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Everything posted by jenglynn

  1. I think that what bothers me the most about this is that these parents are not INSIDE their child's body so they can't truly know how they are feeling. So, forcing them to go school when they say aren't feeling well for whatever symptom they may have, seems not only counterproductive (meaning they will feel worse the next day most likely due to overexertion) but cruel and a little heartless. I get the point that we have to push ourselves as much as we can- but that is the key- OURSELVES. As another person, how can you know how hard to push someone when you can't feel when they just can't do
  2. I didn't vote because none really applied to me... so I will describe mine. I have pretty much ALWAYS had symptoms and never remember not feeling this way. But I will go based on this flare which began last April- almost a year ago. Many symptoms began all at once: fatigue, tachycardia, syncope, dizziness and shortness of breath. I am assuming with the syncope I had some orthostatic hypotension but I didn't know at the time. I gradually got worse and worse- and by November I was having syncope almost every time I stood up, extreme hypotensive, some organ failure, tachycardia, along with t
  3. Christy, As a mom that does seem incredibly harsh. Punish him for being sick. This isn't something "in his head" he is physically ill. Like I said, I would not respond to that treatment, and if they were to try to "train" my husband or any caregiver to treat me that way, it would NOT go over very well. I would think he emerged feeling emotionally worse rather than better. :mellow: From what I witnessed, they didn't adopt those same ideals to the adults patients with POTS. Have you found treatment for his elsewhere? I guess I am just making an assumption that you no longer go there? Jen
  4. Issie, I am sorry, I haven't followed this thread all that closely but I saw that Issue and Sugartwin were talking about EDS and I had a question for Issie.. EDS is a genetic disease and as it affects all tissues could it also impact the tissue in organs or muscles? For example, could a baby born with EDS be more likely to be born with a hole in their heart because of the stretchiness of their tissues? What would your opinion be on that? Thanks so much! Jen
  5. I have wondered about this... I have Orthostatic Hypotension. I usually have at least a 40-50 point drop upon standing. But once, when I was given too high of a dose of Mestonin my BP got up to 200/145 which for me is HIGH, HIGH. My normal upon waking, without meds, is in the 60s or 70s over 40s or 50s. The nurse did an orthostatic test on me- because lying down my BP was 200/145 (other factors could have led to this as well... I had also just finished a course of IVIG too which can lead to high BP) But I had to do the orthostatic BP tests 4x a day so we did it... and when I stood my BP we
  6. My last concussion in mid-Feb I was like that. It was a frontal lobe concussion and I became a completely different person. I was full of this anger and rage one minute, the next minute I would be sobbing uncontrollably for no reason... and then back to whatever I was doing the next. When I say anger and rage- I mean I was throwing things (I threw my iPhone at the wall! HELLO! I would NEVER do that!!! and thank goodness it didn't break)... Demanding, critical, emotional, just overall a crazy person. My husband AND kids were avoiding me like the plague. That didn't help and just made me
  7. I know they are supposed to be good for you- but I absolutely detest them. I WISH I could eat them (I guess I should not say COULD- of course I could- but won't because I am a brat) because of the health benefit. I have ZERO appetite and hardly eat a thing at all and unfortunately survive mainly on meal supplements for the time being. I can't imagine that is very healthy either even though my doctors constantly tell me that I will be fine to continue drinking those and just making sure I get enough calories and the protein, vitamins, minerals I get from them serves me just fine. I believ
  8. Oh, very interesting. Thanks for clarifying. Some of their symptoms are better, but it is also a mind over matter thing? Behavior modification. I was wondering when the mother was discussing having to change her parenting style what that had to do with it. If my husband did that to me, I would probably throw something at him, LOL... if I am feeling horrible, and he tries to tell me I am not. It is interesting that they have an adult program. I was inpatient there for more than 2 weeks and that was never even presented as an option. So is it only offered to certain types of POTS patients
  9. I was diagnosed with a "connective tissue disorder" due to extreme hypermobility and stretchy skin but the facility I was at didn't want to pursue testing at that time. I am fairly certain it could be EDS. I have torn numerous ligaments (at age 14 actually severed, not just tore, all four ligaments in my left knee by barely twisting my ankle- I mean I didn't even fall down it was so minor). Have had MANY dislocations of joints (too many too count) and can do all of those tests- like pull your thumb back to your forearm etc. So if it is EDS I am not sure what kind. As I stated in another t
  10. This is a perfect example of why more time and research needs to go into sub-setting and categorizing those of with these conditions. Whenever I would mention to my doctors at that facility anything about POTS they would always correct me and say that: "You don't really have POTS, you have autoimmune mediated autonomic failure/dysfunction. But I still have POTS because I have the syndrome but it is caused from that. At least I think so, or am I wrong????? I have always questioned that... and wondered by have never been given an answer. Mayby one of you far more educated than I am on this c
  11. Are you SERIOUS ????? That is absolutely hysterical!!!! I JUST told my hubby yesterday that he should start calling me Smurfette because I'm more blue than any other color.... LOL. Great minds think alike I guess.... Or minds trapped back in 80's cartoons anyway!! That is just too funny!!!! I'm going to giggle about that all night. Well, let's hope we get some answers because now I am extra curious!!!! Jen
  12. I know this is really a "silly" and very unscientific question- but do the appearance of our veins have anything to do what kind of POTS we have? Technically, I'm diagnosed also with autoimmune mediated autonomic dysfunction. I have orthostatic hypotension and right now it's anywhere from 30-60 seconds upon standing until syncope. It's been that way since Nov. 2011 at least. Although I've been a fainter since childhood- I'm not sure when it started but around age 9-11 to my best recollection. Anyway on to veins- you can see practically every vein in my body, it seems (I know I really can't). T
