poppetkazutaka

Oh, I've been on Topiramate for about...two years now? So I'm sure it isn't that. I haven't had an increase in it for about six months. The tingling sensations just started recently, and the migraines -which is why I'm on the Topiramate- have been getting worse.

I don't think I could work on that amount of Gabapentin! I barely functioned today as it was. @_@ I wonder if they have to slowly step it up...

I was doing okay...it seems I don't come here as often when I'm manageable. I've been obsesed with finishing my book, too, so I haven't been online much because of that. But I've had some headaches and such, and I guess I've gravitated back here because I'm confused again. I'm on Topiramate 150 x 2 a day, and now Gabapentin 300 x 2 a day, and I don't understand how I can still have migraines and numbness in my face, fingers, and toes. It would appear to me that there's something else going on. I'm also waking up at the exact same time every morning. (4:10-4:14am) wide awake. I'm not panicking, I'm just ready to go as if something woke me straight out of a REM cycle. It's not normal. I eat constantly and I'm hard pressed to keep weight on. I'm tired, but I go go go constantly. The first couple of nights I was on the Gabapentin were a dream because I slept and felt great the next day. But now I'm back to how I was, plus feeling drunk. There's no relief.

So I did some research on the Fatty Liver. And I found a small thread that oral contraceptives might cause this. I got them filled the other day and took the black box packaging out to read it. Two things jumped out at me. > Gallbladder Disease > Liver Tumors I thought...what the heck? And then before those it listed... > Blood Clots in Legs Which I've been having pain in my legs to the point I can't walk lately. So I started searching for 'TriNessa Gallbladder'. And began finding posts from people saying: "Six months after I started this I had to have my gallbladder removed and I now have a fatty liver without any known cause. Don't take this medicine." "I had terrible gallbladder issues about six months into this medicine. I now have a fatty liver and thankfully once I stopped taking this I don't." I was floored. I stopped immediately. Because June was when I began the TriNessa. December was when I had the Gallbladder removed! SIX MONTHS. It was a perfect timeline! My gastro doctor said she couldn't comment on what to do to replace it since I need something for the wonky periods and pain and clots, but recommended a good female doctor to go to. She said it was a good thing I found that though. Unfortunately I can't get in to see the female doctor for another month! Another thing I came across later was a possible connection between Hashimoto's and TriNessa, but it was weak. So there's always a chance that my autoimmunity is linked to this pill as well. I messaged the FDA but I'm not sure they'll be able to do anything. I just...I'm so much in shock and anger. I'm not going back to Prime Care Medicine group. They've lied to me, made things up, and now poisoned me. If I could find that in less than fifteen minutes in a web search, surely they should have known to take me off the birth control when they saw something going on as sick as I am. I've lost twenty pounds. My hair is falling out. I'm photosensitive. I can't eat. I look sick. I'm exhausted. I'm hormonal to the point of suicide sometimes. What the **** were they thinking? I really wish I knew who to sue. XD

