Physical Disability & Self-Esteem: Life As It Is Now, Coming To Terms, Rising Above

[DAYWALKER]

I've had mobility issues since I was born, and I used to have to see a physical therapist once a week when I was a kid for the stuff. I had trouble w/ gross motor & fine motor coordination, and I couldn't do some of the stuff that most people had an easier time doing- like standing on one foot, walking in a straight line, etc. Playing sports helped my balance and coordination and I still play sports with the best of it...I'm strong, I can throw, catch, hit, swim, skate, etc. I'm not the best out there but I do a decent job, so it's hard being good at that stuff and also trying to create awareness that I do have balance problems....because they're not always obvious.

I can't balance on the bus and that's difficult on me. I have as much trouble on MUNI as an 80 year old. Tell society to believe that. They won't.

The thought of Parkinson's disease scares me because my paternal great grandmother had it. I have an aunt who also has MS. I've had a lifelong balance/coordination problem (how I can play the guitar and trumpet as well I don't think anyone will ever understand) and sometimes I wonder where this is going to go for me.

In my mid twenties it PAINS me to write that my gait can be poor and uncoordinated at times. Usually I'm okay, but often I'll easily lose my balance out of nowhere and can trip or start tipping over and it's NOT about being clumsy or klutzy. I can go ice skating, as long as I'm in a constant motion it's mostly ok. But I've felt my right upper leg starting to hurt when I turn it at a certain angle or shift my weight onto it and I'm not sure what that's all about. I've kept silent about a lot of my problems/disabilities because I don't want to be thought of and pitied as the young woman with all those aches and pains and medical problems. They're just things I have to deal with, the disabilities I have, just like the next individual has relationship problems or kid problems to deal with.

Ali Mac

Ali Mac...
I related so very much to this post.
I have never been one who possesses a large module of coordination. In school...lol, I purposely chose sports that required very little of it. I did Power Lifting, Field Hockey, and Volleyball; sports that I could fall all over the place, and still look like the rest of the players...lol, or Lifting, where I didn't have to do much more that certain standing positions in a coordinated manner. I have pains everywhere from the MS, and from RA which has caused powerful crepitence in the fingers, wrists and entire spine. I say nothing of the pain most of the time, so folks who know me are aware that if I get too quiet...lol, then something is going on.
I have the standard gait walk too...but I like to endear it with the term "The Ozzy Shuffle"...lol, because it seems to knock it down a notch or two on the scale of all things awful to to deal with. My Grandfather dies of Alzheimer's and Parkinson's, but there are no other (known) neurological disorders in our family history.
Just remember that everyone is different in how the same conditions can react to each individuals capability to absorb certain symptoms. You seem to have an awesome attitude, and many talents. Thank you for sharing this, and try not to worry too much...to soon. You have a great many other things to deal with in life, lol...just like most of us. Try not to allow this one to take the front seat...lol, yes?

[LADY FLAMEZZZ]

Ali Mac...

I related so very much to this post.
I have never been one who possesses a large module of coordination. In school...lol, I purposely chose sports that required very little of it. I did Power Lifting, Field Hockey, and Volleyball; sports that I could fall all over the place, and still look like the rest of the players...lol, or Lifting, where I didn't have to do much more that certain standing positions in a coordinated manner. I have pains everywhere from the MS, and from RA which has caused powerful crepitence in the fingers, wrists and entire spine. I say nothing of the pain most of the time, so folks who know me are aware that if I get too quiet...lol, then something is going on.
I have the standard gait walk too...but I like to endear it with the term "The Ozzy Shuffle"...lol, because it seems to knock it down a notch or two on the scale of all things awful to to deal with. My Grandfather dies of Alzheimer's and Parkinson's, but there are no other (known) neurological disorders in our family history.
Just remember that everyone is different in how the same conditions can react to each individuals capability to absorb certain symptoms. You seem to have an awesome attitude, and many talents. Thank you for sharing this, and try not to worry too much...to soon. You have a great many other things to deal with in life, lol...just like most of us. Try not to allow this one to take the front seat...lol, yes?

this is so sweet of you Baybee.
your gift to others in order to make it a little easier on them. i admire your strength and courage so much.I love you.

by the way DW is home today from work due to sum health related issues rib compression "the MS hug"..........ya'll please send good stuff hys way.

hy did concede to medicate "somewhat" with this hys stubborn attitude takes a back seat at times to the pain.so hy is smiling,lol "kinda".....

many blessings to you all and please take care.

[DAYWALKER]

this is so sweet of you Baybee.
your gift to others in order to make it a little easier on them. i admire your strength and courage so much.I love you.

by the way DW is home today from work due to sum health related issues rib compression "the MS hug"..........ya'll please send good stuff hys way.

hy did concede to medicate "somewhat" with this hys stubborn attitude takes a back seat at times to the pain.so hy is smiling,lol "kinda".....

many blessings to you all and please take care.

