My turn...

[SandyRN]

Just needed to get out some frustrations and sadness that have been building up lately...pretty much the same ole same ole related to thinking about going back to work, but scared to try...and then with Halloween last night, I took my youngest kids out through the neighborhood, walking my dog with us the whole way, and I had to stop and come home because I just didnt have the stamina to continue walking.

I get winded going up the stairs....I sleep a lot during the day, or spend a huge part of the day on the couch, in the bed, or in the bathtub trying to escape the pain that just won't go away. Everything hurts, every muscle, joint, tendon, finger toe, and my entire pelvic region.

My life revolves around when my next pain pill dose is due or when I can use a b&o suppository and hope for some, just a little relief. I'm just weary of the whole thing.

Even the slightest things make me so very tired lately. I've had bloodwork done recently, so I know my thyroid levels are normal, but the lupus dx is still not firm.

I need to call my pain mgmt doc and see if I can get in early this month before I go nuts from the pain....I put on a smile for my kids and for Tom, but they can see thru me, and they all know I'm hurting....and I know none of them really know what to say to me anymore. I'd HATE to be them and have to see what they see in me every day. Bottles and bottles of meds, watching me in pain, trying to participate in normal activities....

Dont know, guess this is a bad day....some days are better than others, but sometimes I just am flat out tired of coping!! Or at least TRYING to cope! :dizzy: :dizzy:

[armslee]

Hi Sandy-
THe cycle is vicious isn't it? How is the Oxy working for you? I know some people have very good sucess with it and others don't. That could be something to discuss w/ your pain doc too. Tell him about your fatigue as well. Do you think that the Soma's may cause some of it?

As of lately I have stopped taking some of my meds because I couldn't handle the fatigue. I am only taking my Klonopin "as needed" now for anxiety because I hate being groggy in the mornings and not being able to wake up. Also the Elavil did me that way too. Good pain mgmt will increase your energy and stamina too. When I was on the roller coaster effect all the time I was constantly exhausted! I still have days that I am reallly tired but not everyday anymore. Since going on the Duragesic and using the Loratabs for breakthru I have been doing alot better and been much happier at work as well.

I hope you find something that works for you. I'd be happy to talk to you anytime if you want! :kissing:

[traceann]

Hey chickie you know we (and me!) are always - and I mean ALWAYS here to listen! I think it does a body good to just be able to get it off your chest and out of your head. Clears the way for new and improved! ;)

Sounds to me like you wouldn't be normal if you didn't feel down and frustrated with it all, ugh. It's not easy and you are doing a hell of a job putting one foot in front of the other!!!

Oh, wish I had magic words or a magic wand to wave to make you feel better, but I can offer a BIG FAT HUG!!!!!!!!!!!

XOXO

[Sarojini]

Sandy, I know how you feel. I ache and hurt so much lately, and I am so tired... I also had my thyroid levels checked and they were well within the normal range, so my PCP said it was probably fibro. I'm not sure... with all of the other immune issues I have, I am considering being seen by an immunologist/rheumatologist....

Anyway, this is about you... and I'm so sorry you are feeling so badly these days. I wish I knew some magic that would take it all away :grouphug:

Also, I want to tell you that I know what it's like to revolve around pain meds, and to try to put on my "happy face" at work and at home. One woman, our Chinese assistant professor, always sees through me -- she says she sees it in my eyes and "in my skin", and takes me into her office for chamomile tea and a rest with the door closed. Sometimes she gives me pep talks during these times, and sometimes we are just quietly resting, almost meditating.

I am eternally grateful for that, but I wonder what my boss thinks... does he think I'm just a slow worker, not up to the task, and/or a pain in the ass? My productivity would be so much better if it wasn't like this, and I know it...so I understand your fears of going back to work... some days I wonder why I did (I took a year off in 2004-2005). Then I remember how unproductive I felt at home, and I know that I'm stuck in a vicious circle -- can't stay home, but can't always work at full capacity either.

At home, it's just Hubby and I... but sometimes it happens that he wants to go out at night, and it's all I can do to get off the couch to get more water. I do it when I can though, and I try to tell myself that he understands... but he doesn't... at least not really, truly... not like someone else with these problems.

Life is hard like this, isn't it?

I just wanted to let you know that you are NOT alone :grouphug: I have these thoughts, this vicious circle of good and poor health, these struggles too. You know you can PM or email me whenever you need to just GET IT ALL OUT of your system... we can yell, cry, laugh, whatever together.

[SandyRN]

armslee, I don't think it's the soma because I've been on it for a long time. Most of the meds I take I've been on for years, but, that doesn't mean that some of them aren't causing me some side effects, in fact, they probably are. The oxycontin isnt working all that great anymore, and really hasn't been for quite a while. I recently added the b&o hoping for some overall relief since my pain doc has been hesitant to change my oxy dose. At this point I'd be willing to totally change my entire med routine...anything for some relief!

