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Sjogrens Topics => Living With Sjogren's => Topic started by: shevonne on August 30, 2010, 05:14:26 PM

Title: Crap is what it is!
Post by: shevonne on August 30, 2010, 05:14:26 PM
I went to my GP today for a followup and I just wanted to get her opinion about this Sjogren's crap so I asked her if she thinks Im a time bomb waiting to happen.  (I was basically asking her if she thinks as time goes on I will get really bad with this disease).  She just looked at me and said "just try to take care of yourself the best way you can."  I was already thinking that I would get worse as time goes by and she just confirmed it for me.  Im going to enjoy what I can while I can and the heck with anybody's stress they want to hand out.  I got my own.  heck why don't I just have a freakin Sjogren's party; yeah celebrate this crap!  Oh I guess Im really freakin venting right now!  I keep telling myself that Im just having a moment and this too shall pass; somebody help to get me back to where I need to be because right now I feel like screaming!  I dont want anyone else in my family to get this or have this but I keep wondering why Im the only one with it!  I dont have anyone to talk to about this at home because I dont want to sound like a complainer, I dont want anyone feeling sorry for me, I want them to know that I am strong and I can handle this!  Can I?  Why am I freakin out lately when its been months now since my diagnosis?
Title: Re: Crap is what it is!
Post by: tangowhiskie on August 30, 2010, 05:21:55 PM
I think it's very natural to think about how the disease might progress.  The world of AI is a scary one - especially when they are diseases that come from an unknown cause, have no cure, and are still not understood very well.  I think the most important thing is to follow your doctor's instructions, like taking all the prescribed medications, and like she said - taking care of yourself.  I also think it's important to listen to your body, and pay attention to any changes... and talk to you doctor about them.

Keep your chin up :)
Title: Re: Crap is what it is!
Post by: Rob_MI on August 30, 2010, 07:45:32 PM
I swear, my pSS is pretty aggressive....at least thats what I think all my recent problems are from.  It scares the dickens outta me.   I already have 7 docs appts in Sept.  And thats gonna grow.  Been on plaq 2 months...hoping that will do something for me but not keeping my fingers crossed.  A few nights now I've taken a few nips of vodka to help me forget.  Nights are the worst for me...in bed, waking up and my arms feel like they're vibrating slightly and tingleling arms and legs.

Yeah Shevonne, Sjogrens is crap thats for sure.  And usually you don't get just 1 AI problem....it has many relatives who visit you too.

Hey, take care the best ya can.  Thats all we can do!
Title: Re: Crap is what it is!
Post by: eyeamdry on August 30, 2010, 09:19:48 PM
You folks try not to freak out over Sjogrens.  There is certainly worse things that can happen to you.  I was dx with Sjogrens and 6 MONTHS later, I was diagnosed with breast cancer and skin cancer squamous cell.  Four days apart.  I was just settling in with the SJS diagnosis and getting some relief from the medicine and wham--.  "Well, ma'am, you'll be having surgery and radiation and you will probaby be ok.  Three years later, I seem to be cancer-free.  If I could loose one of the diseases though, it would be the cancer dx because you're always expecting it to come back.

I'm not the only one on here that has had cancer and I won't be the last.  There seems to have been an unusual amount of people who are dastardly afraid.  I wonder if there is something that's been printed recently that is scaring people.  Mostly, it's hard to find out information and medical people who know what Sjogrens is. 
Title: Re: Crap is what it is!
Post by: irish on August 30, 2010, 09:51:30 PM
I'm going to line up behind Lucy in this matter. I don't know if it is the heat this summer, but people have been unusually upset about things.

Lucy and I are from the generation where people got sick all the time and mostly they ended up in tough shape with no medical relief or they ended up dying. We were all in the same boat. WE could all get sick anytime and bite the bullet.

Modern medicine came along and now it seems that we think we should be instantly cured of every ache and pain and everyone is asking "what did I do to deserve this?". The answer is that medicine knows a lot but instant cures are not possible most of the time. Much of the time it is just relieving some of the misery. Do we deserve this??? All I know is we are born into the human race and it comes with the territory---period.

The thing that is almost worse than the diseases is the financial woes that come with illness. Now that is unfair. Trying to find the money to live plus take care of the diseases, the pain, etc, is enough to wear down the strongest person in the world.

I'm sure there are many of you who think that I am very uncaring and rude, but this is the way most of us "oldies, but goodies" were brought up. When we went to work and got sick at work we just bit the bullet and stayed the course. In my profession there was no one to replace me during my shift so if I wasn't throwing up in the halls and living in the bathroom I just had to stick it out. We didin't have all the sick days, etc years ago and our need for money was very great.

I am not saying that folks here are looking for a free ride at all. I am just stating that societies perception of illness has changed over the years. And---society's perception of life in general has changed over the years and not all of it is good. All of us, and I mean all of us, thnk that we are entitled and it comes from living in a society that pretty much had more than enough money for a good number of years.When I was growing up we were all the same-we were poor and we didn't expect much of anything from anybody.

I guess I have been sick so long that I don't know any other way to be. The one thing I do know is that anger has it's place in dealing with a loss, but we all have to decide what we are going to do with that anger. If we hold it close to our chest we will miss a lot that is going on in life. As time progresses I would hope that in spite of our aches, pains, infirmities and the total unfairness of life that we might all be able to accept what has transpired. Doesn't mean we like it or deserve it but it frees our spirit so that we can take part in the joys that are still out there.

I am sure that many of you will be very upset with me over this. I am not picking on any one person. I am remarking about how many people we have had lately that are extremely angry. I have been on this site close to 6 years and  people's anger seemed less intense years ago. Like I said, the heat, the economy, etc. Everything impacts how we feel. Feel free to speak up, or out or against my opinion. Irish ;D
Title: Re: Crap is what it is!
Post by: eyeamdry on August 30, 2010, 10:23:54 PM
Hi Irish-
I'm glad you wrote because I had no way of knowing you felt the same way.  I am on another board or two and the past couple of years (some) people are just beside themselves with anger.  People who are well into adulthood are referring to themselves as "girls" or "boys".  I'm sorry but someone who is late 20's or in the 30's is not a girl.  This post isn't to make anyone mad either.

