Author Topic: Discovery Health Channel--Sjogrens  (Read 24767 times)

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13439
Re: Discovery Health Channel--Sjogrens
« Reply #30 on: April 08, 2008, 09:00:00 PM »
I guess I looked at the show a little differently than some of you. I thought they gave a good overview of the disease and they sure made it known that doctors don't pay any attention to people with these complaints. They mentioned dental cavities, eyes, fatigue, childhood stroke I believe, aching joints and muscle pains, gallbladder issues, heartburn, inability to tolerate bright lights and some I probably don't remember.

The thing that was interesting about the nurses training, army training and so many jobs was that she had her good days and bad days/or flares and remissions that became worse as she got older. The thing that was good about this was the way they pointed out that she was able to do these things but it darn near killed her and then the day came when she couldn't do it anymore. This is pretty much the way it is with most of us. We push ourselves until we get up one day and we have reached the wall and can go no further. If anything any medical personal watching this should get the idea about how ill people can be before they throw in the towel. Docs, we are all out there pushing and doing our best---we are not nut cases.

The reason I think this was an interesting way to put this was because we are all different in our ability to endure and snap back from physical and emotional setbacks and at the same time it let people know that if you are having any issues that are similar to this maybe you had better be more aggressive about getting medical intervention.

I don't think that 2 hours would have been enough time to cover issues as there are so many. Besides, I am sure they don't want to scare people to death.  Just my humble outlook on the show. However, I could not believe how slow that doc was about checking out the gals edema in the next disease on the show. They talked about so many months and then it turned out it was only 5 months. I really thought they were going to mean 12 months or so. It was very slow of that doctor not to run more tests by the 3rd month. A normal person doesn't have that type of swelling in their legs. Not even too much salt would do that!

We shall all wait for the next exciting episode. I watch it as much as I can as it is very interesting. Irish ;D

Care

  • Guest
Re: Discovery Health Channel--Sjogrens
« Reply #31 on: April 08, 2008, 09:17:52 PM »
Good points Irish!  Well put. I just hope some doctors watch it.  What saved me was my primary care doctor.  She told me I was sick when other doctors suggested I exercise.  Shoot, I could barely move well enough exercise.  She insisted I was ill and sent me to The Cleveland Clinic.  My doctor there was number 9.  Eight others had done surgery, suggested I just needed to exercise or sent me to PT.  They recommend PT when they don't know what to do for you.  So your primary care doctor is your COACH. She said I was SICK!  Ha she was right!

Try to have the very best primary care doctor.
Care

heyamy

  • Guest
Re: Discovery Health Channel--Sjogrens
« Reply #32 on: April 09, 2008, 06:08:17 AM »
Hi, Irish.
It's hard not to want more, more, more, especially for those of us who are not familiar with the program. We want a mini-series! Heck, I was still unsatisfied during the next segment with the woman and her kidney disease. I too can't believe that poor woman couldn't even get any interest from doctors for so long. And when she was going on that vacation to Florida, I was saying, "No! Don't go!"
 
At least one person in this thread commented that the Sjogren's segment seemed to imply that you can soldier through the pain. I didn't really see it that way, as the woman had to keep quitting things and couldn't even get on the floor to play with her son. But I think this disease and any similar insidious (as they often refer to it on webpages that describe Sjogren's) disease makes you supersensitive to criticism or skepticism because the progress can be slow and that just makes it more complicated to diagnose or adapt.
 
She did soldier on, but you are right that all of us eventually have to quit things and she did too. But during those years when we don't know what is happening, we tell ourselves like I did, that we're just lazy. Or imagining things. Even on days when I'm feeling good and have energy, I have this strong urge to remind people that this is rare. Because it is still difficult to accept that I can't do things like I should be able to at this age. And I still do need support from people because I'm having enough difficulty reminding myself that it isn't in my head. That just because you can't measure fatigue, it doesn't mean it isn't a huge issue and stops all activity. It is not laziness. Or depression. It's just my body.
 
