Author Topic: Crap is what it is!  (Read 18102 times)

inga

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Re: Crap is what it is!
« Reply #15 on: August 31, 2010, 09:59:48 AM »
I think it would be better if people embraced the idea of Undifferentiated Connective Tissue Disease if they have a simple +ANA.  I think if all AI disease were combined, into CTD, we would get more research funding.  I think people in the course of diagnosis would do better to have this diagnosis and be recognized as being ill, but, understanding that this condition can evolve.

 SJS implies the dry eye syndrome...and it is getting to be the new default diagnosis.  Sicca can be many things, and if Sicca is tagged Sjogren's the real diagnosis can't be reached.

Be open to having Small Fiber Neuropathy, and no AI disease if you don't have any AI markers....it's OK.  Neuropathy is a real disease and they have a great forum. 

If one has SSA and SSB and symptoms, then  you have a classic case of Sjogren's.  The rest of us, and most of us, I gather are in various states of AI disease and diagnosis, or have something all together different.

For me, the neuropathy has been quite disabling, but so has the Lyme Disease and the very severe high speed head on I was in, with my children, when they were 4 and 6.   I consider myself a UCTD, since the lip biopsy is not enough to convince me....even if it convinced my doctor.

I don't feel I need to tell any one I have a specific AI disease.  For those going for disability, yes, this is an issue.  I haven't filed, but for those who are, expect AI disease to be a real nest of contention for disability.

 Sure anger does have its place, but it has to be worked thru.

Venting is good...maybe we need one thread on venting....I have my days I need to vent.

Bad days are fine, we all have them.  Long term anger and depression necessitate professional help.

On young moms and babies, it is difficult to see young people diagnosed with disease. I have several adult children dealing with very difficult medical conditions, far more difficult than mine.....and mine isn't good. They are living life, working jobs.  One daughter has had 5 surgeries in 2 years....serious ones....and in that time, worked a job, finished a masters in engineering and qualifed for Boston Marathon....TWICE.

On babies, I have one here at home....7 months and  I have him for at least 2 years, maybe life, who knows....yep, it is hard to get up and care for him....try doing it at 58 and in two weeks....doing it with a cast and pins.  No one else can take him without undo hardship. Not to mention, I was sick way earlier in my life and dealt with 2 decades of this being in my head, I had to put my energy into my family....I could not even stop to think about being sick, other than taking 3 days off every two weeks from my duties, to have my migraine and puke.  I did not have the luxury not to work, or not to deal with my kids and their lives, which in my book, were more important than mine.

AI disease is painful....it hurts...it makes you sick like you have the flu or drank too much....but, hopefully, we can live a near normal life span.   One just has to adjust.  There is no option but to adjust.

I think what makes this forum difficult  for every one is some people see Sjogrens as dry eyes and dry mouth and can't comprehend what others with joint pain, neurological damage, organ damage are griping about....and the systemically affected can't understand why people with with lesser complaints are even on a forum to begin with, instead of out grasping every ounce of life.

I try to do this exercise now and then....Get up and NOT mention my disease, not once, not one reference to pain, aching etc...not log onto a forum, not google it...nada...just live life like I never heard of this.  When I can do this several days per week....then I think I will be more mentally balanced.  I will be living life, as it is meant to be.....even if I am sick.  I have yet to succeed at this ONCE....but I am trying.

shevonne

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Re: Crap is what it is!
« Reply #16 on: August 31, 2010, 10:13:43 AM »
Yes Inga!  I am trying as well!  Right now I am having a moment where I needed to vent and to get support from some of the members here!  I too will keep trying and hopefully reach the goal of being mentally balanced.  Sometimes I need to reach out for support to people that understand!  Thanks to all of you for your understanding!  It does help!  Please don't get tired of my venting because it truly helps to get positive feedback!  You are my family away from my family!   ;)

navydad

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Re: Crap is what it is!
« Reply #17 on: August 31, 2010, 10:50:40 AM »
Its just so darn confusing Inga,, I agree that SS should include the ANA, or bloodwork or a positive lip biopsy,, and your right,, I probably need to just consider a small fiber neuropathy,, of unknown orgin,, at least for the time being,, but since just about every thing has been tested for what might have done it,,I think it will remain unknown,,
  And when your able to stay aware from the forums,,, please pass along your secret so I can do the same,,,Hope the little one isnt causing many problems,, but no matter how sick moms or grandmas are, they seem to have that little bit of reserve left,, when mine were little and would cry to be fed in the middle of the night I would feign sleeping so my wife had to get up,, now she has to do the same thing with me when she hears me moaning at night from the pain,, she had to stop sleeping with me,, she said I thrash around all night,, sweat heavily,, you get the picture,, I have yet to find any med that lets me sleep all night,, 

bloodless

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Re: Crap is what it is!
« Reply #18 on: August 31, 2010, 12:39:08 PM »
Irish, I think you're right that the summer has seen more upset posts. My theory is the summer is for getting out and about and we can't. In the winter, it's not as noticable that we can't go for walks, ride bikes, camp, etc..., so we don't feel the loss of our lives as much. I know that's true for me.
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

inga

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Re: Crap is what it is!
« Reply #19 on: August 31, 2010, 12:49:01 PM »
Navydad, I think a trip to the pain clinic is in order.  Have they discussed a morphine pump for  you?

I have NOT figured out the trick how to live on, daily and not visit here...or my neuro forum...it IS hard to live with this....I am thankful for the days when I have a distraction and don't have time to ponder all this.
I am also thankful for the days I CAN vent.....and the days when I get the ever loving kick in the rear, which I need occassionally.

Joe S.