Rather it's the opposite.  Anger is really hardest on the person carrying the anger.  It only adds more stress on our shoulders.  I can't think of anyone to blame for my SJS.  Now, my daughter has Type I diabetees and she could blame me for passing down the autoimmune thing.  She has never mentioned it. 

I had to retire early because of the fact of my eyes being so dry and my vision declining.  It was not the way I wanted to retire.  But, who should I blame?
Please people, be easy on yourselves.  Especially the younger folks because you'll have to live with yourself for a long time.  Best to all.  Lucy
Title: Re: Crap is what it is!
Post by: shevonne on August 31, 2010, 02:37:33 AM
Well its like I said "and this too shall pass."  I understand what you are saying Irish and eyeamdry and maybe I will get to where you are.  Matter of fact I can relate to what you are saying when I think of my family because I dont want to be a burden to them.  Yes, cancer is a bad thing and that runs in my family also, on both sides!  I keep looking out for that also; had two sisters with breast cancer and brother with bladder cancer.  I have went through it along with them.  When a loving family member has cancer and you have a family like I have you go through it with them.  No, you are not making me angry and I am not trying to make you angry.  However, everyone has their moments and Im trying to get use to this crap and yes it is crap.  I am venting and I thought I could vent here as some members has told me.  I think everything has a process; right now I am going through the process with all different levels.  I dont know exactly what level I am at but Im sure I will come through because I am a fighter.  I thought everyone goes through this when they find out health issues as such. I guess Im different.  Who knows; when this moment passes; who knows if it will come back again but I was told that I can vent here and hopefully some of the members help me get back on track.  Hopefully, I will learn to deal with this, get back on track and be able to help some new members that are going through the process!
Title: Re: Crap is what it is!
Post by: LizPetillo on August 31, 2010, 03:28:02 AM
Angery is natural.  It's part of the 5 stages of grief.  Let it rip .. be angry.  I sure am. 

As far as the 'this too shall pass' ... I get people telling me that all the time. 
But the fact is Sjogrens doesn't pass.  There is no cure.   It'll only get worse.
And the doctors are, for the most part, idiots when it comes to this disease.

So yep .. be angry.   
Title: Re: Crap is what it is!
Post by: shevonne on August 31, 2010, 03:39:32 AM
When I say "this too shall pass" I mean my attitude not this crap!  I mean I will learn how to deal with it but I have to go through the process like anyone else.  Thank you for understanding!
Title: Re: Crap is what it is!
Post by: SLEEPY101 on August 31, 2010, 04:00:54 AM
Shevone,
  You are not alone,vent away. Chronic pain can really take it's toll. It can really control someone's life. People on this site have different level of Sjogren's. So some have very little pain and symptoms and others like me have level 10 pain(like labor) and many life altering symptoms. You do get used to the pain and being sick all the time.

It is very frustrating when Dr's act like you are doomed and act like things are hopless for you. I had a GP be also tell me that things are going to get worse for me and the eventually that I would be in a wheelchair. That was hard to hear but that is only one person's opinion. I have to have faith that is not going to happen. I have to have faith that I will be healed and be better some day. I had a Dr laugh at me once when I said that. But hey whatever keeps you going. We just have to keep plugging away and handle what life dishes out.
Title: Re: Crap is what it is!
Post by: LizPetillo on August 31, 2010, 04:41:28 AM
When I say "this too shall pass" I mean my attitude not this crap!  I mean I will learn how to deal with it but I have to go through the process like anyone else.  Thank you for understanding! 
I should have been more clear .... I wasn't referring to you.  I was referring to the people here around me who keep saying that the disease will pass and everything will be fine when they find a cure.   That's hogwash.  And they get upset because I don't have the same pollyanna attitude that they have.

NOT YOU.  You've got a handle on it and know the score. 
Title: Re: Crap is what it is!
Post by: navydad on August 31, 2010, 05:09:07 AM
All I know is I hate it,, I;m getting sicker and am just told to go to a pain clinic,,, I swear I;m on earth and there on mars,,, I basically almost crawl around,,, 70 degrees and I;m dressed like its winter,,, Liz,,horrible what the GP told you,,, and I;m sick of reading the literature that says this is nothing more then dry eyes and dry mouth,,, I would happy to have just that,,,
Title: Re: Crap is what it is!
Post by: SLEEPY101 on August 31, 2010, 05:16:49 AM
@ Navydad I hope the pain clinic can help. I was going to start an extensive program then my insurance changed and they did not cover the clinc. I was going to have to spend 8hrs per week at the clinc and was going to spend about $150 of copay per week. I was also going to have to join a group pain therapy group. I felt a little out of place since I am in my 30s and all the other women were in thier 70s,80s and had walkers

The Dr's have said it is almost inpossible for me to have so my symptoms. What do I have to gain by making up symptoms? I would glady give my symptoms away it I could.
Title: Re: Crap is what it is!
Post by: kerryadelfred on August 31, 2010, 05:17:18 AM
hiii

i m new in this forums and i just need a help in it
and i wish that this site will response me well,,,

Title: Re: Crap is what it is!
Post by: navydad on August 31, 2010, 05:19:56 AM
@ Navydad I hope the pain clinic can help. I was going to start an extensive program then my insurance changed and they did not cover the clinc. I was going to have to spend 8hrs per week at the clinc and was going to spend about $150 of copay per week. I was also going to have to join a group pain therapy group. I felt a little out of place since I am in my 30s and all the other women were in thier 70s,80s and had walkers

