chronic illness

Starting Research

Last week, I had an appointment with my rheumatologist that I was a little anxious about. The last few visits to any of my chronic illness doctors have not been the most encouraging as we have gotten to the point where we have exhausted a lot of our options. John wanted to be sure that he made it to this appointment with me since we were going to be discussing future treatment options.

Since my last appointment (which fell right after I got out of the hospital for the third time this summer), I had boycotted my medications so I wasn’t sure how he was going to take it. I had gotten frustrated taking pill after pill but not having any results. Sometimes the side effects were worse than the initial symptoms and after a while, enough is enough and I had had enough. Granted, I don’t feel any better not taking the medications but I do not feel any worse either. I previously talked to Dr H (my obgyn) and she was ok with my decision except for the fact that I quit my thyroid medicine too (a big oops on my part – I did not really plan that one but kept forgetting). While I was already stopped, we decided to wait a couple of weeks to check my levels with the medication out of my system to see how it is functioning on its own since I was borderline when I started treatment. I should have the results this week.

When I told Dr. P about stopping the medications, he was supportive. Unlike a lot of doctors out there, he is in the “less is more” category. My first rheumatologist overmedicated me to the point where I could hardly remember my own name (and I only wish I was kidding) so it is nice to have someone who was not always pushing medication. Still we are facing the dilemma where my fibromyalgia symptoms are not being controlled, with or without medication. A new and rather starting symptom has made an appearance in the last few weeks as I have started experiencing numbness in my ring finger and pinky in both hands and my outer two toes. Since it was appearing symmetrically, I knew I hadn’t damaged the nerve as I would have to have injured four different nerves in the exact same way and function was not impaired, just feeling. After examination, Dr. P believes that it is just a new manifestation of fibromyalgia and nothing to be overly concerned about (although we will closely monitor). We are running a full panel of blood work just to be sure there is nothing hiding autoimmune-wise that could be affecting my chronic illnesses. Last spring, I also had good results taking an anti-inflammatory but then had issues with my liver count rising so we were not sure if it was a direct result of the medication or if it was tied to my soon-to-be-disclosed bowel obstruction so we are checking current liver function to determine if restarting an anti-inflammatory is possible.

The other item of discussion was disability. Honestly, it is a discussion that I never, ever could have imagined having at 31 years old. Ever. It is also one that has taken me a long time to even consider having it. It took much prayer, deliberation, and lunch date with a mentor to admit that it needed to occur. As it turns out, my rheumatologist also reviews charts for disability cases for insurance companies and while he was not trying to be discouraging, he wanted to be honest and helpful. The issue with pursuing disability with fibromyalgia is that there is no one test that can diagnose the illness and physically show its impact on the patient. There is no x-ray, MRI, or even blood test that I can show as physical proof of my diagnosis. He said that my endometriosis and chronic pelvic pain will be  easier to argue since I have physical evidence, such as surgery photos, as evidence of my disease. However, even with my multiple diagnoses, disability will be a fight because of the invisible nature of my illnesses and my age. We had assumed all of this going in but I was glad we got the conversation started.

We are not 100% decided whether or not we are going to begin the disability process but we are definitely starting research due to chronic illness. I am going to start looking up all of the steps that are involved in the process and start gathering my medical records. We also need to start putting together a budget as obviously if the decision to pursue disability is made, our income will be greatly affected. We needed to work out a budget anyways so this is definitely motivation to quit putting it off and get serious. It is also a kick in the pants to start learning how to coupon which I have always wanted to do but have been too lazy (if anyone has tips on how to get started, let me know!).

So that is where I am at right now. I definitely have more questions than answers and I am definitely nervous and anxious about what lies ahead but there is also some relief in getting the conversation started. 2013 is shaping up to be quite possibly a life changing year.

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11 comments on “Starting Research

  1. Annabelle says:

    Disability’s not something you ever want to have to talk about, particularly when you’re young, but it’s not the end of the world either. (Your insurance is a tool for getting you the life you need, right?) It also doesn’t have to be forever.

    I hope that however this turns out for you, you find a solution that works for your life.

    • Jamee says:

      Thanks for the encouragement! I keep reminding myself that my worth is not tied up in whether or not I need to file but it is just a tool to provide me and my family a better life in terms of quality of life!

  2. cheryl says:

    it was a hard moment for me when i filed…i held all but completed for some time. but i know it was what i needed to do and that people like us are who it is meant to help. there’s a horrid stigma that stems from the foks who abuse the system (it seems they are everywhere), but there is NOTHING wrong with filing when you need it.

    i was warned that close to 90% get a “no” at first….i did. i was also told that if you stick with it, they usually do grant them to folks who have a real need. it DOES take eons though….i was told to expect fifteen months from the initial denial before the appeal is heard…i’m waiting now (that’s also due to the abusers…and you are NOT one in case you have a moment’s doubt about that).

    i did hire a law firm and have been repeatedly told that’s a good move (i figured i’d try the first form on my own and called when i got the denial letter)…they know the system, the words, etc they usually get a cut of your back benefits rather than a traditional fee.

    feel free to reach out via FB if you need to vent about the forms etc. or just “talk” about the choice.

    • Jamee says:

      I most definitely will have questions for you! I have private short term and long term disability policies which will be a help when fighting for disability as I know I will be initially denied and will have to appeal! Thank you for your support!

  3. Diane says:


    I’ve been right where you are. I’m on SSI/SSD right now. I was denied three times, before finally getting approved. It is the hardest thing ever and took over two years. Between my Endo and stomach issues, I can barely move each day, but like your dr said, it’s hard to prove something that is so subjective. Even having pics of my 20+ surgeries, they still fought me. I didn’t hire a lawyer but would advise it. I got cheated out of a lot of back pay because of not having one. I was finally approved after going directly before a judge and answering two questions and explaining how my life is.

    I also have taught myself how to coupon and train others in my town. Have you seen that show Extreme Couponers? Ya, I’m kinda like that. 🙂

    Feel free to write me for any questions regarding either thing. My email is:

    I’m praying for you! I’m only 30 and I get it. It’s SO hard to be disabled so young.

    • Jamee says:

      Thank you for all of the information! I will definitely have some questions for you! I’m still waiting on the results from my most recent test results and then we’ll look into what the next step is (which may be seeing if my doctor will sign off on disability for my private insurance so we can start the process)!

  4. Lynn Daws says:

    I also recommend hiring an attorney. I was approved on the first attempt and I believe it was because I had an attorney. They do put you through the wringer with all their paperwork and it does take a long time but you have a right to the benefits. You dont have to pay upfront for representation and they can only charge you 25% of your back pay up to $6000. So hire the best attorney because they all get the same pay and they will take it out of your awarded back pay and if you dont get it you dont have to pay them. After 2 yrs of disability you are eligible for Medicare A and B. My Medicare benefits start next month. If you have any questions dont hesitate to ask me, I will help all I can.Good luck and hope you’re feeling ok.

  5. Newsround 0701. | Project: Endo says:

    […] Blog post: starting research. […]

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  7. […] myriad of issues, I face we were never quite sure which symptoms tied to which illness. But when I rebelled and stopped my medications, she was concerned primarily about my thyroid function without […]


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