My usual response is "I wouldn't know" with a laugh. That usually throws most people off, if they're even paying attention. Because I love to talk about my health issues, and it usually starts with, "There's a reason for the hat and jacket". I don't want pity, I hate pity. I want people to understand. Maybe one in five or ten might, but it's still one. I know I'm sick. People can see I am. I look frail and exhausted. I'm thin, I wear baggy clothing and a floppy hat. I have layers on in 90 degree weather. Obviously there are signs that aren't always physical, if one isn't too selfish to look. I like to point these things out to people. Because I'm a writer. Because I'm a detailed viewer on life, I like to make people not take others at face value. Of course, most people are going to make sweeping generalizations about me. I look like a fifteen year old. When I come flying into Wal-Mart with my quick strides on a good day, floppy hat tied at my neck with a ribbon I added myself, and jacket waving about my body like a cape, they're going to stare and wonder how I'm not sweltering. They're going to question the two or three sizes too big clothing. The rash on my face and the sunken look of my mismatched eyes. How one's not quite as open as the other and is it just a bit longer and lower, too? If they really look, they'll see a limp. They'll see my hair is falling out and turning silver and thin. It's like silk, soft and wispy as spider thread. Recovering cancer patient, maybe? If they could see the way my bones protrude at my elbows or how thin my arms are then that would really win them over. I'm purple and veined and my skin is stretched. But I'm smiling. So perhaps all those notions of illness aren't correct. Maybe I'm not sick. It's an illusion. I'm just weird. I have bad fashion and sense of dress. I get cold easily and I -is that a doll in my purse?- am just one of those strange people you were told not to hang around as a child. So when I'm checking out and am asked how I am, I'll say "I'm here". "Well, at least you've got your health!" "[laugh] I wouldn't know! Hadn't had that for years!" Which is usually followed by uncomfortable silence or a head tilt. Sometimes a smile or a pitiful look. "It ***** when you're dying." \ "Kinda kills it when you can't get out in the sun." \ "But I guess it could get worse. 'least I can still walk!"

I got my liver panel back, but it was from the doctor I hate (Dr Bennett) because she tends to lie and cover up results. They're forwarding that to Dr Curtiss the gastro, so maybe he won't lie to me, if that's what she did. Dr Bennett's nurse said, "They're normal." "So, if you could, please explain to me how a person who never drinks and barely eats gets Fatty Liver?" "Well, when you're overweight, these things happen, it's normal and if you watch your diet and lose some weight it can resolve on it's own." Typical textbook answer. Call me fat. You just looked at the chart, saw 5 foot ZERO and 165 lbs. Assumed I was a big ol girl, because you've never seen me, and don't know it's mostly muscle and bone. You have no idea I could kick your butt up and down the **** doctor's office. "Huh. Well, hun, I'm not overweight. I barely eat as it is. I just lost 10 lbs in a week and lose at least a 1lb a day, so the FAT thing won't be a problem very much longer. You go ahead and forward those results over to Dr Curtiss. Whatever. I'm done." Most people who look at me laugh when I tell them what they said. They also give me a look when I say my weight, because they don't believe it. I'm small, and I'm stout because I look strong, not flabby. I walk everyday and I'm fast. I'm an energetic (when I can be and make myself be) person who pushes themselves to the brink of exhaustion at work. I just...I'm done with PrimeCare Medicine in Bowling Green. Call me a fat mimic diabetic who's slowly getting sicker and that there's nothing they can do? Good God. And I thought the guy in Arkansas who walked out on me was bad. At least he could admit defeat openly!

The reason I think it is, is because I have systemic scarring. They found scarring inside my sinuses, over my gallbladder, which they explained as autoimmune. Everytime I ate something my body needed bile to digest, I would attack my gallbladder. The sinuses is from chronic infections they finally got cleared out. Now I'm scarring over my liver. For no reason other than just because my body wants to. They really need to supress my immune system but they like this 'wait and see' attitude too much.

I can't stop my birth control pills. They'll have to take my uterus out. Because I'll be ****** if I go back to the pain I was in before. Besides. It would have to be something that happened in the last six months and I've been on these for over three years.

