jenglynn

You have been in my thoughts and prayers all week, Rich. I am happy to hear you are feeling a "little" better but you are right- you are NOT out of the woods so be very careful and continue to rest and watch your symptoms. It is very easy to relapse.

Jen

THANK YOU, Issie! I think it was the initial sticker shock! I am sure that I will get ALL of this changed to in network with an appeal because I had everything sorted out before I was ever admitted. I just think it is silly that they denied it this way in the first place... I HAD my referral approved, my emergency admission was approved due to organ failure, and all of my outpatient testing was retro approved via referral because it wasn't available elsewhere once I was actually diagnosed. I have all the paperwork. I WORK in this department, for goodness sake, they should KNOW that I am going to figure this out. We have about 50 employees so it isn't like they don't realize this is MY bill or who I am when the process the claim? Not that I deserve "special treatment" over anyone else- but the typical let's deny and then let them appeal isn't going to work with me. I have the letters of approval. But, it is just one more thing that I am going to have to deal with when I don't feel well. It is frustrating... but I am 100% certain that I will get this reversed and I have met my out of pocket for the year so I think I am actually going to owe nothing. I think it is going to come to someone in OUR insurance department trying to work with Mayo to try to reduce the charges. They must be just SUPER expensive. I think the overall bill was $700,000 plus! Just crazy!!!!!

Thank you for your calming words. It really helped me calm down and think about it- and I realized WHY am I panicking? I just went and easily found the approval letters for the emergency admission and inpatient care after AND the outpatient testing and consults. Once I took a deep breath and thought about it- I realized I didn't need to stress about it. Thank you for pointing it out to me and probably saving me a huge adrenal surge!!!! HUGS to you for that!!! :

Jen

I just got my "final" (for now, because I'm sure I will be going to Mayo forever) out of pocket bill from Mayo today. Mayo is out of network but because I was admitted as an emergency, it was supposed to be covered in network ( the transports, ER and 14 day inpatient) and all the tests and consultations were supposed to be retro approved via a referral. Well, my insurance company (it's a small health plan- our local hospital has its own insurance plan- talk about irony???? I am an employee of the very health plan! I am a Patient Advocate for our plan.. Lol). Anyway, my final bill for EVERYTHING- out of my pocket owed is $315,900!!!!! WHAT????? What on earth did they DO to me????? This includes all outpatient tests, inpatient tests, transports to and from, room and board, doctors, tests, everything... But STILL! That is AFTER my insurance company which happens to be my employer paid their part? Over $300,000??? We have an HMO and no out of pocket limit for out of network- but it wasn't supposed to be out of network so I see an appeals in my future. Great. But let's say all my appeals get denied! How on earth would anyone pay that? Oh, by the way, remember, I'm disabled.. Wow. I'm trying not to freak out because I think it's just a typical insurance mistake- I work in the industry- and after this whole ordeal of trying to deal with them since I've been sick, I will NEVER be working for them again. They have gone out of their way to make this whole process harder for me to save a few dollars- because of uneducated nurses denying referrals and ended up costing themselves double what it should have.

That's my rant for the day- guess I owe Mayo a whole lot of money- hope they'll take payments- for the rest of my LIFE!!!!!

Jen

I agree, Corina. Once I was put on pretty strict bed rest unless I'm crawling back in Nov. and we are now into March and I'm still there- I was horrified! My life was so busy! What on earth would I do with my time??? I've been pretty amazed at much I do during the day. Usually the time flies and the kids are home from school before I know it. I am rarely ever bored- but I do get lonely at times so I love when I get visitors!!!

Jen

It is interesting- I've had so many friends and family members tell me in the last few months- that they KNEW I was sick off and on over the years and someday something major would happen. No one can say "why" for sure... Maybe I looked tired, or the weird illnesses I'd get because of my autoimmune disease, or intuition- but it's also a feeling I have always had. A doctor recently asked when was the last time I felt healthy- and I answered honestly- I can't EVER remember a day when I felt healthy or out of pain. Maybe there were some here and there, but I don't remember any. I just wonder how much my crazy, busy, do it all lifestyle led to what I'm dealing with now.