The Dr's have said it is almost inpossible for me to have so my symptoms. What do I have to gain by making up symptoms? I would glady give my symptoms away it I could.
same here,, what possibly gain from so many symptoms,,, they can shove tehre Dx of Fibro,,, Fibro cannot be this bad,, there is no possible way anything could be this bad and to clal it fibro,,,
Title: Re: Crap is what it is!
Post by: inga 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.
Title: Re: Crap is what it is!
Post by: shevonne 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!   ;)
Title: Re: Crap is what it is!
Post by: navydad 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,, 
Title: Re: Crap is what it is!
Post by: bloodless 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.
Title: Re: Crap is what it is!
Post by: inga 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.
Title: Re: Crap is what it is!
Post by: Joe S. 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.
Title: Re: Crap is what it is!
Post by: navydad 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,,
Title: Re: Crap is what it is!
Post by: Joe S. on August 31, 2010, 02:25:41 PM
Good luck Navydad. Most pain clinics are ripoffs for the insurance companies to write off patients.
Title: Re: Crap is what it is!
Post by: Rob_MI 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.
Title: Re: Crap is what it is!
Post by: Joe S. on August 31, 2010, 05:40:06 PM
Rob_MI, Please see your Dr about these symptoms ASAP. Thanks.
Title: Re: Crap is what it is!
Post by: DragonflyC 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.
Title: Re: Crap is what it is!
Post by: Rob_MI 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.
Title: Re: Crap is what it is!
Post by: gphx 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.
Title: Re: Crap is what it is!
Post by: navydad 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
Title: Re: Crap is what it is!
Post by: Rob_MI 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.
Title: Re: Crap is what it is!
Post by: navydad on September 01, 2010, 11:08:30 AM
Good luck Navydad. Most pain clinics are ripoffs for the insurance companies to write off patients.
I agree Joe,, I see pain clinics as the last stop so that Insurance companys can just stop treating you,, even if it is the worng treatement,,,
Title: Re: Crap is what it is!
Post by: RachelsMom on September 01, 2010, 11:28:07 AM
Wow, this is a heavy yet important thread. I can't imagine how any of you are feeling since I don't have an AI disease. I can however understand the emotional yo-yo. My 16 yr. old daughter is currently undergoing testing for SJS and I get conflicting emotions about it in concern for her. She's so young and so active and it breaks my heart when I see her sitting on the couch chewing Aleve while the heating pad tries to offer her back some relief and I know SHE'S worried if she will be able to help her team win at their next swim meet or softball game. Her attitude seems to be pretty good right now. She's a stubborn young lady and she tries not to let her pain stop her from being 'normal' but me being mom worry about how her illness is going to affect her when she goes to college next year and how it's going to change her life as she gets older.

 I think it's perfectly normal to be angry, sad, frustrated and feel helpless with any kind of life altering illness, most certainly after being newly diagnosed or during especially rough periods. Add in the economic turmoils going on with our country that many aren't accustomed to and that's a fantastic recipe for stress. I have OA and Spondylosis CDDD and had a Cervical Spine Fusion a year ago...I get frustrated when I have no energy to do what I need to do, when my muscles start to spasm after doing something as simple as mopping my floor or scrubbing my shower and therefore put me down for the day. Or when I wash my vehicle and after only 5 min. feeling the burning pain in my arms from them losing muscle strength by not being diagnosed sooner. That makes me mad and I feel really useless because I can't do what I used to be able to do a few short years ago. But, I grit my teeth and move along with life and try to remind myself that everything happens for a reason and illness knows no boundaries!

 :0) *hugs* to you all!
Monica
Title: Re: Crap is what it is!
Post by: navydad on September 01, 2010, 11:46:45 AM
I hope your daughter test negative for all of this crap
Title: Re: Crap is what it is!
Post by: inga on September 01, 2010, 12:10:21 PM
Navydad, have they done the hereditary neuropathy tests on you?  Also Rob, it may be worth a try to see if your issues are in anyway a genetically caused situation.

I do understand your feelings about pain clinics....I am not fond of them either.  My last appt. I left after sitting 3 hours in the waiting room!

Yes, it is frustrating NOT to have a 'disease' when you NEED disability payments.  This is really a dilemma.  I think that things should be more based on FUNCTION not on the name of the disease.  The legal system which doles out disability is old and does not work.  This is one reason, I haven't filed....and also that I timed out....I haven't worked for 10 quarters there by losing the ability to file. 

Anyway, I was thinking they could put in a morphine pump?  I think a pain clinic has to do that.

I think anger is part of grieving....it is a process and we all go thru it to one extent or another....when we get stuck, we need a counselor or some person, maybe a minister or professional to help us get beyond this.   If we get stuck in anger, we get bitter and that hurts no one but us. 
Title: Re: Crap is what it is!
Post by: RachelsMom on September 01, 2010, 12:55:19 PM
Thank you Navydad! Whatever diagnosis they find for her, I hope it's soon so we can work on making her feel better and being pro-active by knowing what to possibly expect.

I too have visited the pain clinics and am not all that sold on them. I have a love/hate relationship with pain pills...I don't like to take them, but they sure did help when my pain was at it's worst. I don't like feeling 'high' all the time not to mention the havoc the side effects wreaked on my poor body.  I decided to have my fusion done when the cortizone shots in my spine were no longer helping for more than a month and my Ortho Dr. told me that those injections could give out far worse complications in the long run as opposed to having the surgery that I did at the stage I was in.

FWIW, I have a friend who had constant pain for years and was nearly debilitated by it when he was recommended to a local Acupuncturist. He SWEARS that the treatments changed his life. I've not tried it, but I've heard a lot of positive results from the treatment and I plan to give it a try next time my spine gives me grief.

Please forgive me if I've spoken out of line, I mean no disrespect by posting my comments.  I realize AI diseases don't have the option of being surgically treated to 'fix it' and take away the pain you are living with, I'm just adding in my 2 cents in regards to pain centers.
Title: Re: Crap is what it is!
Post by: Joe S. on September 01, 2010, 01:40:18 PM
Monica,
As your daughter will experience, she will get tired of people telling her of cures. Personally I believe the Doctors are using the wrong "Model" for AI diseases. Until that change is made, there will be no cure. Some of the research that I have been reading is suggesting gene 6 and gene 7 as points of connection for the variety of L-Bacteria that causes these diseases. One of these genes is used for serotonin replication which may connect to the loss of sleep and low serotonin levels. As you will understand... this is just "my" theory.

Currently the best we can hope for with any AI disease is management that slows its progression.

If you have not read "spoon theory" please read it. It could help you understand what your daughter is going through.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/



Title: Re: Crap is what it is!
Post by: navydad on September 01, 2010, 01:52:54 PM
Navydad, have they done the hereditary neuropathy tests on you?  Also Rob, it may be worth a try to see if your issues are in anyway a genetically caused situation.

I do understand your feelings about pain clinics....I am not fond of them either.  My last appt. I left after sitting 3 hours in the waiting room!

