Anniversary OR Looking back into the life of a TOSer

[If you don’t know about TOS/Thoracic Outlet Syndrome, click here.]
For those who are reading this article thinking it as a sweet memoir of some lovable memory, I am sorry to disappoint you.
3 years ago today, I was preparing for my right cervical rib removal surgery, scared and unknown of the outcome…But full of hope that everything will be okay as soon as I get rid of that “thing”.
Most of us who have had this rib removal surgery go through the same phase, same emotion- more or less. It’s hard to take a leap of faith when your doctor tells you that you are not going to be completely cured for the rest of your life but still the whole process will take out “some” of your difficulties.
[If you are a TOS sufferer and want to join the TOS support group, click here. ]

Let’s look at the “what if” facts if I wasn’t born so “special”.
  • I would have continued my practice as a dental surgeon.
  • I would have been in a different place than I am now.
  • May be I would have started a family…. Who knows?!

Now let’s look at what I have achieved and where I am today.
  • I have learned not to take life too seriously.
  • I have learned to ask for help.
  • I have learned to live in the present and “go with the flow”.
  • I have started doing a part time job completely different from my previous one and some freelancing work as a makeup artist, which I have never considered before.
  • I have learned to give voice to my opinion and started writing this blog. Truth to be told, this blog is one of the best things that happened to me since my illness.

Yeah, I know I am sounding like a philosopher of some kind…but those who knew me before can relate to the fact that how radically my attitude and outlook for life has changed in all these years.
Before all the cervical-rib-episode started, I was so focused on the future and taking life seriously that I missed most of the teenage fun and drama. I pushed myself to the limit to get to the top of the class and achieve a brilliant career. (Yup! I was a nerd!)
If my 18 year self would read what I am writing right now, I am sure she would have a mini heart attack!
Here is how the scar (or scars) looks up front:
Right sided scar..Almost faded…Left one is still very prominent.
And the side view:
Right scar…starting and ending.
Enough with my narcissistic rant!
Today let me share some of the stories of my fellow TOS sufferers…about what we have to deal with everyday…and for the rest of our lives..

     Our body betrays us-

“Does anybody have problems with their hands not working? My right hand just doesn’t work sometimes. The tingling is constant and I have periods where the whole arm goes almost numb, but what is most concerning is that a lot of the time my hand just doesn’t work. It is weak and cramped and painful.”


We dread pain medicines-

“It’s funny, we need the drugs for pain control and yet we don’t want to take it. Then we have the druggies who don’t need it, but want the high. I don’t understand why anyone would want to feel medicated on their own free will!!!

 We rejoice ourselves when we can go medicine free-

“Been med free since the end of May!!! Had a few days where I did take something. As of lately, the pain is getting worse. I was afraid once the weather started changing this was going to happen. The past 3 days have been a 7 out 10 on the scale of pain. Been roughing it out, but it’s wearing me down. I hate the thought of taking the meds again.”

We are somewhat “immune” to pain medications-

“Pain meds haven’t helped at all today, along with heating pad, bitching about the pain and my muscle relaxer. So guess what?! I’m going to have a beer! Yes, a BEER!!!!! Maybe 2! It can’t hurt and maybe the pain will be numbed for awhile at least? Ughhhhhhhhh!! why why why do I have nerve pain/damage?!?!!”

Some of us get help in the form of disability-

“I got great news yesterday. I was approved medically for disability. Now I am just waiting for the non medical side. Not worried about that since I know I have more than enough credits to qualify.”


We have to live by the rule one-thing-per-day-

Yikes! Way overdid it today. For some reason I found the energy to make a stew and cupcakes with icing. Big mistake!!!”

We learn to live with constant pain and discomfort-

“Day 2 of severe neck pain and mild dizziness. It gets worse when I’m in a car either driving or riding…gotta call  my doc…Waiting on that…had to call off from work for the pain!”

We find comfort in the support groups-

“This is the only place I can come that no one puts each other down or tries to make others feel bad about what they choose to do. There is no competing or jealousy. No one here is better than everyone else. We are all equal. We don’t do a better job than one another. We support one another. We don’t treat each other horribly because we deal with so much on a daily basis.”

We hope for a better future-

“Today I’m hoping is a little better… Still had bad pain in the neck and dizziness yesterday…not sure what has caused this….Doctor has called me in a new pain pill…I just don’t seem to do well on those…fingers crossed for today will be better!”


We start over our lives by taking baby steps-

“Since my rib was removed in May, I seem to be doing a lot better. I wish the rib was removed years ago and happy that I pushed the doctor for the surgery. Two doctors didn’t want to do surgery and just wanted me to deal with it through Pain Management. You have to be such an advocate for yourself.

I look forward to a happy life again and get glimpses of life on a good day. You are all in my mind and hope you all can get some relief. It’s been a long journey that is not nearly over…but I enjoy some good days. Baby steps…”

And last but not the least, WE ARE THANKFUL-

“I know I vent on this site a great deal in the middle of the night and I want to personally thank each one of you. I pray for all my FB friends in sooo much pain and my goes out for you all. God bless you all. I want God to hear our prayers of helping each one of you =) Thank You!!!”

[Due to privacy reason, the names have been withheld in the posts  mentioned here.
I love you all my fellow TOSers!]

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Comments:

  1. I am glad that you can relate! 🙂

  2. Love the one-thing-per-day rule 🙂 Too, too true.

  3. Thanks for the post Sophie! I will surely check it out 🙂

  4. Hey gorgeous, I am currently having a giveaway over on my blog at the moment, I would love for you to check it out 🙂
    Punky Pugs Beauty products Giveaway
    xxxx

  5. Hello Robin! Thank you for your time! I will always remember how frustrated I was not knowing what will happen…if we don't share our experiences, the rest of us won't know how to cope or survive.
    Hugs back!

  6. Great, great post! Even though it is not always life is totally great now news, we who have dealt with TOS need to be honets to help those who are just coming along to face the trugh and mentally prepare for what is ahead for them. Everyones different, but our sharing can go a long way in turning the light on this disability. So glad you are persevering and learning to live well, even with TOS. Gentle hugs~Robin

  7. You have always supported and encouraged me with your kind words Tara. I am thankful that our paths have crossed!

  8. Anonymous says:

    I'm so proud of you Wasifa, you have become so strong. I love that you've learned to advocate for yourself and for others. Despite your pain, you embrace your life. Carry on!

    Tara

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