It certainly has changed my perspective though. I think of all the nights I'd stay up until 1am because the house wasn't perfect... You should see it NOW! Lol. Everyone is still alive (even me) and other than the stress and worry that goes along with Mommy having a major, debilitating at this point, illness- everyone seems a little less stressed because I'm not as tense and freaking out about a clean house. I really regret all of the energy and years I wasted on worrying about that when I could have spent more time nurturing relationships. That is the ONE thing about this wretched illness that I will always be grateful for- and often think- what if I NEVER got sick? Would I have lived that way forever? Now I know what REALLY matters and I also know I have to prioritize and I can never do "everything" again- even if I were to get a 100% cure tomorrow. In that way, I'm thankful for this illness for waking me up- but now that I'm "AWAKE" and realize the error of my ways- it can go away anytime

Jen

Thanks for mentioning this, Issie. I realized this a couple weeks ago and was going to post- but post concussion brain forgot. I actually came across one of my OWN posts...lol. I was googling polyclonal hypergammaglobulinemia which is the protein serum I tested positive for to indicate my autoimmune disease- and I must have posted something about it on here- because it came up- and if I google it again- this one will too I suppose.

Definitely something to think about, everything we say or do online really is forever, isn't it???

Jen

Corina- I didn't know there was such a thing as "quality" coloring books... I love to color too.. I don't know why it's so relaxing ( nostalgia, focusing, whatever it is) but I usually just use my kids' old cheap ones. I will have to look those up.

I also do the "cheating knitting" (as my friend who is an avid needle knitter) with the looms. I love those and have made some really pretty hats and scarves. I love to take pictures but can't do much of that anymore- but REALLY love editing so I have oodles of pictures from the past several years or that I steal from family on Facebook that I edit.

I'm surprised at how busy I keep myself. Oh and I am always listening to music or finding music on YouTube. I rarely have the TV on. I always have people feel sorry for me because of how bored I must be stuck in bed every day- but it is rare I am. I'm pretty busy.

Jen

Oh no worries- I won't panic I was just curious if any studies had been done.. It is interesting that it has occurred on both sides of my family. We also have a strong family history on one side of: dementia, autism/Aspergers, OCD (which I've wondered if I have myself) and ADHD- along with lots of syncope and blood pooling, and connective tissue diseases, and dyslexia (which I do have). All of these diagnosis are either with my grandparents, father, brother, his children or mine. And strong family history of thyroid disease on this side too- which would not seem to connect- but paternal grandfather had his thyroid removed (unsure of cause) my dad has hyperthyroid- out of control- but he does nothing about it and doesnt take care of himself in general- and my aunt (his sister) her thyroid removed because of Graves Disease that they could not get under control with treatment- and eventually was only left with this option. And paternal grandma and her father ( my great grandfather) both died of sudden aneurisms- immediately- one in their 50's the other in their 60's. That grandma was a fainter like me- started as a young child and was always fainting. My 13 year old started fainting at about age 11 and has fainted 4 or 5 times- in 2 years so not a lot- but enough in my mind to wonder. She also has hyptmobility and I was told when she was 12 months she had a connective tissue disease because she was very delayed in large motor skills- didn't sit up on her own until almost 18 months- walked after 2nd birthday- and the best way to describe her was "floppy". She was also born with a hole in her heart (that healed at age 6 on its own).

It's just interesting to look at family history and try to put things together. The genetic doctor I saw at Mayo about threw her hands up with me... She says the combination of things is just too many and without doing genetic testing it would be impossible to narrow things down..

Very interesting topic to me though... Thanks for posting the poll.

Jen

Lots of stuff going on in my family- especially Dad's side.. Nothing really seems to go together but yet some things do and some don't.

I'm so sorry for your situation. You really do need to find a doctor to listen, don't you? That is so important because then they will work with you on different treatments until you find something that helps. Unfortunately for me, I have no "normal" my symptoms change not only day to day but hour by hour My saving grace was I had a normal family doctor who listened to me AND believed me.. Shock, right? So between the two of us, we didn't give up. The first cardio she referred me to looked at my 30 day Holter which showed huge HR variances and shrugged his shoulders and said "SO?" I told him my GP dr wanted a tilt table but she couldn't order one to check for something being wrong. He shrugged his shoulders again and said "Fine.. " and wrote out RXs for a Stress Test and Tilt Table. Stress Test was horrible- collapsed on the treadmill after 3 min. so his report said I was just deconditioned which I actually was NOT before- was a runner! Then tilt table- BP dropped, HR went 60 beats- THEN he decided to give me adrenaline and I don't remember much after that except that I think I may have died and came back to life??? I really don't recall what happened but I did pass out and woke up on a hospital bed. His report of my TTT said "Inconclusive" and said I had tachycardia- inappropriate, but there was nothing he could suggest other than ablation. Thankfully I did some research and learned that wasn't a good idea for me My next appt. with him I brought up POTS from my own research and he laughed at me and said that I did not have POTS and he didn't really believe in it anyway. I asked him to explain my TTT and he handed me my Stress Test results and said I was deconditioned and needed more exercise. Ugh.. I get annoyed even NOW thinking about this arrogant doctor. So I left- went directly to my GP and waited until she had a moment to see me- we looked at the tests and both agreed the TTT looked way abnormal. Ust she had never dealt with POTS and had only heard of it when I sent her a link- so we learned together- so she called the cardio back and asked him to refer me to an electrophysiologist cardio- and amazingly he did- and THAT doctor ended up being my miracle #2. Looked at my TTT and in 2 seconds diagnosed me with OH and POTS but felt there was more going on so I eventually ended up at Mayo- and there's a lot more- but the point is- you need someone to listen.

