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Aimee Find out more about Aimee
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  • Discrimination

    I am wondering if this "stuff " ever happens to anyone else? I went to lunch with my spouse and sister.. I parked with my blue tag in the handicapped area ... walked maybe 15 feet when some joker at the outside cafe tables took it upon himself to be the "parking lot police" and informed me and 12 other tables full of people that "who was I to park in a handicapped space" , this not to mention my sister with a cast on her R foot and a quad cane as she was due for bilateral knee replacements. I was now off to a bad start..." he informed me I didn't look sick to him" I wonder what does a HCM transplant patient look like ... Then on Wed of this week I decided to use a spa gift that I had been given.. aaaah a day at the spa. I was to start at 9 am and get the royal treatment. First they tell you no Cell phones , absolutely none. So I explained that I was on call to the U of M for transplant and since I had a 6 hour spa day I would feel better to have a direct line to my spouse should the call come and also it was on vibrate. With that little bit of knowledge they came unglued. The massage girl refused me as a client.. . Told me to come back when I had a good heart... I tried to explain that laying supine with a wired chest would be quite some time and the heart could be quite a bit also. (A spa where if you don't use the gift card you loose on it) I tried to explain about doing a modified massage.... (I am very good at explaining and teaching, comes with my profession) NO way ... she stated she was so uncomfortable.. Called the boss and the leader of the massage people.. she also explained how to do a modified and not a deep massage etc... needless to say the massage was done and it was like having grease slapped on a hog and the poor thing would not even talk much less look at me in passing the next 5 times we met throughout the day. I reassured her that I could teach her how to work with heart patients, I tried to explain about the pacer/ICD as a back up to my own heart...well she didn't want to learn. It was ugly and my day was tense and they gave me a free return trip.... I'm not going ...the hubby will or my daughter would love to go .... Count me out..I'm just glad it was a nice day outside...I might just have cried if the rain had been with me!!
    Ag

  • #2
    Hi Ag,

    Yeah, unfortunately , many here have run into similar ignorant individuals lecturing us on our use of the handicapped plackards. It always reminds me of what some of my now deceased cancer patients and friends would tell me. They experienced similar judgements and even would have people telling them they did not look ill and of course their time was very limited and they were terminal. I think some people are not always kind when it comes to minding their own business and jumping to conclusions. I have had my fair share of these type of square offs in parking lots. One elderly women actually tried to tell me I did not have a plackard ( it was hanging on my mirror) ---poor thing must have been blind, gee I hope she did not drive to the mall!!!

    You unfortunately will probably have many more encounters and you will meet those timid willy nilly's who do not want to know anything or more info then their pee brains can handle. To them unfortunately "KNOWLEDGE IN NOT POWER". WE can not get them all on board , so pick and choose who is receptive to learning and willing to deal with how to best serve you. Eyes that are closed can only be opened if they want to open them.

    You can do a search here and read about others encounters or quippy comebacks. This has been a topic we have all dealt with.

    Hang in there we all share similar battles.

    Pam
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

    Comment


    • #3
      To anyone who bugs you about the handicapped parking, say "I'm getting a new heart --too bad I can't say the same for you."

      As for the spa --it happens all the time. I have had to sign my life away for pedicures, to take a yoga class, etc. I would call around town and see if anyone has experience with the "chronically ill" or medical conditions. My mom and I were at the Ritz in Pasadena's spa and they had someone who specialized in people with strokes.

      Good luck with everything,

      S

      Comment


      • #4
        Sarah,

        I loved your reply for aimee!!!! I kept reading it and couldn't stop laughing. You have a great attitude!

        John
        41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005

        Comment


        • #5
          My answer to handicap parking comments were "Well looks can be deceiving". I would just keep on walking after I said that. People can be jerks Aimee. Keep on smiling.
          Midge

          Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
          ICD&Pacemaker 1996
          Heart transplant March 19, 2004 @ Mayo Rochester
          Mom of Kaye.

          Comment


          • #6
            Ag,

            I am sorry to here about your day with the idiots!
            Re the parking issue - I too have met the 'parking police' who just feel the need to evaluate my health and let me know how I look like the last person who needs a handicap parking spot! to which i alway reply "looks can be deceiving, and thanks for the medical evaluation but i will stick to my doctors advise over yours" as I smile and walk away.

            i am sending you a big hug.