It's what I was saying in a previous post. The medical community often assigns blame to us when they don't have answers. It's similar to society blaming the victim, I suppose. And I also suppose I did or still do the same. But I think this explains our sensitivity when programs mention how a person pushed past the pain. However, I do think this program presented her condition fairly: she truly did reach the wall, as you put it. And she reached it over and over again as her condition or lifestyle changed.
 
Not to open a can of worms, but one thing that bothered me is that the narrator and the way her childhood was presented seemed to place blame on her parents. My parents plan to watch this episode so I warned them to try to head off any guilt the program may inspire. I had a lot of similar childhood experiences and the last people I would blame are my parents.
 
All in all, it was really nice to see this. Thanks for alerting us!
Amy

Waldop

  • Guest
Re: Discovery Health Channel--Sjogrens
« Reply #33 on: April 09, 2008, 10:12:50 AM »
I am having a poor me tonight guys. Went back to work today on my meds for what I know is bronchitis. Walking in this morning,one says, feeling better now ? My fibro also hurt bad-muscle spasms.

I read here about this program, and so glad, but don't think I get it, because we just have the basic family channels package.

It really hit me what you all said about the gallbladder. I had it tested once, and doctor said dye wouldnt go in, because it was dried up and non-functional.

I turn 55 in May, and feel like a LOT has been lost.

The other day when I seen regular gp she said mrs.p you need to get out and walk more.

WHAT? HOW?

Husband let me know her office called and said we are to come in this saturday for a follow up.
I am flaring right now and she will probably want to know AGAIN when to set up for mammogram etc.

Oh Brother-The way I feel-You guys might tune into the news !!  LOL

susanep :o

Susan,

I hear oodles of people with Sjogren's that had some sort of gall bladder problems. Then of course, there are others that have other problems to deal with. That's usually the case with most autoimmune diseases. We don't all have the exact same path, but the steps are very closely related.

That was quite interested what they said about your gall bladder. Perhaps they should run a clinical trial on those who have Sjogrens and gall bladder problems. It would be interesting to find out the results.

hugs
Barrie

Waldop

  • Guest
Re: Discovery Health Channel--Sjogrens
« Reply #34 on: April 09, 2008, 10:19:31 AM »
I find autoimmune diseases to be most fascinating, in and of itself. It's a shame that it's not done nearly as often as it should be. There are more people who suffer from these illnesses than people realize. That's why I do like bonding with others who share the same common enemy.(sorta speak)

What I especially liked about the segment on the show was the fact that as Linda was telling her story, you felt the way she felt. As I've stated on numerous occasions, you can't feel that way unless you've been in that person's shoes and that's exactly what we have been in!! Maybe our symptoms aren't exactly the same, but we know how it is to wake up in the middle of the night so parched nothing seems to help.

Nevertheless, we do appreciate you letting us know about the show. Maybe there will be more out there one day.

hugs
Barrie

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13439
Re: Discovery Health Channel--Sjogrens
« Reply #35 on: April 09, 2008, 09:57:45 PM »
One thing I want to add has come to me slowly over these past years. My mother was 36 when she had me(1st child) and had my sister at 39. I hardly remember my mother when she wasn't being emotional, having bad days, crying, having stomach pain, shoulder pain, fatigue etc. As she got older she had dry eyes and would always be clearing her throat and needing to get a drink when she talked on the phone. She just wasn't able to do much around the house and I did the washing, ironing etc. Sister did things also. Mom was either working at the store or home sick.

Now, interesting thing is that we didn't live near relatives and my folks had a business that sister and I worked in almost every day of our life after age 12 or so. We did not know any better as that is the way it was and we just dealt with it. My mom had a "nervous breakdown" (I now know why she had this breakdown--she was sick) when I was 10 years old and after that I know that she was treated differently by the doctors in the community. Doctors who then became my doctors-- and I now know that the baton was passed onto me and my sister. The docs thought of my mother as that emotional neurotic woman and hence her kids were also.

