View Full Version : Upgrade to my illness(or is it downgrade?)
sick n tired
11-18-2008, 11:17 PM
Went to the doc and he thinks that I have Sjogrens and sceroderma...although he is doing more tests for the scleraderma...ana is on the rise.
The pain in my jaw is excruciating and now I have these brownish raised patches on my face. It is ugly with a capital U, the patches are on both cheeks...grit in my eyes, dry skin, extreme fatigue and pain...soooo much pain...my hair is falling out, it is gross and it clogs up the drain...my skin hurts and burns, too...
Sorry for the complaining, but right now I can't sleep for the pain...my "friend" said the scleroderma is certain death...I told her that lupus can kill, but it can also be managed...I just love it when people around me are ray's of sunlight...
11-18-2008, 11:38 PM
Im sorry you are having alot of pain right now wish i could do something to help I guess we both feel like crap tonight i cant sleep either my wrists are hurting my hands are swollen and my knees feel like someone hit them with a sledge hammer....................If you dont mind but i will put a prayer on here for you its actually two
[b]PRAYER TO ACHIEVE INNER PEACE
SLOW ME DOWN,LORD. EASE THE POUNDING OF MY HEART BY THE QUIETING OF MY MIND. STEADY MY HURIED PACE WITH A VISION OF THE ETERNAL REACH OF TIME. GIVE ME,AMID THE CONFUSION OF THE DAY, THE CALMNESS OF THE EVERLASTING HILLS. BREAK THE TENSIONS OF MY NERVES AND MUSCLES WITH THE SOOTHING MUSIC OF THE SINGING STREAMS THAT LIVE IN MEMORY.HELP ME TO KNOW THE MAGICAL,RESTORING POWER OF SLEEP. TEACH ME THE ART OF TAKING MINUTE VACATIONS OF SLOWING DOWN TO LOOK AT A FLOWER, TO CHAT WITH A FRIEND, TO PATA DOG, TO READ A FEW LINES FROM A GOOD BOOK . SLOW ME DOWN,LORD.
[b] PRAYER FOR THE RESTORATION OF HEALTH
O SACRED HEART OF JESUS, I COME TO ASK YOU FOR THE GIFT OF RESTORED HEALTH THAT I MAY SERVE YOU MORE FAITHFULLY AND LOVE YOU MORE SINCERELY. I WANT TO BE WELL IF IT IS YOUR WILL AND REDOUNDS TO YOUR GLORY. IF ON THE OTHER HAND IT IS YOUR WILL THAT MY SICKNESS CONTINUE, I WANT TO BEAR IT WITH PATIENCE. IF IN YOUR DIVINE WISDOM I AM TO BE RESTORED TO HEALTH AND STRENGTH, I WILL STRIVE TO SHOW MY GRATITUDE BY A CONSTANT AND FAITHFUL SERVICE RENDERED TO YOU, MY LOVING SAVIOR AND REDEEMER AND MY GOD.
I HOPE THIS HELPS READ THE FIRST ONE A COUPLE OF TIMES IT SEEMS TO ALWAYS CALM ME DOWN GOD BLESS YOU AND I HOPE YOU FEEL BETTER
11-19-2008, 06:56 AM
Those are beatuful prayers Sandra. I loved them both. Really loved the inner peace one.
Hi sick n tired. That was kind of cold of your friend, that person should have been supportive. Some unfortunately don't think before they speak. I don't think it means death, I believe its like lupus. Everyone's disease is different, some very managable like you said. Just helps being on top of your health problems to stay above the game, so to speak. So sorry your in so much pain and not sleeping. God bless you and may you get rest soon. Keep us posted on how your doing, hopefully better soon.
By the way, she's sssoooooo cute. How old is she now?
11-19-2008, 11:12 AM
Gentle hugs dear! what a difficult time you're having...
Sandra, what beautiful prayers -
The only thing we can be certain about is that we can't get out of this life alive.... but scleroderma is "certain death?" Well.... I do know someone who's had it for at least 10 years and is still going strong. She's had ups and downs (don't we all understand that?) but is far from "certain death."
May your day be a little better today - and may you and your doc get things in order so that the sjogrens and the scleroderma are under control too.
Some things that MAY help - but some you'll want to clear with your doc:
1. STAY OUT OF THE SUN. Yes, hatlady has her litany. 4" brims on hats, long sleeves, sunscreen...
2. Try increasing omega 3's -- fish oil, flax oil, ground flax
3. Add turmeric and ginger to your diet - as much as a teaspoon a day if you can.
That may help you fight some of this current inflamation, and help your meds work. BUT - only do the supplements and herbs if your doctor agrees!
hugs dear -
11-19-2008, 01:26 PM
Hi Sick N Tired,
I am sorry to hear that you are in such bad pain. I think that it was terrible that your friend would tell you that Scleroderma is a death sentence. I have had people tell me the same thing about Lupus and I have one really good answer for them and that is, well nobody gets out of this life without dieing and only the good lord knows when and how I will die and it will be the same with you. That usually shuts them down in a hurry. People just do not think before they speak.
