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jenglynn

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Posts 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 read last night 75% people in marriages with chronic issues divorce. Not sure how reliable that study is- if all was created, but I know it causes more problems than I ever imagined, so, please - email me- if you have a question, some advice, criticism for ME. (I can take it lol) or just need to vent, PLEASE don't hesitate. I'd love to practice Abd she if this is a good fit for me, I REALKplY need to feel useful as well. Type A personality and bedridden for a year most likely- and likely to never drive again.

    I've had the help of so many through my ordeal- id love to give back something, no matter how small.. Not that I consider marriage, partnerships of any kind: gay, straight, circus, gypsies, you name it- SMALL at all. It is the cornerstone of our society. It is changing- good or bad, it still is changing but love isn't.

    You can email me directly at: teamslynn@gmail.com and I will get back to you. If any of you have a tricky question I'm not sure of- I will definitely ask for help from professors and CC you.

    Thank you!!!!

    Jen

  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 exhausted and it took over 3 hours. I usually wear yoga pants and a cute T shirt but I wore his favorite Victoria Beckham brand jeans, his favorite top ( neither fit me before- they slid right on). Put on a "real" bra instead of my Genie one. Did my hair (what's left of it) full make up. You name it. I took a picture to send to my BFF just to be sure and she said- "Well- you don't look like you used to- but you look really good and better than you have in forever.." (Gee thanks- lol... But we are always honest and it's true. I can only hide so much. But it was a marked difference). I can't get up but when he came home it was night and day. Nice, friendly, grabbing me. I've got to tell you - I wsh I was as positive Tammy as you. I was so insulted and offended! I was so exhausted that it took the rest of the day to recover. My Bp was so low/ HR so high. I guess "Sickness and Health" means "Sickness, Health, and looking your absolute best!" he actually said "Who replaced my wife with this beautiful creature."

    It's really sad. I feel like I've lost so much. I can't really parent anymore after 7 months in bed. I feel like a statue people come to look at. And when he reacted that way when I got myself looking decent- it sickend me. I was SO sure this time. How could he be so shallow?

    Jen

  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 it all the time again.

    Jen

  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- but my dad started double at least and violently ended them. It was a scary household, when I turned 18, got an apartment, took my brother (not quite 15) and moved without objection. We were in the same town. Well, of course I married someone with addiction issues- this time compulsive gambler. He treated me the same. Violent beatings, yelling, screaming, except he stole every dime while I worked 3 jobs and 4 raised kids- and lived every night on 2-3 hours sleep. I have autoimmune mediated autonomic neuropathy, Autoimune disease- undefined but aggressive, EDS- at Mayo they said all were lifelong diseases and something triggered it this time horribly.

    Fast forward to now- about 6 months ago Rob (hubby) started fighting, here and there. Now, a day doesn't go by when it's not WW3. I understand his situation *****, but I can't believe how SELFISH he is. I try to explain how I feel, within seconds it's flipped around to his feelings. I told him the other day that the "Poor Rob Syndrome" is miserable. How awful be must feel. He was the most loving husband

    Wonderful, I can't think of enough good words. He took over raising AND supporting my 4 kids (ages 10, 8, 5, 3) when I moved here and loved them as his 2. Until one night a couple months ago - he said things to me that I will never get over. He is my caretaker because he'd lost his job because I was hospitalized so long and because of my frequent syncope and many concussions I am supposed to have someone with me ALL the time. He hasn't touched me in MONTHS. He's told me I repulse him. It is like I'm married to a different man. He used to be so affectionate- now I make him sick. I don't get it. In sickness and health, right?

    I want my husband back because this man is starting to remind me of my first and I promised myself for my kids' and myself I'd never go back.

    LindaJoy, I'm sorry Ii cant I sorry I can't advise, but I have so much empathy. Personal message me or email me at teamslynn@gmail.com..... Sadly enough, I'm a Family Counselor. Maybe I can help you.

    Lots of hugs,

    Jen

    I hope you do email. I think I can help with more Info.....

  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 stand longer- NO progress since Mayo in Dec. My neuro finally said no more. You've have too much syncope, we can't be inducing it. You have already lost 30-40% cognitive function depending on the area . That us unacceptable to me. I'd rather be in bed the rest of my life Abd keep my brain and who I am, others maybe don't feel like that and couldn't it. What I've already loss breaks my heart.

    Jeb

  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 have Autoimune Mediated autonomic dysfunction neuropathy. Along with that-.EDS, I have have post concussion syndrome- after 10+ concussions. I will stop there but my list is a mile long.

