Follow-up Question For The Newsletter Artlicle....

[juliegee]

Thank you so much for all of your responses- Please keep them coming. I'm so humbled by your willingness to share the story of how you were DXed. My hope is that by compiling your experiences, we can provide a roadmap for others who are struggling with this.

My follow-up question to those of you who saw 10, 20, 30, 40 or more doctors before you found a DX & began to get help. HOW did you persevere? What gave you the courage to keep seeking answers? Many become demoralized after even one doctor pooh-poohs their concerns or chalks up symptoms to anxiety, etc. What made you different?

Thanks in advance for your continued help. I'm really saddened by so many of your stories. It breaks my heart to see how so many of you suffered. It makes me all the more interested to know HOW you kept pushing despite the tremendous odds against you. I am in awe of your resilience and strength.

Julie

[daisy]

I guess it was my family that gave me the strength to persevere - that and the fact that I am extremely stubborn. I didn't have a choice. I couldn't just roll over and let the illness take me over. We all knew something was terribly wrong with mom and I knew I needed answers in order to be the best mom and wife I could be (no matter what that meant). I never dealt very well with limitations and I am very hard headed so I just kept pushing. I was very fortunate to have a primary Dr. who was as determined as I was to get to the bottom of what was going on. I saw I believe four different Drs. before I was sent to my current EP cardio who is wonderful. I am blessed to have good insurance so I could keep going until I found the right Dr. I know many don't have that option. I just couldn't settle for the "anxiety" angle or that I was just under too much stress. My kids forced me to get out of bed each day (and still do) and keep trying to find answers.

To this day, they are what keep me going. If I didn't have them to get up for each day, I'm not sure that some days I would even bother.

Thanks for doing this article....sounds great!

[Janey]

I had very little support from my family, partner and most of my friends when I first became ill. When I was too ill to work they said I should stop being lazy and a hypochondriac and that made me feel very isolated and borderline suicidal. There's nothing worse than feeling there is something deeply wrong with you and no-one believing you. The things that kept me going were forums like this where there were people who were experiencing the same sort of distress and some who had found answers - and those with answers really encouraged me to keep going. I also made a few friends who had chronic conditions (not dysautonomia or POTS )and they understood the mindset that goes with being ill every single day, and would be fine if I had to cancel on meeting them two minutes before we were supposed to meet because I didn't feel well. What also kept me going was some sort of spiritualism. I eventually managed to see my illness in the perspective of something to draw strength from and learn from, or something that was teaching me how to suffer (Buddhism.)

Janey

[firewatcher]

At the very beginning, when my original doc said it was because I was "seeking attention" and all in my head, I was seeing a sleep specialist with a prior degree in psychology. He was convinced that it was physical and not psychological and told me so. Once I saw the psychiatrist that my original doc referred me to, the psych said: " I am not messing with your brain chemistry by putting you on ANY medication until you get this physical thing figured out! There is no way you can consciously or subconsciously make your BP do this!" Then the endocrinologist did a poor man's tilt table on me (I greyed out immediately and heard the nurse say "wow! that was a big jump!" It took me a second or two to realize what a firm grip he had on me to keep me upright.) Once the doc got the results from his nurse, he asked me to wait till he could clear his other patients that he wanted to talk to me. After sitting there an hour, he took me to his office and said "There is something physically wrong with you. This is NOT in your head and we are going to find out what it is." He spent a great deal of time with me and explained that he thought it was mitral valve prolapse and that he wanted to check for endocrine diseases just in case.

At first my husband was not supportive, but he never thought it was "in my head." My family has always been very supportive and knew that I was not feeling or acting "normal." I also have great friends that I talked to daily. Then I found this forum and I lurked and saw that I was not alone. Once I got my DX, I joined and this has been the best support that I have found!

[delphicdragon]

I think what helped me the most was being very stubborn. Also, I wasn't willing to accept a psych diagnosis. Any doctor who told me this was all in my head got the boot. I had a doctor tell me after HE diagnosed with asthma, that it must be psychosomatic because I couldn't handle albuterol due to the tachycardia it caused. To him, my inability to take that medication meant that the methacholine challenge test I had taken and failed spectacularly didn't matter. I refused to believe it was ALL in my head.

Being a "member" of the medical profession helps too. I'm a biochemist and can speak "doctor." That helps a lot because most doctors felt that I wouldn't decide I had a rare disorder unless there was scientific proof behind it.

