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Everything posted by jenglynn

  1. This may sound silly and ridiculous- as I just finish telling you the story of my messy marriage. It wasn't always this way and it won't always be. I find his behavior selfish, unacceptable and will not tolerate it. So he's a pretty quiet caregiver!!! The ONLY solace is that I KNOW be knows I'm right. I'm only one half semester away from finishing my Masters in Marriage/Family counseling. I have decided if my brain holds up because it's iffy now..... I am going to take some extra classes because I'm fascinated now about what the spouse and patient deal with. It's a new passion. Sadly, I r
  2. All this conversation is wonderful. I'm sorry we are facing it, but it is nice to talk!!! Thanks Rich! I may read the book but my husband WILL NOT. Everything wrong in our marriage is MY fault! I'm controlling, demanding, rude.. You name it. Tammy, I almost giggled when I read your post ( but I know you are hurting and could never laugh at your pain) because I tried the SAME thing 3 days ago, my husband left early and would be gone 4 hours. Well, I can't walk, stand, do anything at all when I'm not lying down - so 4 hours isn't much time to make myself presentable. But I did. I was exhaust
  3. Anoj and LindaJoy, This was a side effect I wasn't expecting. I do look pretty hideous. I've lost over 50% of my hair, I have no energy to look like I used to. Certainly not sexy.butbthis is so shallow and unexpected. I've started doing what Anoj has done. For now, I've given up. But I'm so lonely. It's hard enough to feel like this every day but some compassion? Too much to ask? Maybe we should form a support group off this forum for this topic. This really affects your healing. Jen
  4. I guess he is just afraid he could HURT me if he is messing around with my neck and eventually other joints. I know I seem very ungrateful - he's offering me free treatment and I'm questioning everything. If he could cure me in a month I will eat my iPad- but he wants me to see me every single day and I'm just unsure with some of the severity of my symptoms- messing around with my neck. That's why I posted! I want to hear all opinions- even the ones who think I'm the quack!
  5. I used to be obsessive with my iPhone HR and then I bought one of the BP monitor that also attached to my iPhone. Then I was hospitalized from nov. to New Years- I'm pretty good at recognizing my symptoms so I don't use it as much. I would say its a good idea to have one. I still check my BP every morning- before meds- and that gives me a hint. I feel horrible today and woke up lying down with 50/33 and 168. My guess would be that she will use it less as she learns her cues better. That said, I'm still bedbound so once I'm able (EVER) to get get up and walk and exerciseim sure I will use
  6. Linda Joy- I'm not sure if Joy is in your first name or middle name- but it's my middle name:) Something in common! My hubby and I have been married 6 years- and we have 6 kids. Before I go on- I will say 2nd Marriage!!! Blended family! My first husband was abusive, time, emotionally, verbally and physically. In front of my children. I grew up in a home with 1 younger brother that I raised even though there were only 3 years between us. My parents were addicts, Drug. addicts, ALL kinds every kind and alcoholics. They were extremely busive to each other. My mom would start a lot of arguments-
  7. Sounds like he could be really good! He seemed really determined to see me but the email I sent him was just listing every ingle symptom I coud think of, and. BEGGING for help. I was shocked to hear back. It just went in this general email account- and before two weeks they had called me. I pray he will see me and he can help. I hate to be constantly whining - but I have 6 kids- but we are almost pass 7 months in bed. And it's not one of those things I can work out of by myself. I have home PT and OT- they along with my hubby tried the let's get you higher and higher Abd see if you can stan
  8. Rach, I think that's my problem. He has never seen nor reviewed my records. He has only spoken to a friend of mine that most likely has to struggle to remember what my symptoms. But when I spoke to him and he said he does not believe in DX- only healthy or unhealthy- for someone in my position - just not quite sure- I felt like he was a total quack, I DO have DX, serious ones, I wish I didn't but I do. I'm a little nervous to let someone who discounts them so easily. I won't go into them all, but I have a yet defined autoimmune disease which is attacking my weak autonomic system- now I hav