    It almost seems dangerous to see someone who doesn't take them seriously. Ugh. But no one has helped but I am registered in Milwaukee and Dr. Chilemsky us very I interested in seeing me, I wrote a LONG "Poor Me" letter telling him about my treatments, all the failures, all of the syncope, bed bound since early November. At least I used to be to be able to crawl -but now my syncope is no better crawling and I have BAD knees from an accident as a teenager- ALL my ligaments were severed (EDS???) and they could not repair it completely because of the stretchiness of my tendons and ligaments- so lots of screws and my joints come out of socket every day. Ortho says while I'm in bed I should have 2 knee replacements- everyone says are you crazy?

    I am thinking about leaning AWAY from chiro. It sounds like he does gentle adjustments with a small tool and would in and out in 5 min. If my house. Seemed odd.

    Jen

  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 VERY involved in helping and I'm just overwhelmed with the resources they have opened up. Anyway, because I'm bedridden he is willing to come to my home as much as daily if need it, supply me with all the supplements I need to stay healthy and continue lifetime treatment and nutrient supplements and nutrition classes forever, FOR FREE should I accept.

    Have any of you heard of chiro treatment "curing" autonomic neuropathy caused by an autonomic disease, with that autoimmune disease being very aggressive, EDS, and all these other issues- or even making them functional? Should I consider this or could it be dangerous? When I asked my current neuro he said."Absolutely NOT!!!!!!!! but nothing else has helped? Input or results? Thoughts? Thanks guys!

  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... I think it was someone on this forum who mentioned Dr. Thomas Chellmsky and that he moved to Milwaukee and how helpful he had been. Last week I sent a detailed email describing me and symptoms to the general neuro dept. where he works and I just got a call from his front desk. I guess he is out 9 months for new patients but they already got me registered and he wrote something on the paper with my name and number that he gave to the scheduling specialist that he felt so strongly that I need his help. They can't give me a timeline but they are trying to get me in A.S.A.P. I asked the girl at the front desk if there were any other good neuros who specialize like this the she would recommend- and basically she said- I cannot give you a date but we are going to TRY hard to get you in soon. She also sad "If I were you, I'd be patient and wait for him. He is wonderful, he will listen, and he will likely make you better. I'm sure you will have a marked improvement than you do now." I think I will be patient and wait.

    Does any one have experience with him or heard good/bad/I different. I don't just P.O.T.S- I have Autoimmune Autonomic Dysfunction Neuropathy- I know he specializes in P.O.T.S but. It sure about other areas. Thoughts or opinions????

    Thank you all!!!!

    Jen

  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 it I would have never imagined a year ago that this illness would bring me here. Right now, my flare is very bad- I'm lucky together out of bed. M hubby has to do everything for me. Like I said, driving is another thing (but a big one) on my growing list of things I can't do.

    Jen

  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 Walmart or something tomorrow (not to insult anyone who works there...I just thought I may not need an appt if they are open on Sun which I doubt they are. Maybe LensCrafters or something in the maall). These issues with my constant dizziness, syncope, per- syncope-and the other other symptoms I forgot mention. I wonder ( but really hope you don't) if you have them... My tremors, shakiness, trembling, jerks... And it's especially worse in my legs when I'm sitting for some reason. But the other day my 9 year old daughter tried to hand me my phone ands my hand started shaking then clenching and had no use of my hand, that the first time that has happensbut all these new symptoms are just so scary. Even my diagnosis, like P.O.TS. Is like WHAT?!?!?!?! It just autoimmune autonomic dysfunction neuropathy. It's all so confusing.

    Good luck with & your family.

    Jen

  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 reason

    The next issue is vision, I have always had some blurry vision, and double vision late UN the day. Now the double vision is 24/7? Whenver I look at a computer screen or phone it takes me 3-4x and I'm not exagerrating-- to text, email or Facebook. I will often get so tired when I'm trying to type I fall asleep. It is like my eyes are triggered by typing, so I have blurry vision double vision,

  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 could be related to Florinef.

    I take 15mg of Midodrine 3-4x a day. It DOES lower my BP but not enough. My BP is rarely over 50-60/30-40 range. Without Midiodrine it's lower. That's what I've been experiencing the last month. It seems like every other month this happens. Then my "high" will be 75/60 (just generalizing- these are not my actual #) sometimes in the 90/70 range. I get all the yucky side effects... Itchy scalp, freezing all time (If you take Midodrine don't live in Wisconsin although this winter wasn't so bad) hands and body tingle, some people complain about over active bladder!!!!! I have a severe case of urinary retention so I might not mind that one. I wish it worked better, but I love of issues and am completely bedbound so who knows? So far it's the only thing that's helped even a little.