The biggest problems came when I was younger because it was easy to push off a thin, anxiety prone girl as having psych problems. I did see my share of psychologists - all who got no where with me. A lot of my life was spent living with the symptoms and the symptoms have stolen from me a lot of things, but I keep going. What other choice do I have?

Sara

[dsdmom]

Good question - looking back, I really don't know! My family (immediate and in-laws) and friends certainly were not the driving factor. I think they all thought that after the ordeal I had been through I should have been 'fine' and that I was just making a big deal out of nothing. I guess I just wanted answers because I knew I was not right. I'd have to echo what someone else on here said - my psychiatrist was really the one person who truly believed that I had something physical going on. Maybe just having that one person believe you makes a difference...

And when I did finally get to the right specialist, I dragged my husband because I wanted him to hear the diagnosis - that I WAS right. (People, him included, were sick of my 'research' online). I wanted to yell it to the world that I was right, I was right, I was right. And by that time, nobody really cared...

[toddm1960]

Great follow up........I had been an athlete all of my life. Went to college on a baseball scholarship, and was hooked on lifting weights and lived a totaly healthy life style. I became a personal trainer as well as working a full time job, I was very in tuned with my body. When this hit I knew it wasn't in my head. Just because a doctor couldn't find it didn't mean it wasn't real. I guess I never second guessed myself. I still dream of the day when I can workout and feel that wonderful burn of lifting or running..........someday.

[sandymbme]

My parents played a huge role. As they are both medical health professionals (nurse and pharmacist) they knew that something was really wrong with me and encouraged me to keep looking for answers. My (now ex!) in-laws gave me a terrible time of it, insisting I was exaggerating, meanwhile my parents were worried sick. In my heart I just knew something was wrong with me, and that I just could not give up.

[MomtoGiuliana]

It was simply that I had to. I was getting sicker and sicker as weeks passed. I had a newborn baby that I couldn't care for without help.

I believe I saw only 5 doctors before I was diagnosed.

[Dawg Tired]

I'm an old nurse - I was working with a lot of other old nurses.... My boss DID NOT ACCEPT that it was in my head.

I, myself ran into brick walls - my doctor even refused to refer me to a specialist because he was adamant it was in my head - but when I was too exhausted to go on, and Hubby was at a loss, it was my supervisor and the other nurses I worked with who help me upright and found the way to carry me through.

Also - and most importantly - I knew Hubby was there beside me all the way. On days when he had to spoon soup into my mouth, or help me get to the bathroom, he never faltered.

[Angelika_23]

Three things got me through the terrible times of 180+ constant heart rates and really rough times.

1)My friend, Deana, who is a nurse and who would (and still does) take the time out of her busy life to sit on the phone with me for hours, talking me through. She has been an absolute godsend, she can make me laugh even when I am frightened. She can talk clinically with me, and make me understand that I am not going to die when my heart rate is high.

2) I started having weekly Bible studies with another good friend. Those have helped me feel more "centered" and I can really tell a difference when I miss a week. The Bible studies have helped me to feel better about what is going on in my life, and how I can use it to help others.

3) My amazing and wonderful husband who is always supportive. He has been here the whole time, and insists on going to all doctor visits with me. In the beginning, he was skeptical, still supportive, but skeptical until the doctors had evidence that something physical was going on.

I guess stubbornness is also a factor. Once I had a diagnosis of sorts, I sort of dug my heels in and refuse to give up until I am either feeling better or find out what is wrong. I do a lot of research online now. This site has helped me the most, especially in the beginning.

[carinara]

It was a very hard and stressfull time before my diagnosis. Due to me feeling so bad healthwise I couldnt be the mother i always wanted to be wich hurt me the most and left me with a constant bad conscience . My ex husband was self employed and i was doing all the office work but couldnt function anymore wich made him so mad and aggressive plus add the stress that nobody took me serious and i felt totally misunderstood, helpless, alone and so scared that something major would be wrong with me and i would die and leave my little one behind. I always knew i had to keep searching, i wanted to be the mother i always dreamed of, i had so many dreams for my life. Back then my Dad had a major heart surgery and watching him dealing with it was a big time inspiration for me, he truly is my big hero. I never wanted to give up trying my best to find out whats wrong with me. I always trusted in life and god. I started to read spiritual books again and reminded myself that i should always try to find the blessing in every situation and crisis. And even if it might seem at first if there is none, it always turns out that there is one. . In my opinion every situation in life is a challenge which we can learn something out of and that nothing happens without a reason. So i kept searching and searching, just doing nothing didnt feel right to me. I tried to learn as much as i could out of suffering with all these weired symptoms, just as if i was researching them (me being a researcher) in every subject to learn and help me and other people with my experience.

