Ever get embarassed by your issues?

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Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 7/28/2011 10:59 PM (GMT -6)   
I get embarrassed by my CP all the time. The thought of fainting in public, while walking outside, losing bladder control (EEK!), or doubling over in pain is enough to keep me inside on moderate to bad days.

What embarrasses me most is having to ask for help when I committed to doing something. I hate when my body lets me down that way.

I think one of the most embarrassing things was fainting at church, scaring all the people, having to be helped to the car. I am a big girl and should just be able to walk to the car without aid or causing a scene. Still, all this embarrassment over things I have little control over is probably signs of a deeper issue, like self-esteem.

I am also embarrassed by my health insurance company. They denied my Lupron injections. They would rather cover a 6-figure surgery requiring long recovery and possible physical therapy, life-long medications (another one) and with my history of staph infections, wound vacs, antibiotics, PICC line, and home health nurses? Really? How can that be cheaper or better than one stinking Lupron injection?

Embarrassing, all of it. Embarrassing to need all this mess just to function the little bit that I had gained before the new ovary grew back. Embarrassing to be marrying a man who should have the world and is left with a woman who can't perform the normal everyday functions of a wife, who can't bear children, can't even do household chores. One load of laundry took me 3 hours.

At least it gives me many hours to crochet and spend time with my sons. Trouble with this new life circumstance has me all messed up. Does it get worse for others, just when it looked like things were better?

Sorry for the vent. I had to come here, my fiance just doesn't understand. He tries and is amazing, but doesn't completely understand that my body feels like it no longer belongs to me. I have no say in what happens in my own skin.

Mindy

Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 373
   Posted 7/28/2011 11:45 PM (GMT -6)   
Mindy,
I appreciate your "vent.".
I tend to stay indoors a lot due to my health issues. I have crohns dx and an ostomy plus interstitial cystitis so I do understand ...I also have a remarkable boyfriend that wants kids that I am not able to give him. I know and feel that the end is nearing ...I just love him so much that sometimes I feel I need to let him go, ya know? I feel a lot of guilt.
I also got stuck with the staph infection, picc lines, home nurses..they did the vancomyacin over and over with no results..I went to a doctor that suggested I cut my nails, wash everything in bleach, take bleach baths and wash with hibacleanse..it took about 6 months but have not gotten staph back.
I know things are hard right now but keep your chin up...things have to get better right? Will keep you in mind.
Leslie
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,Interstitial Cystitis,Ileostomy,Severe Scoliosis,Chronic Pain,Arthritis,BP1,Anxiety/Panic attacks,Several reconstructive surgeries..

Chutz
Forum Moderator


Date Joined Jan 2005
Total Posts : 9245
   Posted 7/29/2011 12:52 AM (GMT -6)   
Hi Mindy~

I'm sorry you're feeling so miserable right now but I can understand why you would. But...may I suggest another way to approach each day? Why are you embarrassed? Did you do anything to cause any of these problems? Or did they just happen? Why embarrassed over the insurance company? They are the ones messing up, not you.

about 20 years ago I was dating my husband. I was almost through a miserable divorce after an abusive marriage. A friend of the family would come by and visit us...ex, me and the 3 kids...once in a while. So he was someone I knew but never thought about in a 'serious' way. I was married...and stuck.

Once I was single this friend and I began going on weekend drives taking along a pile of camera gear, a picnic lunch and had a good time visiting just as friends...at least that's what it was on my part at that time. But over the months we began to realize we really had so much fun together and compliments each other well. Besides, I could trust him!

I had to sell him small farm since I had no job and this friend offered me and my kids a place to stay. After weeks of talking we decided to build a house together and make a home. We also took a wonderful vacation together and we both knew we were very much in love. BUT, he never once asked me to marry him. I was sure he was afraid of marrying someone with illnesses piling up one by one and at that time it seemed something new hit every few months. All of the stress I had been through triggered my body to go crazy, I guess. So why would he want ME? I was about as defective as they get. But I kept on with daily living, finishing the house, going to college, raising my two sons - with his help- and enjoying life...except for that one little thing ~ no ring.

Silly me for second guessing him. He was taking time to think through what he was taking on when we got married. It sure would have been easier on me if he had share that BUT I would not have been as surprised when one day when the house was almost finished we were in one of the rooms when he took me in his arms and asked me to marry him.