It's frustrating, but are there any other cardiologists near you that you can see? Or see if you an find a patient liaison or advocate to help. Or if there is a Quality dept. in your hospital. No hospital or doctor likes complaints so they will usually help. And of course, I think we've all learned the hard way- we have to be our OWN advocate. If I would have listened to that first cardio- well who knows- where I am now is pretty bad so I don't know if I'd be worse or not but I would not have a diagnosis or known what I was dealing with.

Good luck!!!!!! We are here for you!!!!!

Jen

Chaos- I relate so strong to what you said!!! A year ago, I could not STAND to just lie in bed once I was awake. As soon as I woke up, I got up and gone on with the day. Even if I wasn't feeling fantastic or especially energetic (I think that I've had my autonomic neuropathy or autonomic issues my whole life) the thought of just lying around doing "nothing" was not acceptable for my Type A personality and I've learned now that I lived on adrenaline my whole life. Total adrenaline junkie. Once I felt tired, instead of giving in and resting like my body was trying to tell me do- I couldn't do that- there was always more to do- do that triggered the release of more- and the cycle continued. I was also convinced the world would fall off of its axis if I didn't do EVERY single thing myself- at home, work, volunteering, plus in grad school so I would never consider asking for help. I did all the cooking, cleaning, laundry- everything including cleaning and organizing my kids' rooms AND picking out their clothes for the next day the night before (I have six kids). I've learned since I first got sick, how controlling it was. I thought if I didn't do it, it wouldn't be done right (perfect) so it was actually a HUGE disservice to my children and husband. I first had signs of this flare last April but it was gradual- started with syncope, dizziness, more fatigue that I ignored- progressed a few months later to breathing problems- I was seeking medical answers but changed nothing at home and did not until I completely crashed- one day, all of a sudden after returning from a business trip in which I flew cross country (not my best idea) the next morning I got up to go to work and within 20 seconds I couldn't see and next thing I know my husband is picking me up and I had gashed my head open- requiring 15 staples- but hardly bled at all my BP was so low. That was in late Sept. and I have been unable to work or do much of anything since that day. I can't stand more than a minute without syncope but it's usually 30-45 seconds. Up until that point, the progression was so gradual so I don't know why all of a sudden it worsened- could have been flying which I did with no precautions or extra care- or my body finally gave in. But I've only gone downhill- so all I can say to others- listen to your body!!!!!

And now I have no choice but to ask for help and rely on my husband and kids to take care of the house. I have had to let go of my controlling ways (OH, it's been so hard) and realize if they are doing it and I'm not, as long as they are trying their best, it's good enough and shut my mouth. Luckily, my kids are not little- we have ages: 9 year old, (2) 11 year olds, (2) 13 year olds and a 15 year. old. We don't have 2 sets of twins, we are a blended family but have 4 of them full time and 50/50 of the other 2 but they are at our house every day after school until about 6pm. Moral of the story- listen to your body and delegate when you need to rest!!

Jen

I did not realize there was a connection? Are there studies that say that people with autonomic neuropathy (or other ANS disease) have a higher than average chance of developing Parkinson's. I have a grandparent on both sides of my family who passed from Parkinson's. I try not to obsess about it, but lately I've developed more tremors and twitches so I admit the thought has crossed my mind but when I brought it up at Mayo I was told that my risk was slightly elevated due to family history but my autonomic issues were not included in that risk factor.

I guess I try really hard NOT to worry unless I have good reason to so I'm just wondering if there is more research I'm not aware of and preventive measures, if any, to follow.

