Each individual affected by spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration and empowerment. We’d love your story as well! Send it to us at Programs@spondylitis.org
Friday, September 14, 2018
All of your stories are inspirational in their own way. Here is an abbreviated version of my story. I hope that my story will help educate and inspire someone.
My name is Cindy and I will be 66 years old next month. I am a Caucasian female and I have end stage secondary, Progressive Neuro Behcet's Disease: a very rare disease whose gene is very close to that of Spondylitis. It's okay if you have never heard of Behcet's, most doctors haven't either. In addition, I have three other genetic diseases. Alpha One Antitriptisin, Hyperhomocystienemia, and both genes for Hereditary Hemochromatosis, but not the disease itself. I have Stage 3 kidney failure. (I am just one tent short of being a medical freak show.)
I have had two pulmonary embolisms that formed in the lungs, NOT an extremity. I just found out I have Pulmonary Hypertension - it was diagnosed two years ago, but I was never told about it or treated for it. I have Anemia of Chronic Disease and I am dependent on blood transfusions and/or Iron Infusions to keep my hemoglobin up, in order to keep me alive. My spine is a "Junk Yard" of problems and pain. From top to bottom, the Odontoid Process has severe arthritis, two anterior bone spurs and a bulging disc in my neck with more arthritis. I have Spondylitis in my lower back, a visible scoliosis curve, "invisible arthritis," that is now very visible and painful, in the sacral-facet joints.
In June 2015, I had a ground level fall; the hip x-rays showed NO broken bones. Months later, a CT scan showed there were four broken pelvic bones. I had been walking on a shattered pelvis, with no surgery or even bed rest.
In 2018, after three years of severe and continued pain, I demanded that my doctor do more x-rays. It turns out that one pelvic bone did not heal correctly, and I had developed other problems in the pelvis.
I live in Central California. The doctors here are scared to prescribe any Opioids. I have been a "stable pain patient" with one doctor since before 2011, now on only 5mg Oxycodone, which isn't close to the "90mg morphine equivalent" DEA suggests as the maximum daily dose. It is quick acting, short lasting. The DEA website says it last 3 1/2 hours and I am allowed one every 6 hours.
I switched doctors and I am being sent to a pain management doctor. If that doctor doesn't control my pain, I quit. I am in agony and have been, especially since the broken pelvis on top of everything I was already dealing with. I don't sleep, I can't sit in a car to go anywhere, it causes pain. I became a shut in, after I broke my pelvis. There are lies in my medical files, that I can take care of my life duties or something like that, with the pain meds I am on. That is a lie and it keeps me from receiving In-home care I need.
I am proud to be a participant in multiple, on-going studies, to try and help researchers and scientists find answers to some of these diseases. I urge everyone to enroll in ongoing studies that help scientists. (They want your medical history, medications lists, etc.)
I am planning to start palliative care. I am fighting a battle I can’t win. There is nothing more doctors can or will do for me. I have begun preparing for my own end of life care and after death arrangements. It is just what I feel is right for me and my niece. She will be left to deal with everything. To me, leaving things undone is thoughtless and selfish. Plus, what I have seen others go through, because no one knew HOW to discuss it. When I was finally diagnosed with Neuro Behcet's and researched it, I thought of what my niece might be faced with.
I did a free will through the California Bar Association, Power of Attorney and Medical Advocate site. This was short and to the point. The second is through an online service called, "Five Wishes." It is a much kinder, gentler version of "pull the plug or don't pull the plug” than the version of the medical advocate paper I got from the hospital. Of all the resources I looked at, "Five Wishes" was by far the best for "How to" start a conversation about final wishes. It was only $5.00. It has family packs, in English and Spanish and suggestions about how to start a conversation with a loved one, and find out end of life wishes. Sometimes it is just, "What do you want your end of life to be like? I would like to respect and honor your wishes, but I don't know what they are."
In addition, I have a DNR, now called P.O.L.S.T., in California. (Physicians Orders for Life Sustaining Treatment). I made sure everything is legal in Florida and California. (My niece has the right to move me to Florida where she lives. So all my documents had to be legal in both states. I don't know if many people think of that.