I hope that you get to feeling better and that the doctors sorts it all out and gets your problems under control and gets you out of pain.
sick n tired
11-20-2008, 02:23 PM
Thank all of you for your response.
Sandra that was a very sweet prayer...thankyou for it.
Hatlady...I didn't know about the tumeric and ginger...one question..Do you think that sweet and sour ginger that the asians use would suffice? I know that is good for the digestion...at least that's what I heard. At any rate, thanks for the advice.
Hey Cheryl...how are you? Thanks for the complement :-) Lexie is almost 8 months old, but in that photo she was just 7 months in her bunny costume about to go "tricker treating"
Hey Kathy I did tell her that we all have to go sometime. :-) Thanks for your words of encouragement.
I am hurting today but not anymore than other days, I have to try to be better because I am watching Lexie. Sometimes it is hard when she is irritable, but she is still at a manageable age.
11-20-2008, 03:50 PM
Gentle hugs sick n tired
I'm so sorry you are hurting, it's unnerving when you do not have all the information you need. I hope your test results come back quickly and favorably.
I do not know if you use eye jell or not, but I use GenTeal, it's very gentle on the eyes and helps to moisterize.
I think you have more than earned the right to vent. That's not whining or complaining. You ahve certainly been here for us when we have needed a shoulder.
Keeping you in my thoughts and prayers. Hope you get a good nights sleep.
sick n tired
11-20-2008, 08:43 PM
SITC!!! ABig HUG for you.
Long time no hear :-) ...It has been a while since I could even type my brain stopped working and I couldn't write what I was thinking. It came out all gibberish. Like I was starting a new language, only nobody could interpret.. The doc told me that he is "keeping an eye" on the ms angle...whatever...:roll:
I was told to get eyedrops without preservatives...I just looked and I also use Genteal but the eyedrop kind and not the gel. I noticed that I can see better when I use them. I just thought that I was getting worse eyesight faster, but at least it isn't blurry when I use the drops.
11-21-2008, 10:17 AM
Hugs sick n tired,
Glad the drops are helping. I know they make a HUGE difference for me.
I understand about the trying to communicate thing...lately I've been putting weird words in where I cant think of the word I want.
Poor hubby just looks at me and I try not to get frustrated. At least I'm not like that all the time.
11-21-2008, 10:36 AM
Hi Sick N Tired,
I hope that you are feeling better. I know that at times I get the brain fog too and it is unnerving big time. Last May I had a bad spell where I thought that I had Alzheimers or something like that, but it turned out to be Pernicious Anemia. I still get the brain fog though.
Have you asked your doctor to perscribe Restasis drops for your eyes?
I hope that you have a good day.
sick n tired
11-21-2008, 12:20 PM
No Kathy, this was worse than the typical brain fog...i live with a fog cloud around me. Kind of like pig pen in the peanuts sketches only his cloud is dirt.
What it was like was a stroke...in fact that was what he checked out forst. It was like my mind would be thinking one thing and my fingers typed something different...total gibberish and forget me string too many words together for a meaningful conversation
For instance, if I were writing Kathy it might come out alarky...really distressing...so I stopped writing anything on this forum.
11-21-2008, 03:04 PM
Awww hugs sick n tired
Sorry... I didn't realize it was that bad for you. I'm glad you are able to post again.
sick n tired
11-21-2008, 07:09 PM
Thanks SITC...I did have Susan emailing me regularly so I didn't feel as cut off...my husband or one of my daughters helped with the responses..
I did think about you when my legs started really swelling...How you have a chronic problem with that...Sometimes it is the pits dealing with these things..
11-22-2008, 02:18 AM
Awww I feel for you.
It's amazing what you get used to though.
One of the ladies at work is going through a very bad time right now. She has swelling and pain through her lower back and hip. She's scared because the area that is being affected can cause long term bowel and kidney disfunction if not treated quickly.
The part of her spin that is involved has sensative nerves for controling these function.
She ask me how I delt with pain 24 hrs a day. Poor thing, so I gave her my ice pack from the office freezer... :shock: she lives with it in the back of her pants now :lol:
But she is able to get through the day. I hope she gets sorted out soon. She's terrified.
sick n tired
11-22-2008, 09:45 AM
That is awful...does your friend know why she is swelling? Is is autoimmune?