The only HUG anyone should ever be weary of...lol, is the MS Hug.

Don't know if any of you know what that is like, but I can tell you that it
compares to having King Kong pick you up and squish you
hard for a few days!

It was a rare time that I chose to allow myself to medicate with Soma.

I've had 2 in two days...lol, and for me that is a lot of meds!

Thank goodness for harvest time of the "green" medicinal marijuana too!

Boy howdy, the two of them working hard together has helped
me out immensely!

Heading for work soon, but had to stop in and say hey to everyone,
and a huge thank you to M'Lady for taking care of me during all this.

Thank you M'Lady!

[guitarboi]

I hope you feel better Daywalker. My concentration is low today. Pain level is up. Trying to not let it get me down.

[WolfiEyes]

Well wishes for all

DW and GB sending light your way

JJ

[Shyfemmekat]

DAY, left you a feel better voicemail on your cell, hope today was a much better day...

Hugs,
SFK

[Shyfemmekat]

Just driving by to let you all know you are in my prayers. I have been so busy!!! They sent me a "Wardrobe Guidance" list which was so picky. No patterns, stripes, spots, shiny or sparkly stuff, no suits, no red, no white....

Thank goodness this one cut rate store had two things and Rhon got me a couple things at Catherine's. I go pick up the teal outfit tomorrow from the alterations place. Long story there..will tell about that when I get back.

I switched shot days so I wouldn't be flying the day after my shot and super vulnerable to bugs. As a consequence I got deathly sick from my shot yesterday and spent basically the whole day in bed with brief forays for food, bathroom, trips to shuttle laundry in & out and dog to outdoors for potty. I have so much to do it's nuts. I was hoping to reach one of my peeps to pray with me but no call backs from either.

Wishing you all a safe and happy weekend. I am taking the camera this time so there will be pics when I get back.

ShyFemmeKat

[OutlawDaddy]

I'm sick and miserable. Crohn's flare extrordinaire. Called the dr on Tuesday, no return call, called the dr today, "Sorry we're celebrating with a Holiday Party and the office is closed." (I hope they aren't eating anything, because I'm not able to.) Bastids.

[DAYWALKER]

DAY, left you a feel better voicemail on your cell, hope today was a much better day...

Hugs,
SFK

Well shyt...lol!

I didn't recognize the number and didn't answer it!

Crap...lol, I will listen to your VM and maybe call ya later, or tomorrow.

Thank you Miss Shy...once again, you ROCK!

[Simcha]

I had no idea this thread existed. You folks are awesome! I love the support and encouragement you have for each other.

I have back issues, most of which are inherited. There have been times since I was young when I was supposed to walk with a cane to avoid a great deal of pain either while walking or afterwards. I chose not to use it and due to my ego suffered greatly.

I had a b/f several years ago who was less than understanding about my mobility. Hy liked going for long walks and would often leave me behind claiming that either hy or the dog could not walk that slow or stop so many times. I must say that there is nothing like the warm fuzzy feeling you get from watching the person who professes love for you walk about a quarter mile ahead of you and, knowing you are struggling, never looking back to see if you are OK much less stopping and waiting for you to catch up. Hy knew I was in pain and never once asked me if there was anything hy could do for me. Hy told me I needed to keep walking to increase my stamina; that walking was important and if I could not keep up then perhaps we were not meant to be. Needless to say we did not last much longer. Hy (so imperfect hymself in so many ways and also with a colossal ego) demanded perfection in hys femme and I tried to oblige and so did not even consider using my cane even when the pain was so bad I could barely breathe.

My partner/husbutch/soulmate is a totally different person. Hy is always making sure I am OK and have what I need. If I am having trouble putting on my shoes and socks - which does happen from time to time - hy is right there to help me. Hy is very attentive and my parents adore hym. Hy insists I use my cane whenever and whereever. Hy will massage the areas in my lower back which cause me the most trouble. Hy loves me without condition and after my past experience that took some getting used to. I kept waiting for the other shoe to fall and it has not. I am a very lucky femme to have found someone so sweet, caring and selfless.

I am doing everything I can to avoid having surgery and so far things are looking up. I have a wonderful chiropractor who has made a great deal of difference for me. She uses a holistic approach and I love it. I have been making progress and hope it continues.

[beachcat]

Good Morning:

I also just found this thread and have subscribed. I have CMT -- the nerves in my arms and legs are slowly being destroyed. There is no treatment. At one time in my life I was a dancer and choreographer, now I walk with a cane. I can echo so much of what I have read here. Thanks so much to everyone who has posted.

T. Lee

[LADY FLAMEZZZ]

The only HUG anyone should ever be weary of...lol, is the MS Hug.