I also assigned my niece as the Power of Attorney. What surprised me more - is most people I have spoken to, think in terms of being alive - or dead! They are shocked to their socks, when I ask, "What happens, if you should have a massive stroke, sitting in a convalescent home, for a long time?" Who makes the choices for you then, if you can't?" Your busy doctor is not going to explain or update ten different family members if you are in Intensive Care! So, you need to pick one now, while you can."
I also pre-registered with http://medcure.org/ to be a Whole Body Donor. Since I have the Neuro Behcet’s, 3 genetic diseases and more, I hope that as a medical cadaver, I will further research and education toward everything I have, including spondylitis. The scientists need diseased tissue to understand the way it affects all the body parts to help them find medication or perhaps the sweetest word in any language - CURE.
I hope my story might uplift and inspire some of you to participate in medical studies and consider whole body donation. There are many medical schools that accept whole body donation. They do tell you to have a "back up plan," if for some reason they decline to accept. At first, my niece was grossed out, by someone playing "slice and dice" with Aunt Cindy, but I explained how much could be found out about the diseases I have, that our family has suffered. My hope is that someday, other families don't have to suffer like ours has. She just needed time to accept that it is "the right thing" to do. Now, she is proud of me for choosing to donate my body. I know "whole body donation" might be shocking or uncomfortable for some, others however may be enthused about it.
Now is also the time to gather personal information for the obituary, not when you are trying to mourn a loss and only have a day or two to get the info to the mortuary. With family arriving, choosing clothes for your loved one to wear, and all the other stressors, that is not the time to argue over what school, years in the military, or any other of the many things you will need to know. I wrote my own obituary and also bought a beautiful White Ginger Jar for my cremains for only $7.99, plus $9.99 for shipping. I don't want my niece to spend $800.00 at a crematorium. In California, any container that can be sealed can be used for human cremains. I was raised with a lot of responsibility and I have never been pretentious. A simple White Ginger Jar, for $7.99, suits me just fine. I did ask my NIECE first, if she liked it, before I bought it. She didn't know why I was buying it, but she did really like it.
I feel all I have done toward preparing for my own end of life care and after death arrangements is truly the kindest, most loving thing possible I could do for my niece. Seeing to everything I can now will ease her stress at a time when I can no longer help her. I think that is love. I hope with all of this we can help find a way to spark conversations among members, their families, friends and even you and your staff.
I just hope I can inspire some souls to keep going, to not give up hope. To not be afraid of what's next, whether it is another disease, medication, or even death. Hopefully there will be important conversations about symptoms, diseases, and also death and dying. Having family discussions about what they want in the end, and choosing a medical advocate are important. Everyone seems to be afraid of those topics. I have seen adult children cry, because they don't know if the parent wants life support, or to be buried or cremated. That is much harder than any discussion about end of life wishes and death and dying.
Do I want to die? No. We don't get a choice though. None of us get out of here alive. We all die someday. Hopefully, not today. I stay upbeat, because I keep reinventing myself. I keep finding ways to contribute and keep finding different facets of myself, currently as a lab rat. The last one will be as a whole body donor.
PS: My picture is of "Ashes, the wonder cat." After passing out in the bathroom, I woke up to worried kitty kisses on my face. Here he is demonstrating how I feel... "Some days you just can't get out of bed."
Links to resources mentioned:
Five Wishes: https://fivewishes.org/shop/order/product/five-wishes
California Bar Association free printable Will: http://www.calbar.ca.gov/Portals/0/documents/forms/2014_CAStatutoryWillForm_ab_1986_bill_20100715.pdf. (The California Bar Assoc., has a lot of easy to understand information. For Estate Planning, Living Wills and much more. It is for simple, small estates. I don't know if all States offer free Will forms. Each State has/may have different laws so it is important to ensure that the type or format of a Will is legal in the State the person making it lives in.)
Other posts by Cindy
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