I have made my disability into a capability: Part 3 of 3

Contributed by: Dana Morningstar
Reviewed by: Evelyn Corsini, MSW, July, 2011

Dana is a 36 year old woman who lives in Georgia with her husband and their adopted baby boy. She has several medical conditions and has lived with chronic pain since she was a young child. In spite of these problems, Dana completed college and nursing training. Her personal story is presented in 3 parts.  It describes how she did not let her pain and disabilities stop her from setting and achieving her goals.
This is part three.

My life now

We moved to Kentucky in 2002. We bought a beautiful new two-story house. After we were all moved in, I couldn’t walk up the steps to the second floor! I went to my primary doctor. He x-rayed my hips. He saw no abnormalities so he sent me to an orthopedist. The orthopedist sent me to an orthopedic surgeon. That is when I was diagnosed with Stage III avascular necrosis of both hips.  [Editor’s note: avascular necrosis is a medical condition in which the blood supply to a bone is lost.  Without blood, the bone tissue dies and the bone collapses.] Although this isn’t terminal, it felt like a death sentence. There was nothing they could do. They needed to replace my hips because they would collapse very soon, but I was too young for a hip replacement, so I had to be put in a wheelchair to keep the weight off of them. I was horrified, scared, and felt like I was running out of time.

This was October of 2002, and in November they did a procedure called core decompression in both hips to clean out the inside of the bones in hopes that new blood cells would form.  It worked on the right hip, but the left hip collapsed in August of 2003. I had been working as a diabetes educator at a nearby hospital when it collapsed.  I had to quit my job.

I had a left total hip replacement in December 2003. I got my first disability check for February in March of 2004. In 2003, before my hip replacement, I was diagnosed with avascular necrosis of the knees and shoulders.  Also, that same year, the Kentucky rheumatologist I was seeing diagnosed me with sero-negative rheumatoid arthritis, which he later changed to sero-negative spondyloarthropathy.

I was also diagnosed with Sjogren’s. I was treated with steroid drops and then with rewetting drops (artificial tears), and later a prescription was written for a new medication that actually decreases inflammation so that your eyes begin to make their own tears. I was put on an anti-inflammatory and a disease-modifying anti-rheumatic drug (DMARD).

In 2005, I was diagnosed with fibromyalgia. We moved to Rhode Island in 2006, and there my doctor put me on methotrexate. I did much better on that drug. He also diagnosed me finally with psoriatic arthritis instead of sero-negative spondyloarthritis. I saw a hand surgeon who told me that I had lost all connective tissue in each of my fingers. He prescribed finger splints for each finger. They work wonderfully. It wasn’t until this year that I had to replace them with stronger ones.

In 2007, we moved to Georgia. I have all new doctors now and I am on a large number of medications. I’ve had three hip surgeries (including my total hip replacement in 2003), three shoulder surgeries (including a shoulder replacement in March, 2010), my gallbladder removed, and two laparoscopies.

I was very lucky to meet a man who is a wonderful caregiver/caretaker. Every time I have had surgery, and every time that I have a severe flare, he is there for me. He will make sure that everything is taken care of and handled. He has washed my hair, given me a bath/shower, and even shaved my legs.  We have been together for 17 years and married for 11 of those years. He is my rock! When we said our vows, we included that we would be together for worse or for better, and in sickness and in health, and we definitely have. He has never left my side. We also vowed to have a family. I always thought it would be a big family with lots of kids, and who knows; maybe it still will be.