My life was complete and so happy. The point of all of this is to not presume how someone feels about you. If your fiance is still there every day, still wants to marry you and still sees you as the love of his life then why in this wonderful world should you question it.wink

Take life as it happens, the good and the not so good. Enjoy and give thanks for the love you have around you. Many never have that love. Talk to him and share your feelings and love. I would also make one other suggestion. There are pain counselors/psychologists that are wonderful help to those of us who live with chronic pain. No one should have to live this way but these counselors understand and can help us deal with our day to day living and make it so much better.

Hope something here helps you or others who may read it...
Chutz smilewinkgrin
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a few other side dishes
~~~~~
Wrinkles should merely indicate where smiles have been.
Mark Twain

ekkorose
Regular Member


Date Joined Jul 2008
Total Posts : 329
   Posted 7/29/2011 8:49 AM (GMT -6)   
Mindy,

I know exactly how you feel. I am utterly terrified of having a pain spike in public and either passing out or endng up on the floor due to the pain. It has changed how I do everything.
DX - Spinal stenosis - C 4-T1. Bulging disks C 3-T1
Severe pelvic adhesions from 4 surgeries *hysterectomy, removal of ovaries, ect...meds taken 0 Kadian 20mg, percocet for breakthrough. Compounded Cream.

newname
Regular Member


Date Joined Jun 2011
Total Posts : 95
   Posted 7/29/2011 9:30 AM (GMT -6)   
I don't know if I'm embarassed so much as being afraid. I'm only 42, but every morning when I wake up it feels like somebody has taken a sledgehammer to my back. After taking a couple of tramadol, my pain is greatly alleviated, but if I'm in this bad of shape now, what is my situation going to be when I'm 50?

chanterelle
Regular Member


Date Joined Apr 2011
Total Posts : 99
   Posted 7/29/2011 4:07 PM (GMT -6)   
Newname, you and I are alike in ways. My herniated discs, DDD, FMS, etc. cause considerable pain and it is difficult not to think about the future. Unfortunately no pain meds help me at all. Zero. As I also have celiac disease (which is difficult when eating out because you must explain cross contamination and ensure things are cooked properly before you can feel safe which is extremely rare) I cannot take NSAIDS, either. You would be shocked at hidden gluten in everything. It is challenging to literally watch every single morsel that goes into my mouth.

I also wonder what I will be like when I am 50. I do not allow myself to even go there because it is incredibly depressing. Having to admit my husband has a sickly wife is rough! There is so much I want to see and do. I used to have fear avoidance (avoiding going out and doing things) but have now conquered it. I just do it if at all possible. When I weed the flowerbeds I must lie on my stomach on an old sheet on the ground. When I eat in restaurants I must stand part of the time. I always end up standing in the back at church as it hurts too much to sit. I'm sure most can relate to this type of thing!

We must take control of our pain and not allow it to control us. Easier said than done but I have dramatically improved the past year on this.
Back injury 2007 with 3 herniated discs, IT band syndrome, myofascial pain, DDD.
Rotator cuff injury both shoulders.
Diagnosed with Celiac Disease February 2011.
Diagnosed with Fibromyalgia April 2011.
Insomnia forever but worse the past few years due to pain and discomfort.

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 636
   Posted 7/29/2011 5:05 PM (GMT -6)   
Sorry Mindy that your insurance company has declined to pay for the injection, you are right that makes little sense. You may have posted about this before and I missed it. What are your plans now?

I often ask my husband if he wants out due to my constant never ending series of chronic pain and illness issues. He assures me its for better or worse and he wouldnt change a thing, but I feel sometimes that this life is so unfair to him and my kids. He says it comes down to if he really wanted to run, he would have allready, we need to get over being embarrassed and guilty and accept what we cant change. Take that energy, and use it to improve what we can instead of perseverating on the negative. Easier said than done when you feel like crud that was scraped off the bottom of someones shoes, but its something to try for,lol.

Big hugs,
Shell
DX: CRPS/RSD full body, Fibro, CP, DDD, DJD, OSA, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. SCS trial successful awaiting placement.
MEDS:To many to mention, changes every week it seems.

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 7/29/2011 5:19 PM (GMT -6)   
Insurance companies love to spend $10 in hopes of saving 10 cents.

A lot of things they do make little sense. Like insisting on an X-ray before a CT scan and a CT scan before an MRI even though the doctor doing the tests know that a lower "quality" scan is not going to show what they are wanting to check.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1560