  9. I have a friend who, as most people, SWEAR by their chiropractors. I have nothing for or against them. So my friend called me the other day and was describing his philosophy- he doesn't really in "diagnosis" There are only 2- Heakthy or Unhealthy. He is into good nutrition, that's great, relaxation, and adjusting gently and he thinks he can cure me in a months time. Actually- right now I have 4 different chiros trying to get my attention. I'm not sure why other than my illness is high profile in my community because I've had a little publicity and a fundraiser benefit. And my church is V
  10. A year later this began, I'm not any better now than I was then. Physically- the same. . Very low BP, high tachy, lots of syncope, hundreds and hundreds of times. Along with POTS, I have Autoimmune Autonomic Dysfunction/Failure (depends on doctor) Neuropathy, an unspecified Connective Tissue Disease (suspected EDS but major facility I was inpatient refused to test it- acknowledged I had one just refused to test.). Since Oct./Nov. I've been in bed because no one can fugure out how to keep my Bp high enough. I have about 30-60 seconds until I'm out. I have of organ involvement as well. Anyway
  11. Thanks all!!!! The vision is unbearable for me... But the "buzzing" I guess in my ears to accompany the ringing is about the mist annoying thing ever, I wish I could describe it but the buzzing sound has this electric sound so almost like power wires??? I worry about my visual changes, though. I know it doesn't do any good but it's hard not to at times. Jen
  12. Thank you all again for chiming in. Lyn, I will start looking for yet another doctor. Not quite sure why my neuro wanted me to see an optometrist? Rule things out. Lyn, Would you RATHER see another doctor? If not, I will research her and see about her. If not, then I will start looking. Maybe I will find one for both of us. I'm in La Crosse which is kind of Central Western. You don't have to say exactly but where abouts are you n the state? Give me your thoughts and let the research begin. As many has mentioned, I'd NEVER drive for fear of hurting or worse someone or one of my kids. But
  13. Thanks Naomi... I just had an MRI but never any eye testing. Should yay be next? The buzzing is driving me absolutely nutty!!!! It is not in my in my ears either its my head, with this weird humming sound that goes back and forth. The ear rearing is all the time and sometimes I have them together. SO annoying. I'm amazed at how loud it can get and I haven't even found a name for it!!!! My vision issues change constantly. Thats why I get so many typos.double blurry. Jumping around, pupils. When I called my neuro he said to start at the lowers level eye doctor??? Okay???? So I'm going to Walm
  14. Happy Mother's Day weekend!!!! I have had variations of these symptoms over the last year- vision and hearing problems. I would always get lots of ear ringing. VERY rare that my ears are not ringing . So when I have syncope/ near syncope I would have loud but normal ears ringing, tinnitus. When I dont I even have syncope or even just lying down, I'm having a new symptom- ringing and a new buzzing sound- that almost sounds like an electronic buzzing, and it goes back and forth around my head. The buzzing isnt painful just distracting , annoying, and actually quite frightening for some rea
  15. I've taken both for close to a year. I've had significant side effects from both I've gotten so much worse in that time I wonder why I take either.. Lol.. But everyone reacts differently. My problem has really been with Florinef. I take .2 daily and it's a night more. It does retain fluids and salt but it gives me such a terrible headache and this incredible pressure in my head. I am actually trying to getting off Florinef.. I have had migraines as long as I can remember and I have Post-Concussion Syndrome after 10 concussions. I want to determine how much of my daily headache issues coul
  16. Thanks for all the replies. So it sounds like most of us self imposed our driving privileges. I did as well, but would never want to hurt another family or my own. Peace- funny- you mentioned my other 2 concerns. The pooling and the Cognitive Issue. I have some loss of function and I'm afraid it would be that extra second or two that could make all the difference making a decision that could be the difference between an accident or near miss. Sounds like most you who have responded have adjusted quite well. It just seemed like it was one more thing... But like you, I will adjust to this like