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.

I have had to work through this over time and it has not been easy. I still have a couple doctors I am going to write letters to and let them know about my health status. One of them was a really good doctor but he could be a royal you know what. I worked with him in the professional setting and when I was a patient he refused to send me for an ENT consult after a prolonged illness which entailed see 3 doctors who treated me for heaven knows what.)I missed 4 months work and started to lose my hearing and had terrible balance issues) Finally my hubby took me to him and he said I had a roaring ear infection(no ear ache til after antibiotic started and dizziness was terrible) plus I had walking pneumonia. He did not like it that I challenged him later and he also treated me like a nut.  Turned out the ENT sucked pus out of my ear and put in a tube.

Now, sorry for all the info but you needed to see the "before picture" and now I will give you the "after picture". One day I went to my psych clinic for a med check and who should I have to sit by in the waiting room. THIS DOCTOR. I did not say one word to him and he didn't say one word to me. He was embarrassed beyond belief and I didn't care because I KNEW that depression was a physical disease. I loved the ending on that one!!!!

So, unbeknownst to us our family issues can have a really big impact on us health wise. The thing is if you are brought up in that kind of an environment where life just goes on when there is illness(know illness or unknown illnenss), you just keep working and coping and going on with life no matter what.

I will also tell you that one of worst days of my life with this disease and doing work that had to be done was back in about 1979. We were remodeling our house and the north end of the basement wall was out and a big new basement dug but not closed in. Sand all over the house. The upstairs was all 2x4'x except for the bathroom. My hubby had a couple acres of hay to bale and the boys had to help him with that. Buttt, before the hay was done, we butchered 50 chickens and I ended up finishing up on these after dinner while the boys helped with bailing.Butchering chickens if bloody hard work. I had to cook meals and clean up the kitchen in the midst of this, but I was able to push my way through it. The human spirit is a wondrous thing.

I also had my period and it was a bummer of a month. It ended up that my folks came unexpectedly after supper and then the minister and his wife came unexpectedly a little later. Thankfully, we had all had baths etc by then. But, this was at a time when I was having an escalation in symptoms of undiagnosed myasthenia and sjogrens. I live in the midwest and there is a really strong work ethic here that has tickled down through generations.

Now, I never really told my hubby  how I was other than that I was really tired and hurt all over. I didn't know any better. I thought I was really tired and hurt. That is why we can push on so fully through these diseases. We have slowly learned how to cope with pain, weakness, illness, changing our lifestyle and schedules to adapt to our health status, etc and just blame it on being a mother and being tired. I know that I had to change jobs quite a bit when I was younger as I would just plain wear out and get sick and not snap back. I didn't know any better.

I can really see how this Linda was able to do the things she did. If we get an illness slowly and then it sort of goes into remission off and on, we are able to just keep pushing.We just work on the assumption that we had this before and it went away and now we have it again and it hasn't killed us, the doctors tell us nothing is wrong so it just must be something that must be endured and it is. My take on life as I know it from my generation. Irish ;D

heyamy

  • Guest
Re: Discovery Health Channel--Sjogrens
« Reply #36 on: April 10, 2008, 06:16:24 AM »
Wow, Irish. Thanks for sharing your history. I grew up in a "stiff upper lip" household too but I see a lot of value in it because we always have to plod on, even when we are taken seriously by doctors. It may have made me feel more guilty when I finally hit the wall, but I can overcome that.
 
What really made me angry while reading your history is how you and your mother were treated. Sure, things were dismissed from time to time with me but I never really, really hit that attitude until three years ago when things went out of control. I'm still burning up about those doctors. I can't imagine the rage and despair and demoralizing you and your mother felt for so long.
 
Is your mother still alive? I'm so sorry for both of you.
 