Yes, it is frustrating NOT to have a 'disease' when you NEED disability payments.  This is really a dilemma.  I think that things should be more based on FUNCTION not on the name of the disease.  The legal system which doles out disability is old and does not work.  This is one reason, I haven't filed....and also that I timed out....I haven't worked for 10 quarters there by losing the ability to file. 

Anyway, I was thinking they could put in a morphine pump?  I think a pain clinic has to do that.

I think anger is part of grieving....it is a process and we all go thru it to one extent or another....when we get stuck, we need a counselor or some person, maybe a minister or professional to help us get beyond this.   If we get stuck in anger, we get bitter and that hurts no one but us. 
I dont know if they have or not Inga,, (hereditary),,, as far as I know from my family history,, I dont believe any of my relatives have this type of neuropathy or any neuropathy,, now they may have and didnt know what it was,, My Aunt is 88 today,, her sister,, (my mom),, is 82,,, but I guess its possible a handed down neuropathy might skip a generation,, but I dont know that as fact,, I do kow there are some infectious neuropathys,,, some of which I have had or still have,, in addition to the pain cllinic I see a infectious disease doctor soon,, shes nice and I think we can get on the same page to see if its a infectious thing doing this,,, immunology might be next,, one I was seeing was good at treating hay fever,, not much good for anything else
Title: Re: Crap is what it is!
Post by: puccini914 on September 01, 2010, 02:16:09 PM
I am seriously starting to wonder if all this neuorpathy is somehow linked to some form of MS.  You know how all these AI diseases like to hitch a ride with sjogrens, many of get little bits of Lupus or RA here and there but never enough to get a full diagnosis of anything.  Just a little bit of something poking through.  I get a malar rash and hives all the time.  I have severe sunsensitivity that can send me into a full blown flare, but I test negative for anti-dsdna, but totally positive for sjogrens.  What do you think?  Could all this unknown neouro symptoms, the migraines, the SFN be some kind of MS overlap like we've seen with other AI diseases?
Title: Re: Crap is what it is!
Post by: gphx on September 01, 2010, 02:20:51 PM
Inga, I've done the same thing. I took a few years off and lived off of savings because I was messed up and now my disability has also 'timed out'. It didn't seem like a bad idea at the time because doctors insisted there was nothing wrong with me. I worked for 25 years and won't be eligible because of not enough credits falling in the most recent period. The system really does need to be changed.

As an example I read the other day stage 4 lung cancer basically guarantees one will be eligible for Medicare but there is a mandatory waiting period of two years. Unfortunately the mean survival time for those diagnosed with stage 4 cancer is one year.

I guess that's what the government means when they say 'cost savings'. In many cases they withhold benefits by definition and procedure until after the person is dead. Then after the person is dead they'll come in and take 40% of the value of their estate in taxes assuming anything is left. Good grief.

Rather than expanding existing programs it'd been great if they'd reformed them because otherwise it's just more of the same.
Title: Re: Crap is what it is!
Post by: gphx on September 01, 2010, 02:24:03 PM
Why apologize for being a breath of fresh air? One can't ask more than that someone have compassion and be a seeker of truth.
My best to your daughter. I hope things work out as well as possible for her.

Please forgive me if I've spoken out of line, I mean no disrespect by posting my comments.  I realize AI diseases don't have the option of being surgically treated to 'fix it' and take away the pain you are living with, I'm just adding in my 2 cents in regards to pain centers.
Title: Re: Crap is what it is!
Post by: irish on September 01, 2010, 02:26:35 PM
I was waylaid for a couple days with hyperthyroid due to overmedication so just got back to this thread today. Lots of heavy reading.

I did mention on my post that I was not blaming anyone for anger and I would assume that would include venting because why else would one be on a site like this except to exchange information and vent.

What I was questioning was the fact that this has been such a hot summer and people have been unusally upset in their posts. Maybe there are more people at the same stage of their acceptance of AID who are posting now, I don't know. I do know that when you add in pain, heat, financial issues and the political climate out there today we are all prone to be on edge in one way or another.

If you do stop and think of the past generations who suffered from disease you will find that they did not complain that much. Granted, they may have died earlier because of their disease and not had the chance to complain. There is nothing wrong with being angry and upset and I don't expect that there will be any change in the venting done here. I was just raising an issue and apparently I really poked a hole in the proverbial hornets nest.

Don't stop complaining or being angry but I guess if any of us has any prolonged anger we should talk to a professional about it and I think this has been addressed by others on this site at some time or another. Prolonged anger can end making us physically ill. As if we need another thing to deal with. Irish ;D
Title: Re: Crap is what it is!
Post by: gphx on September 01, 2010, 02:35:44 PM
Hi Puccini,

In my case, because of my neuro symptoms, MS was my first thought. I went to see an MS neuro. All the scans, spinal taps, etc. came back negative for MS but did show high ACE and CRP, two markers that often point to sarcoidosis among other things.

I had a lip biopsy done for SS. The report showed all the criteria of SS but apparently not in sufficient density of clusters for dx. I smoke and smoking is a known immunosuppressant such that it has been observed to cause false negatives on biopsies and various serum marker tests in a way similar to treatment with Prednisone.

Doctors said though I have serum results pointing towards neurosarcoidosis, they cannot find any granulomas so they can't dx it. About all they could do is start cutting randomly and hope they find something.

Do I have ss and/or sarc? One or a combination seems likely. Whatever the basis of the neuro symptoms I've had sicca issues for 27 years.

MS? Possibly, especially if a lesion isn't large enough yet to be seen on a scan but is in a critical area such as the cervical spine which can impact just about everything.

Unfortunately we're in 'wait and see' mode which means basically they won't do anything until you're so screwed up it's obvious to anyone and too late.

I think the crux of research in all these diseases should be blood tests for them. If they can't identify them in the first place no other research will do any good.

Not trying to be negative just practical. I remain hopeful for everyone.

Cheers,
Darrin

Could all this unknown neouro symptoms, the migraines, the SFN be some kind of MS overlap like we've seen with other AI diseases?
Title: Re: Crap is what it is!
Post by: RachelsMom on September 01, 2010, 02:44:40 PM
Monica,
As your daughter will experience, she will get tired of people telling her of cures. Personally I believe the Doctors are using the wrong "Model" for AI diseases. Until that change is made, there will be no cure. Some of the research that I have been reading is suggesting gene 6 and gene 7 as points of connection for the variety of L-Bacteria that causes these diseases. One of these genes is used for serotonin replication which may connect to the loss of sleep and low serotonin levels. As you will understand... this is just "my" theory.

