July 26, 2011 | ISSUE 106 | |||||
Welcome to the painACTION NewsletterI Have Made My Disability Into a Capability: Part 1We received an inspiring personal story from painACTION subscriber Dana. Now married and a mother, Dana vividly recalls many details of dealing with pain and medical problems since her childhood. Dana's personal story has been divided into three parts. Part 1 describes Dana’s early childhood, her migraine headaches starting at age 10, and the pain in her joints that began later in grade school. I Have Made My Disability Into a Capability: Part 2In the second part of her personal account, Dana writes about going to college for a degree in nursing. Although her college years were interrupted by many medical problems, she was able to finish school and begin working as a nurse. I Have Made My Disability Into a Capability: Part 3As a young adult, Dana received medical diagnoses that helped explain her pain but she required several surgeries that left her unable to continue working. Dana shares her experience with marriage, having additional medical complications, having a supportive husband and recently adopting a baby. Dana also describes her current interests and activities as a patient advocate and offers herself as a resource for other people living with chronic pain. Share What You Have LearnedYou can help other people who have chronic pain by sharing your thoughts and observations about what helps you. Send us your response to the statement below: "This was my experience growing up with chronic pain..." RegistrationRegister at the painACTION website to get information tailored to your interests and needs. Learn More about painACTIONTake a Tour of the painACTION website. Do You Have Suggestions for Future painACTION Topics?Reply to this email to let us know what's on your mind. UpcomingDepression, sleep, and pain |
Next Issue: Depression, sleep, and pain | ||||
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| painACTION is supported by Endo Pharmaceuticals, Inc. The contents of this newsletter are for informational purposes only and are not intended to be a substitute for professional medical advice, diagnosis or treatment. Reliance on any information provided in this newsletter is at your own risk. You should consult your physician or other qualified health provider if you have questions about a medical condition. If you think you have a medical emergency, call your doctor or 911 immediately. ©2011 Inflexxion, Inc. All rights reserved. | |||||
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I have made my disability into a capability: Part 1 of 3
Contributed by: Dana Morningstar
Published: July 25, 2011
Reviewed by: Evelyn Corsini, MSW, July, 2011
Published: July 25, 2011
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 three parts. It describes how she did not let her pain and disabilities stop her from setting and achieving her goals.
This is part one.
My childhood with pain
I think people wonder how I didn’t become totally dependent on my parents and not even go to college at all, or even become totally dependent on my husband after my health became so much worse when we got together, or how I had enough strength to go to college, set goals, become a professional, get married, and plan for a future with a family. I did all of this without dissolving into a pit of self-pity, without staying in bed with the covers over my head, without becoming totally dependent on anyone. I had a fairly normal childhood. I went to a Catholic grade school, followed by a Catholic all-girl high school. I went to Homecomings, Fall Festivals, and Junior and Senior Prom. I played sports, went to dance school, was in school plays, and was a part of all the extra-curricular activities that I could possibly fit into my schedule. I had dreams that I was going to get married someday and have a family with lots of kids. I always wanted to go to a university. When I was young, I didn’t know if I wanted to be a journalist/writer, a teacher, or a nurse. They all seemed so appealing. I always had a passion for writing, but I was pulled toward helping others. If I was a teacher or a nurse, I could help people. So, when it finally came down to picking a university, I decided if I go to nursing school, I could help people to feel better and could still educate others, and well, writing could be a passion of mine in my spare time as a hobby.
So how did it all begin? The chronic pain is what I’m referring to. I might as well just get it out in the open. It’s been there since I was a child, and I’ve learned to live with it, to see it as a part of life, a part of each day and night. It is not an easy thing to deal with, and I don’t get used to it by any means, but I learn to live with it. I learn to share my life with it. In a sense, it’s a compromise.
I was born two months premature and otherwise healthy as far as the doctors knew. I was 4 lbs. 11 oz. I had a full head of dark black hair. I screamed and cried all the time, which I guess they thought was because I was colicky. All my baby pictures are of my eyes squinty and my mouth wide open screaming, tears running down my cheeks, and my face bright red. Fast-forward to when I was 11 months old. My cousin was a couple months older. She had been walking for a while. I wasn’t even pulling up on anything. I was, however speaking in full sentences! So, I was extremely late to walk. Also, I could not do things with my fine motor skills very well. I was unable to flush the toilet or turn the doorknobs until I was five years old. Now, I’m not sure if we can prove that any of this has to do with the fact that I was already experiencing chronic joint pain or not. Back then they didn’t really have the expertise to figure that out yet. My mom did put me into dance class at a very early age, 2 or 3, to help with my motor skills and to build my muscle strength and balance. It was probably the smartest and best thing she ever did for me.
