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Resolving the anemia will help no doubt but it didn't totally solve all my problems.

Cortisol levels perhaps? Dehydration from sleeping all night? Fasting blood glucose? All three combined and maybe more that I have not mentioned?

I think if you haven't yet I'd try an integrative doctor. Just because you get prescribed a med once doesn't mean that you should experiment with it. It's hard telling what all meds you have in your possession right now and a doctor would not want you to be storing meds and coming up with your own cocktail. It could be deadly, damaging or at the very least counterproductive. I had enough meds to probably kill a horse and disposed a bunch just for safety purposes. With kids in the house I didn't want them to get a hold of them and hurt themselves. You really need to be careful with that. Okay I'll take of my nurses cap now. I really would though try to take these findings to someone and get answers. Maybe even a neurologist since these are brain chemicals-just an idea.

Who drew your labs and what do they suggest? You are low in every area. Why would you be low. Is this chemical issue actually triggering your issue and what does your doctor want to do about it. You are self medicating and as a nurse it makes me nervous. I know it's your body and you are desperate to try anything, I would just be very nervous to give cardiac meds if it isn't indicated. You can do more harm than good....potentially get a build up in the system to where you could get hypotensive or have bradycardia. Please be careful.

Oh Dani I am so sorry to hear that.

But wait a minute.....if he does make the final decision he should have that to review. Oh this is a lot to figure out. I guess I need to call him and try to get that fax number. Also communicate with the dietician and see is willing to send him that info. Okay I need a check here. Am I being too forward in doing this? Her assessment clears up a lot of the misinformation in my file. Her finding is that I am not anorexic and she says she is not a psychiatrist but the only anxiety she can see is what relates to my physical problems not vice versa. Same findings that the psychologist had.

Okay my first thought was well I think right now I should just wait and see what happens next but I'm thinking when he does call I should get that fax number and see if the dietician can just fax her findings to him. It would be good to have on my record either way. Even if I would get approved I'm noticing that disability reevaluates in some cares and it's just good info to have on my file.

I just called my representative to see if I could get more medical records added to my file from the dietician I saw yesterday... She said my file had left their office and is headed to the local office in my city and they will be calling me from there. I thought I was going to be receiving something in the mail did I just get the wrong impression. I get so worked up at every step I need to calm down. I am so exhausted from yesterday. Appts wear me out both physically and emotionally. Then this morning of all things we had furniture delivered. My chest is hurting from the stress both physical and emotional no doubt. I didn't sleep much either I was so keyed up and now this about something really major. I guess I just need to wait patiently. Everything is really going okay here I need to keep focusing on the positives and try to keep the negatives or unknowns from impacting me so severely but it's so difficult. When it first hits I get knocked down and it just takes me a while to get up after any type of stress. I guess I should try to brace myself for that phone call if I'm showing signs of being that let down. I know logically that so many people get denied the first go around. This is the thing I can logically work things out in my mind and be fine with it but then when I really have to face the reality I crumble I lose my coping.

This is really peculiar. I'm hoping you figure it out.

I am at the point of feeling I should use a cart and also embarrassed. Personally I need to get over it. I think my issue is I still haven't totally accepted that I have a disability issue.

I'm missing my sons Christmas concert he is going to be an elf. He has a part with lines and he will sing and dance. I had a much overdue appt with outpatient today with a dietician. It went very well. She talked to me for over 2 hours. Can you believe it was her. This summer I spoke to her on the phone I was down to 86 pounds and questioning whether I should be hospitalized. The delimma is I am allergic to corn. Are you familiar with TPN? Nutrtion they put right into your veins? Well it's made of corn so I'm not a candidate. With my allergies I'm facing anaphylaxis vs starvation. This is my battle everyday. It's a hard battle. I am very tired. My body is weak too tired to get up and answer the phone. I took it as I sign I shouldn't go tonight. Maybe I could have had the appt a different day than the concert but it was the first I could get in and so well worth it. I couldn't believe it was the same dietician. So her verdict is that she commended me for all my hard work. She is communicating with my physician and speaking to my anorexia and anxiety issues. She says I am not anorexic based on talking to me. Anorexic from a stand point of being underweight that is all- no psychological issues and she said the only anxiety I seem to have is based on real fear. She said not to keep trying to eat any of the foods that my throat constricts with that it's a bad sign. She wants me to see a metabolic specialist and a geneticist. With talking to me she thinks there maybe a metabolic problem. So finally someone who wants to help me praise God! I go back in six weeks. I'm so sorry I cannot make it tonight. I love my kids so much and it kills me to not be there.

