Home Sweet Home

Getting home was the hard part but being home is wonderful.  Right now I am not well because once again I am suffering with infection which is no doubt because of the catheter being in so long and a trip from hell to get home.  But I wanted to write today, because I received so many emails while gone and right now they are all on my mainframe computer.  I have a hard time sitting but for a minute or two but I was gratified by a couple I quickly read this morning.

This message is for the lady who had mesh in her for ten years and it was removed on my birthday, June 27th.  I am going to forward your email within the next day or so to my wonderful helpers because right now it would be easier than trying to sit and answer you.  Then everything will come back to me on my laptop and I can write back to you.  It is easier to work on it in my bed because sitting is very painful.   But I wanted you to know I felt gratified that you went to Dr. Raz after ten years and had it removed, because of this blog.  You see although it has been rare, I am attacked from time to time and the worse was one that just happened by the same lady who told me to get a hobby.  She did not like that I responded through my blog .  However, if someone attacks me I will make it public because it is wrong although I will not use a name.  But your email made me feel better and I know I reach thousands of women who would not otherwise know where to go or what to do or get any recognition from the pain they have suffered for many years.  In writing this blog, you know you are not alone and your symptoms are similar to many others.

This blog is open to the world but you have to click on it to read it, so I do not understand this woman’s problem.   She does not have to read it, nor like anything I write about.  She has the right to begin a blog of her own to help others if she chooses, but instead she sends me nasty remarks.  You should know however, that as a child I was bullied and I couldn’t do anything about it.  These days I don’t put up with it and I will respond openly to let women know what goes on when you try to help others.  It is wrong for anyone to attack me when all I do is try to help others.

Your lovely words this morning wiped out all the sorrow I felt from the attack and I will continue to help women as best as I can.  I am sorry we did not get to meet out there when you had your surgery, because it would have been nice to give you a big hug.  I know you will be healing for some time because ten years takes a toll on one’s body, but regardless, you stand a chance to live again.  My heart is with you.

For every other woman who sent me a direct email while I was out at UCLA I apologize now that I cannot just quickly answer, so you will eventually receive a forwarded email from me to all my angel helpers.  Hopefully you will be comforted by them as well as by me.  Just give me a few days to get it all done.

Now for my trip home.  My trip back from Los Angeles was terrible.  It was the worst trip ever and I have decided to write a letter of complaint to the American Disabilities Association because of what happened to me and the other disabled passengers who were booked on this flight.  I have sixty days to get it done so I have time to get well before I take it on.  If anything happens to you during your trip when flying out to UCLA or returning home while using a wheelchair, please do the same because it is the only way to change things for anyone who needs these services.  This is the link  http://www.ada.gov/t3compfm.htm

Now I will explain.  I was traveling on American Eagle flight 3659.  A very dear friend had offered me her miles to buy my ticket and I was so happy with her offer because the nightmare of mesh costs so much for all of us and it never ends.  This was my second trip in three months, the forth in a year and as we all know, our financial situation is stretched to the max.  So I accepted and she made the bookings for me which included first class which put me in a seat immediately as I boarded the plane.  This was wonderful because of my situation with gentomicin toxicity and dizziness, let alone my issues with walking.  The trip over was uneventful and I have learned to ask for help especially as this time I was travelling alone.  The ticket included a meal which I was grateful for as it was later in the day when I finally ate.  You see while flying alone and wheelchair bound, there was no way for me to get to a facility in the airport to buy a meal or a drink.  I had luggage as well and once the wheelchair staff took me to the gate, I was stuck.  I even had to ask a passenger to inform the check in staff at the gate that I needed someone to push me to board because walking down a ramp was far too difficult.  My extreme dizziness would not allow me to walk a straight line even with my walking stick.  So I dare not risk walking any distance because I was afraid of falling and breaking a bone.  You can’t explain all this to someone who works for the airline, so I just asked for help and did get it on the Houston end.

I know Los Angeles is a giant hub for airline travelers and things do go wrong with planes.  Add the plane crash the week before so confusion and problems will occur more readily.  However, humans have to make sure those who cannot walk, are taken care of and that did not happen.

The shuttle picked me up at eleven am from the Tiverton Hotel and I was at the gate at twelve noon where I was dropped into a seat to wait for boarding.  The wheelchair was taken away. Boarding was at 1.55 pm and flight was supposed to leave at 2.25.  We are not allowed to take water through security so I looked forward to drinking water on board.  When the boarding time came an announcement came over there was a mechanical problem and the flight would be delayed an hour.  However more than an hour later an announcement came that the flight was cancelled.  Now all this would not have been so bad but the announcement continued that everyone should get in a line to get another flight out.  The rush happened of course and the line was a mile long.

