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  1. Thanks, you're so sweet! There will be a lot more searching for answers as my numbers aren't coming up for RA or Lupus but other strange numbers -- some things too high and some too low -- are showing up. Some things are kind of funny like my massive yogurt craving that I would literally get up in the middle of the night for. It turns out I was massively low on vitamin D.

    I hope you're doing well and getting out some. Summer is kind of hard on us but no matter what, I hope you get to enjoy it.

    Take care and lots of love, Susan
  2. View Conversation
    Hello Susan,

    I am really so sorry mate and shocked it's really knocking you about so much, i really hope the doctor's and specialist's can help soon so you can get your life back in some kind of order, just to make you feel more comfortable with your life.

    ((Love & Kisses)) Susan xxxxxxxxx
  3. Hey there -

    I'm so sorry you're having so much trouble with your legs. My lower body is the the worst of all when it comes to pain. I finally get to see my expert doctors this week so I'm hoping they will put me on the right medicine and get me off of the prednisone. I'm so swollen I look like a a pregnant lady!

    Can they give you pain medicine or do you not want to use that? I have to use pain medicine for my legs and feet or I would want to die. And I mean that very seriously. The pain is that bad. The little bruises and sores are showing up on my calves again so I'm keeping close track. I don't want any blood clots.

    I sure hope you get better soon. I keep you in my prayers! Take care, xoxox!
  4. View Conversation
    Hi Susan,
    It's funny me adding those pic's after what the clotting did to me but have a guess my right calf is swelling out again and going tight, the rheumo sent me to have more bloods done last week and they had a game finding a nerve but she did in the end and had to pressure my arm for the blood to come out, she said that wants checking.

    I'd rather die first mate than have that wulfrin again and like i said before they pulled me off it because it did no good, the pain in my leg beside everything else is driving me mad.

    Less of me sorry, how you keeping in general and i hope your not suffering to bad. xxx
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    Hi Susan,

    I hope your doing ok mate and your flares have carmed abit as there's nothing better than abit of a break from it,as i well know. Have a nice weekend with your family.

    Love Terri xxx
  6. View Conversation
    Hello Susan,
    How you feeling now mate, i've not been on for about 3 days been really rough. Depression alone is one hell of a symptom to fight, sometimes the least little thing makes me cry.
    I used to have a friend who had MS and she was forever falling so in the end her husband made her rest alot more.

    I know you'd like to wait for your appointment but i'd phone if your able to, this week i'm phoning the sister at the hospital because it's really catching up with me and like yourself i keep sleeping bad in the afternoon, then when things need facing i have to pluck myself up for the next day.

    Please let me know how you are mate. Love Terri xxx
  7. View Conversation
    Hello Susan,

    Sorry to hear your so low mate, it seems we're both going through the same problems i'm aching like mad the same places as you and i'm typing now but totally tied and i've started dropping off to sleep in the afternoon that's never been me.
    They don't have you in hospital here unless really nescessary and this morning i broke down of crying again i'm only waiting for the depression to kick in well and i'll be on a right downer.

    Is'nt there someone at the hospital you can talk to susan to see what they say mate, as the pain gets totally unbearable i think at times.
    I'm losing more weight at the mo and craving food like i'm starved to death so god knows what's causing that now.

    Please takecare mate and i would get intouch with someone especially going off balance as you don't know what could be re-occuring again.

    ~Hugs & Kisses to you~ Terri xxx
  8. View Conversation
    I have been out of action for 3 months and I just want to know how you and your sone have been going?
  9. View Conversation
    Hi Sarah,

    How you feeling mate in yourself, as your going through alot like myself.

    I've done nothing but kip all night and my legs today have felt so heavy and tied,got cleaning to do tomorrow before the weekend dreading it .lol

    Luv Terri xxx
  10. View Conversation
    Hi Sarah, Just letting you know mate i've added the blog for DVT and i do apologise. xxx
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About serand4

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About serand4
Still working on the correct diagnosis. I'm 47, single mom of a great 16 year old boy. Currently waiting impatiently for disability as there is no way I can work at this time. Love to laugh and meet interesting people. Can't wait to get this disease under control so I can do those things again.
St. Louis
Writing, animals, reading, learning about this disease and others like it.
Graphic designer, writer but I can't work right now.


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Recent Entries

Way too much pain

by serand4 on 09-25-2012 at 04:53 PM
Maybe it's good, maybe it's bad, but writing helps ease some of the pain from my legs and arms. I had a good day but tonight it rained and cooled off. Maybe my joints just can't take it. I've spread pain relief lotion from my knees to my ankles and my feet have their own creams. Praise God, the Tylenol helps my hands. I was taken off of narcotics for my fibro about a month ago and usually, it's not problem, but tonight, I wish I could just apply something to the pain! I also thank God that

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Things could be looking up

by serand4 on 09-19-2012 at 07:14 AM
It was pretty gloomy for awhile where my health was concerned. Out of all of the crazy things happening to me, the 3:00pm shut down is the worst! I'd get quite a bit done and then 3:00pm hits and I have to make sure there is a bed nearby. God forbid that I'm behind the wheel. I blare my radio, open the windows and if that doesn't work, I will pull over. Mostly, I try to make sure I'm not out and about.

But my bladder seems to be working again - Praise God! I won't lie, the catheder

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Silver linings and lead weights

by serand4 on 09-12-2012 at 10:02 AM
This past four years of fighting one pain disease after another has taken it's toll. It does on all of us but I can't speak for others, only me. I went from a vivacious, outgoing, on the move mom to a couch potato who can't remember if she ate that day. My son, now 18, has had to watch the EMTs take me away numerous times. He's lifted me from the kitchen floor after a seizure when I can't use my lips to speak clearly. My blood pressure runs from 90/60 to 180/115 -- never any idea what it

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I give up on this Lupus thing

by serand4 on 07-29-2011 at 04:08 PM
I've been fighting for a year to make any headway with this Lupus diagnosis. I have numerous symptoms but I don't have the numbers so therefore, I'm unqualified. I get hospitalized but since the numbers don't show up, I just look like the junkie off the street. And that's funny too because I receive far too much medication already.

In the next month I will be seeing a Pulminologist, cardiologist, gastrologist, psychiatrist, and my primary. Somehow, I just don't have much faith.

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Just a tough day

by serand4 on 03-30-2011 at 09:54 AM
I have to admit that I'm getting tired of the progressive nature of this disease. Months ago it was all about the rash on my face and then the endless fact-finding mission to figure out what I'm dealing with. Now, several months later, many hospitalizations and doctors appts later, I wish I was just back to the red face! Forgive me for the rant, but here it comes...

I am so tired of being tired! For a couple of years it was just going back to bed in the morning after my son was

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