… they all seem to be poisons… #
# 03:37 @autoimmunelife But I’m angry and upset like you are, I don’t want to die, I don’t want to take the meds, I don’t want to stay in the shade.
# 03:39 @H2Ohexagon I’m sick of my finger joints swelling, I’m sick of having difficulty walking, I’m sick of wondering if my high bp is lupus #
# 03:39 @H2Ohexagon And I’m sick of meds that only help certain issues (I can go in the sun if I take my Plaquenil, and my mouth sores are gone) #
# 03:39 @H2Ohexagon I was told that the Plaq would be a big help since I have “minor” lupus (no organ involvement) but it hasn’t helped the things #
# 03:40 @H2Ohexagon that are the hardest for me to deal with. I sunburn easy, so the photosensitivity isn’t quite as much of a deal for me #
# 03:41 @H2Ohexagon Having to have my husband help me dress, tie my shoes, brush my hair or give me a shower though…. that upsets me! #
# 03:44 @autoimmunelife It upsets me too, to hurt the nes around me. My sister worries that her children might have it too and she gets afraid, sad.
# 03:45 @H2Ohexagon I feel for your sister – one of my biggest fears if I can become a mom is passing it on! #
# 03:46 @H2Ohexagon But it’s hard because you don’t want to weigh them down, even though you want to be honest #
# 03:46 @H2Ohexagon that’s my experience at least #
# 03:47 @autoimmunelife I would hate to to pass it on to children. What shall we do, screen the babies and have abortions if they are girls? Horrid!
# 03:51 @H2Ohexagon But even boys can get it… and then there are the other complications that can happen (neonatal lupus)… #
# 03:51 @H2Ohexagon And I know for fact that my endometriosis is genetic… so I fear passing that on to a girl #
(at this point she announced that she was taking off for awhile… though the tweet is missing for some reason…)
# 03:51 @H2Ohexagon Take care, have fun, thanks for the interesting conversation, and letting me whine/vent a bit #

Well… I’ve lost weight… 15 lbs… I didn’t have it to spare in the first place… I’m around 5’3″ or 5’4″ and weighed 115 at the most. About 5 weeks ago I started noticing weight loss…. and when we went to the doctor’s office the other day for an appt for E, I got on the scale and weighed 101.8 with clothes and shoes on, and stuff in my pockets… which translates to me weighing around 99 or 100 lbs now. That’s the lightest I’ve been in almost 2 years now. And let me tell you… I’m paying for it. My body does it’s best about 115. I’m not healthy then, but stuff is at least able to work properly, and I feel the best. My hormones are a mess with the weight loss, and between them and my Plaquenil stealing my appetite I’m not having any luck gaining it back. My plaq steals my appetite, my hormones make me nauseous. So between them, it’s hard to eat. I’m about ready to ask for a marinol (I think that’s how it’s spelled) prescription to try to get the weight back. If marijuana were legal I’d get ahold of some to cook with… I already know I can’t smoke it… just being around others smoking it gives me a headache… I don’t want to know what actually smoking it would do to me. But I know that cooking it into foods works to get appetites back up also. A friend of mine was suggesting getting a license for medical marijuana, and looking into getting the leaves somewhere to cook with. I don’t know if it costs money to get the license though.. and money is something we don’t have… I still haven’t been able to go back to work.
Not only was my period late this month, but I also only bled (heavily) for two days… had a couple days of no bleeding, and I’ve been spotting ever since. I’m still cramping the same way I was when I was “on my period”…. I’ll feel achy but ok, and then suddenly, out of nowhere get hit with a huge cramp that makes me ready to vomit. This is pretty miserable. I hope I can gain weight back soon…. since I know that it’s affecting this somewhat… but I’m trying not to stress over it, since I know that’s not going to help me at all with gaining it back.
I’m mid.. some sort of flare. I’m achy all over, which makes me think fibro, especially since certain tender points (which were the most painful for me when I was diagnosed) are hurting when anything touches them. It’s like I have deep bruises right on those spots… get the pressure off of them and I don’t hurt anymore in those areas… though my muscles still ache. My fingers are swelling again too.
The Plaquenil, despite the side effects I’m having, is helping some. I only have the hallucinations and nightmares if I mess up my doses (miss a couple in a week), I can go out in the sun again and don’t even really rash up at all, and I havent’ had my icky mouth sores/ulcers (they look like cold sores but aren’t), or the things that look like blisters inside my lips recently. The last time I had a sore/ulcer was mid February, and I can’t think of the last time I had one of the blister things. Hopefully I’ll be able to go back to the rheumatologist soon and find out what she wants to do for my joint issues and everything else… and if she thinks I should stay on the Plaq or not since it has such an affect on my appetite.
I can’t think of anything else new on the health front. Just dealing with some personal stuff away from here, so I’ve been busy with all of that rather than updating here….. hopefully it resolves or I find a way to be less…. high strung about it. So yah… that’s what’s new with me.

