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Back to sleepless nights


blackwolf
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I know we ahve all been there and done that, but I'm soooooo angree with my docs right now.

I am having alot of trouble controling my temper with my docs these last few times I have been in. This hasn't been a problem before and I am a little suprised with my own behavior lately. I have been really "short" with my docs and though I appoligized, I felt really bad with losing my temper. She was only trying to help, and I really wasn't very nice to her. OK, let me back up and tell you what happened. I went in to the after hours clinic because of lots (making me sweat type) of full body pain, nausea, low grade fever and dizziness (even when reclining). I got the usuall, lose the weight and everything would get better lecture and I just blew a gasket. I have been steadily losing about 4-6 pounds a month for several months, which is what my cardio said was best. I had a set back when I was put on the theophylline, I gained about 19 pounds. After I lost it, she said, "mabey you should see someone about this attitude problem". My responce "mabey if you would just read the chart in front of you, you would see I was doing pretty good." She left the room and came back a few minutes later, appoligized, as did I. We followed up with a long talk about what was going on. She was the one who suggested the gluten test. Now, when I called to get a follow up appointment, they don't know what I'm talking about and I'm just ready to blow!! :angry:

I think mabey I should just call the doc I saw that night and talk to her. I'm sorry, I guess I just needed to vent.

Tomarrow I go and see the court officer about sentancing of my brother and I know I won't sleep AGAIN tonight.

I know I have been thru these sleepless nights and that, "they too shall pass", but I just want to scream.

Another thing that had come up during my conversation with the doc was testing for lupus. Personally that scares the *!*! out of me and I just don't think I can handle anything else on my plate right now.

Thank you for letting me vent, I know that I feel so much better when I'm done and that, at least here, I am mostly understood.

:wub::wub:

Blackwolf

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Guest tearose

Hi sleepless blackwolf, you've got a lot on your mind right now so it sure doesn't help you get to sleep! I just can't believe what doctors put patients through. Did you read what they just put morgan's husband through? We go to them to help when we feel terrible or we just can't manage without a change in our care, and to have the doctor not even have looked at the chart!!! You have the right to be angry. There is NO excuse for the poor, mindless care these doctors give. This has to do with your LIFE! I'm sorry, but I too am angry at these situations to find any good to learn from it right now. You should call back and find that doctor, the one who started to care and listen to you, and tell her you had a problem booking the test. Hopefully she'll clear up the misunderstanding. Don't fear the test, knowledge is power. And as for the court date tomorrow, I'll keep sending you positive energy and thoughts. At one extremely rough point in my life, when I needed to release anger, frustration and nearly rage...I took a bed pillow and gently covered my mouth and screamed as loud and hard as I could into it. It actually helped release that pent up energy I had no other constructive place to get rid of it. Hang in there pal, tearose

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Hi,

I think that with everything that is going on in your life presently it is normal that you have this kind of reaction. You have been under a lot of stress lately. I know it does not give a good impression to doctors but they are not in our shoes. I understand how you feel.

Ernie

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Sorry to hear about your recent battle with the medical world. It is just so frustrating. I just wonder....even though SHE apologized....what do you think she wrote on your chart???

You have been through so much recently and a lesser person would have cracked under the pressure so just remember that as you go through this latest round of events. I also think an occasional outburst is warranted and maybe even helpful and like the idea of the full pillow scream! I hope you get your test scheduled. If you are gluten sensitive it could make a world of difference to modify your diet and see an improvement.

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Ditto on the incredible stress you are under right now. It would drive even the healthiest person to do, say and think things that are very out of character! I wish you and your family the very best . . .

As for the lupus test, please don't fear it. It seems pretty common that those with any form of dysautonomia are tested for lupus, and it is quite rare that the test returns a positive result. It's just another thing in the process of elimination, so maybe you can look forward to knocking that off of your list of possible diseases.

Hang in there, and feel free to vent any time. We're here to listen.

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Blackwolf,

I agree with some of the other posts. Because you are under alot of stress and not sleeping so well it's not that unusual that you would feel frustrated and get angry with your Dr. I would have done the same thing. In fact a few months ago I got very angry with a new neurologist because I had finally reached a point where I was not going to tolerate poor medical care anymore. And I thought she needed to know that. The saying"you're only human' really applies here. So try not to be too hard on yourself.

I agree with Opus, al ot of us probably have been tested for Lupus and we don't have it. Good luck with the test.

And good luck with the court officer tomorrow.

GayleP

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Again, Thank you all.

The appointment went ok, but I had a little trouble with extra anxiety. I'm still thinking of asking for something to help, just till all this is over. As I understand it they are asking for a life sentance and I expect he'll get it as he has confessed to all that he did. It was requested that I attend the sentancing in court, but I don't think I can. I know my parents won't go and neither will my hubby.

I finally got an appointment in the clinic for the blood work tomarrow, hopefully, I won't be to badly bruised by the techs.

Thanks again.

Blackwolf

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Dear blackwolf,

If you don't think you can attend that sentencing you should listen to your gut feeling and definately not go. Now that this brother business is getting -really getting behind you - will automatically start to sleep again. It will just start to happen. You have been through so much but now your body will "get it" that it's okay for it start winding down. Also what is amazing when you begin sleeping again you won't have to collect as many nights of sleep as you'd think before you feel revived.

