Public Humiliation

[A.K.]

Tonight was a disaster. My husband's company never has a party until the middle of January because they feel everyone has enough to do in December. I agree 100% and tonight was the night.

They held it in the same location they did last year, Cobb Galleria, which is a big mall and my husband that it was going to be in the exact same location.
I made a plan of the best handicap parking and closest entrance so that my walking would be minimal because he thought it would be too crowded in the dinner hall for my walker (and I agreed).

Everything worked perfectly until we got inside the mall and the place where we thought it was was locked and dark. Another couple showed up the same time because they thought the same thing. The other guy took off looking for the location.

This year they had it on another floor in a totally different part of the building away from the shops entirely. It was a very long walk down to the ballrooms and of course we were in the last ones down the hall.

A 1/4 of the way there I could barely walk anymore I was in so much pain. I tried not to show it because I did not want my husband to miss his party but it was also very embarrassing. People would start talking to him and he would talk and walk with them and be completely out of my site and then I would see him coming back saying, "I am sorry darling I didn't mean to run off and leave you." By 3/4 of a way there I was crying in pain and mad as a wet hen!!! I ducked in the bathroom to try and stop the drip before poor hubby insisted we leave. Anyway the walk out was worse but we are finally home. I am in major, major pain.

I have also gained 14 pounds since yesterday, obviously fluid but I haven't started any new meds so I don't know what the heck is going on but it is making me miserable because I am already obese.

Well that is my Yuck report of the day, anyone care to comment? Thanks for listening A.K.

[Diandra]

Hi AK,
How incredibly disappointing for you that when you tried to venture out and be social, the location mix up caused you to have your evening ruined. It must have taken incredible energy just to bathe and get groomed and dressed for this special night out....I'm so sorry it did not turn out to be an evening so full of fun you forgot your pain for a little bit.

I hope you can do something to help bring your pain to a manageable place.
Is it possible to soak in a tub? I know sometimes when my pain reaches a max my body is so tensed from the pain that in order to try and relax I will take the highest dose of pain med and a muscle relaxer get in tub of hot water.

Have you ever had this occurence of a 14lb weight gain in one day before? That is a rather troublesome symptom, I would talk to a doc if this never happened before.

Feel better AK....you are in my prayers.
Diandra

[Bobbi]

One comment...

*hug

[gizmogirl]

I'm sorry that I know nothing about your dx so can't think of anything ingenious to say. So, I will just remind you that Eleanor Roosevelt said we can't be humiliated unless we let ourselves feel that way, and it sure does sound to me like you have NOTHING to be ashamed of. At least hubby kept running back to be with you!
However, I certainly can't imagine the payback your body is probably doling out to you right now for having pushed it, as you say, farther than is good. I pray that you quickly solve the alarming water weight gain mystery, get enough pain medication to reduce your discomfort, and that you are able to recover quickly. That's a tall oder of a prayer, I bet, but so be it. Good luck and try to pat yourself on the back for coping as well as you did (but only figuratively!)
Good luck
jane

[Lil E]

I know how you feel which is why I bought a light-weight electric wheelchair. I can deal with any mall now! *boogie
It is three pieces and I can handle them myself. The last time something like that happened to me I swore it would never happen again. Check out www.spinlife.com, the prices are great. Can I ask why you didn't get back in the car and drive around? I think I already know, we all do it from time to time.

Have you tried massage when you hurt badly? It helps with the muscles and gets rid of the excess water weight caused by inflammation. I've lost 20 pounds in three months. Or those heat wrap thingies? They are so nice and warm just the thing for your poor strained muscles. They last a long time, the thermacare ones are the best, they last a good eight hours. Staying while you hurt was a very generous thing to do.

[911]

i'm so sorry you went thru what you did , it had to be horrible hugz,,,,,,, dave

[Mark N]

A.K., sorry your plans were shot due to miscommunication and you were in so much pain. I understand what you went through as I have done this with my wife and her office parties. As much as I hate the idea of it, she now goes alone because I was spoiling the fun. I felt bad by staying too long suffering in pain and she felt bad having me in pain so we decided that it would be better for me to stay home. We both now have a better time when she has a party.

I hate to hear you suffer so much but you may need to evaluate what would be best for both of you because last night wasn't very good for either of you,

[suede]

So sorry, as most on here I can relate to the ordeal you have gone through.
I have tried at times to go places with DH as it means so much to him, he does understand but that isn't the point, there are times when we ourselves want to have have some normalcy in our lives, and the humiliation and disappointment can be unbearable when it back fires.
I hope your pain id down today and your emotional state better.
Linda

[BrokenBladder]

AK I'm so sorry that you endured such pain and I know your body must really be in worst shape now.

Try to stay inside today and maybe take a hot bath, but most importantly try to relax. I know how difficult it was, but I hope the food was at least good.:)

Watch out for that swelling too. I don't know if this has happened to you before this or not, but if it hasn't you should call your doctor ASAP.

[houghchrst]

A.K. I am so sorry that your evening was ruined, kudos for having the fortitude to stick with it and no reason to feel humiliated. I am sure that there were other CPers there if the crowd was large and may have been going through the same thing. Some of us would have turned around and gone home. I hope your hubby is grateful for the effort you put forth. Is he taking care of you today :D? I hope you recover quickly and maybe next time something like that comes up he will be sure and double check the plans. Have a restful day.