Well… I’ve lost weight… 15 lbs… I didn’t have it to spare in the first place… I’m around 5’3″ or 5’4″ and weighed 115 at the most. About 5 weeks ago I started noticing weight loss…. and when we went to the doctor’s office the other day for an appt for E, I got on the scale and weighed 101.8 with clothes and shoes on, and stuff in my pockets… which translates to me weighing around 99 or 100 lbs now. That’s the lightest I’ve been in almost 2 years now. And let me tell you… I’m paying for it. My body does it’s best about 115. I’m not healthy then, but stuff is at least able to work properly, and I feel the best. My hormones are a mess with the weight loss, and between them and my Plaquenil stealing my appetite I’m not having any luck gaining it back. My plaq steals my appetite, my hormones make me nauseous. So between them, it’s hard to eat. I’m about ready to ask for a marinol (I think that’s how it’s spelled) prescription to try to get the weight back. If marijuana were legal I’d get ahold of some to cook with… I already know I can’t smoke it… just being around others smoking it gives me a headache… I don’t want to know what actually smoking it would do to me. But I know that cooking it into foods works to get appetites back up also. A friend of mine was suggesting getting a license for medical marijuana, and looking into getting the leaves somewhere to cook with. I don’t know if it costs money to get the license though.. and money is something we don’t have… I still haven’t been able to go back to work.
Not only was my period late this month, but I also only bled (heavily) for two days… had a couple days of no bleeding, and I’ve been spotting ever since. I’m still cramping the same way I was when I was “on my period”…. I’ll feel achy but ok, and then suddenly, out of nowhere get hit with a huge cramp that makes me ready to vomit. This is pretty miserable. I hope I can gain weight back soon…. since I know that it’s affecting this somewhat… but I’m trying not to stress over it, since I know that’s not going to help me at all with gaining it back.
I’m mid.. some sort of flare. I’m achy all over, which makes me think fibro, especially since certain tender points (which were the most painful for me when I was diagnosed) are hurting when anything touches them. It’s like I have deep bruises right on those spots… get the pressure off of them and I don’t hurt anymore in those areas… though my muscles still ache. My fingers are swelling again too.
The Plaquenil, despite the side effects I’m having, is helping some. I only have the hallucinations and nightmares if I mess up my doses (miss a couple in a week), I can go out in the sun again and don’t even really rash up at all, and I havent’ had my icky mouth sores/ulcers (they look like cold sores but aren’t), or the things that look like blisters inside my lips recently. The last time I had a sore/ulcer was mid February, and I can’t think of the last time I had one of the blister things. Hopefully I’ll be able to go back to the rheumatologist soon and find out what she wants to do for my joint issues and everything else… and if she thinks I should stay on the Plaq or not since it has such an affect on my appetite.
I can’t think of anything else new on the health front. Just dealing with some personal stuff away from here, so I’ve been busy with all of that rather than updating here….. hopefully it resolves or I find a way to be less…. high strung about it. So yah… that’s what’s new with me.

My period started today.  I’d been maintaining that this was just PMS, although the hopeful part of my brain was whispering “you are late now… you could be pregnant”…. Alas I am not.  Not unless periods during pregnancy can still be brown and black like my normal ones are for one day of each period.  If that’s the case don’t count me out of the running yet… maybe all my pain is just everything starting to expand to make room for a growing baby?  But alas, somehow I doubt that’s the case… and that I just had miserable PMS to go with a miserable period.  This is the worst period since before my last lap, which has now been over two years ago.  Since I’ve had to go off of the birth control it’s not surprising that I’m getting so sick so fast… since my doc had to up it to continuous birth control to get my body to stop being such a pain … I started that in Feb ’08.  Unfortunately I had to go off of it at the end of October ’08.  I had a couple easy (for me) periods after going off of it, but they’ve been getting worse and worse.  And apparently my PMS is deciding to get exponentially worse to go with that fact.  To the point of me almost throwing up several times a day….. At least when that’s happening with a pregnancy (if all goes how it should) you get a baby at the end.  I’m sick of the mind games my body plays with me due to my health issues.  This period may land me in ER with all the pain I’m dealing with this month… In the past I at least had left over pain pills….. now I’m completely out of everything that does more than take the edge off, so I’ll have to hope they’ll even give me anything. 

