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Everything posted by lissy

  1. I'm contemplating the single life (married) and I have children, but I think being sick has kept me in toxic situation. Everytime I plan to leave deep down inside I worry can I do all this myself ,but the bad relationship keeps me in flares its a dilemma! So I'm not single, but I am scared about taking care of myself when I become single. Having a chronic illness is hard enough to deal with and lack of support makes it harder. Praying for strength for all of Us. Lissy
  2. Hey all thanks for the responses After all the researching California is way toooo expensive and unemployment rates seem out of this world, not a good place for a lower income family...SO my next place to search is Birmingham Al, husband has family there and been reading about the Specialist there:P so maybe south I'll b going. This searching for new locations have been very stressful!!!! And by time its over I could probably win a round on Jeopardy about US States hahaha.. Anyone in AL please contact me I have some questions (kinda personal) Have a great night all:)
  3. Sorry everyones feeling so terrible, as I have not been doing too well after a period of feeling better than usual:( Sometimes I just sit and wonder how many years can a person deal with the ups and downs and longer periods of downs, its exhausting in itself..I slept most of the day today just because I'm tired of all the symptoms I'd rather just sleep and that puts me behind on all my daily chores.A never ending ride is exactly what it is!!! I go to a counselor, I try to stay positive, but sometimes it just seems so hard. Sorry can't offer any advice just letting you know your not alone.
  4. D-dimer can be elevated during menses (clots) I had a chest CT with contract a few times no issues.
  5. Ohhhh Yes very common for me the migraines with and without the painful headaches and Aura the flashing, swirling designs. Have had them for over 10 years I can usually sense it coming before I become too impaired and they last for a hour at the most but I have gotten the auras to go away faster * I immediately close my eyes and sit or lie very still in a quieter area, and place a cold wash cloth on my face or neck and it lasts half the time...And I have been working on finding my triggers too much sunlight even if its coming through the windows, too much noise, stress, not eating regularly so basically have to watch everything I do... But as others suggested get some expert advice to make sure exactly whats going on. Take Care.
  6. Low vit D High Cortisol Elevated Liver enzymes High Potassium 1 positive AppT test (clotting time) Low Blood Volume 15% lower Straight neck with no curve on Xray?..
  7. Thanks JP, Yeah looks like I have to search other states:( the price is way out of my families budjet...So that dream will have to be put on hold until I hit the lotto Lol!!!
  8. Hi everybody:) I hate the ups and downs with the weather and I'm seriously considering moving to California before summer ends...I have been there before I became ill and loved it so I'm excited!!!!!!!!!! Can anyone recommend areas( orange county) for nice affordable family living and local specialist? Thanks
  9. We as women try to be as active and positive in our conditions and obsessive at times and if its Not sports or other things men find interesting they are gonna lose interest lol they have shorter attention spans, not that they don't care they just show their love in manly ways...They don't want us ill and its frustrating and men are way different, alot of times they deal with illness on a daily basis and learn to suck it up to support the family, sometimes to the point of neglecting themselves. So in alot of our cases we search and search uncovering the potentially new cause and in their mind its like "Just enjoy your life find a way to live with it " and accept this is the new you...I think when we search they see it as not accepting reality..but we see it as a potential way to be cured and have our life back. So those are just my thoughts and opinions. Balancing it out not only talking about illness is important, went through that myself! Almost 8 years married 5 years in June got ill. Husband not medically knowledgeable or interested in anything except how do I feel one day at a time;)
  10. Its is such a wonderful post!!!! Guess I missed it back then... I'd like to add I have the major over stimulation problem and I began listening to music on headphones last year and it has helped some kinda built up more tolerance.