Jen, traceann, you know I love ya both....You've both been so good to me here and always have a kind word when I'm down. Thats what friends are for and I'm very lucky in that respect!

Jen, I know you've been having a really hard time lately, and I think about you often...I dont know how you work such a challenging job, but you do and you do it well! Sometimes I think we are our own worst critic and see ourselves differently than others do......I sit here thinking that my family must be miserable having to watch me go through all of this, and you worry that you are letting your hubby down and that the you are a disappointment to your employers.....I think we're both 'do'ers' and have been most of our lives (I know I used to be!!) and now that I just can't do all the things I used to I dont feel whole or useful anymore. It's really hard to overcome...I sure wish I had the answer for both of us.

This job I keep mentioning is the perfect job for me....one, two, or 7 days a week, 1, 2 or 10 patients a week, whatever I want. The nurses that were taking care of Tom all told me that I could get the job, they all knew about my pain meds and my physical problems, even the supervisor....but its ME thats stopping ME from even trying because of the way I wound up leaving my job at the hospital. I dont want to fail again, dont want to let anyone down, and really can't bear the thought of not being able to do the career I worked so hard for....but then again, it's easier if I dont try sometimes because then I'll never know, and wont have to fail.........hmmm...not sure if that ramble makes sense, but I think you know exactly what I mean.

Thanks so much guys...I really appreciate the replies!

[waterflow]

Sandy, wish I could make the pain all go away. I know where you are coming from. I think the pain just starts to wear us all down. Our bodies never have time to rest and recharge. I hope your pain maingt. can find something to help you out better. It sounds like your kids and husband are great. I'm sure the appreciate all that you do for them. :kissing:

[SharonA]

Sandy...I'm going to jump in here to add a supportive hug. I am so sorry you are feeling so poorly. :kissing:

I sometimes feel like such a lump. Feeling bad because I am not contributing to our household. Some days, all I want to do is curl up on the couch and watch TV. Then others, I do just fine. My emotions go up and down...up and down...like an elevator along with my productivity. Along with the aches and pains that come along with colder weather, I sprained my left ankle this past Saturday. Talk about feeling like a lump. I now walk like a lump and every muscle in my body is sore from limping. :mad:

I think we all need a trip to Club IC. Hot chocolate and a soak in a hot tub for all of us. Oh boy could I use a massage. Who's going to join me?

[SandyRN]

waterflow, I'm just so happy for you that you're going to get some relief from the pain!! Thanks for the reply :)

Sharon, is this where the cabana boys come in? hmmmmmmmm? :woohoo:

[Claredale]

Sandy, I am so sorry that you are having so much pain. I hope that help you feel understood. My kids are away at college now, so it's just my husband and I, but I know exactly how you feel about trying to act normal for the sake of everyone else. My doctor told my mom yesterday that IC is such a hard disease to treat since everyone reacts differently to all the treatments and it even changes on the same patient. I know I get so overwhelmed with everything I need to do and that is just extra stress on top of it.

Thanks for sharing your turn...

Hugs, Tracey

[SandyRN]

Thanks for the reply Tracey. I read that things are going really well for you right now and I hope it stays that way! Thanks for understanding!

Hugs, Sandy

[traceann]

Did I hear CABANA BOYS?????!!!!!!!!!!:dance:

[Ginny]

Your post said you possibly have celiac. If you are not sure you have it do you stay on the diet or only sometimes. It's a tough diet and tough to learn. I can help if you need it. I have had celiac for 19 years.
It can make you very tired if you are not 100% gluten free. You can get muscle pain.

Just a thought.

Ginny

[SandyRN]

traceann, yes, cabana boys.....sigh :)

Ginny, I think you sent me a bunch of links to the diet a while back. I've tried to be 100% gluten free when I was first possibly dx'd...I don't know that I have it, my blood tests said yes, biopsy said Crohns.......my gastro thinks I'm a freak of nature and so do I. I've tried to learn the diet, I really have, and I've tried to behave, but I feel SO restricted by this diet and the ic diet and honestly, right now I'm sitting here sipping on a COKE cuz I feel sorry for myself. LOL

I'm pretty sure I've saved the pm's you sent me somewhere on my computer, but you can definately let me know the links that you'd sent me before...I remember them being very helpful. January is my yearly at my gastro, so I will get this 'do I, don't I have it?' thing understood. I DO know for sure I have Crohns because the inflammation in my small intestine has landed me in the hospital more than once. :(

Thanks for the help!