You know, just the thought of ice makes me ache and I know that is the only thing to bring down the swelling, but when it is just pain without swelling a hot bath really helps for a little while. I am not supposed to get in real hot water because of the sjorens(sp) but sometimes it is hard.
Girl, I really don't know how you can handle the weather up where you live, at least in the winter. It is in the 30's at night here and I am in soooooo much pain. How do you do it?
Of course, yall up there are sitting pretty when summer comes around and we are sweltering, so I guess it all comes out in the wash.
Hope you are having a great day..
PS...tell your friend there is someone in the states praying for her.
11-22-2008, 05:10 PM
She is worried sick. But they are moving very quickly to find out what is wrong.
She had a scope done on Thursday and goes for a scan this week. Ice gives her the most relief from the pain. She does take a hot shower but she's not much of a bath person.
I hope she gets her answers quickly, there's a condition that they are worried about. It could mean possible kidney and bowel issues if it's not caught quickly.
She's going to physio but it's not really helping that much.
Karen, you're very sweet and I'm sure the prayers will be appreciated.
Winters here are brutal, combination of the cold and damp :P
I don't feel any worse than I did when fall first arrived. So that's a good thing. I sure felt it when fall arrived. Ick.
We went to Arizona a few years ago in March. It was lovely to be warm, of course we came home to the worst snow storm of the winter :D
I found I was swelling up badly while we were down there. It's a dry heat so I was surprised about that.
Do you swell up with the heat?
sick n tired
11-22-2008, 05:28 PM
Yes I sure do swell up in the heat...mostly my feet and legs, but my hands get bad also. Summer can be brutal...actually I am not sure if there is a season that isn't in one way or another. I was able to go to the smokey mountains in Tennessee this fall. The beauty was spectacular and I actually felt almost normal, but in Texas we really don't have 4 seasons, or atleast not 3 mos each.
I, actually, am not a bath person, it is just the only way for me to get warm all over..kind of like a spa or whirlpool neither of which do I have.
What are they checking your friend for? I hope that she doesn't have something that can damage vital organs.
11-22-2008, 05:42 PM
I cant remember the name of the condition, I've never heard of it before, but basically they are saying that her lower spine seems to be affected and the nerves that control kidney and bowel function are located there.
So if it's not identified quickly there could be permenant damage done. They have told her that they feel they have her at a good time, but they need to get the answers right away.
She was bucking about having to take time off from work to go and have the tests done. I had a long chat with her about priorities and health is number one.
There's not one person there who would begrudge her taking the time to have the tests done. It's not a money issue she has gobs of time banked.
I snitched on her to "the big" boss. Asked him if he was aware that she was in GREAT deal of pain. Of course he had not noticed :roll:
But later on he was over having a very serious conversation with her and she has a different attitude now. So I'm glad I spoke up. I think she needed to hear from him that she can not mess around with having these tests done.
I used to laugh at "the snow birds" Canadians that fly south for the winter. Now I wish I could join the club :lol:
sick n tired
11-22-2008, 05:57 PM
So here is my idea...in the winter Sitc, you come down here with me(or shall I say you fly with the birds) and in the summer, I will come up there with you... :)
Btw...I read on another forum that you have lost 2 dear loved ones in the past few months...how are you doing? You are in my thoughts and prayers.
11-23-2008, 01:38 AM
Thank you for asking Karen,
Still very sad but coming to terms with it. My Aunt's husband seems to be coming around as well. Everyone is keeping him busy.
My Uncle's wife has gone into issolation. That's not unusual for her. But her three children are keeping close to her.
It's early here...4:46 a.m.
My darling little cat woke me up, on the off chance that I might like to feed him :shock:
My knees are very sore today....I think the cold snap we are in is affecting my legs. I was warm and toasty enough but I think the actual air pressure changes oh well who know's for sure....I just hurt like crazy today.
They could come up with a new reality show :lol: Trading Climates, I'd sign up for that!
sick n tired
11-23-2008, 08:05 PM
I am sorry to hear that you are in so much pain, girl....
I was unable to get out of bed this morning to go to church. My spoons flew south for the winter. Right now I am not able to borrow any because I can't even find those...I was hoping if anyone had some to spare then I need some.
No seriously I have nil energy...I HATE it when this happens...I am unable to function and then add the pain to that and just dig a hole and jump in... :x
Oh well...I am sure your sweet kitty meant well..maybe she just missed you :) I have a militant cat...fluffy...no other animal can come into HER house because she will eat it. The fluff rules the roost and everyone knows around here who the real head of house is.