  13. Issie, It would be AMAZING for me to meet you in person. I would consider it an honor. I have NO idea how I inspire YOU... I feel I just somehow manage to get through the days, but if I do in any way, I'm grateful. You help so many people on this forum and your kindness, compassion, and empathy literally shines through in every post. People like you are the ones who help us cope with illnesses such as ours. I don't understand it. No one seems to. Every visit leads to more questions than answers. Just like every test. Doctors look at me and shake their head, say I'm a mystery, they are baffle
  14. BUT- I'm not going back on my original point- because I have (according to the DOCTORS, not me) completely confused them- and given the strong family history we have of connective tissue problems (some resulting in death as in my grandma, her dad and uncle- all in 50's or their early 60's), all fainters, all have other neurological problems as well ( one example- not sure about my great grandpa- but my grandma, myself and daughter ALL had/have constantly dilated pupils all the time). That is one example of many more I won't bore you with. I'm the only one as yet who has tested positive for an
  15. Thank you Issie! I was actually just coming back on here to apologize for my snippy replies as I've had a physically rough morning... Battling VERY low BP and VERY high tachy, vomiting, a pounding headache, and six children who are hyper as can be and driving me batty. Not that it excuses anything, I guess it was just my name being used and when I went back to re-read my earlier post, I wasn't sure what he was talking about- so I overreacted and was too sensitive and defensive. So, Rama, I am sorry for my catty, snotty remarks and if you WERE referring to me- please- correct me if I need to
  16. Firewatcher, Question.... I've been struggling with "thyroid" issues for the last several months. My TSH is hyper ( I think .06 last time- 2 years ago it was 2.2 ) but my T3 and T4 is more between normal and hyper. No one has yet to figure ths out but the pituitary gland has been tossed at me a few times... I've had multiple TBT and 9 concussions. What does the brain injuries do to the pituitary and do you know what signs I would look for? Than you!!! Jen
  17. After re-reading my post- may have sounded a little catty and that was not my intention. But I am just learning about this stuff. Some of you have your diagnosis figured out, some don't. If anything, I am worse now than I was when I went to this world renowned medical center and spent close to a million dollars. I am a patient who is frustrated and quite frankly, like all of you, been through a LOT. Essentially I've lost my life as I know it. I'm confined to a bed or I have to crawl around the house to move around, wearing Depends by the way because my bladder doesn't work. I've not only lost
  18. Rama, Wasn't at all trying to offend or annoy you or anyone else, or post anything as a fact. All I was saying is that I was frustrated that this certain hospital would not look into my probable EDS- even completely aside from autoimmune or autonomic conditions. It is an emotional subject for me because I had a very hypermobile grandmother who died relatively young with an aneurism. As did her father. She was also a fainter. I have all of these physical attributes of EDS but no one was willing to test me. Now it gets really emotional - I have a 13 year year old daughter diagnosed at 12 mon
  19. Wow! Thanks for all the info, Bunny!! That's interesting you have 2 friends who faints.. One crumbles and one falls straight back. We do have a tilt table thing and I've used it a lot since I got home from the hospital, gradually adjusting angles. So far, it hasn't helped anything, but I still use it and pray one day it will. I really don't believe my autonomic symptoms will improve at all until my horribly aggressive autoimmune disease is under control. Its continually attacking my autonomic system... So everything I try won't really "work" until that been calmed down or in remission or
  20. Kayla, I found out in Dec. that a group of friends were planning a fundraiser for me- the event is called "Jen's Angels" and I am just amazed at what they are doing and how much they've accomplished. It's the end of April. But I know nothing about the planning process because I've been deliberately left out of it so I'm not sure what they've needed. I can ask my sister, who is involved, if you don't get what you need to know by responses on this thread. I would imagine the rules would vary by state. I'm actually really embarrassed about the whole thing and almost died when they told me about i
  21. WOW... I am feeling like I am jumping in VERY late to this discussion!!!! Back in 2008 I had an "episode" of Cluster Headaches- not sure if all of you are familair with them, but they are different kind of headache. Here is a description of them via a web link from Mayo http://www.mayoclinic.com/health/cluster-headache/DS00487 . I have to say, I have NEVER experienced anything like this. They would get so bad (and I am embarrassed to even admit this but I would actualy grab whatever what closest to me and beat myself over the head with it- just to re-locate the pain). I also started having
  22. I am so sorry girls!!! I am not sure why YOUR comments got edited but maybe because mine alluded to a mistake made by a certain facility??? So they removed anything even remotely related? Again, I am sorry!
  23. Jan, Thanks for all of the (unfortunate) insight. I agree that these LTD companies are almost scams in a way. We pay them and they do everything they can to get out of paying US the benefits we paid for. And I so agree about the kids. That seems unethical at the very least and illegal at worst. I don't know how they get away from that. I can't remember if they know if I have kids or not. But they can get the info from my employer. I know.. applying for SSDI was HARD- emotionally. I hope I get "approved" so I don't have to go through the stupid appeal processes but like you said... once
  24. Jan, I should have known that was too easy My LTD was approved SO fast. I was thinking the same thing. Isn't the money received for dependents actually "their" money- like child support in a way. I don't see how they can factor that money into it. But, I've tried to read what I can understand of the legal-eze of my policy- and it does appear that they factor all of the money received, including money in the child's name- to determine the monthly amount. That just seems very unethical to me. I also read that I would have to re-pay all that money back. Nice!!!! Like I have a HUGE savings acc
  25. Well... I think I made some naughty comments and totally forgot not to make negative statements and use doctors or facilities by name.. So the moderator had to go to lots of trouble to edit my post (I really am sorry! My rambling gets me in trouble at times) and I Ted to forget easily: NO NAMES!!!! So, Naomi, that's probably what happened. Sorry about that. Jen
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