Amy

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13439
Re: Discovery Health Channel--Sjogrens
« Reply #37 on: April 10, 2008, 05:55:17 PM »
Amy, There are quite a few of us out there with a "stiff upper lip" and we have all managed to survive and learn a lot while we were at it.

My mom passed away in 1984 at age 78 and I didn't realize until many years later that she was suffering from sjogrens.She was not very good at coping with her illness as she was very sensitive. She was born in 1906 so that probably explains a lot of how she dealt with things. All I know is that as I became more ill I would find myself relating to what she went through. They didn't know about this disease somuch back then.

I have never had a thin skin and I did not get totally freaked out about things for some reason. I have no idea where I got this personality trait but I have always used humor to deal with things and it has worked well for me. Also, my faith is very important to me and has sustained me always.

I always say that I must be a little slow because I don't take offense at things people would say or did to me at the time and just would use humor. On the way home or several days later it would occur to me that maybe I should be more upset about some of these things. I guess there aren't a whole lot of things that I think are worth wasting time and energy about. That is not to say that I haven't lost my temper and been assertive/aggresive at times but when dealing with doctors I would always get the same thing---she's a nurse and she is over reacting.

You don't have to feel sorry for me because in spite of everything healthwise, etc I have been extremely blessed in this life. I have a great husband and 3 boys with nice wives and grandkids, etc. There are lots of things I haven't been able to do but there are so many other blessings that I have experienced. Life is what we make it. If we want to sit and feel sorry for ourselves it is best to set aside a few hours, cry and moan and groan, get it over with and get on with life. Hope all is good at your house. Irish ;D


Shari

  • Guest
Re: Discovery Health Channel--Sjogrens
« Reply #38 on: April 10, 2008, 08:47:39 PM »
Gurs~~~Just wanted to throw in that i also had my gallbladder removed that was, "just not working".  No stones or diesease.

Unfortunately I do not get the channel but will try to catch it at my friends house on one of the dates that was so kindly listed.

~~Shari~~

salsen

  • Guest
Re: Discovery Health Channel--Sjogrens
« Reply #39 on: April 11, 2008, 10:52:53 PM »
Irish - I agree with you.  I thought the show was fairly informative for the short amount of time they have for each condition that is presented.  Like all other autoimmune diseases there is a ton of other things that go into the mix and makes life more difficult.  The important issue though is that SJS was given an airing.  So many people know nothing about this disease and are not aware of all the different areas of the body it can affect.  Hopefully this will help to awaken the public in general and many professionals to look a little harder and seemingly unrelated symptoms. 

It caught my eye about the gall bladder issue as this first became a problem for me back in the early 1990"s.  That is about seven years before other very significant symptoms began to pop up. 
Makes me wonder if the process actually began much earlier than I suspected. 

I think we all gear our selves up and push through when we absolutely have to.  I did this past Sunday to cook for about 20 people on the last day of my brother's visit.  Monday he headed back to California.   Did I pay for it the next two days  -  you bet!  Was it worth all the trouble --
YES!    I had not seen my brother in five years, it was well worth th pains to have all my family together again for a few hours. 

Mind over matter is a wonderful thing even for a few short hours! 

Lets hope more shows will attempt to present SJS  to the viewing audience.  Public awareness helps to bring about research funds.  We can only hope.

Katybarstool

  • Hero Member
  • *****
  • Posts: 3994
Re: Discovery Health Channel--Sjogrens
« Reply #40 on: April 12, 2008, 08:04:43 AM »
Hi everyone

I've been searching through all the tv listings, and altho I can see the Discovery Health Channel, I cant find any mention in the UK about the programme, which is a shame.