Currently the best we can hope for with any AI disease is management that slows its progression.

If you have not read "spoon theory" please read it. It could help you understand what your daughter is going through.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/






Thank you for sharing the "Spoon Theory", it made me cry but it helped me to better understand...
Title: Re: Crap is what it is!
Post by: gphx on September 01, 2010, 02:54:44 PM
Thank you for sharing the "Spoon Theory", it made me cry but it helped me to better understand...

The person who wrote that is truly gifted and compassionate. Amazing how it rings true to so many with completely different conditions.
Title: Re: Crap is what it is!
Post by: SassieCat on September 01, 2010, 03:11:13 PM
Irish,

Forums are for everyone to tell it like it is and you have expressed an opinion that I happen to agree with.  Life is seldom 'fair and just' but that is just what it is.... life.  It's funny when most of us were young and the worst things we imagines were equivalent to flies buzzing by.  They just don't seem to matter now that they're past.

I don't think anyone is trying to butter up the prospects of any AI disease.  But no doctor on earth can predict if we'll ever get better or if we'll get worse.  Our own fears tend to over full our thoughts when we think of the 'what if's' in life.  So let's think about this.... let's not try to imagine all the what if's because we simply only make ourselves more sick with worry.  To be fair in this suggestion, compare my thinking to:

What if the person driving on the same road hits my car....
What if the next storm brings a hurricane or tornado over my house....
What is there is a major earthquake...
What if the 'bird flu' hits in my hometown....

See...... there are so many things that are just as real but we try not to dwell on them.  Don't get me wrong, I think about the future sometimes too but I find it only brings me down.  Trying to be positive and take each day as it comes seems to be the best that all of us can do.  

Hugs,
Sassie
Title: Re: Crap is what it is!
Post by: puccini914 on September 01, 2010, 03:28:43 PM
gphx, I have the positive blood markers for Primary SJS, the only problem there is that my Rheumy informed that those markers now make all other blood tests mute.  something about Sjogrens can make blood values for Lupus, Ra and alot of other AI conditions show false positive or false negative at any time.  I wonder if maybe that doesn't prove right there that they are all connected in some way and that we really are having symptoms creeping in from other conditions that would probably respond to treatments for those conditions.  My doc was telling that there are great treatments for MS when caught early enough, if overlapping MS is causing these SFN then maybe some of us could benefit from milder forms of those treatments.  It seems to me if this disease can affect bloodwork to that degree, maybe it does more then just alter the test results, maybe the diseases themselves overlap to that extent as well.  That's why our diagnoises keep changing, it's lupus, no it's RA, no it's SJS.  Perhaps SJS is not the nothing disease label, maybe it's more of an everthing they just can't nail down.  I know that I've seen pretty much every system affected on this forum, and it's way more then dry eyes and mouth.
Title: Re: Crap is what it is!
Post by: gphx on September 01, 2010, 05:26:42 PM
Good points Puccini. I've also found it interesting so many of them have the very same medications for treatment.
Title: Re: Crap is what it is!
Post by: RachelsMom on September 01, 2010, 05:34:18 PM
gphx, I have the positive blood markers for Primary SJS, the only problem there is that my Rheumy informed that those markers now make all other blood tests mute.  something about Sjogrens can make blood values for Lupus, Ra and alot of other AI conditions show false positive or false negative at any time.  I wonder if maybe that doesn't prove right there that they are all connected in some way and that we really are having symptoms creeping in from other conditions that would probably respond to treatments for those conditions.  My doc was telling that there are great treatments for MS when caught early enough, if overlapping MS is causing these SFN then maybe some of us could benefit from milder forms of those treatments.  It seems to me if this disease can affect bloodwork to that degree, maybe it does more then just alter the test results, maybe the diseases themselves overlap to that extent as well.  That's why our diagnoises keep changing, it's lupus, no it's RA, no it's SJS.  Perhaps SJS is not the nothing disease label, maybe it's more of an everthing they just can't nail down.  I know that I've seen pretty much every system affected on this forum, and it's way more then dry eyes and mouth.

Hi!

Since this whole +ANA/SSB came into our lives a little over a month ago, I have been doing a lot of research via many different websites as well as asking questions about it to other health care providers we have come in contact with and a few friends who have been diagnosed. What I am getting is this... *I think* that in my daughter's case and others with the same blood work that are exhibiting the 'usual' AI symptoms have an AID. As most of you know, many of the AI diseases overlap the same symptoms, however some may branch out into a different realm that distinguishes it from the standard baseline. In my mind, and please feel free to correct me if I'm not understanding this right, that a + ANA means there could be an AI issue. There are a few paths it could be, so based on blood work and symptoms a baseline will be distinguished...Thyroid or Lupus. (I'm sure there's more, but I'm not THAT educated yet.  ;D) So now it is either left at that OR if additional symptoms are present an extension to the baseline is added.  Example, SJS is *usually* indicated by dry eyes & mouth &/or a + SS Antibody (with additional symptoms to possibly follow later). So In my mind, I'm thinking my daughter has Lupus with SJS tendencies. Kind of like, a person whose blood tests indicate that they have Hyperthyroidism and has several of the baseline symptoms of it ALONG WITH bulging & swollen eyes, I would think that a person has Hyperthyroidism with Graves Disease. Does that make sense??? I don't always state clearly what I mean to say... ::)

 My daughter's Ped. Rhuemy explained to us that SJS is a 'sister' of Lupus but it isn't Lupus!? Not only that, but he said flat out that he doesn't think she has Lupus and he was just digging deeper to see if she has Sjogrens, but he's not completely sure of that either... ???