   Posted 7/29/2011 6:02 PM (GMT -6)   
Mindy:

I understand your fears and your embarrasment in this matter. I too suffer through my tremendous pain with my back every day. Its wonderful to have a husband that not only understands my pain, cause he once was just like me but did not have to go through the series of surgeries that I did, but sympthasizes with my pain as well.

I too have asked him if he ever feels overwhelmed that he can leave without any reprucions, but he is alike to many hubby's here and does not desire to ever leave me. He tells me that my pain is his pain and that he is commited to keeping this relationship going. I love him so very much.

I too have, because of all the medications, a bad bladder problem. I thought that it would go away, but it seems it hasn't and I have to wear bladder control pads every night cause sometimes I don't wake up in time. What really bites is the embarressment of that! Having to carry extra clothes with me when I go out, feeling like a baby cause I wear pads. It's all very humbling and makes me very mad.

Doc says its because of the medications that I am on and that we really can't change my meds around. So I deal with it and hope that I can muddle through the day. Since getting the new puppy I have actually gotten out more. I take the puppy for a walk almost every morning and walk probably 3 blocks. But when I get tired or am in horrible pain I feel guilty that I cannot take him out.

Anyway, I wanted to write and let you know your not alone. It's hard being a CP patient!

Hugss

Scarred
I live to "Tame My Pain!"

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 7/29/2011 6:37 PM (GMT -6)   
Hi Mindy, nini53, Kathy here, and I certainly can understand how you feel, I was embarrassed in the beginning when things started to fall apart.  You learn to adjust to things, you learn to do things differently, my best friend and I have what we call stradigies, in other words what might have worked for us prior to our disabilities, wont work for us now, so we find different ways to do the things we need to get done.
 
I know when I became completely disabled, when I could no longer work outside the home, it was so depressing for me.  I had always worked outside the home.  I was and still am a single parent, 12 years ago, when I could not work outside the home anymore my girls were still young.  My oldest girl Dani, graduated in 2000, I had become unable to work in winter 1998.  By the end of 1999, we had been evicted from our home which they had been living in not all but most of there lives.  Dani graduated and was already working, both my girls worked from the time they were 14-15, being a single parent, as they grew older, they realized if they wanted a pair of 80 dollar shoes with a Nike logo or any other for that matter, mom just didnt make that kind of money.
 
My girls both to this day have good work ethics, partly due to the fact that as I said, if they wanted some of the "nicer" things in life, they had to work themselves to get them.  When they were very young (birth to about 6-7) there entire wardrobes came from thrift stores.  I could clothe them for each season for 20 dollars tops at the thrift store.  Of course as they got older, that didnt work, I did get help from my parents from time to time, but they were the working poor themselves.
 
I seem to be going on and telling my life story.  So sorry, I guess I am trying to say, this to will pass.  Every day I look at this cp forum, and I realize I could be so much worse off.  I try to be very grateful for the good health of my girls and my grandchildren.  I am also grateful that there is a cp forum.  I am grateful that for right now I can still walk, although aided with a cane, so what, I can walk.  You really have to try to stay with the positive as much as you can.  I know how hard this can be, but thats what I try to do.
 
So again I am sorry to have gone on and on about my family, but they are a great source of strength for me.  I am very grateful for them.
 
Please take care of yourself, some days will be better than others, take care and good luck.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 7/29/2011 8:59 PM (GMT -6)   
When my daughter got into high school things seemed to go down hill for me,
the hardest was telling her one day, can you wait for your dad, to get
off work to get you. I was in so much pain that day and felt bad that I could not go
and pick her up like a good parent would've done...
I cried that night cause I felt I let her down so bad, then after one of her performances,
I fell on the last step, my foot just didn't move and I went down...I was so embassesd
that day, and my daughter has a theater production coming up
and I don't know if I should go as I don't want to "embasse" (SP?) her...
So yeah so do know...many well wishes that these don't ever happen to you...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******
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