  17. Just an informal question- after llcvsmom's (I so hope I spelled that correctly- if not, my apologies) question about Brain MRIs; lots of talk about vision, since my initial onset last April had very little vision issues. When I was super tired maybe- blurry vision, double vision... And constantly enlarged pupils. Now, over a year later my vision problems are scary. For example- when look i look at my phone- I SEE two phones I know it's one. It does make texting a little easier- I have 2 keyboards even though there is only one there. My vision actually splits them in half. I known vision
  18. You are all such beautiful and amazing people!!! What wonderful responses. As soon as I was diagnosed with P.O.T.S i started keeping a gratitude journal for my illnesses.. I had been sick for quite some time before "kind of" DXed- we knew it was autonomic anyway. Later at Mayo I learned there was more to it than P.O.T.S. I spent a whole day in my hospital bed, crying and feeling sorry for myself. Before I went to bed, my nurse gave me a hug and said she was so sorry- such an odd illness, not a lot of answers,and she said she would pray for answers for me but also a positive attitude and f
  19. Jangle, I've said so many times here how inspiring you are. And I love the fact the came to the board to share your success. You put that much hard work, your whole tachy heart, and persistence- most people could succeed at anything. My question is this: Are ALL forms of POTS "cured" with exercise and does it take it away forever or do you have to continue the exercise forever? I know whenever I say this- I probably get lots if eye rolling and "whatever's". In the state I am now, I could not walk from my bed to the door. I've tested this theory by the way- more than once- and after so many co
  20. I know, no silly questions, right??? Most of you think "Yeah, right" and I should know this but I'm not quite sure. It is mainly a question I get from friends, strangers, etc. So I have P.O.T.S. and got that mostly figured out. That was diagnosed in Nov. 2011. In Dec. went to Mayo and was diagnosed with at least 7-8 MORE things... I am always grateful that I started having mild symptoms in April 2011- didn't get severe until Sept.- and had ALL (well, as far as I know-diagnosis' )back in Mid- Dec. My autonomic testing came back very, very bad. I know we all hear it said "Mine was the worst t
  21. I take Midodrine and have been for 7 months now. I take 15 mg 3x a day. The main side effects are the scalp itching, tingling, feeling freezing.... I guess I'm "lucky" because I have urinary problems and have urinary retention- so the Midodrine doesn't change that. I wish it would. Although I know that I've had urinary frequency before and that isn't any better. I thought the side effects would last forever because after 6 months they hadn't changed a bit. But I don't know if I'm just getting used to it or they are not as severe. I wish I could say this a my "Miracle Drug and Cure"- it isn't
  22. Michelle, I'm sorry, if you can't work maybe you can do other things to bring in money, sell things on Craigslist and EBay. I'm not sure how disabling your symptoms are but sometimes we can get lucky enough finding online work consulting in our field, I did that last spring before I accepted I was sick- I was still working too... I stayed in denial a long time! Funny you mention you mention Scentcy. My sister Abd are going to start a business together. I think we are over saturated in our area but who knows. It's got to be hard living with your fiance's whole family whether you live them or
  23. The finances are SO hard.., when I left work I had a Long Term Disabilty plan so we were using that. But I have to apply for SSDI so if I get that my LTD only pays the difference between the two- So if LTD pays $1500 and Social Security pays $1000 then the LTD would still pay $500 to make it at least even to what they pay. I applied in Oct, for SSDI and haven't heard a thing so who knows. Everyone has prepared me to be denied because you usually are. I also qualified for this program called Western Wisconsin Cares (I had never heard of them and never would have contacted them myself most like
  24. I told the reporter about the website and we will talk more in depth when we do the full interview on autonomics- but she wanted to put the website at the end of be first interview. Jen
  25. It is a little scary, isn't it? I have autoimmune mediated autonomic dysfunction neuropathy- but when Rama said gangliopathy I remember that being brought up as well as the cerebral hypoperfusion. I can't look at my records right this second- but i will look at home-so I'm not sure if they tested me or DXed me with either. My pupils are almost always dilated as well. My left pupil is about 20% bigger according to my Mayo neuro. All 4 of my kids have chronically dilated pupils. (ages 15, 13, 11 and 9). I have not noticed them being unequal in size. I have a lot of blurry vision, always am s
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