Few questions/tiny moaning!!!

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Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 9/16/2007 3:47 AM (GMT -7)   
Thank you ALL for your wonderful support over my seemingly recent diagnosis of Sjogren's Syndrome.
I would like those here on this site the following, espec those with SS.
I seem to have a massive set back in the travelling to London to see this famous guy Hughes. I was alone and did a lot of walking holding on to the wheelchair as I am too weak really to sit and push self.
As a result the neuropathic pain in both legs up to knees and including have gone AWOL and the pain in my hands too which are flaming red.
Not only that but the joint pain and muscle pain in these areas is horrendous espec the wrists and hands, both the bones and muscles seem affected and I c ould scream in pain.
My general carcass is effected but especially the above and I have become very very depressed again.
Another question. I go awol in the light, noise and crowds, really it does sommut terrible to me, I find it hard to describe, neurolgically very distressing NOT psychologically as in panic but it HURTS the body and I want to flee. Is this common.
Please tell me how I deal with all this without taking yet another pill.
Twin who has Parkinsons now in London is telling me that she is doing loads of photography and garding for a friend and I couldnt even get to a couple yard beyiond the priory. I do realise she has a degenerative disorder but by gum she is very positive and cheerful telling me all the great photography she is doing and I can't as too ill.
Some ask what is the treatment plan, well no one has mentioned one. I'm to take the heparin when all the paper work is done for the sticky blood and the society here for SS say it really is up to me to self care and treat.
I also seem extraordinarily exhausted and can only go out for an hour and just want to sleep forever.
I still donno about my muscle wasting disorder nor my pos for the parki.
I bought a step machine which I do in the morning having breakfast sitting down, its on a gentle pressure and I bought hand gizmos for squeezing for strenghtening the hands but they have been too painful to start using.
I am now finding the manual wheelchair too much for me and the rollator and I am TERRIFIED TO TELL THE HEALTH BOARD as they will make me leave my fab corpo flat for a downstairs flat.
I have already fallen in the bathroom since comiming home and fallen down stairs prior to going to London and when putting the wheelchair in the car I have fallen on my bum with it crashing down half on top of me.
oh dear!!!!
xx Ann.
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/16/2007 9:54 AM (GMT -7)   
Ann, Oh dear is right! I am so very sorry you are so sick and don't seem to be able to get any help or relief for your problems.

Have you talked to your sister and asked her how she keeps such a positive attitude? Having a hobby she's passionate about is probably a tremendous help. I have become passionate about knitting and have more projects in my head than I'll ever have time for and it gives me something creative to do and to feel happy about. It doesn't take away the pain, and I don't pretend to be nearly as ill as you are, but it helps me with my attitude.

But in terms of your health problems, I don't know what to tell you except that my heart is breaking for you and I wish you the best in finding a doctor who is compassionate and can help you.

(((((hugs)))))

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/16/2007 1:07 PM (GMT -7)   
Hi Ann .

Urghhhh! You've had it rough haven't you. I think it is easier to give the image of being active and positive when you are ill than actually doing it. My family and friends think that I lead a normal life and yet i am MUCH less active than I would like to be. I do keep a positive attitude but every once in a while the tears just overcome me, wanting so bad to be the "tomboy" I have always been. I bet you look heroic to some people. You ARE heroic!! look at your independence in spite of illness that would have others seeking MUCH more assistance.

Oh, you pain sounds really bad . . . maybe nerve pain. Make sure and ask Dr. Hughes about the treatment plan. Ask EACH of your doctors at EACH visit about the treatment plan. What good is going to the doctor if they don't give you a treatment plan???

You have given me extra courage and motivation to go into the new week!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

 

Co-Moderator - Lupus Forum

 

UCTD, Hashimotos, Inflammatory Bowel, Inflammatroy Arthritis

 

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 9/16/2007 1:21 PM (GMT -7)   
Well, yes ye right Rosie, I told my twin who was in the disability field in her working life, if we all give the impression that we are "doing just nicely thank you" would that not say to em, well that lets us off the hook? Or is it more PC to look like we are doing ok to salve other concience when they know they should be helping more.
Or IS IT REALLY about if you complain well, others attitude is "I'm off!" tell me how many times has that happen any of ye!
Somehow it seemed as if people used to chat to me on the street, where are all the chatterers suddenly gone, is it they see me stumbling with the rollator or wheelchair so disappear do a bit of window shopping!
Rang a friend tonight, my twin has helped me decorate my studio into a bedroom, I did the sceme and I told my friend that it looks sort of prostitute boudoir rather than anything, its kitch, fluffy, pink and very much my arty stye and I have had a few "Wow"s from people who have seen it but it is very pink!!!! Have I really reverted to being a 5-9yr old again.
Smashed an old table to bits with a rock - I dont posess a hammer!
Now am I asking for the exhaustion or what?
By the way, nother question - does 'ants in your pants' go with this level of severe illness? Is it part of being ill especially with neuro elements or is it just to try and forget your this ill and you cant stay still cos if you do you start thinking?
I think it is more physical than psychological, I seem to be quite manic about shifting around the flat and rearrange things over and over and...........over!
zzzzz for now. that was meant to be x for now had fingers on wrong key but as I am about to turn off the light I thought it approp to leave it\
sweet dreams every one if poss
xAnn
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/16/2007 1:32 PM (GMT -7)   
Ann, some of our meds can cause the "ants in your pants". I know pred can do that, but I don't know about the meds you are on.

PINK!!! How divine!! I bet it is really 'girly girl'!!! No wonder you are fussing, you are still getting everything in just the right place!!

Those people that look away and pretend to window shop . . . are trying not to stare and they think it will be easier on you, if they aren't looking right at you . . . they really DO want to help, but they haven't a clue that they could just walk over and help . . . they think they need a master's degree in nursing to be of any assistance. I used to be one of those people until I spent some time with a friend of mine who would just walk right up to people and start helping. NOW I know how to do it. If I see a feeble old man or woman getting out of a car, I bring them a shopping cart because (for me anyway) it acts like a walker and is helpful. They actually do appreciate it too. When I see a person in a wheelchair at the store I watch to see if they need help getting items from a high shelf.

You sound like a super fun lady to hang out with!!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

 

Co-Moderator - Lupus Forum

 

UCTD, Hashimotos, Inflammatory Bowel, Inflammatroy Arthritis

 

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/16/2007 10:24 PM (GMT -7)   
Hi Ann--
I did get really sick once and couldn't stand being out in crowds,in bright lights whether artificial or natural, and loud noises. It was like a painless migraine, and there is such a thing and they are just like real ones. But in my case it was an allergic reaction to a medicine called Soma that made my sun sensitivity and general sensitivity worse. Also, on steroids, I have some problems like that, tv sounds too loud, eyes hurt, just want to be in dark. Sometimes these combinations of meds can cause real problems. Well, I hope you feel better and maybe have a look at some of the side effects of some of the medicines. i know plaquenil alone has made me really sensitive and adding the Soma threw me right over the edge.

I love pink, but some is just pukey pink but hope it is a good pink. I've loved the UK. You are lucky to be there, in my opinion. I liked it so much more than here in a way. Take care and I hope you feel better soon. Maybe staying a while in the dark will help. It did me.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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