Even in my deepest hours, days, weeks when i couldnt stopp crying, felt my life was falling appart and felt as if i didnt know myself anymore i tried to remind me that this illness was given to me to teach me many things and that something good will come out of it in the end of the day. . Learning Is always a process. And i wanted to be an example for my daughter not to give up.

carinara

[tilly]

I did not have a choice of seeing numerous doctor where I live .....

I new and the doctors I saw new that something was going on with me ... but they where not prepared to think outside of the box ...

it has been the most stressful time of my life, and it was and still is hard to broach the subject with you general practice doctors ....

How did you keep going

with clear demonstratable symptoms ( tachycardia ) 150bpm every time I try to do anything, knowing that having huge heart rates and fatiguing and debilitating symptoms, not able to live a normal life .... just knowing there was something drastically wrong ... something has taken your quality of life away ...... a totally life changing thing has happened to you ....

you have to keep going to try and get to the bottom of what is happening to you .... it is to easy for doctors to dismiss people,

..... I have had support from my husband and sons and sisters, if it was not for them I don't know how I would get through ......

I also had help and support from the cardiac rehab nurses, they had not heard of pots or ist or dysauntomnia but they where willing to read about it ... and I thank them for that .....

and then there is the help from this site, support groups, without these then I fear things would be a lot worse ..............

Tilly

[Csmith3]

I suppose that deep down, I always knew there was something wrong with me that most people didn't have. Like Tilly, I was generally seeing the same doctors, and once you have been brushed off or misdiagnosed, it is difficult to go back.

When I got into a really bad patch of health and struggled to hold down my job and carry on with normal day to day living, people would start telling me that I should go to the doctors and get it sorted out. I knew they were right and eventually enough people would say it to me and I felt that justified me going back to the doctors and asking the same questions again.

Sometimes, not paying for healthcare is a bad thing. I felt guilty I was taking up doctors' time that could have been spent with others. This was partly self-inflicted but a few doctors certainly reinforced that message. If I had been paying, I think I would have pursued it further. I acknowledge that not everyone is in the fortunate position to be able to pay and this isn't a general political statement that one system is better than the other.

As time went on and wonderful things like the internet appeared, it became increasingly apparent to me that I had been misdiagnosed. This really annoyed me because it looked like they had given me very poor advice and had no basis for the diagnosis. At this point, the credibility of a lot of my doctors disappeared and I had the confidence to take control of the situation. So I did and I sorted it all out as far as is possible. And it really wasn't that hard.

[Guest tearose]

How did I persevere?

1) I just knew something was wrong and I never thought it was all in my head.

I knew if I did not speak up for myself, no one else would ever be able to help me. I knew I had to be factual, honest and persistent and then someone would hear me, care and help. I never allowed myself become depressed because I just knew it would not help and it would distract the doctor from my real problems! The wrong label was not going to help me. Getting dark and desperate happened but never lingered because I refused to let my emotions be squashed along with all else that was crumbling around me. I focused on dealing with the symptoms and managing them with dignity. I did not ask for this, but I did ask for the strength to deal gracefully with it. I became very positive, spiritual, meditative and learned to trust in a holy energy greater than me, what I think of as Divine Intelligence.

2) I trusted my inner voice, my instinct and wanted more for my life.

I came up with the saying "I cannot control what happens to me I can only control how I respond" and I would push on. Although I have good supports in friends and family, I knew it was up to me to sort this stuff out. I knew I came into the world alone and would leave alone and needed to be self reliant and independent. I strived to be my own advocate and speak my peace. This helped me feel I was not going to become a burden to others.

3) I called on the grace of the Divine.

When I was fighting a terrible virus and all my worst symptoms were flaring, I had trouble eating, digesting, maintaining body temperature, moving....I lay on a sofa weak and unable to even think well...I could not even sort my dishes from the dishwasher or go to the mailbox to get the mail...at my all time physical lowest yet strongest emotional point...I looked into my soul and looked around and said..."God, I have done my best with this weak and damaged body, I have made my peace in the world and have no attachments except to those I know and love. I know all will survive if I die, I am not asking to leave but I am letting you know that I have not one ounce of energy left in me. Please, Lord, either take me or give me the energy to move forward again."