[MamaRider]

Gosh the things we do for our spouses!!! It is a darn good thing we love them, ya know?! But, I try so hard to do for him, cause he tries so hard to do for me. ALL THE TIME. I have to be careful to not over-medicate for his parties, or drink, at all. Thank goodness there aren't that many, or he dosen't accept that many(I am not sure which)

[Pharmacist.steve]

I hate to be on the "other side of the fence" but I have seen the same pride/vanity ..."I want to look normal" .. hard-headedness out of my wife. She has a elec three wheel cart - doesn't use it because I might hurt myself getting it out of the truck .. she has a wheeled walker - which she wanted - that is now hanging on the rafters in the garage .. what does she use ... her cane!!

I will relate a simple story .. she flew out to see our grandson - some 2000 miles in May ... first time she has flown anywhere - without me ... to proud to ask for airport wheelchair assistance... the trip was a disaster... pain ... fatigue ... etc .. etc ...

She did the same trip in Nov .. except .. I insisted that she request - in advance - wheel chair assistance from curb to gate and between planes and from the gate to curb at arrival... Guess what??? the second trip was as flawless as the first was a disaster.

Dump your pride .. use a wheel chair under such circumstances... if you had planned on using a wheelchair upfront... you would have been at your "normal" when you reached the ballroom door.. could have left the wheelchair outside at the door and walked into the room. Your husband could have pushed the chair and you and he would have kept up the pace when walking/talking with the others as you proceeded to the banquet room.

[Bobbi]

:eek: Eeek ... I am reluctant to do this, but I'll posture as the counterpoint to your points, Steve.

I am not one to shy from using assistive devices (my wheelchair, public chair, motorized scooter - matters not to me).

Some settings, though, simply do not lend themselves to the means within our access.

No matter, there is the LCD and pride is swallowed and I bite. But, dependence on ease of access - or barriers to access - and on others is ever-present.

My last birthday, for instance? It was a party also for someone else. I went in my chair. To find a working elevator? Yeah, give me a lottery ticket and the luck of the draw would have been easier.

Everything I had to do just to "negotiate" spaces and I was so worn out by the time it was time to order dinner. Forget trying to use public restrooms. The thought of that alone was amply nightmarish. (Sure, we can be accompanied and assisted, even by someone of our opposite gender. But... how about: Be nice to go alone and have some privacy. I can pee my pants and achieve that. What a lovely accomplishment in public, nonetheless.)

I have friends, who also use chairs, and... many have just found it so much less taxing to stay home and plan socializing outside of "party" time in public places.

In this "day and age," still, there are far more places that lend an air of compliance with ADA than those which actually do. Who is going to "make a scene" during times out? Not I. I know that I could but then what is the point of the outing - the event or the obstacles?

It's a Catch-22. Not comfortable regardless of what efforts we take and strides we make.

Because I don't want to be "politely" excluded from invites, I go to events even when I know, full-well, in advance, I will experience discomfort and major fatigue.

I can wheel my own chair, yet, there are some settings where the choice of whether I am assisted is really not a choice but a mandate.

It'd be fantastic if people didn't search for something nice to say about my chair (such as its titanium wheels) but noticed, hey, I'm there! "But, check out my hair!"

People want to be noticed, only for the "right" reasons, such as our presence. No different from anyone else. No unwanted distractions or attention due to any condition.

It's a shame it just can't be more effortless to go out and enjoy the time spent out.

(Eh... Morton's Steakhouse: Y'taking notes?)

I agree: I'd take the chair, but... it will never be as it once was. Acceptance has to come first. Nothing is as it once was. Independence is subjective - so, too, is enjoyment, etc.

My perspective is just from where I sit - and it's not always a matter of choice.

P.S.: I truly and deeply appreciate what Steve has shared. If a chair hasn't been used, give it a go! If for a party here and there - and the "lay of the land" is previously known - a really good time can be had! At time same time, please bear in mind, there are plenty of well-known businesses that will require energy to muster visiting and, potentially, enjoying. I'm sure that Hallmark stores, Victoria's Secret, Michael's, shops along the main street in Sausalito, a ton of restaurants, etc., understand that a happy customer is a return customer - even those of us in chairs having to knock into displays and stuff in order to patronize.

[A.K.]

Thank you so much for all the replies and concern. I had to stay in bed all day today. I have several weird things going on in my body so I will call the doctor 1st thing in the morning. I still have 12 lbs of extra fluid and my face is swollen alot, especially all around my eyes and below them.

I am also pretty sure I have cellulitus in both ankles. I have had it before. Also having trouble voiding unless my bladder is very full. I have had that problem before too and it was caused by Elavil then but I haven't started any new meds so I don't have a clue. Last time I wound up having to self-cath for a while and they where considering a pace-maker for my bladder it got so bad so I definetly don't want any repeats of that mess.

Never mind what all that walking did to my back!

You know what.......when it rains it pours!:rolleyes: ;)

[Diandra]

Hi AK,
I was just logging on to see how you were doing...glad you updated and will be calling the doc. You sure have been dealing with an awful variety of health issues....I really feel for you. I just so related to your post about pushing yourself because you love your spouse and did not want to do the wheelchair thing( I do understand the desire to want to pretend to be normal, at least for one night). I am the queen of denial and often do such things....I guess the good news is that we have people in our lives we love enough to do this for.

Feel better and if you have the energy, I have never heard of a pacemaker for the bladder and was intrigued as I have had bladder issues on and off for years. The urologist thought I had interstitial cystitis and they were going to cauterize my bladder(this was 20yrs ago) and luckily I found an MD/alternative doc who said my body/bladder was just so irritated with over growth of yeast from antiobiotics for decades and he put me on very intense anti-yeast diet and fixed the problem.

Do take care,
Diandra

[Mark N]

A.K., sorry to hear about the cellulitus as I have had that and it isn't fun. I can just imagine having it when your back is in agony. I hope the doctor can take care of the fluid retention and help get your pain under control. It is a shame that venturing out has such ramifications.