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Everything posted by hilbiligrl

  1. Number 1 goal: is to continue to keep looking at my disease from a positive perspective and a happy one. To be even more thankful and grateful, despite what we fight. This attitude alone has helped tremendous this past year as a goal. Im not perfect, so i have more work to do. Also: I plan to start a hobby, woodworking. I have wanted to do this since i was a kid and now is the time to start. I plan to try to wean off meds after 10 years of suffering. I plan to continue to take control of the things i have control over, even if it's not my body. I can control my thoughts, outlook, attitude
  2. i honestly feel much worse when exerting myself.... i feel as if I am going to fall over dead. I still can't seem to add constant excercise.... even the afterwards is much worse too. But something I plan on to continue to work with on a small scale... hoping i can build it up over this year.
  3. My doctor has never forbid me to drive, however..... there are many days that i know i cannot do it, nor can i drive safely, so i will stay home. Many times I can make it 3 miles and have to pull over and lay down in the seat..... i have no energy or strength in the limbs, especially arms and neck. I can't even hold my arms up to drive, and I cannot even hold my neck up either. I always feel like I'm "stuck" in some type of "pre faint mode" but for long periods of time. This disease has affected my driving for about 5-6 years now. It's gotten a bit better though. I very much understand.
  4. Yea.... i noticed most stuff I find says it's a 'normal process'.... but even so... would this not be a very important gland? And just theorizing, if it becomes calcified, would it not cause lots of dysfunctions in the body and organ systems? Also, i ran across some research (i'll have to look back at it) about a study on MS patients, that all of them (not sure how many they studied, but hundreds of cases).... all of the MS patients (as in 100% of them) in that study had calcification of the pineal gland, which i also found interesting. I read that the pineal gland is the first organ/gland
  5. Thanks sweetie.... I will definitely post anything we can find out. I thought it was really interesting though. ~tennille
  6. Actually, it's not even been discussed with me. I went and got MRIs yesterday dating back to 2006..... and one particular one, while i was under the care of a doctor whom i fired.... she never mentioned it, or discussed it. I have actually sent a message to my doc to pick his brain a bit and see what he might could tell me about that. From what im reading and researching, there is a disease called Pineal Dysfunction.... sounds soooooo much like DYS & POTS and everything we all seem to have in common. Hmmmm....... im def interested in what my doc might have to say.....
  7. I was just wandering if anyone has noticed on any MRIs over the years, if any of your records or images state or if the doc pointed out any calcification of the pineal gland? thanks tennille
  8. I actually do not take anything for the migraines. I have had them since 7th grade, they start with my vision 'being taken away' by at least 75%. (always frightening, but over the years i have managed to let that fear go, which lessens the whole migraine).... somehow my migraines over the past few years have evolved into what i call 'silent migraines'.... as in, i still have the blindness, but the headache, light sensitivity and vomiting, etc dont' seem to happen. I think in the past 5 years, i have had perhaps 2-3 full blown migraines and would go to the ER and ask for a shot of imitrex (w
  9. Hello all.... it had been almost a year since I have been on here. I hope some of the ones that know me are still here too as I've had a few to email but I haven't done well on responding to anyone for a long time. I am treated for all thee above in the heading.... also including blinding migraines, gluten intolerance. (just giving new ones an overall of what im being treated for I am on: Klonopin 0.5 mg twice daily still..... we tried to wean off, but found it was detrimental for POTS & DYS and severe anxiety that i didn't realize I had. Tramadol 200 mg daily for energy. Also, the
  10. katybug~ thank you yea.. i had read it many times before... but i still don't understand how it's making me feel 'stronger in the limbs' and that i feel energy (even if it may be mock energy). And it actually suppresses many many symptoms...... but not in a low dose I knew about the drug when it came out and when given pain meds, this is the one i try first since it's non-narcotic and not a controlled substance. I knew this drug had amazing qualities in the psychiatric sense, as in, it's excellent for mood enhancement, in addition to all it offers that i don't understand. I wander if t
  11. Kim~ hi! actually, nothing makes me sleep or knocks me out.... and what is odd, is that i quit taking the phenergan a few mths ago... only will i take it if the nausea is so bad and i need to be somewhere desperate... .otherwise, i found myself shaking (hands, arms, head) more when i took it everyday.... and yes, since it reallly doesnt do much by taking it daily... i just suffer through or take marinol (marijuana pill) which works loads better, but has a couple of side effects that im trying to work with..... thanks so much for your post..... how you tuned into that, knowing phenergan is p
  12. Ok... i've been going on 10 years now. Im 34, this disease has reeked havok in every area of my life. Each year, i have progressed worse, more symptoms, more malfunctions, with increase of being debilitated..... these past 3 years, im still 75-90% bedridden. Im gettin worse, but im coping better.... my doc has been able to find ways to suppress some of the worse suffering, but i still suffer greatly on many many days. Im now only having about 1 decent day a week...... im confined to my bed and house... i push, and make myself do some things daily..... only feeling horrid afterwards, but st
  13. Hi marti Yes, we are pretty sure im a dead ringer for EDS... especially with my latest go around with my TMJ. I have had many mris and such, seen 2 neuros and no one has ever mentioned chiari..... although i am well aware of it. I may see if my doc can pull up some mris and see if they can detect a chiari malformation. But the ME is such an even more right on dead ringer for me. I have every symptom and then some.... very intriguing there. Yea, it was prob your article that you posted.... my doc liked it, and he is quiet interested in it. i need to read up again on chiari..... i have a fr
  14. Glad you posted this. As, this post has helped me to 'think' and summarize the 'evolution' of my disease(s) process. To answer the first set..... i feel i've dealt with what i have all my life.... however each year, getting worse with a few relapses up until my 20s..... Then mono opened the door to a sudden onset of alot of this..... after that, i had relapsed alot, remitted alot.... had long functional times.... then long non functional times...... However i have noticed from mono 10 years ago to today, i have indeed grown much much worse, being at least over 75% bedridden since october 20
  15. I know this thread is comparing similarities..... but thought i would throw out here that i had emailed the link about ME that someone provided on here, to my doc and he is amazed at how 'right on' ALL my symptoms fall underneath..... our next appt is def going to be talking about this in more depth. I think he sees it as we see it here.... that CFS needs to be changed to ME in name..... as it seems to be more 'perfect' in ALL my symptoms plus a more respectable name than chronic fatigue.... cuz chronic fatigue doesn't get it...... he was excited to read it.