Jen

I am convinced that I have had POTS, autonomic neuorpathy, whatever you want to call it my whole life- and it has come and gone. But I have never had a severe flare until almost a year ago, that I am still battling. Since I was a child, I was prone to syncope. Always told, "Well.. you stood up too fast" or "Some people just faint." Out of the blue, last April, I had a syncopal spell at work. From there, it just started progressing. I was dizzy a lot, pre syncope often, and fainting off and on. In June, I started getting the shortness of breath and breathing issues. I have NEVER had those in my life and they were the scariest WORST symptom of all, and I still think that (well, the adrenal surges/anxiety aren't a lot of fun either)... But that is when I got serious about investigating what on earth was going on. First I got diagnosed with anxiety, then asthma, then who knows... but when I was up walking around (which I am no longer able to do- but I still get this to a degree when I crawl) my shortness of breath was HORRIBLE. I could climb a flight of stairs without feeling like I was going to pass out from the exertion. It took a while, but we finally figured it out. Of course, I AM NOT A DOCTOR, but I think you can most definitely have shortness of breath, breathing issues, chest pain with this condition. I think it is listed on the symptoms on the DINET page. Maybe print all of that out for your next appt!

I am sorry you were dismissed like that. If your POTS isn't causing you to have breathing problems or be short of breath, is your doctor at all interested in finding out WHY? Seems a little irresponsible for you to report such symptoms and he would dismiss them and not follow up? I am so sorry you are dealing with this. After living a life free of breathing problems or allergies, asthma or anything of the like- it definitely opened my eyes to what people stricken with those conditions go through. Trying to breathe when you can't, or feeling like you can't get enough air in your lungs, is such a scary feeling. My son has asthma and I had a totally new sympathy for him and hugged him so hard after his next asthma attack because I knew how awful it felt and I was broken hearted that he had to suffer that way.

Jen

Well, anyone who replied to this post and struggles with anxiety or any type of "surge/panic attack" whatever we call it, I am so sorry. I really hope the day comes when we won't have to anymore. As if it isn't bad enough to be stricken with all of the other physical symptoms (most of which don't seem to fit together at ALL- NO wonder it is so hard to diagnosis... and I agree Julie, before I had this condition I guess I would be skeptical as well... but I doubt I would EVER tell someone they had a phobia of standing when they were presenting me with records that proved orthostatic issues.. but who knows... I am actually in grad school for Marriage and Family Therapy so I can somewhat speak to that to a degree). And Puppylove... to be told you are an "anxious person"- that just annoys me. Did they KNOW you before this illness? I don't know how many doctors I have told.. "Ummm.. yeah... when I am fainting every time I stand up, can't catch my breath and my heart is beating at 180 bpm just because I tried to stand up... yeah I tend to get a little anxious. Why don't YOU TRY it and tell me how YOU feel?????" UGH

Julie, I am just so sorry that you were treated that way. I don't blame you for crying. I am sure it was mostly out of frustration and anger. Unfortunately, I can no longer count on TWO hands how many times I have broke down in tears in front of a doctor out of frustration, pain, and discouragement. My husband and I actually had made an appt. with a marriage counselor about a month ago to try to deal with some of the issues we are finding with dealing with my illness, on both of our parts. We have seen her before and she knows us well and understands our kind of complicated history (blended family- 6 kids total). And she hasn't seen us in several months and I had deteriorated quite a bit since and she just kept going back to WHAT was wrong with me.. while we were more interested in focusing on how this illness (or any) is causing issues. So after I explained it to her, she basically said that it sounded psychosomatic... and I assured her... No.. this is a real physiological disease... in fact I have three. And my husband told her that even the doctors at Mayo are confused about how to treat me and they put in her chart that she is a "Medical Enigma" which is something that we laugh about... how many people get labled by Mayo as that??? And she actually said... "Yes, that's what I mean. Maybe they think you are making it up and this is all in your head!" I have never been so insulted in my life. I wanted to just put her in her place, but all I could do initially was break into tears.... and luckily my husband came to my rescue and told her that I have been through enough that I didn't need someone who has no idea what she is talking about to make assumptions and accusations and she owed me an apology. And he grabbed my phone and I have an app on there that accesses my medical record- like appointments, test results, and diagnosis... and he pulled it up and showed it to her and to read my list of diagnosis listed- like autonomic neuropathy, immune mediated, autoimmune disease, connective tissue disorder, and the list goes on and on- and I do have depression and anxiety listed but both say "medically induced depressed and medically induced anxiety." And we left her office... but I was so insulted and upset. WHY do providers have to be like that? So Julie, as awful as that was, it don't think it compares to be told that I have "Standing Phobia". I guarantee you that I probably do have one if there is such a thing by now.. after so much syncope and concussions...and I still do have the same thing happen every time I stand, so I guess I probably do have standing phobia lol... but I just can't believe that she thought that would be a helpful statement. Ugh. I know there are wonderful, understanding doctors- I even have some of my own- but the ones that aren't sure leave an impression, don't they?