    Good Luck with your daughter!

    Jen.

  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 I have to everything else. The list has to end somewhere, right?

    So it seems as if most all of have vision issues. Who do you go to? Double vision, not seeing letters or being able to type? I've never even had an initial exam for all of this so I assumed it was neuro related. I think I also mentioned my pupils and issues with those so don't see at all at night. So who would the correct doctor be? Thanks again everyone

    Jen

  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. Is a major stressor to me and as usual, as I always hear- "You have bigger fish to fry" and my neurologists won't even talk to me about it. Last two weeks, the double vision has been so bad ... I HAD to talk to him- he just left me a message telling me just to go to a regular year whenever it's time for your check ups. I also have a smaller communicating artery on that side- both pupils usually stay dilated always and my left artery is 25%bigger. Plus all my other issues that I have, especially syncope which has progressed to sitting syncope. Oh, another thing! Tell me if this happen- do you ever see things out of the corner of your eye- like perififial vision.

    Anyway, due to these issues and others I haven't driven since Oct. 2010. That was HUGE thing- another piece of dignity and independence- gone. So how many still drive or have stopped?

    Jen

    boutvv

  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 finding a new passion that was compatible with each stage of my illness.

    The next morning I started my journal- that was my first passion. I could hold a pen, notebook, and think- not always clearly :) but I could think of how this had made me BETTER. I know it's hard for all of us- but my Type A Personality with LOTS of childhood and first marriages issues I'd never dealt with we're just waiting for me. I was sure my Type A came from that- I never wanted to face the abuse so if I was always busy and running around, I never did. So I could type forever but I will give you my favorites:

    * Faced the abuse that took place in my childhood and first marriage- and realized how much more I appreciated my new husband because I had been through such trauma. I know I would still love him had those issues not occurred but not realizing how blessed I am to have a husband as giving and loving.

    *Became a MUCH better Mom (although I'm very sick and bed bound so go back and forth on this. Because I miss out on so much) but prior to this illness I HAD to be Supermom. I did a lot WITH them, TOOK them a lot of places, cooked, baked, house was always clean, and I did everything- that's biting us in the butt now. But I think back to all the times that the kids had something to tell me, or show me. It was always: "Just a minute, honey" or "After I finish this paper." Was also in full time grad school. I have a new gift that I believe God handed me on the POTS platter- PATIENCE. I never had it. Efore- but with these illnesses you'd go crazy without some degree of it and I have it for my SIX kids. Because I'm in bed all the time :( I am always there to talk to, cuddle with, or just be together. That is a gift that I wouldn't trade for all the world. And it's taught my kids empathy and the importance of being healthy.

    * I have so many more- but I will just share one more. The nurse who prayed for me- she was my guardian angel, I'm sure of it. Not only have I always had hobbies that fill my day that make my days fly by... I will often look at the clock and not believe its already 3pm!!! But I'm thinking of life after Disability. I am passionate about Families and how they function- especially Blended Familes" because that's what ours is and I know I've learned so much to share with others. I definitely wanted to work with medical patients as a Patient Advocate. I'd love to do this in a volunteer fashion and most likely, in the insurance area somehow. I was in the med. insurance field for 10 years and have heard it all. I always felt that because I personally cared- the whole industry must. After becoming a patient with a serious disease and trying to deal with this company- who EMPLOYED me- and just screwed me over at every turn. If it was so hard for me I imagined how others might struggle.

    Beautiful idea for a thread!!!!!!

    Jen

  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 concussions, preventing future brain damage is top priority. I do wear a helmet but can still get damage. I feel completely disabled. I'm still having 5+ syncopal spells a day at Keaton. This is crawling or even wheeling my rolling walker with the seat. I have to force feed Abd drink. Bladder is non functional. Kidneys are only at about 40%. Thyroid is completely out if whack but no one worries about that. Im extremely hyper if you look at my TSH- .02 and T3 and T4 are hypo. It's crazy. And I've lost about 50-60% of my hair :( I could go on and on- but the type of exercise, or even the ones who "take it slow'' is out if the question- for now. I do leg exercises in bed and arms w/ resistance bands. Right now, I'm in a very nasty relapse. I can't do hardly a thing.

    I can't even get out the door for the last several days. Do you any suggestions for someone like me? Have you ever seen someone in my condition get better with exercise? My only rule is no head injury risk. I can't take chances there. Not with the dysfunction I already have.

