Author Topic: Discovery Health Channel--Sjogrens  (Read 27303 times)

Schoolmarm Oma

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Re: Discovery Health Channel--Sjogrens
« Reply #45 on: April 13, 2008, 03:11:28 AM »
For those who missed it or can't get the Discovery Channel: I missed the episode but a friend saw it and told me about it. I was able to download the podcast from health.discovery.com/   and watch it on my computer.  We could all add more to the program, but it would take years to tell all of the complex symptoms and emotions of Sjogrens. I'm just thrilled that the episode was aired at all... the more publicity we can get, the better for us all!
Karen

Katybarstool

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Re: Discovery Health Channel--Sjogrens
« Reply #46 on: April 13, 2008, 05:13:52 AM »
Hi Irish

Thank you for your kind advice. I kept one ovary, but I think it decided it was past it's sell by date, as I was having the flushes even before leaving hospital. :-[.

By the way, I am a grandma - our eldest son has a 2 1/2 year old boy and our youngest son has a 22 month old (who is going to have a baby sister in August). 

I am going to talk to the health care assistant on Tuesday about my BP. You are right, just taking oestrogen is not the same risk as taking combined oest/prog. but health professionals are not always aware of that. In the UK, we don't routinely see gynaecologists - just if we are referred due to something more major.   

I have been taking celecoxib (for arthritis) for almost a year now, and that can increase blood pressure, but having said that, my bp is lower now than it was last year when I was pretty unwell, so I don't think it has necessarily caused the recent rise. My gut feeling is that that is due to the Sjs flare up.

Part of my problem - i guess, is that I am getting heavier as I struggle to do very much exercising. Even standing for more than a few minutes causes me shin pain, or knee and hip pain. I used to enjoy swimming, but developed a severe reaction to the chemicals in the pool, so now I jsut swim in the sea once or twice a year.  However, I know I am lucky in lots of respects, as I am still managing (just) to work full time. I'm office based, and sit down most of the day, which is helpful so far as the joints are concerned.

I can't believe it took me nearly a year to find this wonderful site. I guess I am still trying to find out more about this condition, and to come to terms with it. It's a learning curve for my husband and the boys too.

Happy Sunday everyone.

Kathyx       

irish

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Re: Discovery Health Channel--Sjogrens
« Reply #47 on: April 13, 2008, 11:28:13 AM »
kimbo, Golly gee!!!! You really made my day as I sit here looking like something the cat dragged in!!!

I know that I have the Irish tendency to talk and talk and it goes into my keyboard. I do give out more history etc than is necessary at times but I am not trying to draw attention to myself. I just want others to know that I am a real person with a history etc and that life is what it is. Sometimes things happen that we have no control over and how we react to them will certainly make a difference in our lives and the lives of those around us.

I still beat myself over the head for not being more aggressive in trying to get medical help and as I think back there are a few things I would have done differently in my qwest for a diagnosis. However, I really don't know if it would have made a big change in the time it took for me to get diagnosed or not.

I , too, am thankful for this group and the information I get from others plus the friendship of others I will never meet who understand what I am going through. Aren't we all just a great bunch!!!!! Hugs to all Irish ;D




heyamy

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Re: Discovery Health Channel--Sjogrens
« Reply #48 on: April 13, 2008, 04:26:40 PM »
Hey, Irish.
I for one appreciate all of the sharing you do here. It's not like we're a captive audience. If someone is not interested, s/he can just scroll past. But I think it's great that many people repeat things over and over again because sometimes people don't know how to check old threads for information or maybe their search argument doesn't bring up what they need.
 
So, thanks. It's great to "know" you and your history.
Amy

ktfabian

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Re: Discovery Health Channel--Sjogrens
« Reply #49 on: April 13, 2008, 07:10:05 PM »
Irish wrote: "When I started having "aliments at an early age I just never thought that much about it and worked my way through it or rested etc. As I got older the problems I had became worse and as I doctored I never, ever got a good answer and usually was made to feel like I was a hypochondriac. It took me a long time to get the picture of all this. My medical records were a trickle down through the years and even the really good doctors that I went to still placed the "nut" label on me. This is one of the most hurtful elements of my disease. I really think that if a couple of these doctors had looked outside the box and had not listened to the gossip in our medical center I could have had better intervention."

Irish-what you said here really rang a bell with me.  In my teens, I can remember that the terrible headaches started, I carried Visine with me everywhere.  There was the fatigue and dry, dry, dry peeling skin on my hands in the winter no matter what I did. 