Jen

Oh WOW... I have been dealing with this for the last YEAR and never thought about it having anything to do with POTS or ANS.. but that happens to me most days. I used to ALWAYS be up at 5am for years... I would wake up before my alarm and while I wouldn't say I was always thrilled to be getting up to go to work so early, I never had a problem waking up or getting out of bed and getting ready and by the time I was out of bed I was always wide awake.

Lately, different story completely. It takes me quite some time to wake up. Your description of feeling so sedated and like I am coming out of a coma is exactly how I feel. I actually wake up in my brain before I can even open my eyes or move my body... I almost feel like I am in a coma. Then gradually... I will wake up a little more.. but I am moving slowly and feel like I am recovering from a terrible illness or hangover. It takes about an hour to feel somewhat better. It is just awful. I do not sleep very late either and I don't take sleeping pills at night.

I have an appt. with a sleep doctor on Monday. I am really hoping she can help me because I know I am not getting enough asleep because I have a LOT of problems with adrenal surges at night and it is rare that I am asleep for 2 or 3 am... and I am usually up by 7 or 8 am.. and even though I am ALWAYS tired I have never been a napper in my life and just can't fall asleep during the day. This sleep doctor is also a neurologist so I am hoping that she will be able to help me. By the way, I am sorry that both of you have to live like this too.

Jen

Julie... Did you REALLY just say that you had a psychiatrist tell you that you have a phobia of STANDING??? Did you really have someone say that to you???? You have got to tell me... How did you react??? What do you even say? That has got to be the most ridiculous thing I've ever heard. Is there even such a phobia? I am so sorry that had to waste your time and money and be insulted like that!!!

I get a LOT of anxiety and panic symptoms but I know they are related to my autonomic nervous system. I'm not at all implying there is anything wrong with having an anxiety or panic disorder alone- they are REAL conditions not taken nearly seriously enough by the medical community in my opinion. I never suffered from anxiety or panic attacks (I too also NEVER use that phrase with doctors- I always say adrenal surges and then I have to explain how they feel- which I have a patent answer that I always say) except sporadically through my life. But it is a miserable way to live and it bothers at how easily it gets dismissed. Why is severe anxiety or depression ( or any mental health disorder) any less important than any other medical condition? It can be just as debilitating and life threatening as any other. While I truly believe mine does originate with my ANS issues which I've had my whole life- I would have to say that that feeling of anxiety, the surges running through my body, the constant state of fight or fight is one of, if not the most, disabling of my symptoms.

Jen

Thank you!!! Today is a new day and I do feel better. I try to never take life for granted because we've all lost people too soon and we at least have our families, hope, whatever our spirituality may be.

I guess one of my issues is I'm dealing with Mayo. They had decided to do some kind of case study on me so I know they aren't "giving up" but because of my IVIG failure/rejection now they are trying to figure out what to try next. I hate to say this but it's almost as if the results of their study are more of a factor than my getting better. I hate to think that way, but I was supposed to have my follow up this month after they could safely assume the negative affects of the IVIG was out of my system. I was told this week that my labs still show some abnormal functions in my kidneys and now we should until the end of April. Why not try to figure out why my kidneys aren't getting better NOW.. That makes more sense and why don't you see me THIS month, as planned, to at least give me some ideas of where I'm going treatment wise. My neuro at Mayo- the main one I see who works directly with Dr. Low on my case (how can I complain, right???) is very nice, but dismissive. He is busy- I get that- he's a researcher and sees patients.

At the hospital in my home town, there is only one neuro who will see me. No one else would even TALK to me because of liability. I like the doctor I see but he sees me ONLY on the condition that we work with Mayo and he isn't primarily responsible for making treatment options. It is frustrating. Only my general doctor and EP Cardiologist both who have formed close attachments to me during this diagnosis process- so I get a lot of help from them- trying new meds , etc.. But my general doctor just had a baby so she's out of the picture for 5 more weeks. I guess I just feel, like I said, frustrated- I understand I have chronic, complicated illnesses- but I e got to think there an answer that doesn't involve being bedridden or crawling around on my knees forever. I don't expect to feel perfect, I would take somewhat functional.

