So I took a little break – again – and I know I said I wasn’t going to do that but we have had a lot of changes going on in our home over the last few months.
First off on July 22nd I had a lumbar puncture done. It’s also known as a spinal tap, they are testing for a number of things but most of all I wanted to be tested for a Pseudotumor cerebri (also known as idiopathic intracranial hypertension) It’s where there is too much pressure inside your skull from a build up of spinal fluid. And I also wanted to be tested for MS. What is MS? Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. You can live with it, with the help of medication, and with dedication from yourself, your support system and your medical staff you can live a full and happy life.
I have 90% of the symptoms for MS and it would be validating to be told that I was right. That I finally stood up for myself and I was right! On the MRI I had 2 years ago the Rad told me I would ask for the tests for MS, and I let it go when my Dr disagreed. But I only have about 70% of the symptoms at that time. Now, I am much worse and I feel that I need to be taken seriously. And when I expressed my feelings she seemed hurt that I didn’t come to her. Like I was afraid, and I realized that I wasn’t giving her a fair chance.
I have had doctors in the past who were, lets say, MEAN. And they would almost place blame on me for my migraines, my high blood pressure, all of it – it was all my fault and they were almost punishing me for it – yet at the same time when I told them that my menstruation time was killing me, that my migraines felt like death warmed up and that I had no idea how they wanted me to go on living like this being told that I was “healthy” – I was labeled a drug seeker or someone who over dramatized her pain levels.
Back in 2004 when I expressed to my doctor at that time that I was having abdominal pain after eating in an area that was so bad I would be doubled over – and I pointed to where it hurt – she said it was impossible because there was nothing there to cause pain…..are you kidding me right now. I am telling you I hurt and you are calling me a liar, to my face. I have been treated this way my whole life and I finally have a neurologist and a primary care who believe me.
I am not someone who goes around liking the feeling that I am ill. I don’t like to think that I have this illness or that illness – but when they cannot tell you whats wrong, and yet you KNOW there is – it makes you a little crazy some times. I live in constant pain, I have heart palpitations, my muscles are stiff and sore – I have numbness and memory issues – I trip and fall over air – and did I mention I am only 33 years old. and I have been this way for years. I would have to say well over 10 years at this point.
I cry on my drive home sometimes, I even cry on my way to work too – I have a 45-60 min drive to work and so I have some time. BUT – that will all be changing come January 2017 – more information to come on that later. We will have a BIG change in our life soon that involves a location change and I cannot wait!
**September was full of Dr visits and more tests. Turns out that the Lumbar puncture showed that I do not have the bands that they look for when diagnosing MS. But I did have the restrictive bands used for diagnosing a rheumatoid condition. So something like Lupus, sjogren’s syndrome, RA or many other things like that. It is still an autoimmune disease like MS is, but a different kind. Lupus does run in the family. I had an MRI of my c-spine recently and awaiting blood work for the rheumatoid stuff now. Then it’s off to see that doctor, early Nov its off to see my well women doctor for a well women check up that I have not had in 3 years. We get to talk about taking out the nexplanon implant and what to do next.
When my Dr was reading the results and it wasn’t MS, I was a little shaken like well now what do we do, I have lost all my braveness, all my fight is gone. But then she kept reading and she got to the part about lupus, and wouldn’t you know they are very similar to that of lupus and I match even better with those! So now I have a new obsession – ME! I started to cry and she told me – “you were right.” Through my teats I managed to say it – “I knew it, I knew there was something wrong! It’s still an autoimmune disease, and I was right!” I had a good cry in her office and even she got a little emotional. Its been a good walk her and I and I am going to further walk down this path with her. Oh she also wants me to get a breast reduction, so I get to look forward to that too, yippy!
well, my dear readers – I will give you an update on my condition when I can, but for now leave you with my regular sign off:
Peace, Love and Boxer Butts!
PS if you would like to I highly recommend that you check out Won’t stop Running – by A great Big World He wrote that song after being diagnosed with MS and it has become a bit of my own personal anthem.