My Mom was a nurse, but she never believed any of what I told her.  She called me a hypochondriac and actually tried to have me committed when my symptoms got really bad a few months after I got married.  When she would take me to a doctor, she would start out the visit by telling the doctor that she really didn't think anything was wrong with me, but she was tired of my complaining so she brought me in. 

It wasn't til I got to know her sister (my aunt) when my husband got transferred to a job in a small OK town that my aunt and uncle happened to live in.  She told me of the family history of thyroid disease and other immune problems and my new doctor did one simple test - found out the problems that were "all in my head" were actually symptoms of hyperthyroidism.

For what it's worth, by the time I was in my teens, my Mom was a very unhappy, full-fledged alcoholic who admitted she didn't like me at the time and she says she did the best she did. Oh well.

I didn't get to see the special as we don't have cable, but I'm going to go see if I can see in on my computer,
Tracy
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55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
Plaq, Medrol, Vit D, Arava, Rituxan, Mobic, Evoxac, Tumeric 1000mg daily, Cymbalta, Fiorcet, Klonopin, Soma, pain med.

irish

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Re: Discovery Health Channel--Sjogrens
« Reply #50 on: April 13, 2008, 09:26:02 PM »
Tracy,. It just goes to show you that we all have a past, a present and a future and how we accept and relate to these times can make a big difference in our lives.

We can't change the way our parents acted towards us nor can we change the health history that comes with us when we are born. We just have to do the best we can. Sitting and thinking "poor me" does not one iota towards making us a better person. Some of the greatest people I have known or heard about are people that struggled through adversity and succeeded. They may not have been famous or rich, but they impacted others in some way.

So here we all sit waiting for our chance to make a difference. "Hug a kid today" or whatever comes your way. Irish ;D

celticgoddess

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Re: Discovery Health Channel--Sjogrens
« Reply #51 on: April 26, 2008, 07:55:43 AM »
I had my husband watch the Discovery Health channel program I taped on Sjogren's and it gave him a better understanding.  He is very supportive and even he tells me to watch my limits.  They finally put Sjogren's in the Social Security "little black book" on March 20 or 30,2008.
Read it online.  Maybe now they will give me my SS.  I have neuropathy and it is getting worse on my right side and I am very afraid of losing the use of my right leg.  For years everyone thought I was making it all up.

I also had all my teeth filled as a child even before I got my second teeth.  I used to get what my mother called gum boils and she would make me rinse my mouth with hot salt water.  I used to complain that my legs hurt and would someone please carry me up to the age of 7 or 8.  Of course, no one paid any attention to the fact that something was wrong.

At least at 52 I am getting treatment.  And I am thankful to all of you who post on here so that I know someone out there understands.
I am starting to get edemas inside my right ankle and outside of my right calf.  I go to see an endocrinologist on Monday and who know what more tests are in store.  I just want to find some way to treat it before it gets out of control and my leg swells up. 

I guess my main problem is that, just as I adjust my life and think I have it arranged and know my limits,  I come up with some other problem to create even more limits.  I refuse to give up my gardening even if I have to scoot along the ground on my behind and plant tomatos.
Just lost my mom on April 8 to ovarian cancer and it was a long month of going with my sister and sharing her care until the final 4 days when the pain got so bad we had to give her the morphine.  She was deaf so she could no longer read our lips so we had only touch to communicate.

It has just worn me out and I am trying to get out of the house now that spring has come and try to get back some energy.  The sunshine helps and I am working toward strengthening my left leg and my arms in case I do lose the use of my other leg.

To all of you, I appreciate reading your posts and it encourages me to do more.  I don't usually get on to post much because I have carpal tunnel in both wrists and typing is hard for me.  But I will try to get on more often.

celticgoddess

Scottietottie

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Re: Discovery Health Channel--Sjogrens
« Reply #52 on: April 26, 2008, 10:11:58 AM »
Hi Celticgoddess  :)

I'm another one who's always had lousy teeth.  I had nearly every baby tooth taken out because of gumboils (not all at the same time) I remember my legs hurting too - particularly in bed at night. I used to tell my parents my klegs were 'bored'. I thought if they moved they would hurt less but it never really worked.  I was told I had 'growing pains'.

Condolences for the loss of your mother. That whole experience must have been very draining.

You mention edemas and also carpal tunnel syndrome. Have you got a doc keeping an eye on your thyroid? Both things can be symptoms of hypothyroidism - and of course other things as well. If they are testing anyway - thyroid function tests may well be an idea!

