Ok so this is my VERY 1st post!!! It has taken much more than I expected to get this and my FaceBook page with the same name Single Moms with Disabilities up and running! (https://www.facebook.com/SingleMomsWithDisablilties)
Before getting started I would like to note that when I use the word Disability I am using it in a broad term to refer to an illness, disorder, or any other health issue you may be facing.
I am currently working on finding reliable information and websites on how to find the best doctor for you. I wanted to get both sites up and running so I published before I had finished with my research. As I am home all day I fight my meds to stay wake and I don’t always win. In fact I rarely win. So getting what I want for all of you is taking a bit longer than I anticipated. But I am sure that you will understand without much explanation and that is on of the reasons why I created this page.
Whether you were born with your disability or like myself it came to be later in life the one thing we all find the most challenging is finding the right doctor that suits you. If you have read my Bio on FB then you already know how difficult it was for me dealing with doctors when my disability began. For the most part they are pretty similar. I left some things out here that are in my Bio (mainly about my personal life) and left some things out there that are in here.
Today I want to give you my list of current diagnosis and what I had to go thru to get them. Getting some of these did not come easily but even though I faced a lot of criticism I didn’t give up. I want all of you to know my story so you know that I do understand. I have been there, done that.
I couldn’t tell you the exact date of my first set of diagnosis but they were during my teen years. My biological father had a plethora of mental illnesses and at least 2 doctors if not more agreed that I had all the same illnesses as well. Including but not limited to Bi Polar, Intermittent Explosive Disorder (IED), Impulse Control Disorder (ICD), Panic Attacks, General Anxiety Disorder (GAD), and Major Depressive Disorder to name a few. It is now believed that the Bi Polar, ICD and IED diagnosis were incorrect. At the age of 15 I began to work and shortly before my 17th birthday my psychiatrist sat my mom and I down to explain to us that after working with me for a year he had come to a grim conclusion. It was his belief that I would never be a full functioning adult. That I would never be able to take care of my own finances responsibly, that all my disorders would effect my ability to get and hold down a job. He suggested that I quit my job because I would need to be on Social Security for the rest of my life and that my mom should get a court order making me incompetent thus being able to control my money and where I live among other things for the rest of my life.
I didn’t quit my job nor did I apply for SSD when I turned 18. I did try to apply at 19 when I was pregnant with my first child (Sierra) by advise of my Primary Care Physician (PCP). I was denied as most people are although I didn’t know that back then and moved on. I didn’t work much the first 4 years of my daughters life, from the age of 19-24. I did take on waitress jobs when my kids father and I needed extra money but never for more than a few months at a time. This was not due to all the metal disorders I was diagnosed with but because I simply didn’t have to and was lucky to have the luxury of being a stay at home mom. When I was 24 my kids father and I split up and by this time I had given birth to my second child, my son Logan.
Rewinding back to 2002 just weeks after the birth of Sierra I found out I had Kidney Stones (KS). I have continued to battle with this for the last 10yrs. I have passes at least 20 stones if not more and currently have 3.
In early 2007 I was diagnosed with Bursitis in my hips. They would hurt so bad that I would wake up in the morning and literally punch my hips to try and get them into place. I did this out of pure frustration and it is not the solution, you can trust me on that. I ended up going thru Physical Therapy (PT) and it help immensely but my insurance like most only allow for so many visits. Once my time was up my new found relief did not last for long. After 3 wks of not going to PT the pain resumed full force. The reality is that even if the insurance would have let me continue for the rest of my life what single mom has the ability to do so?
In 2008 I blew my back out and was unable to walk for a week. I sought out treatment from a chiropractor and was able to walk again and resumed work after a week I did go to see my PCP and they did prescribe some muscle relaxers and mild pain relievers...no narcotics though. After Sierra was born and I found out about the KS's I began to have some serious back spasms that would get me “stuck” a lot. I never sought medical treatment for it and that may have been a contributing factor in where I am today as well as the fact that I didn’t seek out a specialist in 2008. I’m pretty sure now though that it really wouldn’t have mattered if I had seen a specialist way back then. My current doctors were pretty hesitant to anything in 2010 (my current problems) and I’m sure there would have been nothing they could have done other than wait and see. And I know how I am so not knowing exactly what was wrong and the possibility of what was to come was probably best.