Don't know if any of you know what that is like, but I can tell you that it
compares to having King Kong pick you up and squish you
hard for a few days!

It was a rare time that I chose to allow myself to medicate with Soma.

I've had 2 in two days...lol, and for me that is a lot of meds!

Thank goodness for harvest time of the "green" medicinal marijuana too!

Boy howdy, the two of them working hard together has helped
me out immensely!

Heading for work soon, but had to stop in and say hey to everyone,
and a huge thank you to M'Lady for taking care of me during all this.

Thank you M'Lady!

my pleasure !!!

anytime i can witness you on a soma is fun time for me,lol

Daddi on pillssssssssssss ... one pill to hym is like five to someone else,lol

glad you feeling sum better baybee
i see the struggle in your eyes btw
just to let ya know
you aint hiding shit from me,lol

[LADY FLAMEZZZ]

DAY, left you a feel better voicemail on your cell, hope today was a much better day...

Hugs,
SFK

you are truly an amazing woman
your plate is so full and you take time to call Daddi and check on hym

i am humbled by you Missy.....your a fantastic woman.your path has made you so strong Shy. please let me say ,you are admired by me and a very welcomed name in our home !

thank you for making time for friends

blowing ya a kissy pooh

[Jules]

Day and Shy,
I wanted to rep you for your posts the last couple of pages. However, I must spread some around first. (That's all I've read since I don't have the wherewithall to go through all of the posts in the thread.) After reading your posts, I realize the problems I am facing are insignificant compared to yours. What I'm trying to say is: I greatly admire your attitudes, sense of humor and approach to your illnesses. It acutally lifts me up to read your posts and has helped me to change my attitude towards my own situation.

You guys are just too cool and I look forward to reading more of your posts.

Best wishes to you both, and your partners for a wonderful Christmas and holiday season. I also extend my wishes to everyone here who is dealing with physical problems a wonderful holiday season filled with cheer and happiness.

Jules

[Jules]

I would like to amend my post to say that I feel the health problems I am now facing are insignificant compared to the problems MANY of you are facing, not just Shy and Day. I, in no way, mean to minimilize issues that others of you are facing. Since my above post I have gone back and read the entire thread (whew!) and must express my admiration for all of you that are facing health issues and how you deal with them. You all are great, courageous, and brave.

[BlueMoonWolf]

I had no idea this thread existed. You folks are awesome! I love the support and encouragement you have for each other.

*snipping a perfectly wonderful post* I am a very lucky femme to have found someone so sweet, caring and selfless.

I am doing everything I can to avoid having surgery and so far things are looking up. I have a wonderful chiropractor who has made a great deal of difference for me. She uses a holistic approach and I love it. I have been making progress and hope it continues.

Hiya Simcha!

Welcome to the thread! I am so glad that you have a positive influence with you now and that you have been progressing.

Good Morning:

I also just found this thread and have subscribed. I have CMT -- the nerves in my arms and legs are slowly being destroyed. There is no treatment. At one time in my life I was a dancer and choreographer, now I walk with a cane. I can echo so much of what I have read here. Thanks so much to everyone who has posted.

T. Lee

Welcome to the thread beachcat! there are a lot here that can echo having to change the job you once held dear.

I would like to amend my post to say that I feel the health problems I am now facing are insignificant compared to the problems MANY of you are facing, not just Shy and Day. I, in no way, mean to minimilize issues that others of you are facing. Since my above post I have gone back and read the entire thread (whew!) and must express my admiration for all of you that are facing health issues and how you deal with them. You all are great, courageous, and brave.

Okay i tried to go back to find your post but i am thinking that you had migranes? forgive me if i am wrong, but it still is something that you need to overcome. I mean there is only so much you can do when you are avoiding light like the plague to try and get some relief? what i am trying to say is that just because you don't have the same disablity as some in here it doesn't make your disabilty any less challenging for you.

BMW

[Jules]

Okay i tried to go back to find your post but i am thinking that you had migranes?

Actually I am dealing with issues that resulted from gastric bypass surgery...But that's ok, I don't know if I have posted on this thread in the past. For those that don't know about my situation, I'll try to explain without being long-winded.

I've had 2 surgeries since the original gastric bypass both for ulcers. I am on my second go round of "tube feedings" to try and gain weight. I have a tube inserted in my chest that goes into my heart. I hook this tube up to a "bag o food" daily and it runs for 16 hours. This is basically my nutrition since it is difficult to eat because of the ulcer, which is very painful to say the least. Basically that's the story without going into boring detail. However, again I say, it seems trivial compared to what other's here are facing.

[guitarboi]

Try if you can the BRAT diet bananas white rice and toast...or canned chicken noodle soup like Campbell's. I got UC for 23 years. You have my empathy. If it gets to be so bad, go to the ER for the very least to get hydrated.