On a side note… what’s with citrus flavored pills… specifically vitamins?  I expect my chewable C to be Orange… but Lemon Vit. D3 sublinguals?  That popped into my head while taking all the pills (mostly different vitamins) I take every night when I get up. 
So… Since I brought that up I’m going to list what I take – Plaquenil 200mg 2x/day, Omega 3’s not sure of the amount 1 pill 2x/day, Vit. C 1000mg 1x/day, Vit D3 1000iu 3 nights/week and B12 100mcg/day.  Eventually I want to add Vit. E to it as well…. I need to find the article, but there was research done that shows that Vits E & C take inflammation down a lot… which would be good with my endo (what the study was done for) and my lupus, since it causes lots of inflammation as well.

So Sonja interviewed me and I’m now getting around to answering her questions and posting them.

1. What’s your favorite game? Hmm… Console Video Game – Star Wars Legos, Computer Video Game – World of Warcraft, Card game – Shanghai (I’m not sure what other names it goes by), Board game – Clue

2. If you could meet any famous dead person, who would it be, and why? Hmmm…. anyone who is famous and dead… There are so many different people I could put here for many different reasons. I’m not quite sure who I want to put… so this could end up being the hardest question of the interview. I’m almost tempted to ask how you define famous lol… Nationally known, world known, locally famous? I’m having that hard of an idea coming up with someone right now….
Helen Keller I suppose. To know how she found the strength every day to deal with her disabilities, to know how she dealt with her life, and just to get to know her. She was one of the people who really interested me as a child.

3. What’s your favorite book? Favorite book of all time… hmmm… I think Little Women may have to go here…. My poor copy of it is so damaged.. It got wet one winter when I was reading it, so the neighbor who took care of us at the time put it in the oven for a bit to help it dry out, which cracked the binding lol… I think it’s 3 different pieces now.

4. If you were a cat, would you be a lap cat or more on your own? Would you like to go outside? Dry or wet food? Would you try catnip? A lap cat because I love cuddles… and most definitely an inside kitty, though I may occasionally venture out side. As far as food, whatever tastes good to me lol… probably wet. I might be willing to try catnip, I suppose it would depend on how it was presented to me (sprayed on a toy, the plant itself, inside of a toy, etc.)….

5. Do you believe in aliens? I believe in the supernatural… whether that includes aliens or not I’m not really sure.

If you’d like me to interview you… leave me a comment and ask! 😀

At least for the moment. I’m feeling better… but I’m not sure how long to expect that to last since I’m supposed to be getting my period any time. We’ll see if it happens or not though… endo makes cycles all sorts of crazy. At least since I was on birth control for as long as I was my cycles are still mostly normal. They were 27 days for a few months, last month it was up to 28 days, and this month I’m on 29 days so far. My PMS has been a real pain too. Both last month and this month I’ve really bad PMS…. and it’s started right about ovulation. Luckily it hasn’t included much pain. Both months I’ve cried extremely easily over anything, had sore breasts and tender nipples, exhaustion and just all around not feeling well. This month I was lucky enough to get nausea and very bad headaches added to the mix. Before you say “You’re pregnant”… I wasn’t last month, though the added nausea does have me wondering a bit. And I don’t like hearing that, I can’t tell you how much I’ve heard that over the years, and it’s never been true yet. The worst though, is when coworkers say it, and you know there is no way that’s what’s going on. I … well I won’t get started on my thoughts and feelings on that right now. A couple nights ago I was sure my period had started or was about to because I had a lot of pain… but so far I’ve had… a *possible* drop or two of spotting, and I’m not sure if I was just imagining that, and nothing else. And since all that pain (EVERYTHING flared: endo, IC, fibro and lupus) I’ve only had a couple brief instances of pain and some achiness… the achiness happens sometimes from nothing, and it was in my lower legs, so I’m not calling that PMS or period stuff. I just hope I get something to happen soon… this is really getting old. So far I’ve not been sick to my stomach, but that doesn’t mean that this has been any more fun… my anti nausea pills (I have two different kinds) haven’t even helped much… and it’s getting frustrating when I’m standing in the shower and suddenly feel ready to get sick, or am laying in bed with E almost asleep and have to get back up because all of a sudden I’m sick and I know I’ll feel worse if I keep laying there, etc.
So that’s where I’ve been and what I’ve been up to. I’ve also been having some lupus issues with my hands…. I was barely using my computer except as something to stare at for awhile because the keyboard got so hard to use…
Hopefully I’m back now and can actually do some of the informative posts I have rattling around in my head….

I was talking to my friend Shadow tonight. She got one of her cats about the same time I got M. They may have been litter mates, we aren’t quite sure since the coworker who gave them to us had two litters born within days of each other, and one of the mom’s managed to steal all but two of the kittens from the other mom. M was one of the two left with his mom. So I sent her a text saying “You know M and (her cat’s name) are going to be 4 this year right?” and she texted me back with “Good god! We’re getting old.” … It made me crack up!

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