  16. Ive had it in my regimen for a good 6-9 mths now i think. I'm not sure what i notice about it.... BUT.... my joints aren't having major issues and I'm really bad about not taking them for a week or so during worse feeling bouts. So, i will say this... for me, i do notice a difference when i don't take it as compared to when i do. Im not sure what difference it is really as im really still trying to fine tune my regimen as we go along and as we figure out more things. I do think, if one does good one it, that is beneficial. I have to take my supplements in sets.... and i do them at least an
  17. Has anyone tried it, used it, good, bad? I remembered it from an old book my mother bought when my children where born, that had hollistic, conventional, bach flower remedies, herbal remedies, etc... i remember reading about chorophyll and how it could build up the blood, and many other things. Just wandering if anyone has tried it, thoughts on it?? thanks
  18. Oh my misstraci ~ reading your post just made me melt in sadness. Im so sorry.... im not even sure what to say other than huge hugs to you and you will def be in my thoughts and prayers.... and so will that hubby. Maybe he needs some leisure time here and there??? but then, i understand there are sooooo many issues within a marriage in dealing with how sick we are. Big hugs to you my dear hang in there
  19. Yes there is always hope. I think my significant other (been together 12 years... i've been sick on and off for 10)...... at first, I would have relapses of periods of no function and many symptoms, then long periods of function..... hubbs would throw out nasty remarks that i was lazy and stayed in bed all the time, etc. He wasn't too bad with it, but it was hurtful. He also made me feel low down and good for nothing due to his remarks at first. As he watched me be admitted to the er several times and once he started going to the docs with me, and once they actually (after 9 years) diagnose
  20. my doc wanted me to try gaba about a year ago, but for some reason, i didn't.... not sure why because i tend to have great results with anything that helps with gaba i.e. klonopin.... lunesta, etc I also bought niacin (the flush free) but i only added it to my regimen about a year ago for only a week and then my doc said scratch it, so i did, not sure why though. I haven't gotten into reading this thread but interesting how my doc wanted me to try gaba but not the niacin....... so now, i've got reading to do.... very inetersting
  21. I have to say, i've read every piece of this thread and all the links to the articles and to Yasko's site. Im SO interested in this! Love to learn anything that can be beneficial, even in an odd way. Does it not point bascially to a clean diet? of course the supplements we wouldn't know if we didn't have yasko's testing done, right? very interesting indeed..... and RKT im going to hit that other thread now.... and see what i can dig myself into
  22. Oh sorry... i meant to say, i had many many symptoms..... but i was stopped cold turkey. Def neuro and sooo many more, a deep depression was a symptom as well..... it seemed after i was taken off abruptly, that's when the increased heart rate all the time would start showing up everytime i was seen by a doc.... which was never mentioned before then.... odd....
  23. i would like to think how long you have been on it would post in a factor here. But I am on it currently and have been on it before, for about 9 mths. I was very naive about klonopin and had no idea how difficult it is to wean off of it. Very, very slow weaning is what seems best and from what i had researched alot about it, those who had been on it for years and/or at higher doses, had to wean off of it with valium (diazapam) and tapering down. Unfortunately I was stuck with a bad doc at the time who suddenly stopped it after 9 mths of having 1mg twice daily (which is i think too high for
  24. issie~ oh wow... i am so very much like you in many ways.... ah... i knew there was more to maca than i thought, but totally couldn't bring myself to remember it, or look it up... lol, im wiped out lately, totally in crashzone 24/7. I knew it had more benefits to it that just some energy. Even though it doesnt make a huge difference, i do notice THE difference there is when taking it with my regimen and when not. (i really.... really.... hate to take pills..... so some days i just don't take them, except for just a few main ones that have more of a bigger difference... it's something im wo
  25. issie~ i thought about sitting down with my doc and talking about tramadol for off use as energy only..... but im sure he would have a cow knowing the dose that works best for me.... and im really too chicken to even talk to him about it yet...... but i think: well, i could ask about provigil, but then.... which is the better med and has less side effects and is better for long term use and which is also more affordable with greater benefits. Since i haven't tried provigil, id rather stick with tramadol honestly. On the days i take it, i can function a WHOLE lot more than on the days i do
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