See, that's the funny thing. I don't eat that much. My friends remark about how I eat like a bird. Even when I started to eat more (because I began to gain weight last year when I went into starvation mode) I still get comments that I don't eat that much. Even now I eat very little compared to other people. For breakfast I might eat the most of my calories. I'll be honest. I'm the worst at stopping to get a bacon egg and cheese biscuit or two a little too often. But that's because a lot of other things I just...couldn't eat anymore. I can't eat sugar. Pure sugar makes me sick. I can't eat lots of chocolate. I can only manage maybe one donut. Breakfast cereal gives me a little bit of heartburn because of the milk. Especially now, even though it's skim. I'm milk fat intolerant, so I stay from milk a lot. But now I eat maybe a banana. Maybe some yogurt if I don't feel like chewing. Morning is the worst for my water diaherra symptoms. It's like all the food from yesterday coming out. Lunch used to be a snack of something if I ate a good breakfast. Maybe some nibbles of chips. If I didn't eat breakfast or if I snacked at breakfast, I had something like a salad if I would walk by Wal-Mart. A salad and pizza if I went to the mall or maybe Chinese food (I love Borboun chicken and rice). Because I had gotten to the mentality that I was sick and I deserved to enjoy each day, so I wanted to eat what I wanted. Sometimes I just had a wheat bread sandwich with ham and cheese or peanut butter or something fun. I put random things on it like carrots or something. Now I eat some apples or some carrots or maybe a peanut butter sandwich on wheat. Sometimes yogurt if I have it or have the energy to go to Wal-Mart. Dinner is whatever mom's got at the house or what I can get myself to eat. By this time of day I'm not too hungry. I haven't been eating this for a while now. But now I eat what I can. Bits and pieces of it. My mom's understanding and has cut my portions down. Or I eat BRAT things. Toast and Bananas. Or some snack vegetables. Snack apples. Things like that. Sometimes I try to nibble sweets just because I want a little sugar. I would say I went from not eating, to eating, to now not eating again. But over all my diet isn't that bad. Sure I could use more vegetables, but I eat 'fat free' and 'low fat' things. I don't eat red meat. I eat chicken when I do eat meat, but I haven't been able to eat a lot of that before I feel like vomitting. I just don't know what to do. I'm starving, but if I eat, it makes me sick and in pain, like a lump going through me. It's just like the gallbladder all over again.

So yeah. Though I'm not an alcoholic (unless you count the two-three weeks I had one wine cooler an evening a few months ago) and I'm only 150lbs (I just lost about 15 lbs in two weeks) I have a fatty liver. And I saw the line. It was huge. I have a liver panel blood test scheduled for tomorrow and a follow up with the gastro next week. Honestly, I'm really, REALLY leaning into schleroderma. There's aparently one that you can have that shows no derm signs, just systemic ones. My grandmother had schleroderma and colon cancer, and that's what killed her a few years back. I mean, I lost my gallbladder at the end of last year and had that bad row of sinus infections. Now I'm about to lose my liver (maybe) for no real reason? Because it wasn't fatty six months ago when they did the abdominal ultrasound in December. What the heck is happening? I was fine, if not just excessively tired and weak. I could deal with that. Then my heart started having problems in September of 2008. Then once we got all that tested and I was dysautonomic, I thought I could handle it. Then I got sicker and sicker and now I really do think I'm on the road to the end of the line. I'm not afraid, just really pissed off. I'm not ready to die yet. I want someone to find out what's wrong with me, and I want the doctors to stop jerking me around. I want them to listen to me when I say, "Something is WRONG." I'm autonomic. Autoimmune. I have possible liver failure. I lost my gallbladder. I have pain in my right and left side. My kidneys hurt. I'm dropping sweet urine but I'm not diabetic, my body just "acts that way" as the doctor puts it. I'm so confused. I'm shaking and I'm sick and I really think death would be easier but I don't want to give up.

Okay, I've tried the diabetic diet two days now...and I'm still swinging like crazy and dumping in 15 minutes, even just a salad. With full leaves. What should I tell the doctor tomorrow?

OMG! Thank you so much for the links! The Reactive Hypoglycemia and the Dumping Syndrome sound very close to me! I've been eating things today like yogurt and bananas and salads and such, but I just ate some popcorn and I was fine for a little while but about two hours after I started feeling halo-y and sick again. Like I needed to knock off a fruit stand! Then I read that and it made sense. I've always had hypoglycemic episodes, and I even told him that, and he didn't say anything about it! I guess it's gotten so bad now that I have to be more strick about my food. It's getting to where I can't eat but fruit, vegetable, some meat, and pureed things like yogurt. Then of course, juice, tea, and water. I can't even think about diet drinks. They dry me out. IV here I come. >.< It would be so much easier...

