New Member - Hello And Looking For Assistance

[snakeshoes]

Hello everyone,

I'm new to posting here, but I've been lurking for the better part of a year. My wife has been on a time or two. Her user name here is Shoe. We're in our thirties, we've been married for 13 years (no kids but a couple of dogs) and she's been suffering with various symptoms for the past 6 years. It was only this year (since Christmas) that things got massively bad symptom-wise, but we've also gotten closer to dealing with it. The doctors have diagnosed what's going on as some form of autonomic dysregulation but haven't specified as to a particular type, a root cause, or even a particular mechanism yet. In the meantime, we deal with the pain, fatigue, mental fog, high pulse rate, sweating, needing to drink massive amounts of Gatoraid, headaches, vertigo, and anything else that crops up. I take her to all her doctor appointments as she cannot drive and it helps to have me there to confirm symptoms or remember things for her.

With introductions over, here are my questions:

1. Are there any other spouses on here? It's been great to read some of the threads here and realize that she's not the only person in the world with these symptoms and that the picture does actually fit together, but I'm also looking to find others in the boat with me. I've visited over at wellspouse.org but that seems to mostly be spouses dealing with terminally ill people and a lot of end-of-life stuff that's a little too bitter and depressed for my tastes. I'm hoping to find others to share advice/support on dealing with the ways that having a wife with an invisible chronic illness throws all the rest of both people's lives into a blender of stress and frustration.

2. Anyone out there have some good advice on dealing with the medical establishment? WE've finally got doctors that are willing to work with us, but the administration is a pain in the butt. My wife's doctor wants to admit her to the hospital to take her off all the medicines she's been prescribed over the years to manage symptoms to get a clear picture of how bad all the symptoms are and to run tests that won't be thrown off by medications. The problem is that the only code that fits for that on the insurance forms seems to be "medication detox" so the insurance and the hospital keep trying to send her to a drug treatment center instead! She's not addicted to anything and doesn't need to go to AA groups, she needs to be in a hospital with medical support in case of adverse reactions and where testing can be done rather rapidly. The worst part is that she's not well enough to put up with the stress and fatigue of fighting them and they refuse to talk to me because I'm not the patient and thus they can't discuss anything with me due to medical privacy issues. We're waiting on a healthcare proxy form to filed so that they have permission from her to talk to me.

So, an introduction and two topic questions all in one. Anyone have any advice, suggestions, horror stories to share, etc.?

Thanks.

[firewatcher]

Welcome to the forums! The most amazing thing about this internet spot is the positive and supportive energy here! It is very thoughtful and caring for you to be here to support your wife.

Good luck with the proxy, privacy forms are the bane of medical discourse!

[potsgirl]

Welcome to the Forum,

Dealing with the medical establishment, you'll find out from the posts here, is a difficult situation for many of us. I would love to be in a controlled environment while I got off some of my meds - I hope that comes through for your wife. My boyfriend, who has been terrifically supportive over these last 3 years, will be posting soon, and he's eager to 'talk with' others who have a loved one who has this disease. Especially other guys. So hang in there, there are mothers and husbands and others who are on the Forum with loved ones suffering from dysautonomia. You're not alone, and in good company!

Cheers,

Jana

[mjan]

A WARM hello and WELCOME to you and your wife ~!

I am soo amazed at not only how you show you care..take an interest in this disease (as you know its quite complex)..

BUT.. that you would join a forum for her is so wonderful to me!!

Of course YOU need the help and support as well. So remember..that WE care and will support YOU too!!

AS far as your questions.. I do not know who are the spouses and partners on this forum..but I bet they will come through for you.

The medical system..gosh so COMPLEX it would make you crazy. I hope your doc figures out a diagnostic code to get your wife into the hospital. What an excellent idea.

If anyone is interested...note that I am NOT promoting any products or false claims..just what worked for me and several other folks I know and care about..approved by my doctors..to compliment your medical care consider this:

I do know there are specialized certified nutritionists especially trained and equipped to evaluate your entire system..including every area of your brain..painlessly. Its done in an office setting..partly computerized. ( by those you can afford the program). They read your body systems through our electrical energy and tell you what area is affected..how to build up your system..detox safely if necessary..how to manage and maintain your disease/disorders.

It worked for me when I had severe Autonomic problems..brain fog..severe weakness..memory and balance issues. ALL improved to this day that got me back working. Its NOT a cure.. but man a major improvement so I can continue to work and function. My neurologists were just so amazed that even they would send me back to him.

What I really like is that you only use each nutritional product at a dose exactly for YOU.. ONLY for the time your body says you need it. For example.. if you need to enrich and decrease inflammation or toxic areas of your brain you dont continue to take the products forever..like with so many meds. He can even help with side effects of meds..he does NOT REPLACE YOUR MEDS at all..nor diagnose. BUT..Its a WHOLE new way of thinking.. so being open-minded..and deserate enough like I was helps.

I know.. I am an example that you CAN improve and feel better.

Take care...HUGS to you and yours..

Jan

[janiedelite]

Hi,

Thank you for posting! Having watched my mom go through extended illness for the last couple decades, I believe it is often harder on our loved ones. The helplessness my dad has felt has been overwhelming. He's always been so jovial, but has struggled with wanting to live and feeling like a failure as he's watched my mom suffer. Not saying that I detected that level of depression in your post! My husband has been so supportive over the last few years as I've struggled with dysautonomia. I asked my hubby for his input and he said to support her when she needs help, enjoy the good days and make every moment count.

Has your wife been assigned a case manager by your health plan? They are available to any patient who can't advocate for themselves or who needs help navigating the system. They are usually nurses. My mom's case manager doesn't know much about my mom's disease (carcinoid syndrome), so my mom had to educate her. But she was willing to learn and has helped when my mom needed approval for needed treatments. I also have a case manager just because I feel so much worse when I talk and I have to call the insurance reps often.

Has the doctor who wants to admit your wife talked personally with the chief physician at the review board of your health plan? Often, it's the case that the review board just can't get a clear picture of why the treatment is needed based on treatment codes, and the fact that so little is known about her diagnosis. With my health plan the steps once you're denied are: file a letter in rebuttal with attached dr's records and test results for proof, and if they still deny you then your physician (not you!) has the right to speak with the reviewing doctors themselves.

I'm certainly not the expert on this, but this has been my experience as I've navigated healthcare for myself and my mom.

Good luck and thanks for posting on Shoe's behalf!

[Maxine]

Hello shankeshoes,

I really respect the fact that you support your wife, and advocate for her. My husband would love to have someone to relate with on having a spouse with chronic illness. I know there's times he gets pretty stressed, but doesn't really have anyone to talk with regarding this illness. We used to have a local support group, and my husband was very supportive of that. We have have our own horror stories also. It's so shocking what having a chronic invisible illness will do to us, and how cruel people can be who don't understand--------------------that means medical professionals too. We've had very bad experiences, and we have have some good expereinces too.

If you would like to e-mail my husband, please feel free to PM me for his e-mail address. We hare a bit older----I just turned 50 in May, and my husband will be 46 in Dec. We have been down this road for almost 10 years, and as you can see by my signature line, it's been a busy 10 years.

Maxine :0)

[snakeshoes]

Thanks everyone for the warm welcomes. I've found this forum to be very useful in educating my wife's doctor and finding new things to consider as well as just generally knowing that we aren't the only people in the world dealing with these symptoms.

I'm calling the HMO today to talk with the case manager and we have another doctor visit tonight, so wish us luck.