poppetkazutaka

I was doing that when I got my sinuses infected and inflammed shut. Can he breathe through his nose okay? Anti-inflammitories help at all?

I was getting used to everything and trying not to talk about it. I was not researching anymore. I was focusing on my book and I was ignoring my health to the extent that I could. I would take care of myself, obviously, and go to the doctor when I got sick, but past that I wasn't chasing after a cure I knew there wouldn't be. I've been fine and I've been going out and being normal. It's been warming up. I had to buy a hat because after five minutes of sun exposure I got burned on my scalp and face. That's never happened before. I do burn easily, usually in fifteen to and hour, but from one block to the next is unreal. But now, covered up in a top and hat, I have noticed a new symptom. I thought at first it was because I hadn't been eating but yesterday I made sure to eat. I ate very well because it was a day in which we had catering at work. I was up on my feet for a few hours working, but I didn't feel tired. I went for my lunch walk and the tingles began. So I thought it was because it was a cold day and it was cold outside. But they got worse everytime I was up and walking. They're still here today. I have them in my fingers, feet, and face\head(halo). They're extending inward as I get more activity and slow as I stay resting. It doesn't matter what I eat. It doesn't matter what I do. It doesn't matter what stress level I'm at. If I take anti inflamitories they seem to help, but only a little. My sig shows my current meds and I was at the doctor today and my bp was 117/72 it was not elevated. What the **** is this? MS? Part of the autoimmune that I'm just going to (AGAIN) have to get used to?

Not having a gallbladder will cause some constipation. Of course, since I don't have one, and I know I can't digest fat or sugar, I just eat that and it causes me to go!

Sounds like my dad when he told me, "I'm not saying you're making it up, I'm saying your reading this information on the internet and then you're feeling the symptoms as if you really had them." "That would be BECAUSE I really have them and THEN I look them up."

Have you had your thyroid and gallbladder checked? I have issues with my bowels as well. I find lots of water, salt water, and burdock root when all else false helps. :3

I've been suffering under this for six years, and many of the others here have been suffering for longer. It's a long term thing, and if there's one thing I've learned it's that getting upset about it isn't going to help. You have to just...keep trying. Be persistent, but not crazy. Laugh about it. Smile about it. Joke about it. Find something you enjoy and focus on that. Find religion if you don't already have it, because God can help a lot. He gives perspective of suffering. It's important then. Stressing makes it worse. So just let it go. It isn't going to cure itself and it isn't going to get better by worrying about it. Do some research, but not a lot. Never think you've found the answer, because that's what doctors are for. Remember that doctors are practicing medicine, so they too are failable. Remember that this life is temporary, so each day counts as its own and you shouldn't worry about the next. Just live and learn and breathe and laugh. :3

I take labetalol and it blocks adrenalin, so when things happen I'm just "...". It keeps me REALLY mellow though, so I don't know how low you would want to start out. I have anxiety problems and manic depression runs in my family with more manic than depression. I would go days with my heart racing and me bouncing around wanting to do things, talking rapidly, and not being able to focus. I was frustrated and irritable, and biting at people who annoyed me. So the Topiramate and the Labetalol helps me. Around my period I still get a little edgy though, and the BC helps with that. So some medicine would help. I do still -when I over work myself- get adrenalin surges, but I can feel them coming. My head and chest hurt and my mouth gets a funny taste. That acid taste you get when something frightens you? That's what it tastes like. Then I have to lie down, put my knees up to my chest, clear my head and breathe. Don't think about anything or you will freak out on it. Just think of nothing. And you'll slur if you talk because you're having an adrenalin surge (not a panic attack, because it's not emotional, it's physical). Does that help?

I find that bp cuffs always hurt and leave a mark. It's just something I have to get used to, especially when you're hooked up for monitoring and it takes for every three minutes. [shrugs] There's a lot of pain you'll get used to after six years. XD

I can see music and I attribute personalities to numbers. :3 I don't like 5 much. I like even numbers more than odd numbers. They're nicer, and that's usually why I round when I pay bills. When I listen to music, I see colors and I sometimes get so into it I have to be careful because I can really lose myself! XD It's why I like all kinds of music except for a lot of hard metal music, because the colors aren't right. Some of it is okay... But yeah. I'm slightly that way myself. I think it's higher brain function. I can also look at something and I feel how it feels on my palm. I see feeling, because I know how it feels so I translate sight as touch. It's just that the senses are so closely wired that they overlap. Sight and hearing, sight and feeling...etc... EDIT: I forgot about the map thing. I do that, too. XD

I've noticed that for a few seconds when I turn off the light I go 'blind' and I can't register. I panic, my body freaks out and I tend to fall down even if I 'm standing still. So I have to grab something first or be sitting if I'm going to turn out a light. I don't know why this is, but it has been going on since I started the labetalol maybe?

