This Isn't FAIR! 'a rant'

[Carolina]

Dearest Sjogren's Angels,

I am setting out to write a rant.  But as soon as I type I realize how many blessings I have.  So this will have to be a "demi-semi rant".

I've never been so disabled in my life....

I cannot be upright for more than 5 minutes without the onset of excruciating pain, from my hip to my ankle.  This is from the cyst on my spine that presses into the nerves of my spinal cord when I stand up.

I am withdrawing from Gabapentin to see if it causes myoclonus jerking in my body, so I am experiencing more pain in my body and the pain of my small fiber neuropathy.  I wake up feeling terrible.   It takes me 20 minutes or more to get dressed and then I have to  lie down until the pain subsides.

I cannot clean, I cannot cook, I cannot shop at stores, I cannot drive. I am completely dependent on my husband, and while I am grateful, it makes my crazy.

I like things around me to be clean, I want the cat boxes changed!  The refrigerator is full of weird food from weird stores (my husband is shopping and cooking).

I can't stand it, and of course I can't STAND either.

Now, I have the HOPE that the procedure next Thursday (August 25) to put a needle into the cyst and make it go away, will end this pain.  But it's a 50/50 chance of success/failure.

The cyst is so rare that I can't find a support group (I depend on support groups!).   I've visited every web site about both my cyst and my essential myoclonic jerking a zillion times.   

I work almost daily with my Neurologist by email to figure out what is going on.  He proposes possible diagnoses, I examine them on line and indicate why I don't think I have them.  He is learning with me and it is the ideal relationship.    I just don't have the ideal problems!

Angels, everyone once in a while I think: My body is falling apart and perhaps hanging around in this world is taking up too many resources and is too much effort on my part.   Now that is just a tiny fleeting thought, but it's there.

I also think:  I'd be happier in an assisted living center, help dressing, meals prepared, cleaning and laundry done, easy access to other adults and activities.

So you can see how frustrating this is.  I cannot seem to meditate.  I keep waiting for this to be OVER, which isn't useful thinking.

So I'm ranting away..  All I need is support, emotional support.  My husband takes care of things, but he isn't supportive.

Rant rant rant.

Elaine

[angeldancer]

Elaine, wonderful Elaine.  I am so sorry for your agony.  I absolutely get why you are saying all things things.  You want to be able to do a little bit in your own home to feel more comfortable but the pain is just too much.  It seems as if your husband is trying to do things as best as he can but maybe if he just held you and connected a little more emotionally maybe more smiles could come through the pain. 

My ear is hear.  I don't say much any more but I do read whats on here.  I get all the pain but I am trying to stay quiet because my rants were too often.  It is such hard work trying to find something that can take the edge off.  I don't think my family truly understands how psychologically I am frazzled by not being able to work or concentrate or get out of this pain.

I listen to you and I know that we need a real cure or a real treatment that eases our pain.  When I listen to you I know that although my age is 52 now (I joined sj world in 2013) I have a long time to be in chronic pain and inflammation. 

My daughter said for me to fight through the pain and just live.  She just don't understand when pain is in your hips, legs, knees, shoulders, elbows, toes, hands, etc.  She hears me squeal when I am trying to get up but thinks I am a hypochondriac that I can't be in that much pain.

I hear your cry out and I am with you.  I just have to keep good thoughts and prayers going your way and the same for myself.  I need a miracle and you do too.

Peace love and abundance of blessings,
Angeldancer

[warmwaters]

Dear Elaine -

You are in constant pain, and that wears you down.  So remember that if you can get some pain relief from the procedure on the cyst, your outlook will improve. I know I get very sad when I'm in pain.

And feeling helpless is the worst feeling.  Even if it's just silly little things like preferring your cheese sandwich with mustard, but you have remind the person who is making it for you that's how you want it.  It's basic autonomy - not having control over easy things that others can do. Having to ask for a cup of tea, or asking someone to bring you your book - it's frustrating, and you feel like a burden.

I was fascinated by the idea of the assisted living center. You've mentioned before that your husband isn't a strong emotional support, and perhaps that's something to explore in the long run.  Being isolated and lonely is hard. Some assisted living centers have a good community.

Gentle hugs in your direction

[Carebear]

Dear Elaine,

I hear you and I totally get it.  We all need purpose and deserve to feel joy.  The constant pain just grinds you down, making everything so hard, so dark.  Mediation is impossible for me when my body is in such agony as well, but of course that's when we could benefit from it the most.

I support with your idea on assisted living communities, and have already decided that when the time arrives, I will find the right fit for me.  My dad lived in a wonderful place for several years, where he was as active and social as he wished to be.  I saw him flourish.  So we each need to do what suits us best.

The procedure next week is could offer you some relief, so there is hope.  Easy for me to say, right?  But it's true.  Lastly, we are here for you.  Rant away. 

[Carolina]

Oh Angeldancer!  You are a dancer, and dancers LIVE with pain, dance through pain.

You are NOT a hypochondriac.   Pain is always a surprise and we react with sounds.  It is normal.

Our children are the worst people to support us because they can't stand when we are 'weak'...and it has to be OUR FAULT.

Next are spouses.  Again, they want us to be strong.

But we take what we have, don't we.

Carebear, I have several reasons for wanting assisted living, including some privacy and some neutral support, and socialization and prepared meals and cleaning.

But that is a long way off, at this point.  I have long term care insurance, but I need a much long period of disability and if this pain can be ended, I can return to my life as it was....far from perfect, but relatively pain free.

