Still Here and doing so-so

[ktfabian]

Hi everybody-

I just wanted to say hi.  I've been lurking for the most part in recent weeks.  There's a lot going on around home, and I'm having trouble keeping up because of the brain fog and pain.

The brain fog has reached the point where both my rheumy and psychologist feel it
is time for a neuropsychological evaluation.  I tried to teach a scrapbooking class today to members of the Family Readiness Group of my son's Army National Guard Unit, and I finally had to explain to the group that I was just having a really hard time remembering what words to say at times.  I told them if they knew what word I was trying to say, shout it out!

Pain is also be BIG issue right now.  I can't even tell anymore if it's the Sjogren's or the original back injury.  Two women who I really like came to the class today and brought their small children - I'm talking 3, 5 and 7.  I was ready to bop both moms on the head as I ended up chasing their kids around while they scrapbooked.  I'm totally wiped tonight.

Hubby-dearest has been spending a lot of time on his butt lately, too, which means more work for me.

I know, blah, blah blah....that's about how I'm feeling.  I'm SOOOOO tired.  I sleep about 2 hours in my bed, then move to the reclines for a while, then try the couch, then give up.  I feel like Goldilocks...except I can never find the bed that's "just right".

And finally, the Army ,keeps changing dates on my son - when he'll be going for training, when he'll be leaving for Iraq - I'm sure the constant worry about him going is not helping all of the above.

Well, I'll stop complaining.  I just really need a day with a pain level below 5 and a good night's sleep! Tracy

[Joe S.]

My wish is that we are out of Iraq before your son is deployed.

After reading a study in "Readers Digest" a few years ago, I take Acetyl L-Crarnitine (400mg) with Alpha Lipoic Acid (200mg) twice a day for brain fog. It also helped with the neuropathy.

I do not bother with the bed any more. I sleep or meditate in my recliner.

A simple meditation that helps me is:
Breathe in..."I am", and breathe out..."calm". I use this for hours some nights others I do not need it.

Peace,
Joe

[Scottietottie]

Hi Tracy 

I'm sure the stress won't help the pain or the brainfog. It's a vicious circle pain and brain-fog add to stress. I bet you wanted to bop those women! I have no time for people who let their kids run riot and expect others to cope with them. If I thought mine weren't going to behave - I wouldn't take them. If I took them and they played up - I took them away again.

What pain killers are you on and do you see anyone for pain management? A pain clinic sounds like an idea because functioning with constant pain is not good for stress or rest.

Take care - Scottie 

[Dolly Dimples]

  Tracy, I am so sorry your having such a bad time of it lately..
    I don't have any miracle cures or anything, but I sure do send my sincere sympathy and prayers to you.
    I'm sure all of us on here have had days when we feel that only something like death would take us out of our misery,
     but then- hey tomorrow is another day , and I really hope yours is good...Bless you!
         hugs from Dolly, x
   

[Skylar]

(((HUGS))). I agree with Joe , I hope your son doesn't have to be deployed.

Skylar

[Pooh]

Hi Tracy,

I'm so sorry things have been so rough for you.  I can understand your stress and anxiety over your son's upcoming deployment. 

Fortunately for us, our wait is almost over.  Our granddaughter's hubby Jason will be home next month (we pray) from Iraq after a 18 month tour.  I'm sure the time went much more slowly for him than it did us, but it seems like it will never end. 

Good luck and take care, maybe this whole mess will be over by the end of the year and he won't have to go. 

Hugs, Pooh

[Patze]

Hi Tracy,

I too am sorry to hear that things have gotten harder for you, I was sure that things would ease up for you a bit...ah, the best laid plans of mice and men (egads, can't get rid of that saying now)!

It's no wonder that your body is fighting back, your stress level must be awful!  Oh the moving from the bed, to the chair, and finally to the couch is awfully familiar and I'm sorry that you're having to deal with that too.  I know how uncomfortable it gets in the bed, I do enjoy laying on my couch, it's mucho comfy (lousy for using the CPAP though)!

I do hope that everything is over before your son has to report to Iraq, and hopefully any overseas time will be spent in western Europe!  Tell him to hang in there and that things usually work out.  Please give him my best now.

I've been struggling with brain fog since this mess started and it seems to wax and wane on it's own schedule.  There are times that I just want to bang my head against the wall, but I'm afraid that I'll damage a wall and then to have to pay for it!

Take care, okay?

Patze

[irish]

Tracy, I hadn't seen you around lately and wondered where you where. I'm sorry to hear that the old brain fog is giving you fits. I know that stress and fatigue really play a part in my brain fog. There are days I can't find my way out of a paper sack and other days when I am so much better. Don't think I could work like I did before, but so much better that I am convinced that some of this stuff is not permanent but can some day be treated. Hope they can find the reason why.

I have to chuckle about the shifting from bed to chair, etc. I can just see all us sjoggies spending a nite together and every 2 hours we all get up and move to another place to sleep. Poor sleep is so typical for us. I wish they could fix that for us cause I really think it plays an enormous part in our bodies ability to keep healthy.

Hopefully your son will not have to go to Iraq, and I hope that you can relax and not worry so much. Easier said than done I am sure. The stress must really be taking its toll on you. Hugs. Irish

[ktfabian]

Thanks everyone, for all the kind words.

I hate that you have to understand - that  you have this delightful disease also - but I'm glad that there are people who do understand. (that really is supposed to make sense, it's not the brain fog talking!)

I guess my pain doctor decided to take pity on me as they got a cancellation and moved my appointment up to this Thursday instead of the 16th.  If I can get the pain knocked down a few notches, I think things would be much easier. 

I know he's going to tell me I need to be hypnotized so that I can keep the stress from affecting my pain level, but hypnosis costs money that we just don't have and he doesn't seem to get that point. He also wants me in the pool 3-4 times a week, but now that I'm not a physical therapy patient, that costs money too.  It's kind of ironic (is that the right word?) once my son is deployed I get free membership at the YMCA, so I can go swimming all I want, then.

You think doctors who see patients with chronic conditions that prevent them from working would get the hint that we can't participate in all these things that insurance doesn't cover.

Well, I'm getting off on a rant and don't want to do that.

Thanks again for your support.  I'm hoping the doctor will have some solution for the awful pain in my hips and down both legs when I see him. I'll let you know,
Tracy