[aprilmae]

I really hope you feel better soon. I did the woe is me yesterday and had some hot cocoa - used to be able to tolerate it once in a while and it is my favorite and I was just tired of not being normal. Can we say big mistake? What the heck - can't we just have a normal day once in while.

Don't you just love the GI visits. Still haven't been for my checkup - that was supposed to be in June. He just makes be so stinkin' mad sometimes.

[sandramac]

:pray: :pray:

[Claredale]

We all have those cravings. Hot chocolate is a downfall for me as well...especially mint choc..YUM!!! Now that it's starting to get cold, it gets so tempting!

Tracey

[traceann]

Ok Sandy, can we have them delivering those brightly colored drinks with little umbrellas and cherries????? PLEEEEEEEEEEEEEEASE???? (that was me whining, lol)

Mmmmm, me too hot chocolate serious downfall for me as well. It's something I am never without and the Swiss Miss with marshmallows is fairly reasonable calorie-wise. But then the extra gazillion marshmallows I put on top can't be healthy....lol

[Claredale]

I gave into the mint hot chocolate this morning. It was so good. So far, I haven't suffered the consequences.

Tracey

[poetgirl]

I hope things get better for you soon, Sandy, and you get some relief from your pain. You're a real trooper but I know it's got to be hard to deal with that every day. :grouphug:

[PlainJane]

I know I sound like a broken record but have you been thoroughly evaluated for Lyme disease? And I mean by a Lyme literate physician? And done more than the just the standard blood test which is pretty unreliable.

I ask because you have so many diagnoses involving so many systems.

~plainjane

[SandyRN]

I have been tested for lyme, but not by a specialist. This was way back when all the aches and pains started....after 3 rheumatologists, a few family doctors, 2 different neuros, I got the dx of chronic fatigue and fibro. The crohns came way before any of the other dx's, and the IC came later. I remember having 13 tubes of blood drawn once in the ER, and they were testing for all sorts of things, heavy metals because I guess they were so stumped they wanted to see if someone was poisioning me, and one for lyme...so there were a couple tests for lyme.


Doesnt mean I dont have it, just means nobody found it yet.

Thanks for the replies. I've got a call in to my local uro today to make an appt....I can't handle the trip to Greensboro to see Dr. Evans right now, so just gonna see what this guy can do with me now that I've actually SEEN the specialist. Something has to be done.

Need a new pain appt too, because I'm sick and tired of being in constant pain.

You guys are too funny.....I sure wish I had my own private cabana boy..not sure what I'd DO with him since I feel so bad, but he could sure take care of me.....um, with a backrub or something! LOL

[traceann]

LOVE the pics Sandy!! TOO CUTE!! And heh heh, the best thing about cabana boys it they do what YOU tell them to, so if just wanna look at 'em, that's fine and dandy... :evilsmile:

[Claredale]

I have been tested for lyme, but not by a specialist. This was way back when all the aches and pains started....after 3 rheumatologists, a few family doctors, 2 different neuros, I got the dx of chronic fatigue and fibro. The crohns came way before any of the other dx's, and the IC came later. I remember having 13 tubes of blood drawn once in the ER, and they were testing for all sorts of things, heavy metals because I guess they were so stumped they wanted to see if someone was poisioning me, and one for lyme...so there were a couple tests for lyme.


Doesnt mean I dont have it, just means nobody found it yet.

Thanks for the replies. I've got a call in to my local uro today to make an appt....I can't handle the trip to Greensboro to see Dr. Evans right now, so just gonna see what this guy can do with me now that I've actually SEEN the specialist. Something has to be done.

Need a new pain appt too, because I'm sick and tired of being in constant pain.

You guys are too funny.....I sure wish I had my own private cabana boy..not sure what I'd DO with him since I feel so bad, but he could sure take care of me.....um, with a backrub or something! LOL

Okay, what is the cabana boy story???

Sandy, your dogs are just too cute!

I hope that you are feeling better today!

Tracey
:smile tee

[traceann]

LOL, somewhere along the thread someone mentioned cabana boys, and well that got my interest, lol. I do believe a while ago, Sandy and I had a vacationing thread that we decided to have all cute cabana boys serving us... hee hee hee...all are welcome... ;)

[PlainJane]

Ok well I just thought I would mention the Lyme thing. Technically I tested negative by CDC standards but was diagnosed with Lyme. Actually I just got back from a specialist in New York and was diagnosed clinically with Lyme, babesia and bartonella. He told me the tests aren't great so even if you test negative it doesn't mean you don't have it. If you can afford it, you might want to look into seeing a Lyme specialist because a good one will understand that the tests aren't very accurate, especially in chronic Lyme.

Have you been tested for mycoplasma? I feel silly asking you these things because you are a nurse, right? So I'm sure you know about mycoplasma causing fatigue. I just thought I would throw these ideas out there.

~plainjane