So I've been having hunger problems and tummy problems, to the point that I'm so hungry I could eat people, and yet immediately after I eat, no matter what it is, I'm in the bathroom and it's coming out the other end. It's gotten to the point that it's almost 15 minutes for solids and 5 for liquids. We did a fasting glucose test last week, and I was fine then, I was still at "it takes an hour to get sick". So yesterday, I told him I'd gotten to a point where I couldn't eat and was basically soft and liquid, and he said it sounded like a virus, and I said I hoped so, too. He gave me anti-poo medicine, told me to 24-liquid diet, then 24-BRAT (which I decided to back out on since my sugar was dropping due to the three day fast), and here's the kicker. "You're tests...well...you're not diabetic but...here's a joke I tell that no one gets. Usually they say it's not the fall that kills you, it's hitting the ground? With blood sugar, it's the fall. See, you started at 93, took the drink and went to 140, then fell all the way to 61 by the end. So...you're not diabetic, you're just acting that way." ... "So I think you need to be on a diabetic diet. That should help with the symptoms." I was so hungry and sick at the time, re: almost passing out and shaking, that I told him if it continued until Monday I would call back. He said to "please, do" since it shouldn't be. My question is this, since my parents both think (and I, too, now that I have time to digest it) it's BS... ...how can a body "FAKE" diabetes? And what should I ask about next? I have pain in my upper left back, upper left side, front middle abdomen, and it's usually there after I eat. I have oily, floaty, light "stools". (I say that in quotes since it's sludge and water, usually, sometimes with food in it.) I even sometimes have pain on the right side front, under the rib cage. I feel heavy and swollen there. It's almost like the time I had gallbladder issues, only...more to the left. It's that bad. So I'm thinking my immune system is after the pancrease and they need to do something, but...I don't know how to tell them without sounding insane.

Yesterday I got myself to eat a homemade hamburger and a bottle of gatorade and it stayed in. After that I had cake...and it stayed in, too. I gained two pounds back, and I feel better! So maybe you're onto something here...!

Well, that happened to me even before POTS! But I understand how it feels. Sometimes you wonder if you're ever going to be well enough to be independant. You see people around you well and complaining about things like their cellphone or computer and you want to thwap them because, 'you think you have problems?' XD I don't think there's any one way to cope with being left behind. Just trying to keep up works for some. Staying back with the other slow runners works for others. Resting on a bench until your able to zoom ahead of everyone just to scream, "HA! I kicked all your butts!" is sometimes what a few do. It also depends on how much energy you have, how much you're willing to expend, and how much you're willing to let what has you, get you down. How much are your friends taking from you, and how much are the people around you, your friends? Sometimes they're just people you grew up with, and they're not the kind of people who would really be there for you if you really needed them. They're aquaintances, not friends. This part of your life you need to find the ones who are going to want to go through the messy stuff. The painful stuff. The ugly stuff. They're the ones who are not going to worry about being at the end with you, holding your sweaty hand. They don't care about keeping up. Or winning, for that matter. They just want to be with you no matter what. So it really depends on both ends of the spectrum. Not so much on your ability to keep up, but their ability as well to slow down and wait for you. [hugs] Good luck to you either way! :3

I've been thinking about this and since my POTS has been acting up (I've actually felt like passing out at work for the first time in months and had to hide out in the server room with my feet up over my head) I'm at the lowest weight I've been in a while. 154lbs, where I was at 160lbs. I haven't been able to get myself to eat, because I'm not hungry, too busy, and not craving, and when I do eat, it comes out too fast. So I think you may be onto something! Lower weight does make a person more easily able to faint though, so I dunno... [shrugs]

I'm now photosensitive, especially on my cheeks and chin. I blame it on pre-Lupus, since I tested positive for the inflammatory markers and other things, though my Rhum won't give me a diagnosis. It's very difficult to be in a hat and jacket when in 90+ weather, but you learn to deal and acclimate yourself slowly.