So here's me when I left his office that day... *scratching head* Ummm, okay, so my daughter has a + ANA & SSB, has had joint pain for nearly 10 yrs. that is progressively getting worse and is now affecting more joints (on both sides) and every day. She is tired ALL THE TIME, on rare occasion experiences Dizzy spells/black outs (5 in the last 6 months), is extremely heat sensitive...(it doesn't give her a 'typical' spotty rash but she flushes, gets dizzy and sick very quickly and easily.) She has stomach pain which makes her double up into a ball and she has to sleep it off. She is active in sports but is weak. She has had a + Sed Rate in previous blood tests but not this last time, headaches, dry eyes, dry mouth, anemia & eczema...but because we don't know if she gets fevers (how do you know if you have a low grade fever?) she doesn't have the butterfly rash and her joints don't turn red and physically swell her Dr says that she doesn't have Lupus?! I don't get it...which is why I did my own research... because I know different Dr's will have different opinions on the same subject.
Title: Re: Crap is what it is!
Post by: irish on September 01, 2010, 09:34:26 PM
I didn't get in on this til now and my only thought is that if she has the positive blood work, has had positive sed rates, passes out, has a rash, pain in joints, doesn't have lupus or sjogrens, then what in the heck does she have??? Second opinions are welcome in the world this group of people live in. Good luck. Irish ;D
Title: Re: Crap is what it is!
Post by: gphx on September 01, 2010, 10:59:00 PM
Hi RachelsMom, SS and SLE (lupus variants) have been described to me as a 'continuum'. Basically what they mean is the same unique genetic combination is resposible for producing both and someone can have one, the other, or be somewhere in between. My mother is ANA+ and has an SLE characteristic butterfly rash. For me it is completely seronegative, sicca and neuro. No telling what the future will bring though. My mother's ANA is positive sometimes, negative other times. If someone doesn't have it at a particular moment it seems to mean nothing.

I agree with Irish. With ANA+/SSB+ if it isn't SS or SLE what is it? Perhaps your doctor is denying everything until he's sure there's no stone been left unturned. If so that's probably a good sign. I'd rather have too many tests than not enough! Here's hoping you get clarification soon, preferably with good news.
Title: Re: Crap is what it is!
Post by: SLEEPY101 on September 02, 2010, 04:47:07 AM
@Rachels Mom,
  I have a positive ANA and postive SSA but have been diagnosised with Fibromyalgia! I am waiting to see the third Rheumy in March. Hopefully I will get the help I need. I am running out a options and Dr choices

Do you have access to a Research Hospital or clinic like the Mayo clinic? They would have the ability to run several tests and she could see multple specialists. This might help your daughter get some answers.
Title: Re: Crap is what it is!
Post by: navydad on September 02, 2010, 07:49:41 AM
@Rachels Mom,
  I have a positive ANA and postive SSA but have been diagnosised with Fibromyalgia! I am waiting to see the third Rheumy in March. Hopefully I will get the help I need. I am running out a options and Dr choices

Do you have access to a Research Hospital or clinic like the Mayo clinic? They would have the ability to run several tests and she could see multple specialists. This might help your daughter get some answers.

I am really starting to hate the word Fibromyalgia,,, it reeks of small fiber neuropathy,, not to say its not a real thing,, but if we all took lyrica like that lady in the commercial,, we;d all be out running around like we used to do,,,
Title: Re: Crap is what it is!
Post by: Joe S. on September 02, 2010, 09:53:41 AM
The people on the Fibro Forum that I am on Have tried Lyrica and gone off of it. They had too many problems on it. After a few months they were worse.
Title: Re: Crap is what it is!
Post by: navydad on September 02, 2010, 10:01:17 AM
Joe,, I was on Lyrica after jumping through hoops with insurance to try it,, it had to one of the worst meds I was on,, When I see my Psych later on this month,, I;m going to ask her about going back on Imipramime,,, its a older anti Dep,, but I think it did me somme good,, now to get my other doctors on board about IVIG
Title: Re: Crap is what it is!
Post by: inga on September 02, 2010, 11:02:25 AM
Once that ANA goes substantially positive on more than one occassion you have AI disease....and they are all the same....just different array of symptoms.

Rheumatology doesn't know its head from a hole in the ground.....that is said nicely.  I can't say what I really think.
Title: Re: Crap is what it is!
Post by: SassieCat on September 02, 2010, 12:49:30 PM
I just went to see my rheumy last week and was telling her of some of my new symptoms.  She said it was probably all related to the Sjs and that no two people have the disease the exact same way.  The neuropathy is related as well as the different types of rashes that I have had. 

She is affialiated with the Cleveland clinic. 

So, does this sound like a (don't know let's blame it all on sjogren's) or (yes, all of this fits into one bucket and not everyone has the disease the same way)? 

I hate the word fibromyalgia too! 
Title: Re: Crap is what it is!
Post by: bloodless on September 02, 2010, 01:20:31 PM
I hate the word Fibromyalgia too. It's what they always say you have at first. That's fine if you have it.

Navydad, if they put you on a morphine pump, let us know how that goes. It sounds good. My rheumy said it's easy for someone with this disease to be on 300 mgs of morphine a day and still be in pain. Let's hope none of is gets there.
Title: Re: Crap is what it is!
Post by: harlin on September 02, 2010, 06:49:37 PM
Sounds like everyone is as mad as I am!!! I hate this!!
Title: Re: Crap is what it is!
Post by: bloodless on September 05, 2010, 12:01:47 PM
Yep. We all hate it. Here it is a holiday weekend and I'm doing nothing! It was great at first because I needed the rest, but now I realize noone thought to ask me to do anything this weekend. Why would they? I can't ever do anything.
Title: Re: Crap is what it is!
Post by: navydad on September 05, 2010, 12:27:16 PM
same here,,,
Title: Re: Crap is what it is!
Post by: ynevar on September 05, 2010, 02:08:15 PM
I read through this entire thread, then read "The Spoon Theory" and am just sitting here somewhat unsure whether I want to cry or laugh or both.  That is not to say I am laughing at anyone's pain or feelings.  It's just that it I almost feel giddy that I am not alone.  I hate that others are going through such awful times, but there is always comfort in knowing you are not alone...

I was very angry, for months, not only at what has been going on physically with me, but what it has done to my family, married and work lives as well.  I was so angry I think I probably reeked of it.  I know for sure I still have moments of anger, but I think they are far less.  Before I would just boil--hurt about how I feel and hurt how it has affected myself and everyone else around me.  Other events have transpired and they also have devastated me emotionally, it seems all of them were perfectly timed to provide the biggest blow, the perfect crap storm of life.  I was angry and pitiful, seething for a while.  I wondered why me????  Then I realized sometimes crap just happens and at least I can say I got it all over with at once.  Doesn't mean I don't have periods where I want to just rage.... I do... I have tried to keep in all in check and find the strength (one more spoon) to shut my mouth and effectively handle it vs. saying what I think. 