I've been wondering if I should explore other specialists... Cleveland, Vandy. I guess I don't know what to do. I know I'm lucky to have gotten this attention at Mayo and I should not just hastily say goodbye. But when I got that call yesterday delaying my follow up for another month, I was peeved. Maybe I just need to make an appt. for a phone consult with my neuro at Mayo and ask him questions. That is probably the best way to go at this point.

Thank you all. Your support means so much more than you know. I have a supportive family but no one understands like you guys, because as much as I dislike this fact, you are going through this too. We're in it together.

Jen

Most days, I try to keep a positive and upbeat attitude,especially for my family. I try to devote only a certain amount of time daily to research or the forum (although so often you guys cheer me up!!) I realize that if I spend too much time thinking about it, then I will start to obsess and then self pity follows. I try to read happy, funny, or inspirational material. Watch funny movies. Listen to music I love. Spend time with my family. Not sure what has gone wrong today- but all I can think of is what I "can't" do.. Which is not productive, I know.

I am so tired of living my life like this. It's been almost a year since my first "symptom" of this flare- in April- and it just kept progressing to where I am now. Bedridden unless I crawl. I've tried so many medications and some to a degree have "helped" I guess, like Midodrine, but not enough to significantly improve anything. In Nov. when I was admitted to the hospital for the first time, I could stand for about 30-60 seconds before syncope- yet here I still at the same place, after being in the hospital from Thanksgiving to Bew Years! Tachy is still the same. I have had 9+ concussions and diagnosed with cognitive dysfunction and I can't be upright at all unless there is someone right there. I walk every day, around the house with my husband, but I don't get far I know I will get worse if I'm never vertical so 4x a day, right by my bed, Rob stands next to me while I go from lying to sitting to standing. In all these months- nothing has changed. My HR has never lowered and BP has never stabilized and I'm still unconscious at about 45 seconds. When is this going to change??? I rejected IVIG so my big hopes of that working are gone. I keep losing weight, along with cognitive skills, and my organs have been suffering (bladder, kidneys, thyroid, liver,) I m 38 yet feel like 90- developing incontinence. That for some reason has been the hardest to take. Like most of you I suffer daily from miserable adrenal surges that are so anxiety producing I know I make myself worse just anticipating them. Now I've started getting twitches and spasms. My head hurts ALL the time. My body hurts ALL the time, and worst of all I feel my spirit starting to hurt because I feel as if I am just wasting away.

I know this pity party will do me NO good and you all are going through this or worse, but I keep wondering praying... "WHEN will I get my life back???" I feel like I'm on the sidelines of everything and I'm letting my kids down because I'm not an active participant anymore. My ability to sit has even decreased. I can sit upright maybe 20 min. Before BP plummets and HR will be 160+. I do my recumbent bike everyday, I faithfully do my bed exercises twice a day- 30 min each time. I guess because I'm waiting for progress, not seeing any is discouraging. I'm so weary of doctors and hospitals and having to repeat my story and explain my condition. Yes, I have auto immune mediated autonomic neuropathy, connective tissue disorder (likely EDS but testing not done) and an autoimmune disorder that is very aggressive but no clue what it is other than MEAN the way it is constantly attacking my organs... Even at Mayo- they call me a medical enigma- they say they have never treated anyone who's body has reacted to autonomic/autoimmune issues this way.

Ugh. Sorry- didn't want to be a downer but today just happened to be a hard day. There is a lot going on and this is our annual family trip to Minneapolis for the State High School Hocket tournament. We go every year as a family and look so forward to it (our 2 boys play hockey and 4 girls love Mall of America and for the first time in ages- I'm not going- but I'm insisting they all do. Life needs to go on and they've made enough sacrifices- but missing it is just another sign of what is lost. If I even had a glimmer of hope- I would grab on with both hands, but when I talked to my Mayo neuro he is still not sure what to try. He doesn't think any immune therapy will work because my autoimmune antibodies are so aggressive. Most days I'm able to banish these "Poor Me" thoughts because they will do nothing to help and I'm sure 20 minutes from now I will be my old self again- guess I just needed to vent a little. So grateful to have a place to do so to others who understand what I'm going through. And if anyone has suggestions of therapies or treatments that worked for them, I'd love to hear them. And to leave this on a more positive note, if I were to literally sit down to count my blessings, it would take all day. I have a lot of love and support which with this condition, is priceless. Thanks for reading, you all are priceless too and I'm so proud of the way all of you courageously battle this illness every day and never give up.