I'm sick and miserable. Crohn's flare extrordinaire. Called the dr on Tuesday, no return call, called the dr today, "Sorry we're celebrating with a Holiday Party and the office is closed." (I hope they aren't eating anything, because I'm not able to.) Bastids.

[DAYWALKER]

Try if you can the BRAT diet bananas white rice and toast...or canned chicken noodle soup like Campbell's. I got UC for 23 years. You have my empathy. If it gets to be so bad, go to the ER for the very least to get hydrated.

Here Here!

Lol, and next time OD...crash that freaking party and let them
know who's the hungriest of them all!

Gboi...that kinda diet would kill me.
Just kill me.

I gotta have my food...lol, ya know?



Jules, Simcha, and beachcat...welcome to the thread!

Feel free to share anything in here...lol, and if Jules read through
the whole thread...lmaoo, then the sharing of me messing in my
slippers was in there somewhere!
Lawd, what I won't do to make myself laugh about
the icky things...lol!

Nothing like a big round of applause for those moments when
hindsight slips and falls on its ass too...yes?

I spoke with Shy this morning, and she sounds less nervous than
she lets on to..lol, I think she is fretting more over how tiring this is
all going to be for her. Let's all send her our well wishes for this
weekend, and hope that the commercial shoot goes well...!
Crap, lol...I forgot to tell her to get me an autograph pic of Montel!

Lol, that's ok, she left the information to where she's staying
somewhere in this thread...lol!


Have an excellent weekend everyone!

[micpfef]

Hello All.

It has been awhile since I have been in. I had a few OUCH days with realizations. You know the door slams into your face and you have to realize what is in front of you.

I saw an ortho doctor about my ankle pain (not sure if I posted on that or not) but she said that the only relief would be to fuse the joint. My last surgery for "repairs" was in June of 2005 and already the joint has enough degeneration that they could do another scope. I told her no to the surgery though and she wrote for a different kind of brace to trade off and on with my other one and for physical therapy to get some entrapped nerves out of the scars. Hopefully it will help but I have to finish classes first before I head toward setting up appointments and such.

I had a fiasco with my meds but that has been resolved. The new primary care doctor is nice. My new shrink is cool too. That was another hard appointment. To tell all that I have been through in the past is difficult. Add to it the surgeries and such that I have had for my ankles, my female organs, my gallbladder, and whatever else I might be forgetting and I have to remind myself that yes I do have a 37 year old body still.

The other slap in the face is good and bad. I have been doing better with walking with the cane since I posted in here and got everyone's kick in the behind and support. I talked to my primary care doc about getting a scooter and she set me up for an evaluation. Well..... my insurance is Medicare and basically they only approve if you need it inside the home. The consult person told me he believed that I would be approved It is sad but it is good too. To have reality look me in teh face that I just cannot walk for long periods and how it affects me when I do and how limited I am is hard. But to be getting either a power wheelchair or a scooter will open up my life so much. San Francisco's public transport isn't wonderful but it isn't bad either. A lot of buses and such are handicap accessible and they have spots for those in wheelchairs and such to ride. I think it is better than some place if not most places. It is just hard to digest at times. But I am hopeful for being able to get down to watch the water more which is reward enough of its own.

Welcome to the newcomers. Shy I hope things are going well for you. I understand the tired fear. It is almost a terror for me.

Jules, never discount your stuff. Every person on this site could say they have a disabililty and it is not if it is worse or less than anyone's here. It is just a reality that illness happens. TPN is rough too. A royal pain and a lot of work. You are in my thoughts hon. I hope you get to feeling better soon. It is hard on teh body to be doing TPN but harder when you aren't getting any nutrition.

Day glad Your lady got to see you loopy. She so enjoys her laughs with you.

Hugs all,
Michele

[DAYWALKER]

my pleasure !!!

anytime i can witness you on a soma is fun time for me,lol

Daddi on pillssssssssssss ... one pill to hym is like five to someone else,lol

glad you feeling sum better baybee
i see the struggle in your eyes btw
just to let ya know
you aint hiding shit from me,lol

Lol...

I have no idea what you are referring to...lol,
I ain't trying to hide nothin' woman.

Make all the fun you want about me on pills...lol.

Just know that I wouldn't want anyone but you by my side
when they make me drool all over my pillow...lol!



I love you baybee...!

[LADY FLAMEZZZ]

Lol...


I have no idea what you are referring to...lol,
I ain't trying to hide nothin' woman.

Make all the fun you want about me on pills...lol.

Just know that I wouldn't want anyone but you by my side
when they make me drool all over my pillow...lol!