Well, I have sensitive teeth because my gums are receeding so I have to use sensitive toothpaste. XD But what I don't understand are the commercial for growing eyelashes. Thicker, fuller, more beautiful eyelashes. W. T. F. Now I could understand this on a medical perspective if you were injured or had hair problems but seriously the way they present it, is like if you're tired of using mascara. If that's all you have to worry about? Someone hit you with a chair.

The only other thing she had to add was that I might form Hashimoto's Thyroiditis since my peroxidiase is at 166, but that it wasn't preventative. She said treatment was symptomatic...but gave me no medicine for any of my symptoms. There's only one other rhum here and he's in the same building. So I think I'm just going to have to wait. Get my book edited and published. Once that's done, I don't care what happens to me. My dad yelled at me last night and said it's my own fault I'm sick. That it's because I look things up and I'm psychosomatic. Thanks Dad.

"We see some inflammation, it's definately autoimmune, but there's nothing we can do at this point. We need to wait until it shows more symptoms and has done a little more damage before we can act and right now treatment is symptomatic." Translation: "We're going to wait until you've lost another organ or until you're admited to the hospital until we do something." I'm done. She wouldn't talk about Lupus or anything else. She said that it would develop into something but she couldn't say what, and that 'oh, the positive reading for Lupus wasn't Lupus, it was just for inflammation'. Funny, the National Lupus Foundation says different when corolated with the other results and the symptoms I have? She changed the subject on me and then when I asked again suggested I get a biopsy of my sinus tissue in the future. I'm done. Until I lose something else...I'm done.

I'm a little worried though, and plan to ask the doctor but... Since I work in a call center, if I seek treatment and have to be put on long term immunosuppressants...does that mean I have to quit my job? Because this place is a germ factory!

I know, I've been reading and I'm trying not to think about it. I've been telling them for years it was something autoimmune and for the past six months I've been saying "my body is eating itself" and "I think I'm running out of time". But everyone thought I was nuts. I've always -ever since I was a child- said I was going to die early. Lately I've said I've got until I'm 32. I hope I'm wrong but it's a plan at least! I see the doctor next Wednesday @ 10:30

I know when I was really bad sick with the last bout of sinus infection they gave me some prednisone and it made me feel better. Best week of the past six years that I could remember! I'm already not planning on children because of the PCOS, and some things I read on the Lupus page regarding the high likelyhood of miscarrage with Lupus patients. I had already written off being able to get pregnant because I have a bum ovary, so the possibility that I can't hold the kid kinda makes it worse. Good thing I'm not interested in getting a guy involved in all this mess either! :3 I'm just hoping that all the kidney problems I've been having doesn't mean it's moved there. From what I've been reading it's a bad sign? Like...it means that the Lupus is attacking the kidneys and that can be life threatening?

I had never really been tested before, because the general doctor I had that said she was testing things and may have been falsefying my blood test results. I was diagnosed as 'borderline autonomic dysfunction' by Dr Zia, and self-diagnosed as possible POTS due to all the symptoms. I started having problems after a car accident, and it always got worse after I had bouts of chronic infection, which is normal for me when I'm sick. I was always sickly, ever since I was a child, and it's hard for me to get rid of things because I'm stubborn for one and go to the doctor only when I can't stand it anymore, and for two, the normal antibiotics just don't clear things. So for six years I've had worsening symptoms, the worst of which started after a viral infection in June-July 09, that caused a sinus infection that wouldn't clear. Then my gallbladder failed, my sinuses swelled shut, and after seven months and two surgeries I seemed to be okay with the exception of an extreme flare of this 'whatever-possible-Lupus-thing' I'm being affected by that's causing me to be in twice as much pain and the feeling of swelling without the symptoms, tingling\numbness in fingers and toes, flushing in the cheeks\nose, loss of appetite and thirst, sore throat, and exhaustion. Whew... XD

So I called and the reason they were having problems? They have Nielsen spelled Neilson. But I'm used to having flubs with my last name, so I was too nervous to care. She read them off quickly and here they are... Reflex something...negative... Rhumatoid Factor...negative... Lupus should be 180, is 203...positive... C-Reactive Proteins...very high here...she said something about a "one point one something" but she was going very fast and from what I can see 1.1 isn't high so I don't think that was what she was saying? Sed Rate is marked as high as well. She's going to go over all this with you...do you want to move your appointment up? Of course I said yes and mentioned my fingers and toes going tingly numb and the pain getting worse. I'm so freaking excited. Most people would be sad but I AM SHOWING stuff. OMG. I am so happy I danced once I was off the phone and was going, "They found stuff, they found stuff!" I even emailed my friend at work and was all, "YES!!!!!" I'm not sure what it all means. Possibly that something is breaking down to set off a reaction to cause inflammation and going into my blood stream? My appointment is next Wednesday at 10:30. I just hope I'm getting closer to a true diagnosis. This road has been so long and confusing.

