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Posted 6/2/2008 6:44 PM (GMT 0)
eyes  I have been dx'd since 2006.  I feel I have accepted and managed this disease pretty well over the last 2 years.  I had a knee jerk response yesterday to a situation that made me realize that I am possibly still grieving.  Inadequacy...now there is a word seated in fear & anxiety.  But that's what I am feeling.  I have always seen myself as multi-faceted, multi-talented, able to see the "broader" picture in life and sniff out the most deviling details in any thing I do.  I have a positive attitude and a wonderful sense of humor that I refuse to give up to this disease.

Having said all that...where the heck did the knee jerk response come from!  Was it due to my recent dx with Fibromyalgia as well?  All of us with a chronic disease feel "beat up" from time to time and I had a bad weekend due to side effects of Humira and a Fibro flare.  I generally try and be patient and kind to myself and try to do the things that make me feel productive even when I'm in a down period, however, I just can't seem to jump this hurdle.  No, this isn't depression but it is very frustrating as I'm sure you can relate too.  I can't afford therapy right now with college bills, tax man & the ever present meds breathing down my neck.

I'd appreciate any input and/or experiences you can share.  You guys are my lifeline and I thank God each day that you're here! :-)   Just Another Day in Paradise!

Gayle

Posted 6/2/2008 8:46 PM (GMT 0)
The feelings of anxiety and inadequacy are something I have dealt with quite a bit since my dx in 1990. It can really get you down, especially when you're dealing with multiple illnesses. Listen, you are the same person you were before you got your dx. Life has thrown you a curve ball, but you ARE capable of knocking this one out of the park. You have to remind yourself that you can still accomplish many great things, it's just that these diseases are going to make you look for an alternative route to accomplishing them. You will have to take more "time-outs" than the average guy. Be glad for those too. The world we live in doesn't give anyone much of a chance to take a time out, so be glad you have them forced on you. As for the hurdle you are trying to jump - stop trying to jump it. Walk around it and keep going. "Mama said there'd be days like this" and you will have better ones too. Rely on your friends for support. And ask God for help to see how to get through it. You will get through it. Keep your chin up!
Posted 6/2/2008 8:59 PM (GMT 0)
Thanks Stef- I appreciate the baseball metaphor too....we are an avid baseball family with 3 players & 2 collegiate coaches. You couldn't have hit a better series! I am trying and yes I'll remember the good days are coming. Right now, I need to go apologize to the person I threw out of the game yesterday trying to be an umpire when I was just the waterboy "so to speak". Sometimes it's more my concentration level I miss the most which I realize comes from the fatigue & just plain weariness. Anyone else want to entertain my whinny self today? God, all this talk about baseball makes me miss hot dogs, popcorn & nachos....we won't even mention the beer....that's just too sad or the salted roasted peanuts...aughhhhhh!
Posted 6/2/2008 9:48 PM (GMT 0)
Broom, I think it's a natural progression!! With this disease and it's side kicks, we "naturally progress" into blithering idiots....
Then after awhile we return our almost near normal selves, until the next attack...

Everything you've said has happened to me and I feel your pain, but we will get back to some semblance of our former selves,
it might just take awhile. Hang in there, or should I say ' we'll hang in there together"
Posted 6/3/2008 1:37 AM (GMT 0)
Hi Dear Friend Your worth feeling the shock of having more to cope with and we know the feeling of always having to stay on top of things ,sometimes the top is a huge mountain to climb but you and all our friends will keep helping each other perhaps if we just keep our good spirits about us we will be more able to cope. Don't keep it all to yourself and let us help you . I been feeling like a truck ran me over lately but there are still those times when I have reached the summit. I know things will get less stressful for you in time. By the way what happened?If you want to talk about it I'am listening. What kind of therapy are you talking about? I know your strong of mind and stop worrying things gotta get better. Do you have to take many other meds with the fibro? I'am not missing the nuts besides monkey's love banana's.... lol gail
Posted 6/3/2008 2:15 AM (GMT 0)
You guys are so sweet. You always have the right things to say at the right time to make a body not feel so all alone. Who best to understand the ups and downs.

