Hi, my name is Tandy. I live in Washington State with my husband and my two children, ages 18 & 21. We have an old pug and an old Chihuahua, as well as a 17 year old cockatiel.

It’s funny how life works. Once upon a time, it was little kids and puppies. Now they are moving out and moving on. My niece who is 22—just 6 months older than my son—just had the first baby of the next generation. I am a Great Aunt.

Until March 2014, I was a Certified Family Life Educator and worked with young female drug addicts and their babies and toddlers as a Parent Educator and Case Manager. The first time I tried to resign, my boss refused and insisted I stay on and work part-time—so I did. Last March, I couldn’t do it anymore and had to leave. It was a very special job in a very special place with extraordinary coworkers and I am grieving terribly, even after 11 months. They apparently miss me, too, since they have invited me to several staff parties (which I have gone to!).

I am trying to get SSDI and am on my first appeal. I have already chosen an attorney from Seattle if I am denied and have to go to a hearing. I have at least 2 conditions that I know are on the SSDI list of acceptable conditions. I know my application was exemplary—I used to help my clients apply for SSI for mental health and other reasons and most of them eventually prevailed. It is nuts that I have to go through this dance with the SSA when I have the support of 5 doctors, a well-documented history of conditions they acknowledge they recognize as disabling, and an application that I know was filled out comprehensively with lots of supporting data.

I have bilateral Thoracic Outlet Syndrome (TOS). It began 30 years ago with neck pain and stiffness with a cold and has never left. It was finally diagnosed in April 2014. In 30 years I have tried everything you can imagine for the pain and nothing has worked. I have had all kinds of (mis)diagnoses including, of course, that I am just depressed, lazy, faking it, seeking medication, or have deep psychological issues that I have suppressed and which are somehow expressing themselves through my pain.

In addition, I have a Primary Immune Deficiency, which means my body does not produce enough IgG immune globulin. My job was the worst possible for a person like me—a total petri dish of germs—homeless street people in treatment, on buses, at social service agencies, etc. Too bad I am not happy doing data entry all alone in an office.

In the last 11 months I have had knee surgery on my right knee and TOS surgery on my left side. Sometime this year I will have to have TOS surgery on the right side. My surgeon is Dr Kai Johansen and he is absolutely fantastic! I lucked out. He says he is fascinated with me because he has never had a patient who has had TOS for as long as I have. When he did my surgery, he found an extra rib and a scalenus minimus, no surprise.

Unfortunately, I do not like the only hospital he works out of. I had an extremely negative experience—as in, we-have-a-potential-legal-action negative. I do not want to go back there. I am afraid to go back there.
I go to counseling to help with my depression. I currently am getting acupuncture to help with my pain. I have been seeing my acupuncturist for about 8 years. I can no longer tolerate chiropractic and given the number of bulging disks in my back, it may not be a good idea anyway…I also have a herniated disk in my low back. At the end of this month, I am going to get facet joint injections for the first time. I also have pain in my thoracic spine but so far have not been able to “see” anything in MRI’s except bulging disks, a Shmorl’s Node, and a hemangioma.

I am working with a pain doctor, so I take a range of pills including Wellbutrin, Cymbalta, Topamax, Dilaudid, Lidoderm Patch, and Fentanyl Patch. I can’t take Gabapentin because it raises my blood pressure. I am sometimes on gamma globulin but it is horrendously expensive and I am taking time off of it. My husband has been unemployed for 5 months—but it looks like he may have a job by Friday! Woot! Once I can afford it, I would like to go back to Gentle Yoga.

I also have asthma, thyroid problems, TMJ, migraines, and early menopause.
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My left TOS surgery seems to be healing pretty well. I have full range of motion of my arm. I cannot sleep on my side and the pressure of my bra strap or the seatbelt is still uncomfortable. I had a really rough time the first week after surgery. This week for the first time in years, I can catch a deep breath. I don’t know if that is because of the TOS surgery or if my last round of Prednisone finally got rid of all the fluid in my lungs or what…one of my lungs is partially collapsed…but I have heard they can improve. I am grateful for whatever has caused the improvement. Last week after an entire week of prodromal migraine symptoms, I had my first migraine since my surgery. That is the first migraine since September. Not bad! Well, the migraine was bad it was horrible and it lasted 2 days but I went almost 5 months without one!

I notice a lot of NeuroTalk people are here because their children have health issues. My son has an Autism Spectrum Disorder and either bipolar or Borderline Personality, depending on which therapist you talk to. He is my biological child. We used to call him our alphabet soup boy because he had so many diagnoses that were comprised of letters after his name (OCD, ADHD, ODD, etc). They were all wrong. I also suspect he has TOS. He has chronic pain. I worry for him, for many reasons, but one of them is because I know it will be hard for him to get good care for his pain due to his psych diagnoses and the challenges he has advocating for himself and dealing with his options for medical care with a low income. My daughter is adopted from China. She has ectodermic dysplasia, a Mueller defect, and was born with imperforate ****. She also has chronic pain and has had multiple surgeries for her imperforate **** (4), extra bones and severe bunions on her feet (5), and gynecological issues (2). 11 surgeries in 18 years. She needs extensive dental implants and has joint pain. We are still identifying all of her needs.

I understand how scary and frustrating it is to have a child who is having physical or psychological challenges and not be able to find a diagnosis that will lead to proper care. My son did not get his diagnoses until he was 17 years old and it was not because of lack of effort on our part. We are fortunate that my background is in child development and I did a lot of things intuitively that they are now doing for autism spectrum kids. It was better than the “nothing” he would have had otherwise. And he is growing up to be a neat guy.

I am excited to be joining NeuroTalk. I am extremely depressed and am having a really hard time adjusting to not going to work. I miss my coworkers, my clients, and all the babies. I miss feeling like I am making a difference in the world. I am committed to taking all the time I need to deal with these things and find out what “health” and “life” look like to me at the other end of this tunnel, when I get there. When I get there. I believe I am doing what I need to be doing. But it is so hard.

So hard.

I cannot sit in the sunshine and pull weeds or shop for groceries or fold laundry. I cannot do most of my hobbies. I have not been camping since 2007. I cannot sleep in a regular bed. I cannot cuddle with my husband. We just celebrated 30 years of marriage but I am not sure what we are celebrating. Many days I am too tired and in too much pain to get out of my adjustable bed. Mostly I read. On good days, I putter. I try to keep my spirits up. I love to sleep because in my dream life I am everything I am not in real life.

So. Here I am. I will try to visit once a day. I look forward to getting to know you all. I hope I have something to offer you. I know you have something to offer me just by being here. I promise to post shorter posts from now on.
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~Thanks—Tandy~