The next day, my internist started me on the path that eventually led me to the Mayo Clinic and the correct diagnosis! I was given the grace and strength to move forward again and I've kept moving forward since then. I do fall down at times and sometimes step back but I overall keep moving forward and learning and growing. What I lack in physical ability I more than compensate for in Spiritual development and strength!

4) Giving of myself to others.

Finding a way to be of service to others helped me be active in life and step away from my personal trials. There are always those who struggle more and some way, I wanted to reach out and help. I also wanted to share my experience to help spare others some of my hardships if possible.

5) Communication and Support

No one is an island. Even though our path is individual, I am delighted to have a wonderful soul mate for a husband/friend. I also have two wonderful sons and friends and family. My faith community is also important. I am delighted to be a five year member of the DINET family as well!

lovingly,

tearose

[pat57]

I think the misdiagnosis's are part of the process. Like a process of elimination. In some cases the Drs. did mess up, but certainly there was no malice.

I was very sad about my inability to mother well, and I have still not gotten over that. Like somebody else said, what choice did we have?

The sun comes up and you tend to the next days business as well as you can.

[Maxine]

Fortunately I have a husband who believed I was sick, but at one time he had his doubts. My mother in law held my hand and took me to appointments when I was really bad-------------AND really scared.

MY family still looks at me like I'm trying to sell them a cheap vaccuum cleaner, and I know they have made fun of me, and my support group over and over again. My Dad and brother have more of a conscience, and tries to understand, but now he has a woman in his life who had the attitude of, "just do it, get up and move"! MY Dad will be 78, and he's still very active, and she's 76, and very active. They have no clue what gravity feels like to me.

What kept ME going was having the good fortune of finding a couple of supportive and loyal friends locally who also have this condition, and we could talk on the phone, or go out together for lunch and just know how to work around our physical limitations and have a good time. We could understand when one of us wasn't doing well, and know we are truly understood. It's been especially hard these last few weeks, because I lost one of those friends because she passed away from complications of her EDS by a ruptured aorta. No one would listen to her in the ERs she went to, and now a beautiful mother, sister, friend, and daughter has tragically passed away due to ignorance and betrayal from the medical community. I'm in a slump now and trying to find the emotional strength to continue after this tragic loss.

My husband is supportive, but not one to stand up for me when faced with a jerk doctor or nurse. He's not wired that way, I'm the one wired that way, but if you don't have some back it up it's tough. As some of you have experienced, the more we advocate for ourselves, the more nuts they think you are-----or at least that's what they try to pin on you because some docs are just too much of a coward to admit this is something that is bigger then they are, but they're willing to try anyway.

The huge amount of Joy my Son and my granddaughters give me is also a big part of the glue that holds me together.

My son wrote a poem that was so telling of this disorder, you could see that he really reached deep inside himself to try to understand this, and what it was like looking at this from the view of the son of a mother who seemed to be withering away and feeling hopeless.

Oh, I have to give my precious animals credit---------------India, Samantha, and Spencer----------what beautiful gifts they are.

I guess I'm mentally strong too, and I am able to continue picking up the pieces when I get treated with denial and disrespect from doctors. However, there was a time when a nurse was verbally abusive with me after telling me she was following my postings on this forum. This threw me for a while, and I still struggle with it at times. A surgeon who was very good with my brother who passed away from colon cancer became our family general surgeon. She was handling my colonoscopy, lower GI ect. She was so patient with me, and I'll always be grateful for that. She told me that I was a very strong person mentally. It's people like this that keep me going. Every once in a while you'll see some hope when you know there's still people around like this. I have also found comfort in some of you on this forum who have put up with my ramblings, and still offered your support and understanding.

We had a local support group a few years ago that made me feel like I had some purpose, and it helped me keep my mind off my own struggles because I saw people deal with worse, and some of them lived alone not having the support I have. My husband has always been supportive of me when I wanted to help a friend with rides to the airport, train station, or help with offering a meal or a place to stay to those that came from out of town to see Dr. Grubb. If I wasn't up to it, he was right there helping me help someone else. We all have to hold eachother together because WE have the ultimate understanding of what it feels like to go into ANS meltdown, or not be able to sleep nights because our EDS causes so many problems with instability and pain in our joints that no position is comfortable in bed.

It's a combination of support & love from good friends and family, the rare understanding & knowledgable doctor, and trying to help those less fortunate that help me hold it together.

Maxine :0)