After experiencing the blow out in 2008 I was VERY careful not to do anything that could cause it to happen again but my efforts proved to be fruitless. Almost exactly 2yrs later ...23months to be exact...I was at work on a Friday (at a call center) when about 2hrs into my day I was in excruciating pain and the spasms were non stop. The details of what happened the rest of the weekend can be found in my bio on FB but the details needn’t be shared here. They are a bit irrelevant. By Sunday I was unable to walk or even move. I went to see a new chiropractor (my dads) on Monday as the last one I had seen was to far away. I knew there was no way I could make the drive. After a week of treating me he told me that he feared the was something much more wrong than he could fix and ordered an MRI. The results came back that I had 2 herniated discs at L4-L5 and L5-S1. He told me that I needed to see either an orthopedic surgeon or a neuro but preferably the later. As I did not have insurance at the time it proved difficult to find a neuro who would agree to see me. When I finally found one
I couldn’t get in for 6wks. I made the appt but later canceled when I found an orthopedic who could get me in the following week. Unfortunately, he was a waste of my time as he made allegations that I was a doctor hopper, drug seeker and even that most of it was all in my head and I needed mental help.
The even more unfortunate thing was that he didn’t allege these things at the first visit but after he told me to continue to see my chiropractor and ended up causing more damage. First, the radiologist didn’t report that my disc was a hair away (laymens terms) from the nerve root of my left sciatica. Then, the orthopedic didn’t see it himself and sending me back to the chiropractor for 2wks slipped that disc over and pinched the nerve creating an unbearable pain that made its way all the way to the bottom of my foot and eventually causing 75% loss of feeling in my foot and lack of movement in my toes.
Luckily, I was able to get in to that neuro surgeon even though it was nearly 2 months after the onset of pain. Dr. G was a God send as I have told him many times. As he is located at a teaching hospital, the resident came into the room first and spent nearly an hour assessing my situation. When he completed the exam he we to consult with Dr. G. I will never forget the moment I met Dr. G that day. He actually apologized to me for the conduct of my previous doctor. He told me he was sorry that I had been left in this condition for nearly 2months. Before he had even met me he had called another doctor, the head of the pain management clinic, to see me that day. Dr. G informed me that normally it is at least a 6 week wait to see this doctor but he was owed a favor and used it to get me in immediately.
It has now been 2yrs since the initial onset of my symptoms that changed my life forever. Dr. G diagnosed me with scoliosis (that I had been aware of since a very young age), spinal stenosis, degenerative disc disease, 4 herniated discs (not 2) at my L4-L5, L5-S1 and C3-C4, C4-C5, 2 pinched nerves, one to my left leg (which I have permanent nerve damage) and my right arm. I have had one surgery so far that was supposed to go in and shave my disc down to get it away from the nerve but it had calcified so it had to be removed. We are currently looking into a 2nd surgery for my upper disc that is pinching the nerve to my arm as well as yet a 3rd to implant a Spinal Stimulator to relieve my nerve pain.
Finding the right doctor for you can be challenging and frustrating. It is easier to give up sometimes than to continue to search. But you cant give up, you have children to take care of and MUST get the treatment you NEED and can not accept NO for answer. Not only did I have problems with that orthopedic but with a neurologist he referred me to as well. He “wanted” me to get an EMG done even though he knew “there would be no abnormalities”. When I went to get the EMG done the neurologist was VERY disrespectful and the ONLY medical records he pulled were my psych records from my teens. He told my mom who accompanied me to the appt that he would do the test but he already knew the results and told her that it was his opinion that it was all in my head and I need psychiatric help! How I would like to shove my current medical records in their faces! But I cant because they refuse to see me so if I mailed it or dropped it off at their offices I'm sure it would end up in the recycle!
And the saddest part is that my problems with doctors does not end there. The family doctor I had at the time was not helpful either. He refused to give me any pain medication that worked and worse than that he put me on a medication called Neurotin or AKA Gabapentin. The side effects of this medication can be very detrimental to your health if you do not get off of the medication as soon as these begin to occur. I did not know this until later of course. I am not a doctor nor have I ever worked in the medical field. After being feed up with this Dr making me feel like a second class citizen I changed PCP's. Thank God I did. Not only was the Neurotin not helping my pain but it was making me hallucinate. Instead of taking me off of it he upped my dose not once but twice! If I had not been taken of that medication when I was I could have suffered permanent brain damage, possibly resulting in having hallucinations for the duration of my life!
If you do not feel you are being treated with dignity and respect, do not feel your doctor is listening to you or if you feel he or she is being dismissive of your concerns you need to contact you insurance provider immediately to get a list of other participating doctors in your area. Go with your gut. You know your body better than anyone and if something doesn’t seem right, most likely its not.
No comments:
Post a Comment