So...since the pain has gotten worse and the problems are increasing, I've been dealing with it, but now numbness and tingling are added to the mix and in my big toe and middle fingertip on the left side, I have tingling to the point that I can't feel but I can still move them. What is that? Is this a POTS thing or something to be more concerned about? Last night the pain got so bad. I notice when I have attacks of pain it moves in from the tips of fingers and toes and head inward. It got to my neck, elbows, and knees, and radiated from my spine and then I couldn't take it any more. I felt like I was spliting out of my body or was too pressurized. So I took a hydrocodone and that helped with the pain but not the pressure. My veins were bright blue and pulsing at the skin. It was really weird. Is this more of a nerve thing or what? Also, still waiting on the Dr Pansuria blood tests. I called Thursday because the insurance co had paid for them and I left a message wanting an update and no one has called me back to let me know when they'll be done. It's been almost two weeks for the '1-2 day' blood tests. I'm not liking this doctor and she's had ample time to get them read, and most of them were completed two Thursdays ago.

He thought it was because I have a suddenly perforated septum, constant nosebleeds, pain all over, and a body making masses of scar tissue over my organs I guess that could be considered nodules of some sort? I haven't seen the tissue, they just tell me its 'scar tissue'. And I had had a sinus infection for over six months that wouldn't resolve. My kidneys had begun to get affected as well. But I guess that's not it.

When I tried Miralax, back before the constipation turned into the other direction, I had to keep increasing caps. I was up to two and a half caps before I said "done" and I moved onto the blue box stuff, with the yellow gel cap? I can't ever remember the name...but that stuff was horrible. I had to take two of the highest dose to get it to work and THAT would make me feel like my whole body was being juiced just so I could go to the bathroom! I said NO MORE and looked for a natural laxitive. BURDOCK ROOT. That is the best stuff. If I find there's a week gone by and I haven't gone (which hasn't been for a while since I have had my last surgery) I drink two cups of super hot tea, gulp it down real fast. The trick with this is it isn't a laxitive, it makes your intestines secrete goo to loosen the stool, not soften it. So it helps it come out, not turn it into water. So it doesn't take your water out to make you dehydrated. It also comes in pill form for a daily use. It was so gentle...

Last time I had an ANA was about three years ago and it was false. My gen doctor at the time, the woman idiot who said a lot of my heart and head problems were stress caused by my mom's attempt at suicide though I had never told her about it (she treats my mom, too and had no right to cross our histories like that) said I was just going to have to suck it up and deal with the pain. EDIT: Of course, now that I think about it, I got some blood tests back in my history from her and found one from waaay back when I was first seeing her and it showed I had a borderline low red cell count and she never told me about that. So she could have been lying about that, too.

Yeah, but think about it, if we're both so sure I have it...then I'm definately presenting symptoms of it. So if I don't have it, I'm still suffering from something similar to it. I just don't know anymore if it's worth it.

Apparently my ENT works on Sundays, because while I was torturing myself with sewing then, he calls to deliver the news of negativity. He seemed a little disappointed, as did I, because we were so sure that it was Wergener's. I tried to have a good cry after the phone call, only to find I can't produce but two tears. My nose, however, poured out rivers. I got a good laugh out of the irony of that, and decided to go with the six page packet of junk that the rhumatologist made me fill out to see her on Tuesday. Then that was it. Because obviously after six years and that many doctors and tests, if they haven't found anything with a name yet, and I'm slowly turning into a ball of scarring tissue...really...what are they going to find? I give her a visit. That's it. I can't keep playing the hope roller coaster anymore. They aren't going to find anything.

If you follow the wiki-spiral... Vasculitis can cause neurological symptoms such as mononeuritis multiplex, headache (I suffer from debilitating migraines without medicine), stroke, tinnitus, reduced visual acuity, acute visual loss. Mononeuritis multiplex is peripheral neuropathy, which is the term for damage to nerves of the peripheral nervous system, and may be caused either by diseases of the nerve or from the side-effects of systemic illness. http://en.wikipedia.org/wiki/Mononeuritis_...ns_and_symptoms There is also pain in the muscles (myalgia), cramps, etc., and there may also be autonomic dysfunction. So technically, the diagnosis of 'bordeline autonomic dysfunction' would have been a sideline to the real problem, if I have some form of vasculitis and that's what caused it. I often have days where I would say, "I feel like my brain is on fire" and I wouldn't be suprised if I have inflammation in the brain, and the blood vessels there have caused scar tissue to form. Because of the difficulty of getting that to show up on scans they wouldn't have seen it. Basically, it's a chicken and the egg thing. If I test positive for vasculitis, I got the POTS from that.