I feel really self concsious saying I know what you mean so much but that thing that happened to me at the meat store felt very very different too! I was really shocked I mean it was intense and immediate not the slow build up of presyncope that I used to feel and then it went just as quickly as it came and so I was like what was that? It made me wonder if it was some kind of surge or panic or what? I still don't know what it was it just felt lethal!

Quality of life can be defined in different ways. I loved my job. Being able to work again would bring me happiness.... Then again at the same time if it is making you nervous and gittery what is happening in your body and is that a sign that long term that medication would have negative effects?

I wonder too if when you got that symptomatic if you could have left and laid down. I know you are trying to keep your job and we all marvel at your ability but if you could have laid down if it wouldn't have escalated the way it did.

Okay question. How long did you take it because sometimes those can be temporary side effects and you may adjust to the effects over time. But yeah I would. I would do anything to have function back within reason.

Something similar happened to me Saturday when I ran into get my meat at the meat store. I walked in got to the meat counter and all I can remember is my face getting really warm and it felt like I suddenly was going to go out. Things got weird. Thank goodness it passed. The thing I noticed is I was exposed to some type of virus at my sons Christmas program. I had gone off and sat to the side and people followed well a woman right beside me coughed. I held my breath and thought get up and walk away don't breathe in those germs. I should have instead I sat there paralyzed holding my breath and then finally had to take a breath. I should have pretended to get up and go to the bathroom or something it was at the end and then just went a different direction. So it's been several days and my fever just showed yesterday. But it seems like leading up to that I've been more symptomatic with weakness and chest pain. That blip at the meat store happened so fast out or the blue. I had done two errands previously with no problem and rested in between. I've just had the feeling I'm not up to par. I'm really sorry that happened. I hope it was just a random thing and you start feeling much better.

Okay I do have just a very mild respiratory infection right now. I guess my body is fighting it and I feel so fatigued lately. I can sleep a full eight hours and I still feel like I have sleep deprivation.

Along with your tachycardia. I'm having a flare of it again and I'm worried it's my anemia again. I think I've been sitting around more though so I don't know if I increase my orthostatic intolerance when I'm not as active. I go back for iron levels next month. I tell myself I'll be okay but the chest pain and weakness is a horrible feeling.

So basically to learn to calm the body and keep it in that state as much as possible and create a lifestyle where we can maintain that level of calmness even if that means controlling our lives and exposure we can manage the levels to a certain degree of sympathetic involvement and triggering of anxiety reactions-unless there is some other imbalance in the body that triggers the system.

Okay this is my other question. If this is all involuntary...how in the world does anybody get control of it.

That last sentence is what got me.

Autonomic nervous system (ANS) — The part of the nervous system that supplies nerve endings in the blood vessels, heart, intestines, glands, and smooth muscles, and governs their involuntary functioning. The autonomic nervous system is responsible for the biochemical changes involved in experiences of anxiety.

I think what happens is well when you get into relationship therapy one of the things they talk about being important are boundaries. So when we develop a condition like POTS we have to revisit those personal boundaries and revise them so that we do not allow others to push us into a zone that is unhealthy for us. As far as us being limited in activity and that negatively impacting the relationship that is just a reality for many of us and people will either understand and cope or not. It's not something we can control. The lack of support is both shocking and painful I don't know if trying to accept where people are at helps. It seems like it still hurts though when it happens. From how it seems to me people seem very caught up in their own lives and realities.

They need to do an iron panel. I don't think it's true that with a hemoglobin of 10 they won't do infusions. I think they would make that decision more based on your ferritin levels.

Here too same effects. I really have to monitor and try to limit exposure. Like mother in law announced they'd be coming here for Christmas eve. I thought about it and thought you know what even if I hired someone to do all the cleaning and cooking I still don't know that I could handle hosting the party and then turning around and facing Christmas duties for my family with stress of packages to wrap and Santa also coming for a visit. So even though it wouldn't be negative and I would maybe even enjoy parts of it I had to say you know I don't think this is going to work. I have to keep things really low key or I spin out of control with physical symptoms manifesting.