I do know for a fact that when I was ten years old, the pain started, but it was a different kind of pain that I struggled with then. I began having migraines at this very early age. I would have auras of flashing lights and a tunnel-like sensation a couple days in advance. Then the headache would begin on one side of my head. My eyebrow on the right side would begin to droop, and the right eyelid would sag. The right side of my lip would begin to drag, and I would lose feeling in the entire right side of my face. Slowly the right side of my body would begin to lose feeling, and then go numb as it worked its way down from my shoulder, arm, hand, leg, and then finally my foot. It would last about 72 hours. I was diagnosed with complex hemiplegic migraines at age 10.
I was unable to miss school because it would be too much work to make up, so my mom would drop me off late to school on those days with the light and sound-aggravated pain. She would watch me as I walked down the hall to the principal’s office. I would take a step with my left leg and then drag my right leg alongside it, take a step, then drag, etc. All day long at school I would have to endure the pain and the loss of mobility and feeling on my right side. I also would have to write and do everything with my left hand because I had no use of my right hand. Up until I was ten years old, I had favored my right hand. Doctors did tests to rule out a blood clot, an aneurysm, multiple sclerosis, and strokes. All were negative. I was just lucky to be having these complex hemiplegic migraines.
Interestingly enough, during my grade school years, I was dancing professionally with different ballet companies in Missouri. I was in “The Nutcracker Suite” and traveled with “The Nutcracker on Tour.” This is when I began to have different joint pains. I would have vague wrist, ankle, elbow, and knee pain. The worst pain and problems were my hips though. They would always feel like they were out of place or popping. They would ache, and I would always find myself on the floor trying to relieve the pain with certain positions. I also had issues with my shoulders, which were not as bad as my hips, but included popping, feelings of displacement, aching and pain from the front to the back. Everything that I did to help the pain wasn’t because I was taking the advice of anyone in the medical field. I just tried anything to relieve the pain. Anytime I said anything about the pain, I was told by doctors, dance instructors, and my parents that it was just from all the practice. I probably strained something or pulled something or was just working too hard. No one thought it could possibly be anything THAT serious.
I always had problems with getting sick. My doctor told me when I was still in grade school that I shouldn’t go to slumber parties because my immune system wasn’t like all of my friends’. Every time I would stay overnight at a friend’s house, I would end up achy, feverish, and fatigued. As a matter of fact, I still use that feeling to explain my flares nowadays. I call them “slumber party hangovers.” I soon realized that the lack of sleep, being so close to my friends while we slept, and sharing snacks and drinks and stuff, would make me sick every time. I was always unable to take P.E. because my spleen was enlarged. And on top of all the flu-like symptoms, I also continued to have the awful migraines.
I went to high school, and although I was sick a lot, overall my four years there were not too bad. I had some unexplained fevers and general malaise. I had mononucleosis my sophomore year and missed some school. I had a hard time feeling normal again. I was fatigued and so tired all the time. I would come home from school and just want to sleep. I kept busy though, and I kept my grades up. I began to have stomach problems in high school which I thought was because of stress. I was taking a lot of college credit classes and involved in so many extra-curricular activities, so I figured it had to be stress. I made sure to take a lot of science classes and writing classes as well to keep my options open for college.
By the time I was a junior in high school I knew for sure that I wanted to be a nurse, and that was the direction that I was headed. I was glad that I kept up with the writing classes though because they helped with my creative side. I really enjoyed writing, and I knew that part of me would never die. When I graduated number 8 from my small Catholic girl’s high school in 1993, I won the science award for taking the most credits in science in four years of high school. I had been in the National Honor Society my entire time in high school, and managed to be the editor of our literary magazine, a cheerleader, in the Drama Club, the CARE Club, the secretary/treasurer for Students Against Drunk Driving, and a tutor in French and Math. Outside of school, I was still dancing at a professional studio and volunteering at a nursing home and at a place that made sure that when newborns were sent home from the hospital they were getting the proper laboratory tests done, and being formula fed or breast fed properly.