I sat there with two other wheelchair passengers and wondered what to do.  They did have someone with them, but they were just as confused as I was because we were ignored.  After awhile I knew I had to do something, so I carefully and painfully shuffled my way to the front f the line and begged for help stating I was a wheelchair passenger and could not stand in the line.  The attendant told me and the daughter of an eighty three year old woman with dementia, we had to wait while she took care of the healthy male passenger before her.  She ignored us altogether until that was done and we had stood there for some time and then told us to go way across to the other side of this area where we would be helped.  I told her I had luggage and could barely walk.  Finally another employee stepped forward to help me with my bags, which I found alone even though a young couple had promised they would watch them for me while I found out what to do.  Chivalry is dead apparently.

There were no wheelchairs anywhere and after walking across the room we had to stand while the new attendant made out new tickets.  No straight through flights were available on this airline until the next day.  I was told that United Airlines had a flight four hours later but that was all.  I had to take it as transferring in my situation would have been disastrous for me.  Finally wheelchairs showed up and I was grateful to sit and not feel so much dizziness.

I had to take two shuttles from there over to United, which was fine because wheelchairs were provided both on and off the buses.  Then the wheelchair attendant got me over there to the correct gate for departure.  I was given a coupon to buy a meal for $12.00.  As we all know that buys nothing in an airport, but that was not my main problem.  The food courts were nowhere close two the gate so I asked my wheelchair person if she could leave the chair with me, and I could push it to walk to where I could buy food and a drink.  She said she was not allowed to do it, so I begged for her help.  So she took me to get my food to go, which a sandwich and soft drink was $14.  Then she rolled me back to the gate where I sat waiting until the flight was supposed to leave at 7.19 pm.

If I had not had a catheter in me I do not know how I would have made it to a bathroom.  Wheelchair attendants do their job and then you are left to fend for yourself.  That is not easy when alone.  Finally a call came through that said there was a mechanical problem and it would take an hour and a half to fix.  So we waited longer to board.  I found it so hard to believe that two flights had issues but there was nothing I could do but inform my daughter via cell phone to let her know I had no clue when I would get home.  She had gone into Houston but then turned around to go home because it could be many hours.

Finally we began boarding but American Eagle had issued me an economy ticket which put me close to the BACK f the plane.  When I questioned why they switched it to economy from first class they said they could not do first class because no seats were available.  United tried to get them to honor it too because there WERE seats in first class but American Eagle refused to transfer me.  So with my walking and dizzy issues I had to make it to the back of the plane.  I did have help with my luggage and the staff on board United were helpful and sympathetic.  I was totally disgusted with American Eagle.

We had just settled in our seats when an announcement came over that everyone had to get back off the plane as they were not sure how long the mechanical repairs were going to take.  I was so disheartened and in pain from sitting for many hours with a catheter in me with very little fluid intake for many hours, and tears rolled down my cheeks.  I wanted to quit the situation but I was stuck.  An attendant took my luggage and I made it to the front of the plane where I sat waiting for a wheelchair crying.  I had had enough!  Pain racked my body and I suffered so much.  A man who wore a uniform came over, brought me a glass of water and sat with me asking me to tell him what was wrong.  I told him I had had surgery a week before and I was in pain, then all this had happened.  He was very sympathetic and sat with me until the wheelchair came.  He said he would check up on me later, which true to his word he did.

We were barely on the ramp taking us back to wait, when a woman yelled to stop as we may be boarding again.  We sat on the hard wheelchairs which stressed my body out far more, until at last the call was to board again.  I don’t even know the time, but I called my daughter to tell her the plane was going to leave and I would call as soon as we landed.  She was watching the flight changes on the Internet because it takes over an hour from our home to the airport.  It was getting on for two in the morning when we finally landed in Houston.  When I called my daughter she was almost there and by the time I was taken off the plane she was waiting for me.  We arrived home at three thirty in the morning instead of the original time of 7.40 pm the evening before.  I dropped the seat into reclining position in the care to ride home because I was in so much pain.

I knew to drink plenty of water to try to ward off any infection so I did.  I did not get to sleep until almost six am, and I slept until after eleven am that morning.    I had hoped I had warded off infection but I was worried.  A day later I knew I had one plus I still had issues sitting for any length of time because of pain.  Laying gives me relief and now I hope the antibiotics I am taking by mouth will cure me before I remove the catheter on Monday.  I am worried of course that I don’t wind up in the ER again when I do it and have yet more IV antibiotics.

My issue with American Airlines is this.  “You offer wheelchair service as do all airlines but you have no compassion for those who cannot move around the airport on their own.  You call out to get in line to be redirected to another flight or airline when a flight is cancelled, but you do not care to help those who cannot do that.  You take people on first come first serve basis and of course healthy people are first in line and the line grows quickly.  Your attendants are rude and lack compassion to make sure people with disabilities have a way to move around and have flights home.  You offer no fluid intake to those who have been stuck in an airport for many hours and are disabled, and no help getting any.  You do not care what happens to them.  You do not honor anyone who has a ticket bought by miles when they ask for first class and then you don’t have a flight to accommodate them.  Your attitude is disgusting.

