'A Patient Voice' Community

You have to move past the guilt. There is no reason to feel guilty, actually. Remember you said something about 'in sickness and in health' when you married? You are sick. You did not ask for that. Let your family care for you. I am sure they want to do that. And here is a hot tip. You cannot be chronically ill and a control freak. Let go.

Thank you for your response.

Yes, I certainly believe the desire to control and the uncontrollable body are causing the majority of my "mental" issues with this. I am trying to let go, and I am trying to not feel guilty.

I am trying to allow others to help us as much as I can.

But I am 30 years old, and I cannot work, right now I cannot even drive, I feel like my education and all of my hard work were for nothing (though realistically I know at some point I should be well enough to go back to work). I can see in looking back that I have not been "100%" in my daughter's lifetime, and I want to be. How unfair for her! Although I know in my head that I did everything I could - the doctors just didn't put it together.

I have a therapist, and I'm sure this will be our next topic to cover! My Type A has been the topic of numerous conversations over the years, and I am sure it will continue to be.

Do you have any recommendations for books/articles on general coping? My disease is so rare, there is nothing really published on it (at least nothing someone without an MD can understand). I am determined to do everything possible to help myself and get better, along with the docs. I refuse to let this beat me! I will look more on this site for the resources already posted here.

Thank you again. I know what you said is true, but I don't think I've heard it summed up so well. "You cannot be chronically ill and a control freak. Let go." I shall repeat this to myself throughout every day!

hello, mr. cohen --

yes, i liked the "can't be chronically ill and a control freak at the same time" thought too. i've got, in order of arrival, much hearing loss, clinical depression, parkinson's, and migraines. i have learned how to deal with each of these, but i hate having to deal with each of them.

however, it's either let go of the idea that you can control everything that happens to you, or live in a perpetually frustrated and wretched state. that is a choice i know how to make. in other words, as i now tell myself with respect to many things, i don't have to like it, i just have to do it.

i've been thinking quite a bit about your other post on attitudes toward the chronically ill and how to change them. i'll get back to you on that!

-- susie margaret

Dear Ms. Sunshine,

You have no mental issues. Cut yourself some slack. Illness is a crucible, not a classroom. We all are making it up as we go along. You will learn, and you will get better. And you will be strong at the broken places.

Man, I don't want to come to this board and sound like a broken record....but have they looked at fibromyalgia and chronic fatigue for you? Every symptom you're describing from the low vit. D to the neurological symptoms happen in fibromyalgia and fibro tends to piggy back with other illnesses. And chronic fatigue just happens.

Tanya

Tanya,

Yes, they are looking at everything. With Addison's, Celiac is a huge possibility, and that can cause the vit D deficiency (malabsorption). I have since seen the neurologist, and he diagnosed me with probable migraines (and gave me meds), and he is looking at autonomic neuropathy - a nerve damage for the automatic nervous system caused by an underlying condition - Celiac is one - but that can be reversed if the underlying condition is diagnosed and treated. HOWEVER, he is sending me to a cardiologist for further testing. One big thing that happened at my appointment - my pupils did not dialate at ALL with the bright light. Red flag! Autonomic neuropathy generally requires a cardio and a neuro, and I hate it because it's what I call a "back end" diagnosis (no definitive test, diagnosed based on elimination and "educated" guessing).

The bp issues can be caused by Addison's, and my endocrinologist doubled my dose of that medication Friday, and I am seeing a little bit of a difference already. My endo got me a cardio appointment for Monday. These guys are not screwing around! My condition deteriorated rapidly between Wed and Fri morning; I honestly thought they were going to put me in the hospital. My hubby had to hold on to me just to walk, and the nurse took one look and grabbed my other side. I'm like a mega-drunk trying to walk. But the increased meds has helped, so I'm more like a quasi-drunk now. (I have to laugh, or I'll cry!)

I imagine the cardio will run a ton of tests, including the tilt table the neuro requested. That will give them a better idea of what my bp is doing as well as contribute to the autonomic neuropathy diagnosis. The cardio clinic I am going to is the one i went to during pregnancy, and they have everything there, so I can have all the tests run Monday if the doc wants them.