I love you baybee...!

your such a smooth talker,lol

[guitarboi]

awww...nice to hear the ole gboi name. only daddyrhon calls me that these days

well what it comes down to is some foods ain't worth the pain and misery and cause knifeblade like pains in the guts if eaten by us with UC/Crohn's. I'll never forget one time after a GI appt I went to the hospital cafe and bought some oreo cookies from the vending machine and I didn't know my GI doc was a few people away from me She grabbed the cookies from me and scolded me if I wanted to ever hit remission I needed to watch my diet. then she ate the cookies

I can laugh about that now

hope everyone is doing ok. my attention span is a bit short.

Here Here!

Lol, and next time OD...crash that freaking party and let them
know who's the hungriest of them all!

Gboi...that kinda diet would kill me.
Just kill me.

I gotta have my food...lol, ya know?



Jules, Simcha, and beachcat...welcome to the thread!

Feel free to share anything in here...lol, and if Jules read through
the whole thread...lmaoo, then the sharing of me messing in my
slippers was in there somewhere!
Lawd, what I won't do to make myself laugh about
the icky things...lol!

Nothing like a big round of applause for those moments when
hindsight slips and falls on its ass too...yes?

I spoke with Shy this morning, and she sounds less nervous than
she lets on to..lol, I think she is fretting more over how tiring this is
all going to be for her. Let's all send her our well wishes for this
weekend, and hope that the commercial shoot goes well...!
Crap, lol...I forgot to tell her to get me an autograph pic of Montel!

Lol, that's ok, she left the information to where she's staying
somewhere in this thread...lol!


Have an excellent weekend everyone!

[guitarboi]

thank you buddy! hope u are well!

Well wishes for all

DW and GB sending light your way

JJ

[Jules]

Michelle,
How nice to hear from you and thanks for the kind thoughts. Actually, I was surprised to see you mention TPN since I didn't ever name my "food." So, you must know a little about what I like to call "fake eating." Impressive! I would like to join Day in the "looped" category. They have me on Vicodin for the ulcer pain and I am continually "looped." I'm surprised it doesn't show in my posts!

And I'm glad you're getting a scooter. It should help you so much and give you much more freedom. Will it have headers and a 4 speed????

Jules

[micpfef]

Michelle,
How nice to hear from you and thanks for the kind thoughts. Actually, I was surprised to see you mention TPN since I didn't ever name my "food." So, you must know a little about what I like to call "fake eating." Impressive! I would like to join Day in the "looped" category. They have me on Vicodin for the ulcer pain and I am continually "looped." I'm surprised it doesn't show in my posts!

And I'm glad you're getting a scooter. It should help you so much and give you much more freedom. Will it have headers and a 4 speed????

Jules

Hi Jules,

I am assuming it is Total Parenteral Nutrition. Nice yummy liquid bags that go through a hickman or another type of cathedar into your main artery so you don't have to be stuck a gazillion times anymore.

When I was with Kim I got used to all the good terms for her: TPN, J-tube, G-tube, hickman, port, arterial stick, blah blah blah.... I hope you get your fake food already mixed cuz I know mixing it is a bugger with all the sterile proticol and such.

Actually I will probably be getting a motorized wheelchair instead of a scooter. I can't steer them in stores so I really didn't think it would be wise to be steering one on the streets. I have a visual problem where I am not good with spatial relations. I will part 3 feet behind someone thinking I am right up on their bumper.

They go around behind me in stores picking up the end caps (yes the whole things) becasue I knock them off. So hopefully it will be a wheelchair instead. So I dont' scare everyone around me.

Take care.
Michele

[OutlawDaddy]

Thanks everyone for the warm wishes and support, I really appreciate it.
I have struggled with Crohns Dx for a long time and had an actual diagnosis about 20+ years ago. Some times are better than others, some times I can be in remission for months and sometimes, it is a royal pain in the ass (hahahahahahaha)

I did an elimination diet this time and I feel better. I eliminate everything from my diet, and then slowly re-introduce foods. The funny thing about this disease is that different foods bother me at different times. 10 years ago I couldn’t touch soy protein, now I can't get enough of it...so I can never say never except for a few hard learned choices that I know I will never touch (Popcorn...peanuts...etc.)

I have had surgeries and the gamut of meds including years of prednisone before there was anything else. The last round of REMICADE was really wonderful and after three treatments, I was in remission. The problems now aren't so much the Crohn's that is active as it is narrowing, looping, scar tissue and fistulas...and a Crohn's related eczema/extra intestinal manifestation.

I am trying to stay out of the hospital for Christmas, The First hospitalization I had this year was in June/July and I am just recovering from that and a short absence from work. If I have to go again, I will refuse pred and solumedrol...I have osteopenia...I have too much scar tissue to re-use the last port site, so they will have to choose the other side. If I go NPO for longer than 10 days, I will probably go to TPN and a G-tube (Snuffalufagus) I will also refuse Lipids because last time I mysteriously got Pancreatitis after a lipid treatment.