I really hope that someday we can cure this- or at least find a way to manage it successfully. In the meantime, I will be grateful for everyday I'm alive and realize that I am more fortunate and blessed than so many others and should not complain.

Jen

Thank you all for your advice. I have decided that with all the problems that catheters could cause I'm not going in that direction. Especially with my aggressive autoimmune issues. I almost always have some kind of bladder or UTI infection whenever I'm tested- I'm pretty certain daily catherizatiom and taking the chance of introducing more bacteria would only cause more issues. Like I said, even the doctor sad he wasn't sure what he would do... And admitted that there was a high risk of infection to go that route.

So, I guess I will just do more research and many of you brought up good options to explore. I think my issues with my bladder are really hard for me to handle psycholgically. And I always hear, "don't feel that way, it's not your fault, you can't control it" and of course I KNOW that... It still seems like one more thing "taken away" from me because of these poorly understood conditions. Mostly, I do have to wear Depends but I don't WANT to. I just want to get fixed, like the rest if us. I'm in a mood, sorry I really do appreciate the feedback!!!

Jem

Oh this has been awful for me. I use the wrong words, or it takes me forever to come up with the word. Writing is always a struggle lately, frustrating because it has always been a strong skill that came easily for me. Focusing and concentration a mess, retention- both verbal and written is seriously reduced, and short term memory very poor. I had some initial testing just last week, actually, and compared to a cognitive test done 3 years ago there was dysfunction. I go back on Friday for THREE hours of testing. I am pretty sure by hour 2 I will be babbling.

My doctors are attributing all of this to my concussions- I've had at least nine in a short period and have been told the importance of not getting another. But I never thought about the cognitive issues that go along with our original diagnosis. It's like a double whammy. The only good news is the neuro-psychiatrist said I have "dysfunction"- less function than 3 years ago- but no signs of "impairment" so I'm still what they consider "normal" whatever that is. But I dont like the fact that I have any dysfunction. I guess these latest tests on Friday will be very telling, according to the doctor.

Jen

And Julie- Bless your heart having to manage this with twin babies who have now grown into toddlers. I hope you have a lot of support. One of my biggest sources of guilt about this illness, as debilitating as it has become for me, is how it has affected me as a Mom. We have 6 kids- oldest is 15 and youngest is 8. They are all pretty self sufficient but I am not "there" in the way I always was before. I feel I've had these conditions my whole life- but being the type of person I was- I had to be Super Mom as well as Super everything else. I survived on adrenaline and always pushed myself to the limit. Major perfectionist and I can look back now and say Super Controlling. Well, these conditions can change those traits in a hurry when I can't be vertical for more than 30 seconds before I'm unconscious. I know how stressful it has been for my kids and family and it breaks my heart what they have gone through ( my 11 year old son found me unconscious after a syncope spell in my bathroom who knows how long after because it knocked me out- but I had split the back of my skull open with the impact of the fall and the first thing I remember is barely opening my eyes- my head in his lap- his whole shirt, arms, ect. Covered in my blood. Our 13 yr old was down there too and I heard Josh (11) tell Austin (13) to keep applying pressure to the big wound and he was going to lift me up- because he thought if I was a little more upright it would lower my blood pressure enough to stop the bleeding because he knows what happens as I get more upright. And my blood loss was significant by this time but it worked and he was careful not to lift me TOO high to make me unconscious again. Bleeding had stopped by the time the paramedics arrived). I just keep thinking about how scared they must have been and how they will probably never forget that day. It breaks my heart.

I'm sure we all go some feeling of guilt or feeling like a burden- it has been really hard for me because I'm the type who could do it all and never ask for help. Well, that person is gone and I've had to learn to let goof my controlling, bossy nature because if I'm not doing it- I'm not going to get willing helpers if I criticize. But it hasn't been easy. I bet in someways, though, I'm closer to my kids than ever- that would be my silver lining I guess. I can't do as much FOR them.., but I can be there and talk all the time.