I speak from experience. I too have had trouble sleeping for quite a while now (weeks on end) because of lots of things and I cannot believe how it interferes with functioning and thinking and perspective. Then things feel amplified and the body aches. But anyway suddenly out of the blue I have been able to sleep well for the last 3 nights and I notice such a difference. I'm not even going to question it. Only trust that my body figured out that it was time to let me sleep. After weeks of not sleeping and then 3 nights of sleep I feel so much more functional and have a much better perspective. And the same thing will happen to you. All of a sudden you will start to sleep again. And you will feel better in many ways.

Good luck tomorrow with the bloodwork. Feel better.

Best Wishes,

Beverly

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dear blackwolf, trust me , there a few docs out wishing me off the face of the planet right now! i think they always test for lupus with us, it seems like most of us have been and mostly we are negative. but i certainly understand your frustration. when i went to my gastro he said i looked great. well i've lost weight because i eat gerbers for goodness sake. i'd rather be heavy thank you! i don't know what's going on with your brother, but you will be in my prayers and just try to hang on. screaming in pillows is good, as is being able to vent on this site. i am sorry you are going through this. just remember that it's not you, it's the #%%hole docs that are the problem...morgan

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As a person who went to 9 different GPs and 5 specialists before I found out about POTS on the internet and demanded testing (at a cost of around $1400 australian dollars and nine months of worry, fear and ridicule), i feel that i have the right to say that frankly, i have little or no time at all for doctors -

The arrogance to which doctors prescribe in their daily dealings with patients astonishes me - you would think they have all the answers and know it all - when in actual fact they can only explain one in twenty cases of high blood pressure and dont know the cause of around 60% of illnesses and conditions.

I think they are all rushed and if its not an easy answer, its just a palm off with words liked 'stressed', or 'anxiety' and the usual perscription of 'anti depressants' or 'rest' - they just dont take it seriously.

I had a few good doctors but even then, they were sick of me by my fourth consultation and just wanted to appease me to get me out of their hair, more than a feeling of genuine concern for my welfare. I was so irritable, fatigued and hyper that im sure they all just wrote me off as a nutter as soon as my thyroid came back normal - not that an overactive thyroid causes dizziness which was my main symptom!!!

It would be malicious to think that if the same thing happened to them they would know what it feels like to doubt your self and actually start to think that maybe you are going mad... The depression and worry that this caused me was terrible - and it was all unneccesary...

Venting feels good!!

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Again, Thanks everyone, they only got enough for the glutten test. I will try agin in a week or two for the lupus. The reason for the lupus test, I have chronic sore/swollen lymps with no cause, muscle and joint pain, with some reddness and swelling (esp. the hands, wrists and elbows), Rayraud's (sp?) was already dxd (but is common with POTS). I guess that they just want to cover all the bases.

Beverly- thank you, one of my main troubles sleeping is chronic pain. I usually crash by 4-5am and sleep about 3-4 hours till I have to much "breakthrough pain" for my system to handle and I just can't find a good position to sleep in. I only have about 3 positions to sleep in. Part of the trouble is I can't lay down, except for tests, even then I get "explosive" headaches, my head feels like it is going to blowup and I see flashing lights and feel very dizzy and nauseated (I had my bp checked a few times while laying down it goes up and then goes really low). I sleep at about 45-60 degrees elevated by one of those angled pillows with more regular pillows on top. I also sleep on my couch as I can't roll on to my right side and I prefer to be on my left with my back leaning against the couch back. The stress of everything with my brother is getting better but I still worry a little about my daughter as she really doesn't seem to understand that he will be in prison for the rest of his life, she still wants to see him, but can't as she isn't allowed to see him till she is 18.

Morgan and Ramakentesh- thank you, I know so many of us have to go thru all of these nasty docs to find the few good ones, but still **!!!*!*!*. I remember reading something ( i think ) nina put up about how suprised doc where about they way they where treated after they were dx'd with CFS/fibro.

Again, thank you everyone, Blackwolf

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blackwolf,

I am so sorry that you have all that pain. I somehow did not know this. I remember you said that you slept on the couch but I didn't know why.

There is a gal for whom- (up until Nicole got pretty sick recently) I was a patient advocate. She has Lyme and one of her big problems is pain. I never met anyone who was in as much pain as she was in. Anyway to make a long story short she had depression and found a psychiatrist whose specialty is pain management. You could have knocked me over with a feather- I never heard of such a combination -psychiatry AND pain management????

Then I was shocked even further to find out how he decided to treat her overwhelming pain. Ready? Methadone. The gal thought as I did - sounds a little out there (cuz it's used usually for addicts - to get them clean) but she did research and found out that it is the newest cutting edge treatment for pain. Anyway she got on a dose that suited her disposition and pain and it has made all the difference in the world in her life. Anyway- I don't know if you ever heard of such a thing- methadone- for treating pain- but I thought I'd tell you in case you'd like to tuck it away for future thought.

I hope you find out soon what is causing all of your muscle and joint pain and swollen glands.

Take care,

Beverly

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Dear Beverly, My uncle is currently taking that as treatment for shingle pain. It helps alot and he praises it. I have also considered getting a methoprednisone(sp?)

dose pack, I have had those in the past and they helped for about 4 months before the pain got bad again. I'll keep it in mind though, I guess I never made the connection with the methadone and my pain. I think my gp is thinking about sending me to an endo doc to see if there is anything else going on. whatever.

Thanks again, Blackwolf

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