Author Topic: Crap is what it is!  (Read 18107 times)

ynevar

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Re: Crap is what it is!
« Reply #60 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....

eyeamdry

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Re: Crap is what it is!
« Reply #61 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

ynevar

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Re: Crap is what it is!
« Reply #62 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


Joe S.

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Re: Crap is what it is!
« Reply #63 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.
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

eyeamdry

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Re: Crap is what it is!
« Reply #64 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

SassieCat

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Re: Crap is what it is!
« Reply #65 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

cmclien

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Re: Crap is what it is!
« Reply #66 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

navydad

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Re: Crap is what it is!
« Reply #67 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,,

Katybarstool

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Re: Crap is what it is!
« Reply #68 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

navydad

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Re: Crap is what it is!
« Reply #69 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

SassieCat

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Re: Crap is what it is!
« Reply #70 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. 


Katybarstool

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Re: Crap is what it is!
« Reply #71 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