ANyhoo...I am going to buy myself a masticulating Juicer for Christmas. My diet is not bad, except for that morning can or Mountain Dew, so I have eliminated that now and hopefully will keep it out, but usually as soon as I feel better; it is the first thing re-introduced to my diet! HA! I am making the switch to a more natural-products for cleaning; I think my skin and the environment will appreciate the break from harsh detergents and phosphates.

Needless to say, I'm having a hard time sleeping; it feels like I have a live lobster in my gut, pinching my gizzard and guts. But anyhoo, I increased my diet from NPO to broth and then JELLO, both hot in a mug (fills you up) and cold/solid from the fridge I then introduced applesauce (My personal favorite) and Non dairy pudding, That wasn't such a good idea, so I moved to saltines and brown rice and plain baked potato...I hate the if it's white, I can eat it diet, but tomorrow is a big big day...Fish...white fish...poached...cross your fingers folks!



I'm sure this is filled with creative spelling alternatives, especially because I broke the U key on my laptop. Work has me off to NYC this week, so I will keep in touch as I can. Thinking of you all and wishing you a happy and healthy holiday and new year.

[guitarboi]

Foods do vary for me too. I used to be able to eat rice and now it's not an option. Soy can be tricky too. The one thing that remains consistant is I can not handle meat. White fish yes. Even when I am at my worst, if it's brolied I can usually stomach it. Sometimes baked potato with a bit of lemon squeezed on it and Mrs. Dash instead of salt and pepper too.

I understand your reservations about pred and solumedrol due to osteopenia but sometimes it's a trade off. The last time I had prednisone it was a living hell but I am in full remission. Believe me I always have reservations about taking it. There are medicitions that can restore your bones these days. I don't know the extent of your osteopenia and am not in your shoes. I just can empathize since all you have described sympton wise I have experienced. G tube or pred is like the less of two evils....Again I am not in your shoes. Just concerned. Also I have had pancreatitis 2 times in a 4 month period. It's pure hell. My immune system rejects DMARDS like Remicade.

Has your GI doctor tried the azulfidine family of meds?

I have no idea how you can work when in so much pain. More power to you. When I am that bad off I am one cranky mo-fo in bed! Good luck Outlaw. PM me if you wanna chat and I think green jello tastes the best. I hope you can have fish or something nice over the holiday.

GB

Thanks everyone for the warm wishes and support, I really appreciate it.
I have struggled with Crohns Dx for a long time and had an actual diagnosis about 20+ years ago. Some times are better than others, some times I can be in remission for months and sometimes, it is a royal pain in the ass (hahahahahahaha)

I did an elimination diet this time and I feel better. I eliminate everything from my diet, and then slowly re-introduce foods. The funny thing about this disease is that different foods bother me at different times. 10 years ago I couldn’t touch soy protein, now I can't get enough of it...so I can never say never except for a few hard learned choices that I know I will never touch (Popcorn...peanuts...etc.)

I have had surgeries and the gamut of meds including years of prednisone before there was anything else. The last round of REMICADE was really wonderful and after three treatments, I was in remission. The problems now aren't so much the Crohn's that is active as it is narrowing, looping, scar tissue and fistulas...and a Crohn's related eczema/extra intestinal manifestation.

I am trying to stay out of the hospital for Christmas, The First hospitalization I had this year was in June/July and I am just recovering from that and a short absence from work. If I have to go again, I will refuse pred and solumedrol...I have osteopenia...I have too much scar tissue to re-use the last port site, so they will have to choose the other side. If I go NPO for longer than 10 days, I will probably go to TPN and a G-tube (Snuffalufagus) I will also refuse Lipids because last time I mysteriously got Pancreatitis after a lipid treatment.

ANyhoo...I am going to buy myself a masticulating Juicer for Christmas. My diet is not bad, except for that morning can or Mountain Dew, so I have eliminated that now and hopefully will keep it out, but usually as soon as I feel better; it is the first thing re-introduced to my diet! HA! I am making the switch to a more natural-products for cleaning; I think my skin and the environment will appreciate the break from harsh detergents and phosphates.

Needless to say, I'm having a hard time sleeping; it feels like I have a live lobster in my gut, pinching my gizzard and guts. But anyhoo, I increased my diet from NPO to broth and then JELLO, both hot in a mug (fills you up) and cold/solid from the fridge I then introduced applesauce (My personal favorite) and Non dairy pudding, That wasn't such a good idea, so I moved to saltines and brown rice and plain baked potato...I hate the if it's white, I can eat it diet, but tomorrow is a big big day...Fish...white fish...poached...cross your fingers folks!



I'm sure this is filled with creative spelling alternatives, especially because I broke the U key on my laptop. Work has me off to NYC this week, so I will keep in touch as I can. Thinking of you all and wishing you a happy and healthy holiday and new year.