We began the process of adopting a child in 2004 with Catholic Services in Kentucky after my hip surgeries, hip replacement and first shoulder surgery. Then we paused for my other shoulder surgery and gallbladder removal. We put everything on hold when we moved to Rhode Island, believing that we would only be there for the school year and returning to Kentucky to continue where we left things with the adoption procedures. When my husband was offered a job in Georgia, and agreed to take it, we agreed to end the adoption process in Kentucky.  Therefore we had to begin a new process in Georgia. We started with Catholic Charities in Atlanta, only to be told they had no babies available. They said they would let us know when the next class was available to begin again. We thought it wasn’t a wise choice to wait on that one adoption agency, so we decided to go through the foster care system in our county. We took the seven week course, finished it, and completed everything, even down to the fingerprinting; but we never heard anything. It turned out that the offices were moved to another building, and all of our paperwork was lost in the shuffle.  I was devastated! We were open to adopting a boy or girl of any age from 0 to 12 years, of any ethnicity, race, religion, and even a sibling group. That is when we switched to working with a facilitator who helped us with marketing basically. By this time, it was summer of 2009. We had been trying to adopt a child or baby since 2004.  We were desperate!

The facilitator helped us with an adoption website, making a video, a photo album to show the birth parents, as well as all the steps involved in adopting from another state. We prayed a lot. We put our adoption website link everywhere, hoping that the birth parent that was supposed to see it, would see it, contact the facilitator, and we would finally be matched after all these years. We became “active” December 17th, 2009, and Michael was born December 14th, 2010!  We decided this time we wouldn’t pause for my shoulder replacement surgery.

It still feels like a dream. We received a phone call in October, 2010 that a birth family was interested in us. We heard from the birth mother and her mother. They chose us because we were Catholic and because I am a stay-at-home mom.  The phone call with the birth family was wonderful too. We agreed to raise him Catholic and name him Michael.

Being a mother is the most amazing experience in the world!  Michael has turned 6 months this June 2011 and was baptized at the end of the month.  He has been developing above and beyond his age level, rolling over at 2 weeks, sitting up at 5 months, and crawling at 6 months.  His first word is “da da!”  Every morning I look into his crib and see his smiling face; he is happy every time he wakes up!  I have realized that there have been people who have doubted my ability to be a mother.  I know now, that I am a fabulous mother!  It is so much easier than I ever imagined.  I thought it was because I had expected it to be so hard, even impossible, but it comes very naturally to me.  I love to hold him, play with him, kiss him, and of course teach him about life.  I think he will be a better person having a mother with disabilities.  He will learn to respect and understand ALL people.

Although I don’t work anymore for a paycheck, I do keep myself busy. I volunteer with the Arthritis Foundation. I also volunteer with a local emergency pregnancy center.  Well, a lot of how I got to where I am today is because of who I am. I am a type A personality; I go, go, and go. Even if I think I can’t go anymore, I can always find something extra inside of me to do one more thing. I always set high goals for myself is what I believe; always set your goals higher than you think you can reach because you just might surprise yourself and actually reach them.

Also, I’m a people person. I am a very positive person. If you had half the physical disabilities that I have with a negative outlook on life, you would not be able to accomplish anything. You would be incapable or disabled, whereas I may be disabled, but I see myself as capable.  There is a huge difference in how you see yourself because how you see yourself is exactly how others will view you. If you have a disability but see yourself as capable, that is what others will see as well.

We are all faced with different struggles in our life, and my struggle is chronic illness. I have dealt with it for many years.  My life is a compromise between myself and my chronic diseases. I have learned how to live with them. I have also learned how to mother with them.  My huge accomplishment now is through volunteer work with those who have arthritis. I am the co-chair for the Young Professionals Group with the Arthritis Foundation in Georgia. I have been doing this for almost three years now. I also help as a counselor at a camp for children with arthritis, am a speaker for the Arthritis Bureau, have been trained to teach the Self-Help Group, am an Arthritis Advocate, and I also help with the Arthritis Walk Atlanta. I also have started an internet radio show for people with chronic pain and chronic illness. It is a weekly show that I began in the fall of last year. It is about my life experiences, self-help, inspiration, positivity, as well as medical information. In summary, I have made my “disability” into a “capability”, and changed myself from “invalid” into “valid.”

Dana maintains a blog (gavertarm2bambidextrous.blogspot.com) and hosts an online radio show (www.blogtalkradio.com/danamorningstar).

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