Gail, I've said my apologies and dealt with the wrath I dished out to an undeserving person. Still feel like a rat about it even though I've been forgiven. As for the meds the Doc changed me from Percocet to Ultracet for pain and it has helped some. He also had me start my Glucosamine back for the Osteo in my hands and told me to lay off my Boniva for Osteoporous for another month and see if I was having side effects from it. He plans on xraying my back when I go for my follow up in a month as a follow up to the AS bloodwork he did and to make sure nothing has fused or disinigrated. (Forgive the spelling and any typos...I am still rattling my brain with the Fibro fog). I've heard there is another newer drug for the Fibro, but he hasn't discussed it with me yet. One of the hardest parts of it for me to accept is that you can change your words around when you speak or spell. You also forget what you're saying in mid sentence at times. Most of us experience this from time to time but with Fibro it's pretty constant. Throw in the Crohn's fatigue to the mixture and you feel like a complete idiot! Hope your "truck" doesn't put it in reverse and you feel better soon! What's going on with you?
Posted 6/3/2008 2:29 AM (GMT 0)
Broom I think the new drug your doctor might want to try is lyrica. I hear it's a miracle for some people and their pain.
As for the fogginess I'm not so sure. My doc wanted me to try it, but with my pancreas having a hard time, I'm a little
leary about putting something new into my system.

I was diagnosed with fibro, about 5 years ago, and like crohns, I have my good times and my bad. So lets hope, that, the
symptoms you're having right now, will ease some. Mine does.

Good luck.
Posted 6/3/2008 2:41 AM (GMT 0)
Vicky- Yes that is the drug I was trying to think of. Maybe the Dr. is trying to see how I respond with the pain relievers and Glucosamine first before throwing another drug in the pot. It would be nice to know if there are any Crohnnies out there taking it and how it effects their stomach. I sure wish it would disappear! What do you think did your pancreas in? I have read some of you earlier posts regarding this but I can't remember if they nailed it down to any one thing for you.
Posted 6/3/2008 3:46 AM (GMT 0)
Broom...how I wish I could be there to give you a great big hug.
It's normal to be feeling the way you are. You've just been handed another chronic diagnosis of fibro.... You were given the CD one years ago, so you've had time to go through all of the grieving steps...you know...denial, depression, anger etc etc. so you've risen above it, and gotten on with your life....but with every new 'condition' or disease...comes new losses....and more grieving. You've got to give yourslef time to go through it all , as you did many years ago with the CD. There is no way around it....only through it. It's rough....and NOT FAIR! but you are a strong, courageous woman, whom everyone here admires so much. You WILL get through this new hurdle and be the stronger for it. Right now...just allow yourself time to digest it all, feel what you need to feel (without wasting energy berating yourself about feeling the way you do. ) This next stretch will be hard on you....but come and VENT all you want..... we are here for you....all "ears" as it were !
Love you and praying for you dear Gayle.
Mary
Posted 6/3/2008 5:04 AM (GMT 0)
Know what Ms Gail ? We all have those feelings and even if we say we dont, we do. If they persist you may need help to deal with them, but if they are short lived, let them go. Live the life that you want to live as much as you can. Take stock of what is good in your life and walk away from all the bad that you can. Know that there are many things we just cannot change. Smile, laugh, and be with people you love every time you have a chance. I try to live my life as though I have two days left. That way I do all I can to have a full life, but also have a reason not to do anything ,too, stupid. I have a habit formed of many years of mischance. I watch the sunrise each morning and its set each evening. Sunset means I've made it through another day. Sun up,,, another night. Warm hug,,,,((()))may you feel better about your tomorrows......
Posted 6/3/2008 12:29 PM (GMT 0)
Hey Broom...just wanted to throw in my support. The only thing I can say helped me when I had the foggy brain feeling is slllllloooooowwwwwwwinnnggg dddoooowwwwwn every conversation I had. I made a concerted effort to speak very slowly and listen to myself as I spoke. I always say I have cotton in my brain when on prednisone (that's in your list and was wondering if your on that still). I once had to make a major presentation for work in one of my worst fog brain states. I just made longer pauses and spoke very slowly. I then carried that into every day conversation because it worked so well. I found myself making less word inversions and stayed on track better. Later my boss said he could tell that I was trying to make sure everyone understood my presentation and it was great (wow had him fooled).
Other than that....I just want to say you will get past this bit. Everyone makes gaffes when dealing with other human beings. You are just more conscious of yours because you know there is a cause. Take care and keep talking to us....you deserve a boost too!
Posted 6/3/2008 12:54 PM (GMT 0)
Hey Broom , it was 6mp that got my pancreas...