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Re: Crap is what it is!
« Reply #20 on: August 31, 2010, 01:03:58 PM »
There are lots of non medication pain management techniques. Unlike pills, they take practice to become effective.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

navydad

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Re: Crap is what it is!
« Reply #21 on: August 31, 2010, 02:17:20 PM »
I have a appt finnaly with a pain clinic,, the same one that tried to cripple me for lifewiththat steroid shotin the spine near the hips,, I love livingon the edge,, sorry for non spacing,, my fingers are giving out,,

Joe S.

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Re: Crap is what it is!
« Reply #22 on: August 31, 2010, 02:25:41 PM »
Good luck Navydad. Most pain clinics are ripoffs for the insurance companies to write off patients.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Rob_MI

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Re: Crap is what it is!
« Reply #23 on: August 31, 2010, 02:45:51 PM »
I'm not angry about sjogrens but some of the problems I've been having in the past month, stroke like symptoms, severe vertigo, dizziness,  body jerks, muscle twitches, hand and finger tremors.  When someone suggests that someone is angry, thats their opinion and not necessarily the right one.  Its a snap judgement.  I've never ever even given thought to being angry.  To me this is very scarey stuff.  Not like the usual aches, pains etc symptoms.  My legs and arms feel rubbery.  If that don't scare anybody then I must really be a wuss.  I'm not sure whats going on or if its sjogrens related or not but I suspect it is.  Been on plaq 2 months.  Has not helped any thus far.  Symptoms have increased steadily.  So, if anyone has inferred that I am angry, you are most incorrect.
« Last Edit: September 01, 2010, 10:49:59 AM by Rob_MI »

Joe S.

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Re: Crap is what it is!
« Reply #24 on: August 31, 2010, 05:40:06 PM »
Rob_MI, Please see your Dr about these symptoms ASAP. Thanks.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

DragonflyC

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Re: Crap is what it is!
« Reply #25 on: August 31, 2010, 05:53:39 PM »
Shevonne, having Sjogren's is tough, but I believe you that you are tough, too! 

Try to remember that Sjogren's is often a VERY slow progressing disease, so you might never get worse, and if you do, it might be a long, long time from now. 

Also, stress is the enemy, especially for people with AI issues.  Letting yourself focus too much on what "might be" won't help, and it could hurt you.

Rob_MI

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Re: Crap is what it is!
« Reply #26 on: September 01, 2010, 05:27:08 AM »
Thanks Joe S.  Am having a battery of tests now(MRI, EEG, etc.) by a neurologist.  I see my rheumie in 12 days.

gphx

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Re: Crap is what it is!
« Reply #27 on: September 01, 2010, 10:04:43 AM »
Everyone's SS is different. Personally I have had symptoms like Rob's and Navydad's.

Being significantly disabled but the doctors not being able to find lab evidence to pin it on so one might be eligible for disability and other forms of assistance is being caught between a rock and a hard place. Disability requires proof. 'I'm too tired to do that', 'I'm too weak to do that', 'I'm in pain', just don't cut it. If the doctors can't figure it out you're screwed and lack of funds can ultimately be just as fatal as disease when there's nowhere to go and nothing to eat.

Personally I find remarks along the lines of,'It could be worse at least you don't have cancer', highly offensive. Some days I wish I did because it could be proven, possibly be treated, or, if not, at least it'd be fast. If you 'just' have dry mouth and dry eyes (not to minimize that either) good for you but please don't judge the rest of us because everyone's problems are different.
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

navydad

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Re: Crap is what it is!
« Reply #28 on: September 01, 2010, 10:14:07 AM »
Everyone's SS is different. Personally I have had symptoms like Rob's and Navydad's.

Being significantly disabled but the doctors not being able to find lab evidence to pin it on so one might be eligible for disability and other forms of assistance is being caught between a rock and a hard place. Disability requires proof. 'I'm too tired to do that', 'I'm too weak to do that', 'I'm in pain', just don't cut it. If the doctors can't figure it out you're screwed and lack of funds can ultimately be just as fatal as disease when there's nowhere to go and nothing to eat.

Personally I find remarks along the lines of,'It could be worse at least you don't have cancer', highly offensive. Some days I wish I did because it could be proven, possibly be treated, or, if not, at least it'd be fast. If you 'just' have dry mouth and dry eyes (not to minimize that either) good for you but please don't judge the rest of us because everyone's problems are different.

AMEN

Rob_MI

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Re: Crap is what it is!
« Reply #29 on: September 01, 2010, 10:26:43 AM »
Everyone's SS is different. Personally I have had symptoms like Rob's and Navydad's.

Being significantly disabled but the doctors not being able to find lab evidence to pin it on so one might be eligible for disability and other forms of assistance is being caught between a rock and a hard place. Disability requires proof. 'I'm too tired to do that', 'I'm too weak to do that', 'I'm in pain', just don't cut it. If the doctors can't figure it out you're screwed and lack of funds can ultimately be just as fatal as disease when there's nowhere to go and nothing to eat.

Personally I find remarks along the lines of,'It could be worse at least you don't have cancer', highly offensive. Some days I wish I did because it could be proven, possibly be treated, or, if not, at least it'd be fast. If you 'just' have dry mouth and dry eyes (not to minimize that either) good for you but please don't judge the rest of us because everyone's problems are different.


Ditto GPHX.  Depending on which type and location of cancers, many are survivable.  My wife had colon cancer.  They cut out 18" of her colon(malignant polyps) in 2002.  Because it was caught early and did not pentrate the colon wall it didn't spread to other areas/organs.  She is fine and cancer free.  I wish they could cut Sjogrens out of me like that.  Some times I've gotten dizzier than a drunk on a tilt-a-whirl.  Dry eyes and mouth are the least of my sjogrens concerns.