No announcement yet.

Try Teri's suggestion of a letter to docs

  • Filter
  • Time
  • Show
Clear All
new posts

  • Try Teri's suggestion of a letter to docs

    Months ago, Teri suggested to someone to write a detailed letter of how all of your disabilities, including IC, have impacted your life. That way they can truly know just how sick you are.

    It really helped, everyone. Wrote the letter as a history about how the symptoms effected my work, my family life, my social life. Once I wrote the letter, I was shocked to see how much my IC had progressed.

    In part of the letter, I included the steps I had taken to allow myself to keep working. It told how on many days I would get up at 3:30 AM and walk around, get in the shower, apply heating pads, etc. in order to get comfortable enough to go to work. I told how I forgot things when working with my kids at school because I was so exhausted from pain, lack of sleep, and side effects of the meds.

    Gave this to ALL of my docs, including my primary care physician and physical therapist. Let them have a month or so to read it and digest it. Then, the next visit, I asked them to support my SS application. NO problem. Gave them at that time the "Disability in a Nutshell" packet that shows a sample doctor letter. Took most of them a couple of months to do the letter, and I asked them to send it to me (on a short cover letter I included with the "Disability...Nutshell").

    That way I could check it and especially check on one doctor who seemed hesitant to believe that my pain was so intense that I could not live a normal life. Believe me, my history letter turned her around. She wrote one of the best SS letters of all!!

    It took a while to do, but my history letter was so cleansing. I cried, others including my husband and parents and siblings did too. But, once it was done and the doctors had read it, I noticed a new respect in their eyes. It showed how one person had tried to work despite her disability...but that it had progressed too far now.

    Any others had a similar experience?

    Had anyone else submitted the required SS forms and doctor's letters only without the medical records when you first filed? I am very leary that this will make me wait longer.

    There is one good thing here. I have been out of work for over a year now, and the docs say that I will not be able to go back unless a cure is found...they did that on their own.

    Thanks to all who read this long post. Trying to help others who may be just starting through this process. Also needing some assurance myself right now.

    I really, REALLY want to get SSD based on IC only. Hope that it's possible. What do you think?? Looking forward to your responses to this post...any info gladly accepted.

    Prayers and positive thoughts for all,

    Positive thoughts and prayers that new treatments for IC will reach all who struggle with this disease,


  • #2
    I am really glad to read your letter here, Susan, yes it can affect us to see it all in print. And yes most of us DO go through all kids of dog an pony tricks to keep on working.

    Good luck to you. I am sure your letter here will help a lot of people.

    Hugs Julie B
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author

    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

    ........ ........

    Other IC Diet Resources:

    IC Diet Webinar
    IC Diet Website
    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
    Free IC Diet Booklet: What Can I Eat?
    Confident Choices IC Diet Blog
    IC Diet Newsletter

    *Let's Connect!*


    • #3
      Susan, great post In the beginning I wanted to win on IC alone too.....I don't think the system is quite there yet but we are definately opening doors. Especially if everyone keeps sending tons of info on IC and we have our uro's behind us.

      The one thing we CAN NOT do is give up. If we apply, we have to keep on fighting. We have to show the system that we are not going to go away.....with every win, we get a little closer and maybe someday women won't have to fight so hard for something they deserve.....
      tons of hugs teri
      Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".