  11. Altruism Anythings possible just prepare yourself this is me speaking after I consider a hard almost 5 year battle...Make sure to minimize your stress and take care of You, and move around like another poster suggested its important. You will learn a New You and its not easy I basically lived on this site for along while ( health issues consumed my life) and that was a bad idea not saying this site is bad Lol I just was on a Mad search all the time.... so just balance everything we're all here for you:)
  12. Some type of mottled color I think it should be
  13. I suspect having mild POTS since I can remember, which got worse after every pregnancy especially after the last that was in 2008 I was bedridden 3 months after delivery and I barely took care of my children but did the best I could, moved a mattress to my childrens room floor I couldn't move very far...It was a serious battle for a year to do minimum things. My situation didn't allow me to not get up no matter how bad I felt When a bottle was needed I had to crawl hold on to walls whatever it took. Mental strength is the most important!!! Even when brain fog takes over and you feel your mind and body is no longer 1 you must make yourself believe you can do it! Keep fighting and resting trying to balance the two. I am not 100% yet I still have days that feel like day one ( June 21 2008) but I have plenty more days showing how far I've come. I wasn't able to leave the house, drive, walk in stores (I held my babies on motorized scooters), I had to leave events, restaurants, get indoors just because I felt like death. I can now drive 40 mins, walk for hours with breaks, go to family outings and get my kids ready for school and take them 85% of the time it took years and the most important thing Ive learnt is staying mentally strong is the only thing that has gotten me where I am- Ive taken 0 meds I wouldn't recommend that, but that was another issue for me , I might be better than I am now if I had tried meds... So thats my story we all have one;) but they are probably all different with different outcomes
  14. Absolutely on the eye/ head problem, I noticed it more while walking and I turn my head in any fast movement or look up then down, also if Im sitting watching TV and they move the camera to fast. I Have to stay focused with little head movement like a daydreaming state . I thought it was in the neuro, spine, or ear dept...lol lots to sift through... Apparently its not outside of the POTS problems.
  15. Hi, sorry about all your difficulties:( I'm not around the site too often so can you post what you've already been tested for; As in sheehans, pheocromocytoma(sp)...postpartum cardiomyopathies. I know from personal experience POTS anxiety seems like it lasts longer ( more than the normal 20 minute panic attacks) and all my docs say is they can only say my test rule out anything other thsn POTS ans symptoms sound like anxiety, and they suggest the SSRI's to restart the autonomic nervous system. On the main dinet page and other research papers mention alot of us get dxed with anxiety but seems like thats included in this condition maybe its just more pronounced. Alot of ppl on here take SSRI's and other meds so Maybe once you make sure nothing else is causing the problems you may look into it. Becoming ill after having a baby is pretty hard to handle, I went through it been 5 years in March.Losing control over your health and accepting illness is a long difficult process and when we have to always focus on our symptoms and take vitals and perform all theses functions just to make our lives managable it adds to anxiety and we begin to associate every feeling with a potential problem or clue. So just know this is a wonderful site with the most knowledgeable people that have been to the best doctors in the world, your not alone & hopefully u get some more answers at your upcoming appointments:)
  16. And to add stopping the lining from shedding is not the fix its the ovaries, unless you are anemic then the options would be different.
  17. Hi, I was one that had severe problems due to hormones changes resulting in POTS symptoms being worse, I had a hysterecomy and left one ovary ( found out I had endometrosis) during surgery....my symptoms aren't as severe now but I still feel the flucuations since that ovary is still working so in my case no periods but still feels like I do, just not as bad. ITS been posted about alot so I think its a pretty common complaint :(Im at least 50% better but who knows if that due to getting rid of the endo....There is some hormone therapy that completely shuts down the ovaries but have heard it has some nasty side-effects maybe u can speak to your gyno about all options. Take care.
  18. I know the feeling:( I decided to take my 6 year old and 4 year old with me to pick up a few gifts today (2 stores) and whenever out I speed walk helps for some reason... Well while standing at the checkout at the 2nd store GUESS what I'm blessed with Auras so I got sad and panicy wondering how am I gonna drive home..By time I reach the car my vision was completely distorted my kids were very patient but I ended up calling their father to follow me to the grandparents a few blocks away. My body was so weak and completely off balanced and came on suddenly it frightened me, its never happened while out in public by myself. Sorry if this was off topic just frustrated with this illness so unpredictable and I had just got in the groove of being more independent. And yes I hate hearing of peoples minor complaints when we deal with more than most can imagine. Merry xmas
  19. I get it as well, and its really bad when watching TV with the words scrolling at the bottom of the screen. Like during the news..