However, Irish Iidentify with you about the 'nut' label. I'm 51 now, had lots of illnesses as a child, including epilepsy, and had lots of joint problems at 14, which were put down to neuritis. I was marrried at 18 and between the ages of 22 and 25 had three children and once they were at pre-school, went to college alongside a part-time job and gained a honours degree.  It was hard work, particularly as two of the children had epilepsy, but I seemed to have enough energy to deal with things, until I reached about 40.  From then on I had tiredness, depression,menstrual problems, IBS, dry eyes, skin problems, ear problems ... At around 46 had a really bad chest and was diagnosed with asthma and bronchiectasis and had a tough time getting the meds sorted. Then the gyny problems got worse and aged 48 had two minor gyny ops and then total hysterectomy. Then within the next year, Sjogens and osteo arthritis. I have also had many episodes of 'flu-like symptoms.

Sorry, I don't mean to moan, but, as many of you have identified, my gp - and the other practitioners in the practice treat me as a total nut.  I have reached the stage now where I do my best not to have to visit the healthcentre, even sending a postage paid envelope for my prescriptions.  I am now in the middle of a major fatigue, and am having to take a days annual leave each week just to get me through at work. I know in my heart that I ought to go for a checkup, but you know, you get to feel a fraud for so long, that it takes a lot of strength and determination to make that appointment. It just seems too much like hard work.  Anyway, I have rambled, so thank you for perservering.

Could I just ask a question now? Does anyone find their blood pressure increases when they are extra fatigued? I'm also worried about having that checked, as I don't want to have my hrt or celebrex withdrawn due to high bp.  Woe is Kathy :'(     


gurs

  • Hero Member
  • *****
  • Posts: 2709
Re: Discovery Health Channel--Sjogrens
« Reply #41 on: April 12, 2008, 11:26:16 AM »
Kathy,

I was told by many of my doctors that BP usually increases when your really sick or feeling ill.
I have very low BP, but a few super bad flares, it just went way up, and came back down when I was feeling a bit better....

Gurs
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Shari

  • Guest
Re: Discovery Health Channel--Sjogrens
« Reply #42 on: April 12, 2008, 04:16:29 PM »
Kathy~~I have issues with regulating BP.  I will have to keep track of the circumstances.~~Shari~~

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13439
Re: Discovery Health Channel--Sjogrens
« Reply #43 on: April 12, 2008, 07:05:08 PM »
Kathy, You don't have to worry about moaning and groaning here. I just did that really lengthy post about my childhood because I wanted others to know that sometimes life can "sucker punch" us and we don't even know it. I still loved the restaurant business in spite of having to work so much.

Anyway, you have had your share of  ailments and they do pile up don't they. I guess if it was me I would now push forward and get some help. There is much more known about autoimmune than previously and now that you are older (pardon me) you will be more apt to be listened to also. Age is a good thing at times. Make sure to keep a log of all your pains, aches, fatiuge and give precise descriptions of what is hard for you to do with your fatigue.

Also, many of the people here are being treated sooner with Plaquenil as docs are learning to try and control the "beast" earlier. The truth of the matter is that you need to get that blood pressure treated before it damages your kidneys or you wake up paralyzed from a stroke. Yes, I am instilling fear into you. I don't think that they will necessarily take you off of your HRT because of  blood pressure. Did you have your ovaries out?? If you did you are probably just on estrogen and that is a whole different ball game. You need to talk to your doc and your gynecologist. You need to take care of yourself cause some day you will be a grandma and that is really fun!!! Irish ;D

kimbo

  • Hero Member
  • *****
  • Posts: 827
  • Love never fails
Re: Discovery Health Channel--Sjogrens
« Reply #44 on: April 12, 2008, 07:54:47 PM »
Irish, I so appreciate all your input in all your posts. I have not been posting much and I am still reading and learning and soaking up all you Heroes. You really are heroes. Thanks for your history and for sharing your path in this health issue. I think you might even be more beautiful than that discovery lady.
Diagnosed March of 2007. SJS/ RA Positive at 80  International-SSA strongly positive at 811-SSB 273
ANA positive at 1:1280
Hashimoto's
Gabapentin, propanol, Celebrex, Synthroid, Cytomel, vitamin D, B complex, Omega 3 complex, and multi vitamins; At 62, I seem to be a low maintenance sjog