[OutlawDaddy]

I plan to PM you as well, but just so other folks know this is a potential resource, I use(TFT) Thought Field Therapy to help manage the chronic pain.

"Thought field therapy (TFT) is a method of treating psychological and related disorders based on the belief that imbalances in a person's vital energy (or qi in Traditional Chinese Medicine) can cause adverse physical or emotional distress. Developed in 1981 by California clinical psychologist Dr. Roger Callahan, TFT is now used to treat a range of conditions, including post-traumatic stress disorder (PTSD), phobias, anxiety, depression, addictive urges, arthritis pain, and insomnia." http://www.wholehealthmd.com/ME2/dir...DF2BE67&tier=2

Omgoodness, I forgot to mention, I have a serious sulpha allergy that limits most azulfadines, but I take Asacol 12/day and Flagyl which makes me feel like I am chewing on a steel I-beam.

[guitarboi]

I'll look into TFT. Thanks bud

I plan to PM you as well, but just so other folks know this is a potential resource, I use(TFT) Thought Field Therapy to help manage the chronic pain.

"Thought field therapy (TFT) is a method of treating psychological and related disorders based on the belief that imbalances in a person's vital energy (or qi in Traditional Chinese Medicine) can cause adverse physical or emotional distress. Developed in 1981 by California clinical psychologist Dr. Roger Callahan, TFT is now used to treat a range of conditions, including post-traumatic stress disorder (PTSD), phobias, anxiety, depression, addictive urges, arthritis pain, and insomnia." http://www.wholehealthmd.com/ME2/dir...DF2BE67&tier=2

Omgoodness, I forgot to mention, I have a serious sulpha allergy that limits most azulfadines, but I take Asacol 12/day and Flagyl which makes me feel like I am chewing on a steel I-beam.

[MiamiButch]

Hi everyone! Happy holidays to you all. I'm feeling physically better except for the damn shoulder. I'm pretty sure I tore something, cause here it is, a month later and I'm still hurting. I'm looking forward to seeing our Shy on TV. I've already asked her for her autograph! lol My prayers and good thoughts go out to you my friend. Rhon must be really proud of you, being a spokeswoman for the masses. I know I would be!
One thing I'm not looking forward to is Christmas Dinner. My diabetes is being stubborn and not coming down out of the mid 200's no matter WHAT I do to try to bring it down. Probably a symptom of stress. Holidays get on my last butch nerve. I never know what to get anyone, even though this year I'm only giving out three presents, one for my mom, one for a far away friend and one for my best friend who basically has everything AND the kitchen sink! Lucky woman actually got to go on that cruise with Rosie O'Donell. I told her not to come back to Miami without an autographed picture for me! lol
I've also been a little stressed what with my mother feeling a bit sick. She has a cardiologist's appointment the first week of the new year. By the way, does anyone have any suggestions for an alternative diabetic medication to Glucovance and Glucotrol that is covered by Medicaid? I'm losing what's left of my mind trying to get information from Medicaid about it, but it's like taking teeth out of a rabid lion. IMPOSSIBLE! Thanks in advance! Hope everyone has a festive New Year, feeling fine, or at least reasonably fit. God Bless you all!

[Holliday]

Hello, everybody! It's nice to see a familiar "face" or two on the thread.

I hope everyone is making the most of the season...I suppose that's the best anyone can hope for. I'd be doing pretty well if I could stop falling, tripping, and slipping all over the place. Damn balance! Every time I lose my footing it starts my ankle and leg hurting all over again! Grrr...

I'm very much enjoying reading everyone's posts. I agree with ? (sorry) that while it may be personally helpful to think about how your own problems "don't seem so bad compared to everyone else's," it doesn't do much in the long run, and it only sets up a weird dynamic of...I'm lacking the proper word here...I guess privileging some people's disabilities/etc. over others.

Best,
Holliday
xox

[BlueMoonWolf]

Hello, everybody! It's nice to see a familiar "face" or two on the thread.

I hope everyone is making the most of the season...I suppose that's the best anyone can hope for. I'd be doing pretty well if I could stop falling, tripping, and slipping all over the place. Damn balance! Every time I lose my footing it starts my ankle and leg hurting all over again! Grrr...

Best,
Holliday
xox

hiya Holiday!

I know the feeling so well! *showing you the rather pretty colored bruise on my hand. it's better today i can stand pressure on it. I didn't break anything just bruised it but good the other day.

lol we can compair bruises

[Woodie69]

Hi All,

I have been having some PTSD stuff going on (night terrors, flash backs, etc.). Now, they seem to have pretty much faded. Phew! It was very hard for a while there. My pain level is up in my hand as is my anxiety. My anxiety is from my past childhood abuse. I tend to experience this sort of thing every year around this time. It is as if I know it happened, I can accept it happened, but yet I am right back there (if that makes any sense).