            Lisa
            Knowledge is power ... Stay informed!
            YOU can make a difference - all you have to do is try!

            Dx age 12 current age 46 and counting!
            lost: 5 family members to HCM (SCD, Stroke, CHF)
            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
            Therapy - ICD (implanted 97, 01, 04 and 11, medication
            Currently not obstructed
            Complications - unnecessary pacemaker and stroke (unrelated to each other)

            Comment


            • #7
              I know exactly what you mean, I was approached a week ago by an officer and he ask for my ID card that goes with the placard and he said who did you con out of this and i showed him my scar on my chest and he said i'm sorry and tipped his hat and said have a good day it does make you stop and think and i would be the last to look down on someone holding a sign that says i will work for food or something, we haven't walked in their shoes we don't know what happened to him you know, it could have been he lost his family you know and feels he has nowhere to go, i mean you have to go through alot here to get a placard and i thought it was very rued of him to even ask

              Shirley
              Diagnosed 2003
              Myectomy 2-23-2004
              Husband: Ken
              Son: John diagnosed 2004
              Daughter: Janet (free of HCM)

              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

              Comment


              • #8
                Maybe someday the handicapped placard will come with a cap that says "If you aren't my doctor, don't decide how far I can walk. Thanks."

                Comment


                • #9
                  Yes I encountered the parking police before.

                  I just say, "have a nice day." And I keep on going.

                  Course then again, I have been with Ryan for 11 years, I am used to tuning out idiot remarks.

                  Sorry you were treated so badly at the spa. Please do not take it personally, people are afraid of liability and they just do not understand.

                  Hugs,
                  Eve
                  49 yrs. old
                  Diagnosed at 31.
                  Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                  First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                  Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                  Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                  My brother passed away suddenly at 34 yrs old from HCM.
                  2 teenage children, ages 17 and 15.

                  Comment


                  • #10
                    Shirley, I would have gotten the officer's name and badge number and reported him to the station. That's totally uncalled for!

                    Reenie
                    Reenie

                    ****************
                    Husband has HCM.
                    3 kids - ages 23, 21, & 19. All presently clear of HCM.

                    Comment


                    • #11
                      Shirley and everyone too,

                      I do not have an ID card that goes with my placecard, just my drivers license. I was never issued an ID card when I recieved my placecard from the Motor Vehicle Department.

                      (Good thing I now have a scar to prove it.)

                      But on the flip side of this.....
                      Sometimes there are no available handicap parking spots in the shopping centers I go to.
                      And not to judge anyone else but I have seen some people park in the handicap spots and walk real fast into the store. I wonder how many people share their placecard (I do not mean us). I never give mine out to anyone.
                      I don't know.... things that make you go hmmmmmm.


                      Respectfully,
                      Eve
                      49 yrs. old
                      Diagnosed at 31.
                      Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                      First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                      Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                      Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                      My brother passed away suddenly at 34 yrs old from HCM.
                      2 teenage children, ages 17 and 15.

                      Comment


                      • #12
                        Eve,

                        Fyi, It is illegal for anyone to share their plackard and would result in a fine and revokation of the priviledge to the owner if they are caught . The one who owns the plackard must be in the car and exit it within 10 minutes, as they are the one who needs the plackard. There are probably more rules and may vary from state to state.

                        Pam
                        Dx @ 47 with HOCM & HF:11/00
                        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                        Lead failure,replaced 12/06.
                        SF lead recall:07,extracted leads and new device 2012
                        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                        Genetic mutation 4/09, mother(d), brother, son, gene+
                        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                        Comment


                        • #13
                          Pam that is one rule that stands nation wide, I even got a placcard for my dad when he got here from Oklahoma

                          Shirley
                          Diagnosed 2003
                          Myectomy 2-23-2004
                          Husband: Ken
                          Son: John diagnosed 2004
                          Daughter: Janet (free of HCM)

                          Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                          Comment


                          • #14
                            Humor

                            Thank you all for your replies and the whit and humor..Sarah you made my day. Thanks again . This web site is so awesome .. it helps so much to know that you are not the only one out there and that what happens is shared by others.
                            Ag

                            Comment


                            • #15
                              Glad I could bring a few smiles to the thread. Humor gets me through --and my friends and support system. Oh, and not owning a car!

                              Comment

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