I  am better off than where I was a few months ago, even if I am physically worse some days.  I am not yet diagnosed and sadly, after reading much about the diagnostics, I am beginning to pray that I get a definitive diagnosis so it can be treated.  I never thought I would pray for a lip biopsy to have a bad result, but the alternative, living in limboland seems far worse. 

I too struggle with off and on severe pain.  One day I can't hold a cup of coffee, others I can lift a sofa.  Sometimes the pain is very brief and transient other times it settles into my hands and the burning, aching and itching drives me mad.  Veins bulging, swelling, in my hands or feet, legs, arms and severe pain that no one (except those that are going through it) seems to be able to relate to.  I am glad no one in my family truly understands.  I'd like to think I have a pretty high pain tolerance, slept through a few hours labor on pictocin, and this just wears me out.  Being worn is really rough... I need a rejuvenation time, but don't  seem to get one.

I can appreciate the posts that everyone shared.  I think it is important to vent and know how much good it does me.  I think ranting on this forum would be better than taking my rant to family.  If you all want to read it, comment then you will.  My family has no choice if I take it to them... So I don't condemn or look down on anyone for a rant, especially here.  I am very thankful I can post a rant online...

I spent some time trying to keep things (short time) from my family... If I was in pain I wouldn't say.  I still felt it, but tried not to talk about it.  Then everyone thought, oh Gee she isn't in pain, and still isn't doing things with us.  I gave that up quick, and have just been stating the plain facts, my hands hurt, see where the veins are bulging and there is swelling?  Do my best to participate, although that is really a far cry from what I used to do.  But at least they know and don't assume that I don't want to do things or don't want be with them 100%.

I have been angry at what this has done to my marriage most of all, which was going through a time anyway.  We have decided to stick it out through the duration, sickness and health--and all that... I think we are working towards being more forgiving of one another--forgetting and living with and through faults.  I tend to be more of the emotional fireball and have to work contain myself a lot more than he does... hahaa... oh jeez.  am a lot less angry than I was, which is good.  It is definitely a process and it can fuel other anger fires that are unrelated.  I had a choice--let it consume me and ruin everything or put it out.  That's not to say I won't have some flares and I might not need to do fire control later, I might.  But I am at least not a raging inferno...

I just want a definitive diagnosis, treatment and the ability to have a few extra spoons each day.  That's all.  I know that doesn't always happen; why should I be so lucky right?  I can hope....
Title: Re: Crap is what it is!
Post by: eyeamdry on September 05, 2010, 02:39:22 PM
Ynevar, what a lovely post.  Reading about you and your marriage is sweet. I take it that you don't have a diagnosis and this maybe causes problems in your relationship.  I am kind of dingy today and may have read it wrong.

I have a diagnosis and my husband has been wonderful through my last 4 years of SJS, fibro and breast cancer.  I am flat on the couch most days and I know sometimes he's thinking."why is she so lazy?"  I had a half knee replacement 8 years ago and it is loose now and hurting.  i will need to have a full replacement to fix that and the other knee is at the point of needing a replacement.  I've been almost unable to walk lately and don't see the doc for another month.  He said one day to me..."well, if you would just get up and walk more, you'd be better."

That means he doesn't get it.  Geez, after 4 years, and he's seen the dr with me and all and still every once in awhile he'll say something that I'd like to wrap around his neck.  If my knees are bone on bone, walking does nothing but make them worse.  I've been through all that 8 years ago.  Went through shots, steroids, crutches, walker while I was still working.  My point is I'm not sure any of our spouses really understand, even the ones who are helpful.  Lucy
Title: Re: Crap is what it is!
Post by: ynevar on September 05, 2010, 07:33:57 PM
Lucy,

I think it causes trouble in the sense that I feel responsible for my inability to do everything I want to do, then I am down on my self, then I take everything personally... ugh...

I think, if I was undergoing treatment it might be easier?  At least having information towards a diagnosis, (my high blood levels for Anti-Alpha Fodrin IgA) helps us (me) at least have something to point the finger at!  Not just "ynevar" is lazy, tired, boring, hurt all the time...

Maybe I am just naive, and that think that a diagnosis will help?  I hope that some treatment will help?  He has more faith than I do that it will help.  I just want to feel better.  Got some eye drops today (first time addressing eye dryness, never realized my eyes were so dry... I think it snuck up me and I never realized it!)  I put the drops in and my eyes were like WOW!  Anyhow... tired today.  Cold and rainy day and love the heat of the fire.  Thanks!!!!

-Y

Title: Re: Crap is what it is!
Post by: Joe S. on September 05, 2010, 07:58:24 PM
ynever, you may want to add omega-3 to what you are taking. I am glad that you read "spoon theory".

"Because you don't look sick or maimed" having a Dx will not help. Have your significant others read "spoon theory" if you can get them to.

You do have an incurable illness by medical standards. Start by learning how to manage your symptoms. Maybe later a cure will be seen by the AMA.
Title: Re: Crap is what it is!
Post by: eyeamdry on September 05, 2010, 08:14:35 PM
ynevar-
I do think a diagnosis helps.  It helps you (me) if nothing else.  Even if the diagnosis was something other than Sjogrens, it shows you have "something" and you have the paper to prove it.  When I say I have Sjogrens and fibromyalgia often I am brushed off and I'm able to say that I have antibodies in my blood and that proves I have Sjogrens.  I also add others do not have proof and it's really hard on them.

The fact that you're treating your eyes should mean something.  Don't always go in the bedroom or bathroom so no one sees you "dropping."  Leave the drops out where you can grab them and they are in your sight (and others.)  You really need to care for your eyes, even if they don't feel dry or bad.  I hope you let us know how your tests turn out.  Lucy
Title: Re: Crap is what it is!
Post by: SassieCat on September 05, 2010, 11:53:41 PM
Ynevar,

Yes I think too that having a solid idea of what the heck is wrong helps.  It helps to know what you're up against and to be able to read about it and understand it.  The not knowing and (oh yea) the testing is the pits. 

It was nice to see that your marriage and family are there for you.  My hubby has been fine but there are days when he just plum forgets and it takes him back a step to remember that I cannot do the same things that I did before, but he does try.

