Need To Vent.

[gjensen]

It was troubling enough to once be strong, then weak. Once active, and then inactive. To once enjoy a number of things, to have to give them up.

To go though a number of doctors that cannot see passed their foreheads.

To realize that if anything happened to you, there would not be any support for your immediate family.

To once be the family leader and provider and then become a burden and hold that same family back.

Now every doctor I have thinks another should fill out my short term disability paperwork out which I will not get if I do not get done.

It is an uncomfortable feeling to consider that your family would be better off financially if . . .

I have always been about solutions, and have no solution.

I will have a solution, and a conclusion. Regardless.

[bellgirl]

I'm sorry you are going through a rough time, and finances are definitely a concern for you and your family. How long have you had a diagnosis? It would have to be definitive for you to be able to file for disabiltity. Don't even go to the feeling that your family would be better off financially if....Praying for you to be able to make some wise decisions. Is anyone else able to work in your family possibly?

[looneymom]

In HIS Time. Remember the song. Keep humming the tune and Count Your Many Blessings.

Rachel

[gjensen]

Thank you both.

I should have kept my mouth shut. I try to stay quiet around here. So no one else worries.

Bell girl, I have a diagnoses or two or three, but I do not know how confident they are about them. It is not well understood by them.

This condition has exposed some flaws and weaknesses of mine.

[Confusedguy]

Your not alone. Luckily I office from home which makes a massive difference dealing with the symptoms and such.assive

[gjensen]

Confusedguy, I am (was) a commercial construction superintendent. Schools, Hotels, medical complexes,etc. It is all I know, and all I have done. There is no way that I could keep up with the rigors of the job requirements. The schedule is much too demanding, the physical requirements are much too demanding, the mental requirements are much too demanding. The commutes are too far.

Though I always enjoyed the challenges of what I did, I would like to learn something new, and be productive. If I could get where I could drive somewhere, or stay upright for even small lengths of time . . .

My fear is running out of money in the mean time. The concern is for these boys and my wife. The boys are good boys, and my wife is great. I would hate to see them suffer.

I know some have it worse than me, and I was whining. Just getting the run around, and the doctor part looks rather hopeless.

Had some testing done last Friday. Testing I did not need done. The one I thought could be helpful (catecholamine levels), I realized . . . I am clonidine (something I got myself put on) would effect those levels (I think). I did not think of that, but I should not have to.

Then the cardio was going to fill out my short term disability (the GP wanted a specialist to do it), and after sitting on it for 2wks, he decides it is best that the neuro fills it out. Well I hope the neuro will because I do not have anymore options.

The same cardio was supposed to be referring me to Mayo, and after waiting and waiting for news he had decided it was best that the neuro decided.

As far a I am concerned, a man decides before he makes the commitment. And if you do change your mind, you are man enough to tell someone. Not leave them hanging there.

Leaving me hanging there, is leaving my family hanging. That is what bothers me the most. And the helplessness to do anything about it. I am used to telling people what to do, and them listening. Not getting treated like I am less of a person.

I guess I needed a dose of humility. The family did not need it though. Just me.

[bellgirl]

He should never had told you that he was going to fill out the short term disability, if he had no intention of doing it. That's not right. He was in the wrong, not you! Doctors should know what medications affect what tests. I was on a Beta Blocker when I had a Holter monitor, which I know gave inadequate results. That's not your job to have to figure that out. I thought about it after the fact. Don't be so hard on yourself...

[gjensen]

I had a down moment. You guys know the ups and downs that go along with this. I feel for everyone here.

I can settle with most of it, and I do not want to get full of myself. I can get a bit touchy when I feel my family is at risk. I have been very fortunate in that respect. These guys deserve no harm. A very loyal, good natured, and respectful bunch.

Sometimes it is good for us to get our bubble busted, but they are not in that category. When that guy did not do what he said he was, it was more that he did not do it for them that bothered me.

The Duke neurologist said that he would gladly fill it out. He explained that he thought it would be better for the in State guys to do it, but did not realize they would not be willing.

I sent the cardiologist a message and he called to apologize, but all he had was excuses. I did not mind telling him that. He is clear on my position. My concern now is the next patient. There is no sense in the silliness. Do what you say your going to do, or do not make a commitment you are not sure about.

Anyways, I digress.

The Duke neurologist called me this evening and he found some things that he wants to investigate. He is supposed to be putting together a team to investigate it. He is also supposed to be looking for a place to get an upright MRI. Apparently, I have an abnormal amount of CSF sacs along my spine. He thinks that I might be losing spinal fluid when I stand. Looking at the report they are all up and down my spine, on both sides and some with some size.

I was skeptical when he first mentioned it. Looking into it, there is a connection to connective tissue disorders. So maybe I can get a Chiara (sp?) malformation investigated while I am at it?

Maybe this why I am getting such horribly debilitating head symptoms associated with being upright. That is what he is thinking, and the reason he did this additional MRI.

Guess I have more to learn.

Thank you for the support.

[castronovo112587]

My son had chiari 1 malformation. He was born with it and had brain surgery in may 2010 at age 4. It definitely can affect the flow of CFS and in addition a swallow test would be worth looking into as it can affect your swallowing capabilities. Do you snore at night? A lot of chiari patients will snore as well. So glad you were able to get the papers filled out and I can definitely see your frustration with a doctor saying one thing and then doing another and especially when the outcome can affect your family as well. I am hoping the upright MRI can give you some answers and you can get some relief from your headaches soon.

[gjensen]

Thank you Rosey.

I am not going to get my hopes up, or try not to. The most I could hope for is one lead leading to another.

Swallowing trouble was my first symptom. That is how I lost so much weight. I was working hard and not getting enough food in me.

[bellgirl]

That doesn't surprise me that you have a good neurologist at Duke. I used to work there and they have top notch doctors at that place. I hope your test shows something so that you are able to get the proper treatment. I have some issues with swallowing, but lately I've had more trouble with it going down my esophagus! Being on medications for dysautonomia does help with this. Hang in there!!

[castronovo112587]

Keep us posted gjensen

[Raisin]

Hi! I was crying one day and wondering what was happening to me when all the doctors that I had seen had sent me home without answers or validation and I asked God what I was supposed to do and all I heard was "just live". It was out of an odd circumstance that later I ended up in a neurologist's office and he has been a great doctor, a validator and a team leader. I know now that in those desperate moments when I feel like a large pile of dog poo, I may not be able to do any more that just living but that is what I do. I wish you good thoughts and prayers and certainly, understanding.

[bellgirl]

Such a good answer, Raisin. I went to many doctors to no avail, then 13 years later, when I became extremely ill, everything fell into place. The problem was that no one believed me, until my vertigo was so bad, I couldn't even stand up or walk, and was vomiting all over myself. When I started feeling well enough again to research some more, I prayed and asked God to help me find a doctor on the internet. Lo and Behold, I found testimonials about an ENT in Birmingham, whose son took me as his patient, and without me knowing it, he had done a thesis on Autonomic Vertigo!! He sent me to the right doctors. So whatever it takes, God is always faithful; Now I have several doctors that are so special to me, too. Give it time, and never give up!!