My Story Part 5: Life After Diagnosis

Continued from My Story Part 4...

It has been about 3 or 4 weeks since receiving my diagnosis and it has been up and down with each day. While my progress has been gonig well from being flat on my back immobile, to being pushed in a wheel chair, to walking with help, and now being able to move about on my own - my disease is far from cured. The things you see about me are fake. I look healthy and can walk by myself only because the dose of steroids i am taking is so high that it masks what is really going on in my body. In a perfect world i could just say on the steroids and eventually work back enough energy to enter back into my seemingly normal life. Unfortunately this isnt the case. Doctors wont leave me on this medication because it is so harmful with longterm use. I already have a weinging process planned (by my physician) to come off the prednisone and onto a low dose chemotherapy (Methotrexate) for atleast 2 years. All this to which she is unable to tell me if it will adequately control my symptoms, if stronger or other meds will be needed in conjuction, or what my pain level will be from day to day, or whether the ER will be a place i frequent every couple days, weeks or months.

In conjunction with the medical regiment set up by my Rheumatologist, i have consulted with doctors that rely on natural healing as well. I have cut out most foods that normally consist in a diet and replaced with with whole foods. I eat almost all raw fresh fruits and vegetables, very little cooked, and consume fresh squeezed vegetable and fruit juices. I also take upwards of 25 different natural herbal supplements daily, all in effort to help restore some sort of balance and health to my body that has taken such a severe beating over the past couple months. My effeorts are merely to help myself as possible. At this point my life revolves around when to take my nect pill, juice, meal, doctor, visit, or upcoming lab draw.

I've taken the time to write all this out- and while it may seem to portray a good picture of what its been like, i can promise it doesnt even begin to skim the surface of the pain and suffering it has brought not only on myself, but also my family. I want to make it clear that just because i feel up to helping get groceries once a week or driving myself to the DHS office - that my condition maybe not be visible to the naked eye all the time, but that it is a taxing and extremely hard thing to deal with - both physically and emotionally.

Graduation was one of the most exciting days for me, and passing my Nursing boards to get my license was as equally amazing. I did my part and took time and serious effort, not to mention lots of money - much of which i have in loans that will be out of defferement in 3 months, to get educated and do my part to help others. I love Nursing with a passion - All i could think about was getting out and working and having money to things and go places. Instead life took a different turn for me right now. I was insured through school and of course would have been through a job, but this disease didnt wait for that to happen.

So hear i am. A responsible, educated Nurse with unending medical bills from and unexpected disease that showed up overnight. If i thought i could make it through even a couple hours of a regular Nurses shift i would be there in a heartbeat. The truth is - i am lucky and happy if i wake up feeling like i have the energy to make it another day with this disease.

For all its worth im begging to help with my bills - certainly cant pay them and its just one more thing that tops my list of things to worry about each day. If and when my doctors and i find a medication regiment that works and i find the energy and regain the muscle capacity that i lost - you can bet you'll see my face at one of the local hospitals or doctors offices - doing what i love best - caring for other people.


So there you have it... thats my story in a nut shell, as written to accompany my medicaid application to help pay my medical bills. Now that you know my story i will get on with some of the more "funny" sides to disease, as well as some not so "funny" times. Hope you enjoy the blogs!