I had another set of CAT Scans and MRI's done of my brain and skull. No changes - thanks to God! It is when there are changes that the neurologist and neurosurgeon are fearful of. These are changes that cannot be corrected with surgery or meds. It is a lifelong injury.

I will continue to lift everyone up in prayer as usual. God bless you all.

Peace and love,
Andrew

[Ali Mac]

I have a visual problem where I am not good with spatial relations. I will part 3 feet behind someone thinking I am right up on their bumper.

Nice to see someone else who experiences the same spatial problems

I have the same problem where I'll park like 2 feet in front of someone thinking I'm about to hit their bumper.

With practice and a more careful attitude I have improved my driving and my parking and will be getting a car soon but I have found that smaller cars are WAY easier for me to deal with spatially than larger cars.

Ali Mac

[Jules]

I am assuming it is Total Parenteral Nutrition. Nice yummy liquid bags that go through a hickman or another type of cathedar into your main artery so you don't have to be stuck a gazillion times anymore.

Michelle,
You are exactly right. I have a Hickman, the last time I had to do this I had a PIC line, but it got infected and I, in turn, became septic. Not fun at all. That was last year.

I get my TPN from a great company, it is already pre-mixed with the tubes attached. All I have to do is inject two vials of vitamins into the bag and hook it up to the pump...viola...I'm good to go! This will last for probably 4-6 months and hopefully I can gain enough weight, and when the ulcer heals, the scar tissue won't block the opening between my pouch and small bowel, or I'll be looking at yet another surgery.

[Shyfemmekat]

Hello all,

Well I guess it was not to be because not long after I arrived in Nashville I began to feel gross. My left leg swelled up and little veiny bruises popped up all up and down it & I was very tired and dizzy. Long story short, I came home yesterday. A driver brought me home as it was faster than flying, (believe it!) and he was an excellent conversationalist which made the six hours go by swiftly. Rhon had warmed me up some pulled chicken BBQ and set a sweet little table setting with a heart shaped plate and cookie snack. She even had burned a hazelnut candle and did the dishes! I put down my bags, got kisses from my children and promptly burst into tears for about ten minutes.

She took four hours flex time to get home early last night so we could hang out for a couple hours. I needed that. I felt awful and sad.

I am going to call primary care and have my appointment moved up to this Friday if I can. This is the leg I had the blood clot in so I treat it with real respect these days.

I see that the thread has had a ton of postings. YAY!

Welcome to you, Simcha and beachcat. There is real comfort and caring here, and I look forward to hearing more from you.

Off to put my leg up.

ShyFemmeKat

[WolfiEyes]

Outlawdaddy, DW, GB, Shyfemmekat, Woodie and all on the thread… I hope all will be well for the holidays – my heart is with all of you

A few months ago, I started a new medication and it makes my raynauds worse. I feel like the inside of my hands, nose and feet are made of ice… I can't wait for summer

Holiday wishes from the ice cube

JJ

[DAYWALKER]

Nice to see someone else who experiences the same spatial problems

I have the same problem where I'll park like 2 feet in front of someone thinking I'm about to hit their bumper.

With practice and a more careful attitude I have improved my driving and my parking and will be getting a car soon but I have found that smaller cars are WAY easier for me to deal with spatially than larger cars.

Ali Mac

Lol...

I hear Cadillac has a car that parks for you now.
You should check it out...lol!

Hope everyone is remembering to drink water,
just because it's cold...don't mean you won't dehydrate!

[SirWolfalot]

Hi all - its been awhile...life is keeping me really busy...

Mich - glad to hear you are getting a scooter. I have learned a lot in the past 6 months about how hard it is not to be able to walk, or sometimes even stand. I understand the real mixed feelings about 'caving in' and having to use a scooter or chair, but the benefits of mobility win out in the end. I hope you can cut through the red tape and get one fairly quickly.

Jules - it sounds like you have had it rough in 'getting whole' again from the surgery. Hopefully things are starting to improve for you. BTW, are you the same Jules who used to live in Rockford, IL

Outlaw - I'll keep you in prayers for staying out of the hospital! Crohns flair-ups are no picnic & there it is so unpredictable.

Andrew - Hang in there bro - it sounds like its been a really rough year for you, and with all the stress with your a**hole employers, its no wonder PTSD is raising its ugly head. I'll keep prayers going.

Shy - awww hon, I am sorry the trip turned out so badly for you and you are having such problems with your legs. *gives you a kotc* I'll call you when I get back in town. We are leaving in a few hours for Chicago.

And everyone... wishing all of you a happy holiday and praying that each of you experiences better health in 2007.

Peace

Wolf