Jen

I am a little "trembly" when I wake up in the morning... But some of your episodes sound much worse I'm so sorry! Not the way you want to start the day, is it??? But my husband tells me I have several periods of trembling,shaking, twitching- often violently so during the night, but it's never woken me up- although it is enough where it wakes HIM up several times. I've been wondering what this is and if something I need to be concerned about or just add to the list of unexplained symptoms. I have autoimmune mediated autonomic neuropathy and a quite aggressive Autoimune Disorder. I am very orthostatic hypotensive with what I would call moderate to severe (usually, especially lately trending toward severe) tachycardia. If anyone has an explanation for my episodes, I'd love to hear it!

Thanks,

Jen

Hi Everyone!!

It has been about 2 weeks I think since I submitted my final paperwork. So now I am in the wait and see phase. Is there any general time frame to expect with the first submittal before we get a decision? Does it vary by state? I live in Wisconsin, by the way.

I have heard so many horror stories and while I find it hard to believe they would deny me, I have had several people that I know say they deny almost anyone and everyone on the first try. I'm 38, which I don't exactly consider "young" I guess in the world of SSDI it kind of is- which can go against you. I have a lot of serious medical diagnosis' but my doctors have also recently added "depression and anxiety". That worried me a little- thinking that I'd have to go through that whole battle again- the same one I went through trying to get diagnosed. I was approved right away- within a week from my Long Term Disability plan through my employer and they provide free legal counsel should I need it (it obviously saves them money if SSDI is helping them to pay) but it is the thought of having to go through this long process and added stress, appointments, doctors questioning me- it's exhausting to even contemplate. Managing my illnesses and just trying to get through each day is enough for me.

On a positive note, I did get approved for a program called Wisconsin Cares. They have a team (social worker, RN, and a personal advocate of my choosing) come evaluate me to determine what kind of care I need and they also provide an RN to manage my medical services, making appointments, getting specialists or tests approved based on what I ask for. They provide a monthly budget for therapies in the home, nursing, IV fluids, housecleaning, grocery shopping, etc. I can either let the program arrange everything or I can "hire" who I want to assist me, friends or family if I choose. This is a relief because I feel like all of this has gotten to be so much for my loving hubby- plus we have 6 kids to worry about as well and it seems our whole life revolves around this illness. I am pretty debilitated at this point so this program is really a need- pretty much bed-ridden and/or crawling short distances, or a wheelchair. I certainly hope I won't need it long. I realize someone (tax payers) are having to pay for this and I hope it doesn't cause any controversy... But I am very grateful that our family will be getting some help.

Thanks everyone!

Jen

Bananas-

Just the THOUGHT of doing the catheters gives me anxiety. Ugh. I do use Depends and while I don't like it, it certainly makes life easier. I keep thinking there HAS to be a better way- but the combination of autonomic, autoimmune and connective tissue issues seem to be a disastrous combo for the bladder. I'm just not sure what the right answer or solution is. It almost seems as if the retention (although not comfy and can even get painful) and occasional incontinence with "frequent" infections would be better than using a catheter 4x a day and ensuring infections. Urologist even said I would most likely always have an infection using daily catheters because I'm so prone.. Especially with my extremely aggressive autoimmune issues and no fevers.,,

Sorry you've struggled your whole life too. Sounds like we were about the same age. It's just NO fun.

Jen

Thanks Bren!!!! I knew we were right!!! Sometimes just TOO logical to NOT be factual.

Thank you for replying- I've been told I look anorexic but I'm only 5'3 so I don't think I'm critically underweight...but there is improvement yet and I need a few more pounds to look even somewhat healthy. And I LOVE the doctor that put "anorexia" on my check out diagnosis summary- which before looking at it- handed it too my husband. I thought he would have heart failure!!!! "Honey, I promise- that's a medical term for loss of appetite- doesn't mean he thinks I am anorexic which is anorexia nervosa... TWO different things!!!" Thank goodness I had my iPhone handy to quickly reassure him... Sigh.

Jen

I just submitted my initial claim 2 weeks ago- so now I wait. I didn't have a choice about applying, whether I wanted to or not. I was approved for Long Term Disability through my employer- and their criteria stated to continue getting benefits I had to apply for SSDI.

The positive thing is because my LTD won't "double pay me" they just pay the difference between Social Security benefits and my LTD payment, if there is a difference, is that they have lawyers who take over with no cost to me if I'm turned down.

With the debilitated state I'm in, I would be pretty shocked to get denied, but who knows? I just hope the whole process resolves itself soon. It is stressful just to go through the application process!

I'm glad your review went well. Now you won't have to worry about it for a long time

Jen