  20. Sunglasses help, unbusy times of the day, using a scooter if available or one of those walkers with a seat. All stores do the same thing to me even if its a small drug store...and driving I think its the big surrounding with constant movement, something with sensory perception.Some type of anti-anxiety med, sedative even natural calming teas may help?? If ok with your docs. Goodluck been dealing with this for many years.
  21. Thanks for replies, had tooth out yesterday still recovering!!!! Didn't get blood tests Monday thought it would be to much to go through, so I will take on that probably next Monday. I can't believe I finally got this nasty tooth out I delayed it for 4 years I was so terrified of the local ( the medication phobia) but I feel so proud I will overcome these fears! Keep yall posted on the sleep test, and blood work:) I will look into everything you gals have mentioned;) Have a good day
  22. Hello All, Been alittle while since posting, been doing alot better since hysterectomy back in March:) But a few weeks after I developed random sporadic joint pains and the fatigue thats been going strong for almost 5 years now.... About 4 1/2 years ago I tested positive for the lupus anticoagulant (at my sickest point) but at the repeat it was negative so I left that avenue alone. But when I had a follow-up after surgery my doctor suggested doing back to the rheumy to get re-evaluated so I have about 10 blood tests to take tomorrow. A abscessed tooth removed Tuesday. And a sleep study Friday. Busy scary week for me:( But hopefully some answers. Is there any information linking Lupus to POTS directly? Or are they pretty much 2 separate issues? Thanks, Lissy Hope everyones managing well:)
  23. Hello, I had a complete hyster keeping one ovary March of this year, alot of my POTS symptoms have improved. I had the hyster due to a (what appeared to be solid mass on my ovary) once in surgery found out it was endo but prior to my surgery I discussed with the doctor to just remove all try to save one ovary because my monthly cycles were so severe with fatigue and dizziness general weakness ( not anemic) I was completely drained every month and it seemed my body was just giving up. Since surgery I only had headaches the first few months during cycle times no other major problems hormone wise, my ovary is working as normal. I have gotten color back into my face I am able to walk further distances...But I am early on its been alittle over 6 months but I am glad I did it otherwise I don't know how bad I would have gotten the funny thing is when I 1st got very ill with POTS it happend with my 1st regular cycle after giving birth and I kept begging for my doc to give me a hyster because I thought thats where the problem was stemming from and they wouldn't do it 4 1/2 years later they finally did, I had hoped that surgery would just cure me but thats not the case but I do see an improvement. Lissy
  24. I have frequent chest pains, flushing, and have had all tests besides an angiogram.,supposedly everythings okay?...Good luck with your test and keep us posted.
  25. Someone fill me in as to what your speaking of" flare ups"? Are you meaning alot of symptoms all day everyday for extended amounts of time like weeks/months/years? And then the symptoms improve but don't go away and that lasts weeks/months/years? If thats the definition then I would say one major long period lasting years(3), the second lasting months(8), and currently I'm going on (3) months. 1st time---Had to hold on to walls, sit in chairs to do dishes or cook, couldn't walk through stores had to have a scooter, major Shortness of breath! 2nd time--(before surgery)Not as bad as the 1st had alot of mixed symptoms daily very drained felt like I was fighting against something I couldn't defeat 3rd --(currently)---After surgery felt wonderful for about a month and started declining, more headaches, chest pains, dizziness, upper back pains, incredible fatigue, cannot tolerate humidity as it was with the 1st . The worse was probably when it first began and I didn't know what was going on. Years into this I guess I have gotten use to it but sometimes it seems unbelievable to feel so bad for so long. I try to compare my NOW and THEN to see if I have had any improvements to make myself feel encouraged:) I have never been bed ridden so I can't imagine how that is but I hope you get better soon, and that these Doctors figure more out so we can stop this crazy cycle of misery;)
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