My daughter-in-law has been the worst, she thinks it's a ploy to get attention.  She actually had the nerve to tell me, "you never cook dinner for me anymore."  I said, hey, don't feel bad, I can't always cook for myself either.  (humor)  But she gets in her nasty spells and that's a whole other story.  I have not seen my two grandchildren in 3 years because of her bad moods.  Of course, her mom is really sick.... she has high cholestrol..... Glad I'm not that sick! 

Hugs,
Sassie
Title: Re: Crap is what it is!
Post by: cmclien on September 06, 2010, 06:35:38 AM
I'm not nearly even half as sick as alot of people on this board.  I have had in the past TERRIBLE eyes and other then that on and off neck pain, hip pain but it comes and goes and usually its worse in the summer which I can't figure out.  I'm still torn about taking the plaquenil but I figure what the heck if it doesn't do anything I'll go off in it in a few months.  I don't have the awful fatigue I read about.

Even at this level my DH only has a little patience.  He gets really tired of me talking about it so I have to limit how much I say in a day.  Because its a new diagnosis I WANT to talk about it but know I can't.  First it was my thyroid issues I talked about "nonstop" in his words, now the SJS.  It makes me feel somewhat better to finally have a diagnosis, a reason to put behind my many seemingly un-related problems that my rheumy feels are actually related (see my signature) and are commong to lots of folks with SJS.  I can only imagine someday what kind of support I will get, maybe not much.  I'm thankful to be able to come here and have others who can relate to me.

He is a great guy in almost every other way but I think it IS hard for others to understand, even those living with you.
Cindi
Title: Re: Crap is what it is!
Post by: navydad on September 06, 2010, 10:23:23 AM
Others cant possibly know the depths this disease can take you,,, Sheltiemom,, Inga and myself suffer from SFN,, and I can only speak for myself,, but if that were under control I COULD handle the rest of it,, Ill take the dry eyes and dry mouth anyday and I mean that,, Imagine living a life where you advoid touching things that are cold,, or like Inga,, not feeling your legs below your knees,, getting up and wondering how far you will get before you might fall down,, I am sereonegative,, whic means NOTHING,, it means absouklatley NOTHING in the way of a Dx,, I show no antibodies,, ANA is negative,,, but I have SFN, I have dry eyes,, dry motuh,, chronic sinus infections,, so who kows,, I have been tested for parentoplastic syndrome twice,, so far no cancer markers are showing up,,, My PSA is constantly in the upper range of abnormal, but no one seems to concerned about it,,, and I wont go to a guy who specializes in this around here,, I;ll end up gutted,,
  I have little faith in the medical community where I live,, its just that,, I have no faith,, NONE,, and I dont need psych help,, i need to be told what the heck is going on,, and where its going,,, is that really to much to ask,,, I could lay on a therapists couch for days but thats not going to stop the progressing of this,,, so I dont need more drugs to even out my mood,, screw that,, I want answers,,
Title: Re: Crap is what it is!
Post by: Katybarstool on September 06, 2010, 11:48:35 AM
Sassie

I think we share the same daughter in law - Gosh, I had to check I hadn't written that post. Sending you big empathetic hugs.

Kathyx
Title: Re: Crap is what it is!
Post by: navydad on September 06, 2010, 01:16:29 PM
Ynevar,

Yes I think too that having a solid idea of what the heck is wrong helps.  It helps to know what you're up against and to be able to read about it and understand it.  The not knowing and (oh yea) the testing is the pits. 

It was nice to see that your marriage and family are there for you.  My hubby has been fine but there are days when he just plum forgets and it takes him back a step to remember that I cannot do the same things that I did before, but he does try.

My daughter-in-law has been the worst, she thinks it's a ploy to get attention.  She actually had the nerve to tell me, "you never cook dinner for me anymore."  I said, hey, don't feel bad, I can't always cook for myself either.  (humor)  But she gets in her nasty spells and that's a whole other story.  I have not seen my two grandchildren in 3 years because of her bad moods.  Of course, her mom is really sick.... she has high cholestrol..... Glad I'm not that sick! 

Hugs,
Sassie
you havent seen your grandchildren in 3 years?,,, man I never knew High Chlorestrol was that life threatening,, do they live near you?,, if they were my grandkids,, thre mom would be having more then a bad mood
Title: Re: Crap is what it is!
Post by: SassieCat on September 06, 2010, 09:01:45 PM
Cindy - I know where you are coming from and I hear what you are saying.  After a while it does seem to get old having so many things going wrong.  I have even had it said that I just love it when a new dx occurs.  That way I can get sympathy.  That has left a sour taste in my mouth and I seldom speak of what is wrong with me.  I keep it bottled inside and only a select few now know what ails me.  So I have no advice to offer but I deeply feel for your plight here.

Navy Dad - I know it has been a long and treacherous road for you as I remember your older posts.  It is a shame that someone out there cannot give you the answers you seek.  But I disagree in the faith part.  Without faith, all is lost.  No matter what happens to me I do have the faith that things are happening the way they are meant to be.   I don't know why and what but I do have faith that somehow God knows and will make right by it.  This "I NEED" in my life.  Sorry that you have lost yours and more than a dx for you I would wish that you could find faith again, not to irritate you but only for the best for you that I could hope for.  ((Big Big Hugs for you my friend))

Katy - Thank  you so much for the chuckle you got out of me.  It is hard to let things happen without a battle but somehow I feel that there is a lesson needing to be learned and it's not mine to learn.  I would press the issue as I had in the past but one day while taking my grand daughter home, she started screaming and crying.  "Please grandma, don't do this.  Please don't take me home.  I'll never see you again."  This went on for the 20 minute drive to take her home.  She was soaked in sweat and nothing I could do to make her feel comfort.  It was with this in mind that I thought, I would hurt that little girl for my selfish wants.  There is more going on in that house than I am aware of.  Much more than an mean self centered mother. 

Title: Re: Crap is what it is!
Post by: Katybarstool on September 07, 2010, 12:43:59 PM
Sassie

I feel the same. I think my d-i-l has a personality disorder, as well as being controlling. We have had a slight breakthrough and, so long as she doesn't change her mind, have an 'appointment' to see our grandchildren in early October - oh, and they only live 6 miles away!

Kathyx