Dana maintains a blog (gavertarm2bambidextrous.blogspot.com) and hosts an online radio show (www.blogtalkradio.com/danamorningstar).
I have made my disability into a capability: Part 2 of 3
Contributed by: Dana Morningstar
Published: July 25, 2011
Reviewed by: Evelyn Corsini, MSW, July, 2011
Published: July 25, 2011
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 two.
A young adult with pain
I was able to take a trip to England and France with my high school senior class in 1993 after graduation. We did a lot of walking and hiking, and therefore we had to carry all of our belongings with us everywhere we went. My biggest concern was the migraines and the nausea and stomach problems. I thought it was because of the travel, the different foods and time change, and riding on buses, boats, and planes, etc. I’m so glad, looking back, that I went on that trip. I was accepted at the two different universities in St. Louis I had applied to and decided on the one. Even though I lived in the same city as the university, I received a scholarship with room and board, so I was going to stay in the dorms, and so was my long-time friend. Even though I lived close to home, I learned very quickly that I was on my own. When I was sick, I didn’t have my mom right there to take care of me. I had to learn how to take care of myself now. I was becoming a young adult!
Freshman year of college went by pretty quickly and wasn’t too bad. I started college at 85 pounds, and was still skinny like that through my freshman year. The stomach problems got much worse, and all I would eat was cereal. My back hurt, and I continued to get migraines. Then I began urinating pure blood! The pain was like nothing I ever felt. I was going to the ER all the time with painful urination, blood in my urine, and back pain. That is when the cycle started that I always would have red blood cells in my urine. I would get bladder infections, kidney infections. My white blood cell count would be low. I was a mess, but no one could figure out why. Then my sophomore year, I got mononucleosis again. This time was much worse than when I had it in high school. If I tried to get out of bed, I would get so sick to my stomach that I would vomit. I slept through my entire sophomore year! I passed it though. I didn’t have to retake any classes.
I ended up getting hospitalized my junior year of college with unexplained fevers and stomach pain. They could not figure out what was wrong with me. I also had pain in my joints. They discharged me with no diagnosis. They were so clueless. I ended up beginning to have all kinds of chemical and food sensitivities by my senior year of college. I began seeing an allergist. I was still having unexplained fevers, joint pains, stomach pains, and swollen glands.
Finally, I graduated and started working as a nurse. I had to have my physical for my first job. They told me I needed to follow up with my primary doctor because my blood pressure was running high. My blood pressure was indeed high. My doctor said she wanted to start me on a water pill. Every time I checked my blood pressure at home or at my next doctor appointment, my blood pressure was higher. Then, on one Easter Sunday afternoon, I was feeling completely “out of it”. My aunt, who is also a nurse, took my blood pressure. It was 250/180! That is when the doctors put me on a stronger blood pressure medication and took me off my water pill. I was also sent to a nephrologist and a cardiologist. No one ever figured out why my blood pressure was high. I was just diagnosed with primary hypertension, meaning that nothing is causing it.
In 1998 and in 2000, I had to have laparoscopies done for endometriosis. I began to think that maybe that was the stomach problems I had for years. I was put on an injectable drug that put me in menopause to keep the endometriosis from growing back. I was on the injection for a total of 22 months. I ended up never starting my period for six whole years, not until my ob/gyn put me on birth control. I’m not even really sure that my periods that I have now are real or hormone-induced from the birth control. I don’t know if I would really have a period without the birth control, and I’m not really willing to try it out just yet.
In 1999, I really started having severe joint pain. My knees, hips and shoulders were especially bothering me. My right hip began to click and pop a lot. I began having trouble walking up our back steps to get in our house. Sometimes the pain in my knees and hips would be so bad; it would stop me dead in my tracks! I went to my doctor, and he examined my head! Yes, he had my head examined! There were no lesions to make him think it was MS, so he sent me to a psychiatrist because he said it must be depression. Well, at this point, I actually was depressed because I wanted someone to tell me why I was having so much pain.
Dana maintains a blog (gavertarm2bambidextrous.blogspot.com) and hosts an online radio show (www.blogtalkradio.com/danamorningstar).
I have made my disability into a capability: Part 3 of 3
Contributed by: Dana Morningstar
Published: July 25, 2011
Reviewed by: Evelyn Corsini, MSW, July, 2011
Published: July 25, 2011
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).
