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Hi Everyone, Its been a while


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I hope you are all hanging in there. Ive had my share of ups and downs since last time I posted; its been a while.

Still fighting with long term disability. You pay for insurance for years in case something happens then you have to fight to get it...... you know the drill. As far as Social Security goes HAAAAAAAAAAA.......

I actually have medical insurance now, which is great, they even waved the pre existing clause. So I can afford my meds now. Thank God for little things.

I sold my horses, which paid the bills for a while. I couldnt handle the work or ride anymore anyway.

Still have the same ol sysptoms plus some new ones. I have intense joint pain, anyone else have that. I also get this shooting pain from my groin to my knee that lasts only a few seconds but brings me to tears. Dont know whats up with that. Im spending a lot more time in bed now. And my memory is scattered. Im still having several times a week, my "Its the big one Im gonna die now"" autonomic storms. I am honestly at the point where the anxiety and the inpending doom I feel doesnt really bother me anymore. i take a couple valium, go to sleep, and if I wake up, I wake up, if not oh well.

Sorry to be so gloomy.

I have my 5 month old grandson, he just loves rocking. I hold him and he reaches up and plays with my hair. He really has made a big difference in my outlook. I gave up for a while. I dont complain or anything. I still do the best I can around the house but there are some days that it just hurts too much to move.

I hope all you guys are coping. I miss you. Glad your hear to listen.

Peace All


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Hang in there. And enjoy that baby. They are so innocent and can really turn a bad day in to a day of hope and contentment. My 3 little ones are what get me up and out of bed each day. Without them I don't know how I would handle this illness.

I don't have joint pain but I've seen alot of posts on it so I don't think your alone on that one. Maybe do a search on joint pain.

Hang in there


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Good to hear from you Janine! I have to hold my grand daughter sitting down.

My health has gone into quite a downward spiral also. Pretty depressing. My gastro told me to start putting on some weight. Well, if you can't, you can't.

My pcp will not help me get a power chair, so I am completely homebound and mostly on the couch semi reclined. So I guess we are in the same hole without the energy to dig out.

I just wanted you to know I understand and know how you feel. Hold that baby close, it makes me feel so much better and am sure it does you too! Sometimes it's the littlest things that keep us going! morgan

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Guest tearose

Hi Janine, sorry to hear that you are in a rough spot. I understand that numb feeling that comes from that constant pain and discomfort. It's like the body gets so tired of it and our nerve endings get "fried". I hear you when you say "If I wake up, I wake up, if I don't , I don't" it isn't really despair it is an acceptance that we can not control what we feel. Warm healing hug to you dear.

I admire your ability to put aside the fight and aggravation with disability ;):o

and the frustration with pots...

to be able to love your sweet family!

Hold on to that inner strength, it will sustain you. And we are here too! :huh:

best regards, tearose

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Thanks you guys for the kind words and support. Holding a baby just put a different prospective on things.

My diagnoses are: POTS, NMH, Hiatal Hernia, Dumping syndrome (digestive), hypertension, hypotension, tachycardia with PSVT, Depression, Generalized Anxiety Disorder, GERD, restless leg syndrome, insomnia.(im sure I forgot some)

Lymes was negative, did have a positive urine and blood metanephrine elevation but pheochromocytoma was ruled out with nuclear studies.

Getting work up now for Fibromyalgia, chronic fatigue.

Meds: Propanalol, Clonadine, Miodrine, Synthroid, Lexapro, Wellbutrin, Clonopin, Valium, Marinol, Nexium, Reglan, phenergan, high salt dit, liquid mineral supplement (really helps), fish oil, aspirin, multi vitamin with xtra b complexes.

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