Let me know if you decide on Lyrica, I know it was first used for pain in patients with shingles, then they
realized it's potential for fibro. So it is now the only FDA approved drug for the disease...
Posted 6/3/2008 1:31 PM (GMT 0)
Hey Broom as others have said above, we know how you feel. For me it seems like each year I live with Crohns brings something new to my plate. I have Crohns, Fibro, osteoarthritis, inflammatory arthritis, GERD, mechanical problems etc. I have had to learn to take just one day at a time. That's all I can do, if others don't like it, they can bite me:)

So have you started using the Glucosamine? How is your tummy handling that? I have been thinking of trying it, but am a little scared because I have such a sensitive gut.

Hope things start looking up for you soon.
Posted 6/3/2008 9:47 PM (GMT 0)
Bbbrrrrt....Bbbbrrt....Brrrrt...Just trying to jump start the broom again today. Opps....that noise came from elsewhere! :) Yeah, I try to approach each day on it's own merit. Today was a teensy bit better. The only 2 boneheaded manuevers I made today was I left the bathroom window open all day whilst the AC was running and tried to steam veggies in my double boiler! DUH! I did tell my husband about the brain fog yesterday. I was hesitant to tell anyone about that part of it. I just don't trust myself with some things now.
He's just gonna half to get used to checking behind me!

Nanners- I like your spunk and yes I have started the glucosamine. No it doesn't upset my stomach and I think it would be great for you especially since you are still recovering from surgery. I know when I took it after my resection it cut my pain relievers in half.

Habs-Speaking slowly is an excellent idea I had not thought about. Wow, public speaking with Fibro...that would have really freaked me out...you are amazing!

Dunny- If it relieves the pain of shingles then I'm sure it has merit to it! The ultracet seems to be doing the job for now so I'll keep the big guns in reserve when I build a tolerance to the utracet. Thanks for the info!

Sniper- You're response was super special coming from someone who has jumped mountains lately! It put my life back in perspective!

Mary- Thanks so much for the prayers...I can't believe you took the time to post considering you're having a tough time yourself. I'll be praying for you too!
Posted 6/4/2008 1:06 AM (GMT 0)
Hi Glad to hear your telling H your problems it's good to let others know what frustrates you .Hey great cooking skills. I am off to eye DR. and GI tomorrow so how's that for a double boiler. I do some things that are pretty wierd to. I am not doing too bad today actually dug up the septic that needs emptying so felt good about that. A woman just cain't get by without her powder room if you know what I mean. lol gail
Posted 6/4/2008 2:37 AM (GMT 0)
Another thing to consider is the medications you are taking. I find that when I'm on 40+ Mg/day of Prednisone that I am a very unpleasant person if I don't carefully watch what and how I'm thinking of things... It almost cost me a job once. Review your meds and the possible side effects. I also end up in a near manic anxious state with ideas racing through my head faster than I can track them... I once spent an entire night jotting down some crazed ideas on hydrogen fuel and various machine designs because i could not eliminate them from my head. I also become very "hidebound" and unable to see things from others points of view.

If you are currently on Prednisone, that may be a contributing factor. Being at the two year mark you may well have hit the nail on the head with it just being frustration with this being a very big change in your life. If your experience goes like many peoples you'll experience ups an downs with the management of the disease. It can be (and usually is for me...) a rollercoaster ride... So learning to just go with the flow, roll with the punches... ummm what's a good baseball metaphor? (sorry I'm rather ignorant on baseball) is the best coping skill you can develop right now.

"Stay hopeful, take nothing for granted, and remember 'this too will pass'" are the cliches I try to recall when medical gunk has me feeling down, confused or just cranky.
Posted 6/5/2008 3:19 AM (GMT 0)
Jason- Yeah the pred does do freaky things doesn't it. I need to update my profile for I haven't been on the pred since February. The baseball metaphor you're looking for is "ALWAYS WEAR YOUR CUP"! :)
Posted 6/5/2008 4:26 AM (GMT 0)
LOL, always wear your cup,,,,,hehehehe ,,,I must remember that one.,,,,was that a Yogi ism ???
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