Warmwaters, my husband is the WORST cook and the worst shopper.  This has to end.....somehow I hope with me getting better.   If I ask for something, and IF he actually hears (he's deafer than I, but won't consider hearing aids, which I have)he says he'll do it when he gets around to it.  I haven't even asked until I was desperate.  This has to end!

In addition to all of this my right shoulder is deteriorating and I have lots of pain (but not always).  My Orthopedist told me the 'next step' is a shoulder replacement, for Pete's SAKE!   I can't do that, of course.  I'd wear my right arm in a sling before that.  Thank god I'm left handed.

I do feel pretty low right now....but at least my Angels understand.

Hugs,  Elaine

[jazzlover]

Boy, I hear ya. I'm so sorry you are in so much pain!

I have been in the place of not being able to cook, clean, shop, drive and it is enough to make you totally crazy. I was able to do most of the grocery shopping, but hubby had to take me and then push me in a wheelchair. Not fun at all, but better than allowing him to shop, actually.

I know you probably can't do that. So frustrating!

Praying that after next week you will be MUCH BETTER!!!

[Joe S.]

Instead of focusing on what I can not do, I try to focus on what I can do. Do I get down when I think about what I can't do? I sure do. Some times suicidal. I do see a shrink to help me refocus. I try to figure out other methods to doing what I used to do. I try to push my limits. Yes I took a long trip this summer. Yes I had challenges. But I did not know what I could do. I knew what I wanted to do and what caused problems.

You may be able to do more than you think you can. If you push, start small, plan well. A trip to the mall. How was the ride? How was the walking? Did they have a scooter for you? Cane, cruches, walker, or wheel chair. What does it take to spend time with your significant other?

[Carolina]

Oh Joe, I'm just in such a new phase and so hopeful it won't last.  So I'm in that pushme/pullyou stage. 

The worst thing is that I can't be upright for more than maybe 5 minutes.  So even my walker isn't much user.  But soon I will know what the next step is, and will begin another adjustment process.

I see my therapist every week, and that helps so much.  I take Cymbalta 60 mg, mostly for pain, but it is an antidepressant.

The thing is that I'm usually so cheerful.  I'm just feeling very 'locked in'.  Thank god for the internet, wifi and friends like you.

I loved your trip!  It was so wonderful.   I know you have been through so much and have such wisdom.  Keep breathing, NUMBER ONE!

Hugs,  Elaine

[Joe S.]

I to have a new health challenge. The twice broke bone spur has left me with little strength in my right foot. My MD has asked me not to drive. So I do not. To sit in the passengers seat and hold my tongue is a very difficult challenge. I hope it comes back with exercise.

Something tore in my right knee last week so stairs have also become very difficult.  This shoud heal soon.

I hope you get some positive news soon and see improvement.

I have told my wife to post the cause of my death on this forum. When people disappear from here we often have no idea why. Sjogrens is never listed as the cause but I believe it is a contributing factor.

[susanep]

Dear Caroline,
I do understand. I don't drive anymore, can't cook, but once in a blue moon. House work is a joke. On top of it all is my hubby though he cooks can't do a lot due to his own health issues. There is no one to help us so we do the best we can.

We are supportive of each other, because we both understand. The one thing I have is his true love, and that means everything. I just dread going for appointments that are an hour away due to being so tired and weak.

I hope you soon find some relief, and get to where you can find much joy in your day.

Hugs,
susanep

[aussie mum]

You are entitled to rant....

I really feel for you Elaine and hope the procedure helps with your pain.

Aussie Mum

[katie1111]

You have a right to rant.  You have a right to feel frustrated.

One thing you haven't mentioned trying is laughter - yup - not much to laugh about.  But laughter can be therapeutic.  Can you find some funny videos to watch?  I attended a lecture given by a nurse who works with cancer patients.  She discussed the therapeutic effects of laughter.  She suggested going has far as saying out loud "Ha" and then "Ha, ha" and keep adding another Ha and eventually you will be laughing.  Laughing releases chemicals that decrease pain.  Try funny books.  I sometime give friends who are sick Calvin and Hobbes books.  Anything you can find.  The one thing about laughter is there are no side effects.  You can probably find funny Utube videos.  Don't give up.  Keep looking for laughter.

Think about you and praying for you.

Katie1111

[SjoGirl]

Oh Carolina, I am so very sorry for you. It is good that you have a doc who is willing to communicate, may that offer some solace as well as knowing that prayers are with you.

Hugs!!!

[Nomad]

You have so much going on at the same time. No wonder you are fed up. So glad you are seeing a therapist. I'm going Monday myself.
Consider looking into a compounded cream esp if you go off Gabapentin. I've had luck with mine: gabapentin, lidocaine and capsaicin. I use it on my face and these two crazy toes with luck. I am considering have one made that is anti inflammatory. Like ibuprofen in a cream. Rub right on the problem.
Some here have used an RX called Voltaron or some thing like this it's a strong cream RX for pain.

I'm so sorry you are hurting and no doubt frightened. I hope the doc helps. Sounds like you have a good doc! And you are pretty darn clever yourself!

Prayers and good thoughts.

[Dolly Dimples]

Poor brave Caroline . I hope you can feel the support of all of us, We are there with you,  and praying that relief will come soon.

  I think you ae one of the bravest,  in the way you have carried your illness throughout all your time on these boards.. you have spurred a lot of us on when things got bad in spite of your pain.   Praying that this next appoinmtent can at least give you relief, or indeed a miracle would be much appreciated..
     Hang on in dear one, and wish you all the best soon,  Hugs Dolly