Take care - Scottie  :)

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songbird

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Re: Discovery Health Channel--Sjogrens
« Reply #53 on: April 26, 2008, 01:06:59 PM »
I saw it and they didn't make it out to be nothing. She did a great job of talking about all she had gone through for so many years without a diagnosis and even feeling like she was crazy. I kept saying the whole way through I bet she has Sjogrens I bet she does... I have the same symptoms all the time. Sure enough after 50 years she finally has help. I sure am glad I didn't have to wait that long! I was glad my husband was able to watch with me I think it helped him to understand as well.

salsen

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Re: Discovery Health Channel--Sjogrens
« Reply #54 on: April 26, 2008, 02:18:18 PM »
Katybarstool -  just read your post about BP.  I tend to have one that likes to be slightly erratic even with medication.  Two factors play a big part in this :   pain associated with pn and autonomic neuropathy.  Both of these can effect your blood pressure.   I lost 35 pounds about nine months ago and instead of helping the BP it became higher and the medication had to be increased.  As my doctor explained even if the autonomic neuropathy is the culprit the pressure still needs to regulated. 

It is interesting the responses received on those who have viewed the show. There is no definitive face of SJS.  We all have a connection through different symptoms but I would venture to say very few of us have the exact same symptoms or have progressed with the same rate with this disease. 

I had to go to the Urgent Care today because for some unknown reason I have a spot in the back of my neck that has become infected.  Since my skin breaks down fairly easy there is no telling what caused it.   Both nurses and the nurse practitioner hadn't  ever heard of SJS.  Then on to the pharmacy and again not a clue as to what I was talking about when asked any medical conditions that should be listed.  They all got a spelling lesson today LOL.   Needless to say more shows like this are greatly needed. 

Irish keep up the talk!  We can have a grassroots campaign to enlighten the world about SJS!

eyeamdry

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Re: Discovery Health Channel--Sjogrens
« Reply #55 on: April 26, 2008, 06:25:47 PM »
Quote
I also had all my teeth filled as a child even before I got my second teeth.  I used to get what my mother called gum boils and she would make me rinse my mouth with hot salt water.

Oh my!!!!!! Gum boils, I remember them well.  I don't think I've heard the term for......oh say decades.   

Care

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Re: Discovery Health Channel--Sjogrens
« Reply #56 on: April 26, 2008, 09:27:53 PM »
celticgoddess

So sorry to hear of your loss.  It is so difficult to lose a parent.  I do understand.  Time does help.  My dad died of cancer. Changes our lives forever.

Hugs
Care

irish

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Re: Discovery Health Channel--Sjogrens
« Reply #57 on: April 26, 2008, 09:52:14 PM »
celticgoddess, My sympathy to you on the loss of your Mom. I hope that you have been able to get some rest and to relieve some of the stress brought on by this event.

Also, I have never heard of gum boils. I would imagine that this was some sort of infection around the base of the tooth. Boy, you learn something everyday. I have gone through a lot with my teeth. They sort of ruled my world for about 15 years and were a problem since I was young. Had to have one of my baby teeth pulled in the middle of the night when I was about 7 years old. Imagine it was abscessed. An old dentist that reminded me of a "horse doctor" did it. It was a miracle that I didn't get bad infection.

salsen, Hope you get over this infection without any unususal issues. Irish ;D

Katybarstool

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Re: Discovery Health Channel--Sjogrens
« Reply #58 on: April 27, 2008, 04:13:21 AM »
Ceticgoddess

I'm so sorry to hear that you have had so much to cope with recently. My heartfelt sympathy goes to you.

Teeth - mine were a nightmare. Between the ages of 16 and 18 I was at the dentist nearly every week. Usually with broken or cracked teeth or dental abscesses. I eventually had half of them pulled aged 19 and the other half when I was expecting my first child at 21.  I was glad to see the back of them ;D

Interestingly, I have also had joint pain since my early teens, and periods of extreme tiredness that were always put down to depression. I'm  51, and  have only been diagnosed since last summer.  I could have kissed the (very grumpy) rheumatologist, who diagnosed me :D.

Happy Sunday everyone.

Kathyx   

Linda196

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Re: Discovery Health Channel--Sjogrens
« Reply #59 on: April 27, 2008, 05:57:14 AM »
Hi Celticgoddess,

I'm sorry to hear of your loss. I, too, lost my Mom to ovarian cancer, and I remember too well my sister and I sitting with her, trying to anticipate her needs as she became to weak to let us know. As time passed, I was more and more able to remember the happy times, and the fun things that made it easy to celebrate Mom's life more and grieve her loss less, that time does come.

I remember a lot of "growing pains" and dentist visits as a child too, but I had Rheumatic fever when I was 5 (at least that's what was diagnosed) so it could go back to that. I'm sure the poor teeth were a direct result of long term tetracycline (brand new wonder drug then) to treat the RF.
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