It's been a while...

It's been a while since the last time I wrote but life has taken on many changes and twists and was honestly moving at warp speed.

Ok, some good news first, I am moving in with my man and it will be great! It will help relieve me of a lot of stress and be nice to have someone around more often when I am really sick. Speaking of which I have had pneumonia for about the last two and a half to three weeks...I still have it a bit but hopefully it has died down enough to get to the bad news. Or however you wanna take it, I honestly am so used to it I just want them to figure it out and fix it then leave me to live a wonderful life. But knowing doctors, who knows what is true since I am now on 40+ docs in the past three and a half years.

Oh which made me forget, the National Institute of Health said yes and then they emailed me a week later to say since it was another disorder they would not take me since they only would have dealt with me if it was a recurrent Cushing's episode...which I do have every so often but that does not count. RUDE, to get someone’s hope up for a cure and a free one at that and then crush them by taking it away.

So that leads me to the latest. I saw a neurologist since my pain levels keep skyrocketing and we can not figure it out. Beginning tomorrow I have four MRIs and a video EEG that will last 7 - 10 days. I find out more details on that on Monday but since i have had panic attacks and seizures (they think) in my sleep I have to go in a room for several days without contact other than the docs and be monitored for brain wave activity...why you ask? Well it appears my last MRI to check my head for a recurrent tumor showed a pretty large spot (tumor) and I was never told by the ordering physician. It explains a lot about my bodies reactions to things and sensory problems as well as panic and seizure episodes. I don't really have panic attacks it is more like a lack of breathing and heart beating irregularities that are seen to have no cause like most panic attacks. And they often happen at night so the cause is really strange. I also have extreme pressure in my head from diabetes insipidus and the fact that the MRI showed I have too small a cavernous sinus which is genetic and it is likely y tumor and the other problems are as well. So this was all news from a neurologist and if the tumor can't be fixed or is fixed and does not relieve symptoms I have to be checked by a specialist for Multiple Sclerosis. That has me a bit freaked but so does facing another brain surgery as this time it would not be through the nose...it would be a full craniotomy based on where the tumor is located. This new MRI will determine where it is now since it could have traveled since the last one causing an increase of problems since six months ago.

Anyway, the MRIs cover my brain, obviously, and my cervical spine since there is a lot of water pressure or spinal fluid build-up causing a lot of problems. You should see this before it gets edited by myself and spell check. My sensory problems make typing a lil harder than before. And taste is horrible…I had a cheese Danish the other day and it tasted like pepper…nasty! The other two MRIs are for my thoracic spine and area and the last is for my lumbar where there was bone deterioration and a cyst in the spine and hip area causing pain – or so they thought so we don’t know what is going on for the moment but it is complicated and pointing to another major brain surgery and possibly more.

Finally, I was looking for jobs but people seem to hate people with disabilities in their background and I have decided to make a career change. I am currently exploring a few options and will let you know but this feels good. I don’t want the stressful life I had before and the backstabbing and all the things I did to make others happy. I just wish the people in my life would be more supportive. My man is the most supportive and thinks it is great however every time I try to discuss it with others in my life they blow it off and are not supportive. A few friends with disease are willing to help and I may even get free work from a nationally known career change expert…it’s funny how strangers are more supportive of my projects than those who know what I have been through first hand. Having had such serious illnesses at such a young age has lead me to learn that even family and friends may not always bee there even if blood is involved…lol, in more than one way.

Regardless, I plan to beat the next surgeries and treatments and lead a life I always wanted…and I can not thank enough the man who has just been there even for the times I can’t remember. I look forward to giving him as much as he has given me and doing all the things we talk about doing and dream about as well go through the hard times together. I don’t think most marriages would survive this and I know most of my relationships with others have not. I wish things could have been different but I can not control the thoughts and actions of those who left or stay but are not supportive, I can only control my own determination to get better and lead a life helping others after this experience and making my dreams come true regardless of the obstacles that face me. I just wish my family and friends would have been there to share the happiness that is to come after the surgeries and treatments are over; and they will be over if I have any control over it…heck I never asked to have tumors or to be sick, especially at this age and as complicated as they are. Hopefully people will realize that this new desire for helping others is something that is going to be a success and support me in the future.

Anyway, I plan to conquer all the tumors and diseases life throws at me and help those who are in the same situation do the same. Which reminds me a new website will be designed describing my new endeavor in the future as well as brochures and information…SICKO, the movie, only reinforces the need for my organization since politics moves too slowly to make a difference and will not cover all the issues chronically ill people face.

Also, I do realize others have had their own personal health and emotional crisis’ lately but I have been sick for a long time. My plans for the future have nothing to do with crisis’ that are happening now and I hope they will change their minds and be supportive by giving a little time and support. I am helping strangers and they plan to help me with my future plans I only wish those around me will rally too! I try to be there for my family and friends no matter the issues despite my illness and it’s limitations for the moment. It is my hope things can be better in the future and we can better support everyone involved in their issues and helping others beat diseases and illness. This new future is not about just helping me but people everywhere and I have lists of patients and contacts that need to be reached out to for support and to give support too! This new program and career path is going to be a success beyond my wildest dreams with a lil’ help from my friends. People have said I don’t work, but little do they know I have been trying but as soon as people see I was disabled they close the door, more than 60 interviews since March so I decided to make my own path! A path that will be successful emotionally and financially as it builds from the ground up.

Oh, and to my brother, I am glad we have worked through our differences and we can be friends again and possibly I can have him and his future fiancé as supporters of my change. So, stay tuned for more updates on me and my medical odyssey and those of my new career path (still slightly shaky but definitely set on helping others). I wish you all a happy weekend and updates will be posted on my medical test on Monday.

NOTE: Once again if you have an organization that would like to be posted as a resource for others please send them my way…any services will be reviewed and approved but if you are truly committed to helping others you won’t have a problem.