In all the years (well over forty) I have been flying all over the world your company is the worst ever!  You need to change and train your attendants to take care of people who cannot take care of themselves.  I am sure you will be happy to know I will never fly with your airline again.  Happy because you obviously want to get rid of people like me.”

So now I am home trying to get well and hope I am not back to square one.

This is for the woman who comes to this blog to read it when I have not solicited her to do so.  I never email this blog to anyone unless they contact me asking for help on a certain matter.  If there is already a blog that gives them information, then I send them the link.  I never ask anyone for money for information.  It is free for anyone, but they have to choose to read it.

I am sorry you feel so much obvious joy in telling me privately what you think about me and this blog, when you don’t know me or I know you.  You say you are mesh injured.  So why would you hurl insults at someone who has worked tirelessly for over three years to get the word out what has happened to women because of bladder sling mesh?

Perhaps you do not have the support you need at home.  Perhaps you are angry at the world because of what has been done to you, but why would you attack someone who is trying to help others?

You suggest that I only write here to build my case.  That is preposterous!  In writing so blatantly about mesh injuries it could damage my case, but I choose to do it, because it has been covered up for so long and will hurt more women.

You accuse me of setting myself up as a martyr.   How dare you say that of me when you won’t reach out to help others yourself.  Writing a blog takes many hours of research.  I don’t do it for acclaim as you suggest.  I do it because I care about the plight of the many women who are injured by mesh.

You cannot bully me to go away.  I refuse to be intimidated by you or anyone else who turns their anger on me.  You would be better served by helping other women and your anger would melt away.  Now please leave me alone.

Bullying over the Internet happens to adults as well as children and I will not stand for it.  Find out why you are so angry and change it.  I chose to take my anger and help others.  You could do the same,  You don’t have to like what I write, nor read what I write, so why are you doing it?

My journey will continue………

7 Comments

  1. Anonymous

    I wanted to share a tip with you for airline travel, as i have also had to travel in a wheelchair. Even though you cant bring water through security, you can bring an emoty water bottle. I dump my water right before the xray and then on the other side, i ask the person pushing my chair to swing ny a water fountain so i can fill it up. They should do that for you. Of course they could also,take tou to buy a new bottle on the way to the gate but i know they will at leaatbstop for the bathroom and the water fountains are right there usually. Again, glad tou are home.

    Reply
  2. Linda

    Linda, the wheelchair situation also happened to me in LA. They put you on a hard wheelchair and left me at the gate. I had to go to the restroom that was some distance away. I very, very slowly hobbled to the restroom and back. When it was time to board, someone from the airlines brought me a wheelchair to help me board. I had a connecting flight in Salt Lake City. The attendant there asked if I wanted to keep the wheelchair with me. But, I was not given that option in LA.

    Reply
    1. lavalinda

      I think it is time to do a lot of complaining to LAX Linda. As soon as I feel better I am going to do it.

      Reply
  3. sylvia Lafferty

    I am so glad that you are home, Linda! I honestly don’t know how you handled that trip and still stayed in one piece as you tolerated that awful pain. I am so sorry that you are battling another infection and I pray that the medication will eradicate it quickly. And when the cath is removed, I will rejoice with you if you are able to go to the bathroom on your own. God bless you and thanks for sharing your wealth of knowledge with us.

    Reply
    1. lavalinda

      Thanks Sylvia. I am hoping it clears over this weekend ready to remove the catheter on Monday. Now I caught a cold on the plane which is something else I don’t need. Sneezing after surgery is not a good thing.

      Reply
  4. erika

    Dear Linda
    our prayers are with you.

    Reply
  5. Robin Robbins

    Linda, God bless you, I finally read YOUR recent experiences as I had been trying to share ours with many asking. And thank SO much for the great article you did from my sometimes MISH MASH! MESH MESS! mind! I KNOW I CAN ALWAYS FORWARD YOUR LINK and your way of telling my story to others who I honestly sometimes do not remember who or what I told what! I am so glad my husband said he had to interrupt you when you were checking on me the other day after my Inter-Stem Unit was put in permanently and were finally getting home. He said he finally interrupted you to ask you how YOU WERE!

    To those of you who may have contacted me and think I have forgotten you I may have forgotten your name but I WILL remember your story. So contact me again if I don’t you and I was supposed to after I got home. If in a week or two you haven’t heard I am sorry but I may have lost you in my chaotic world of organization I have now that I pray gets better as my pain does some!

    GOD is GOOD DON’T forget that! He doesn’t move away WE do! Satan uses pain to whisper in your ear God is not with you but HE IS! And someday you will know the reason you have went through something. BUT don’t ever give up before your miracle! It could be around the next corner that God has ready for you after you do your part! GOD BLESS YOU ALL! ESPECIALLY LINDA OUR CAPTAIN AND A COURAGEOUS ONE WE COULD NEVER HAVE asked or been given a BETTER ONE! Blessings, RR

    Reply

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