    Thank you again for taking the time to update. You and others like you on the board ( Lemons, Issie, etc..) do so much for raising the hope of those of us who can't even imagine being at that point. I'm do proud of you guys!!!

    Jen

  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 they've ever seen" so I won't go there but my autonomic system- including organs just wasn't working at all. DX- Autoimmune Mediated Autonomic Dysfunction Neuropathy. So I asked- do I still have P.O.T.S now? Neurologist said I still do - but now more of a symptom than a primary diagnosis. They also discovered this rare autoimmune disease that there isn't even a name for.

    So I can have both at the same time? Which is the better one to focus on? Is one better than the other? Is one likely to go away than the other? I'm always asked and if I mention both I get these questions. I don't notice the difference as I feel exactly the same now as I did when I only had P.O.T.S. they are both horrible and still disabling.

    To be honest- I struggle much more with my Post Concussion Syndrome- so much loss of cognitive function, memory loss, my family swears I'm a different person. The headaches that I can't even describe. That's from 10-12 concussions. I have no certainty of my future but research so far isn't great. When I say struggle, I mean it makes me more emotional, causes more problems family problems, and is so discouraging. I will read this 3 times and I'm sure there will be errors- part of my identity was obnoxious I know- but a grammar snob. It just feels sometimes like it will never end. It's always something else.. But that is a non productive and ridiculous attitude to have- so out it does!!!

    Thanks everyone- maybe I will the concussions for the question. :) Happy Full Moon Night! ANY insight would be so appreciated!

    Jen

  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. I took it with Florinef and I had to stop the Florinef because I'd get these headaches and head pressure that were not in any way tolerable. I really tried. I've tried other drugs as well like Mestonin but that turned me into Wicked Witch and just not for me. Midodrine is pretty much the difference from me having NO BP (okay, slight exaggeration) and being able to hold my head up. I'm lucky to have a 50/30 BP on Midodrine but without I have no idea what it is- I can't get a reading on it- I can't even sit upright for 30-60 seconds let alone be upright. So I don't even know if I could say that it "works" but it keeps me awake so I can talk to my family but hardly what I'd call a very good quality of life. So, I keep taking it. I always wonder though - when am I going see one of the class action lawsuit commercials for it?? "Have you or any of your family members taken Midodrine and now suffer the following side effects: yada yada yada.".

    Jen

  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 nit. About 12 years ago, I came home from shopping when I lived with my X husband and had just had my third baby 3 weeks before. He "announced" that his parents, sister, and her 3 kids would be staying with us for a bit. That is just a teensy example as to why he's an X...

    Jen

  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 likely) but I have a nurse and social worker. My social worker helps coordinate community resources and they pay for ll supplies, counseling, therapies I need right at home. They also pay someone to come in 40 hours a week. Well, because my hubby had lost his job when I was admitted to Mayo- they said he could do what he does now nd get paid. So for now- that's how we are managing but not long term. They only pay him $11.00/hr which is a lot less than either one of us were making- but please don't take it wrong- we are grateful it's there.

    My situation still has me stuck in bed with multiple syncope a day because I crawl to the restroom or whatever and I faint even crawling but the injuries are less.

    Good luck to you. Did you apply for disability and turned down? Like I said, lots of people are turned down initially Abd appeal and are successful.

    Jen

  24. 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 seeing spots or dots in front of me. In the last 2-3 weeks my double vision has increased so horribly that I cannot read pages from paper anymore- cant text without making tons of mistakes and it looks like I'm holding 2 phones. I'm on my iPad now and its the same way, I have 2 instead of one :). I know I make so many errors in my typing but I don't see or catch it anymore like I used. My neuro said I need to see an eye doctor which I guess I need to do but seems like a waste of time.

    Interestingly enough last year I had CT scan of my brain and my Communicating Artery (think I'm missing a word there, but an artery in my brain) on my left side was described as dimunitive and very, very small compared to my others. When I went online everything I found said this is one thing you look for when you find an unequal pupil. Now that I know I have EDS I'm wondering if this changes anything- given my grandmother, her father, and his brother (grandma's uncle) all 3 died instantly, within seconds, of aneurysms. I mentioned it to my Neurologist and said I was making something out of nothing and there is nothing to worry about. The BIG question?? Do I listen or NOT?

    I feel for you Kimbell- the vision problems are so distracting, I don't know what annoys me the most... Either the floating objects/stars etc always "there' or the double vision,.. And the blurriness has really increased too... So it is all annoying- I just want to know if it's dangerous?????

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