Based on my research, vit D deficiency is often misdiagnosed as fibromyalgia, so that's a tough call. We'll have to see if/when the D level comes up to a "normal" range if those symptoms still exist, and if they do, then look at FM. (If they don't come up, then malabsorption is a huge question, and that will probably lead to a "back end" Celiac diagnosis) I am chronically fatigued to the point of not being able to get up, but as far as the actual diagnosed illness, I think we'll have to wait.

Addison's is so bloody complicated, a lot of things have to be treated, then wait until it's "fixed", then look at the symptoms again, go back and figure out what's causing the remaining symptoms, treat, wait, and so forth. My biggest problem is that my levels were SO low, and based on symptoms can be traced back SO far, I've already built up the complications a lot of Addisonians don't see for years after the diagnoses. Ain't I just lucky?

Thank you for your input. You don't sound like a broken record to me. Would you do me a favor, if you don't mind, and kind of keep up with me when I post and see what you think? I have learned already, having a rare disease, that a lot of the patients know more than the docs, especially the ones who educate themselves. (And in diseases like mine, I may know stuff one specialist doesn't, but if you combine the 3, they could kick my butt! I just keep them in line with my research!)

Please, if you don't mind. It would mean a great deal to me. Is there a way I could communicate with you directly? I'm not sure if they've done anything like that on this new WebMD. Or are you on another board more specific than this one?

Cynthia

hello, cynthia --

i'm so sorry that you've had to deal with so many problems.

please know that i am thinking of you and sending healing thoughts.

-- susie margaret

Thank you!

Hi Cynthia,

I am usually found on the fibromyalgia board. But my "junk" email is thunderbirdcntry at yahoo dot com Just pop over to the fibro board and tell me you're emailing or I'll never check that email...lol....but I'ld be glad to get to know you

Tanya

Susie:

You do understand I hope that control is fiction to begin with. We are blown around by a mighty wind, and we pretend we are guiding the ship. It is the illusion of control you are chasing. Shrug it off for a while and see how it feels.

Richard

Well, considering you are one of my bestest friends, and I know you've been going thru a rough patch, I decided to stalk you to your board, and tell you exactly what I think. I think that you are sick. I think that they are trying to fix you. I think that although you feel guilty, you shouldn't. I think that it will be simply a blip in your memory when they do figure you out. And? I kinda love you no matter how sick or screwed up you are. Feel better Merry Sunshine

Okay, next time I talk to the judge, I'll have him include WebMD stalking! HAHA You freak.

Just for anyone reading this for entertainment, this is one of my best friends, who by the way has never had any issue telling me exactly what she thinks to my face or over the phone, but apparently has now taken to stalking me online!

Teach me to complain about an upgrade on my board. That was about as smart as sending her the e-mail with all my business phone numbers/addresses/fax. Will I ever learn?!?

LOL - thanks for the laugh, CrzyJu! I wuv u 2.

Hello
As I sit here writing this, I have a billion emotions coming over me. I have been sick for 13 years. In my "past" life, I was the type person the more pressure put on me, the better I responded. Or so I thought.
I also feel helpless, powerless etc and there isn't anything I can do to fix my body. I have fibromyalgia, migraines, degenerative disc disease, and depression. I am in pain 100% of the time. My children are now 18 and 13 so I have made it through the days of dragging myself from place to place and being a taxi service also. My husband of 26 years has been a mediocre help. Not much family nearby to help either.
If this makes you feel any better, you will get through it. My faith and the power of prayer has been wonderful. I still remember the day I was told to "just go home and lay on the sofa". I was so angry to hear a medical professional use those words. I have had surgeries and lots of pt but all of this is not to "fix me" but to keep me going.
I completely understand your pain
Beth

I am in a similar situation as you, yet it has gone on for 9 years that I have been bedridden. My youngest is now 21. I try to deal with the guilt but struggle so much. However, I once asked for advice online by a psychiatrist who told me that I am being a good mother. I am teaching my children that life is not perfect, it is how you deal with the problems/issues that counts. That in reality they will experience a lot of pain and bad times and my example will help them get through it easier. He said I am fortunate to have a supportive husband, which I am so thankful for. When I feel really bad I remind myself of the lessons I have/am teaching my family.

Hope this helps a little.