I think that's where I'm getting tripped up. No doctor here will give me an 'official' diagnosis. Only borderline this or that. Because they don't believe I'm sick enough despite the tests and readings and paperwork they've got.

At first I was a supporter of working but lately I just don't know if I can do it anymore. Of course, that might be because I'm slowly poisoning myself to death with all the cast off from my autoimmunity that the doctor doesn't want to treat and the kidney issues but...who knows considering she won't help? If I could stay at home I could get my other books written, and get the one I have written published. Then that could be my work! I wouldn't need to be on my feet for writing. :3

I'm very curious about disability. What is the process? How do you go about getting on it? How does it work? How much does it pay? How does it work if you have short\long term insurance from your employer? Do you also have to apply for Medicare? It's really getting to the point that I just don't know if I can keep myself working. I feel like utter crap all the time and no one wants to help me. But how sick do I have to be before anyone will let me do that? Do I have to be half dead before they help? Do I need to be crippled? What doctors do I need to see? My Rhum won't help, my GP won't help. Who do I need to see?

I agree with the active life before POTS. I would walk everywhere, bike when I got home on the recumbant bike, and walk in the woods behind my house. I loved to get out and about! It was great! Then the car accident happened and something changed. I just wanted to lay around all the time. I hurt and I felt sick. I would exercise and I never hit that peak of energy that made me feel great. I was dragging and when I asked why my doctor said, "Sorry, I can't help you there" and walked out on me. So I learned to live with it. Until my heart started to go, and my head, and then I got all the infections, and now here I am, an autonomic, autouimmune wreck who's trying to find a way to get someone to help her get disability because she's getting to a point where she doesn't think work is working out anymore. [hugs] It's tough when life's taken from you and you're still young. I was twenty-two when I had the car accident, I'm twenty-eight now. But what doesn't kill you makes you stronger and you've found a good place with lots of strong willed people who'll be good friends. :3

I keep a journal over on Livejournal. It helps when I need to go look something up! :3 And I need to get a psych doctor. Psychologists aren't great. They just won't shut up long enough for you to talk and then you realize you're not crazy, they are, and they just want someone to listen to them.

I often have a dolly with me, so I have a variation on it when I'm not 'alone' and I'm in the car and by myself. 'Mommy's okay, mommy's fine. She's just a little sick right now and needs some water. She'll be fine. She needs to sit down and take a break. It's okay. Just sit right here in mommy's lap and she'll feel much better. Much better. There now. Oh, dear...' I think it helps having one of them with me, because I wouldn't DARE pass out with the possibility that they could go missing! So I have more will power when I have something I need to protect. Like a dog. Or a 'baby'. And they're my 'babies' considering I can't have real children. (They're easier than real children, too. They don't need to eat and they don't argue. XD) Often I also talk to my guardian angels or God. I'll look to my left when I feel them urge me to stop or something and be like, "I'm fine. Really. I'm fine. I can keep going. I'm tough." I can only imagine they're smacking their foreheads because it's not tough. It's stubborn. Edited to add: LOL So do I! I also punch out in my sleep sometimes. I laugh and PUNCH. "HAHA! [PUNCH] That's so funny, Joshua..." He's a plush on my bed. I doubt he finds it funny when I smacked the heck out of him and into the floor.

Well, I've been pretty sure it's autoimmune for years but only had blood test proof for about six months. Though they still say it's too soon to do anything and not enough to treat. XD

They didn't do anything. Just told me it might be back pain and to follow up with my Rhumy doctor. Yeah, I know. Aren't GPs wonderful? Something got me thinking, too. The other day I had a night sweat, but I was freezing cold. But that's the first time I've sweated in a long time. When I'm in the heat, wearing my hat and long sleeved jacket to avoid the sun? I don't sweat. I haven't been sweating. For all of the Spring and Summer. I've been freezing cold. Not sweating. With high blood pressure, and a racing heart. Something doesn't add up there, right? XD