Confused Doctors Making Me Crazy

So I have three neurologists now and two think I need to have the small (greater than an inch) "tumor" on my right side taken out as well as one on my left side in my ear/brain/face area Goes around my ear and deeper and down my neck into my thyroid according to the February MRI). And the one who can't make up his mind is waiting for my EEG but they called to change it - good because the move is going to be hard enough in the next 10 days. I can't wait for my man to get home and help since it tires me so much. I dropped some stuff off today and need to go clean so I can decorate - no sense doing it without being clean.

Anyway, the past MRIs from February warrant surgery and the current ones are being mailed and the doc who does not get back to me cares less while the other two believe I should be getting it taken care of before i get worse pain, movement and thought process wise.

I was also called by my other two docs for appointments that are not currently scheduled as a result and am confused by that as well. My pneumonia has gone away mostly but I can tell there is still some in there since I was working hard today and it hurt my chest a lot - or it could be the fact I forgot my heart meds for the past four days and just started them again last night...UGH!!!! That was not a good feeling.

So all of these appointments and tests are insane and I have two appointments tomorrow. The radiologist said I have several tumors down my head, cervical, thoracic, and lumbar spine but no one seems to give me a clear answer. Looks like I will have to pay to get them since Medicare does not cover it and I have no other insurance since I can not afford it.

Anyway, I am trying to stay sane and not worry too much which is hard when everyone has a different opinion. Besides that and the move coming I am exhausted and trying my best to do it all while my man is traveling. Hopefully when he gets home it will be easier since the days are getting short till the move.

I cleaned out my closet and drawers to donate my clothes that are too small and figured if I get to that size I deserve to get new ones since medically it may take a while and I am not allowed to exercise too much and my hormones and other chemicals make it almost impossible for me to get back to a size four anytime soon. So far I have donated two bags of clothes and have one part of my closet and the front closet with coats and such.

Anyway, maybe I'll get some clarification tomorrow - all I know is it is definitely 100 percent genetic at this time. I wish I had some more support since my man is going to be worn weary by the time this is over not to mention myself. I am also filing a living will soon and the paper work to get the foundation official - not till September for the foundation since the will is more important. I have been have severe headaches near the tumors and should one cause a stroke or aneurysm I want to be covered not to mention if I have surgery my man and family will not have to argue over my wishes.

Other than that I am excited for the move to be over and enjoy the time with my man and to have on major thing off my plate so it seems less stressful. Fingers crossed for good appointments tomorrow...and some answers and a lil more pain management of some sort, I really don't care what just kill the pain till we figure out the final solution.

Till tomorrow...

Updates on the first three MRIs

So, as you know I have been having MRIs this past weekend and discovering new things about myself. Here is what they are looking for:

• Another picture of the tumor that was found six months ago and
• Any new tumors in my cervical and spinal cords (so far I have only had cervical and lumbar spines and return tomorrow for thoracic)
• Multiple sclerosis
• Evidence of seizures since I have been having some unexplained issues at night with sleep and problems controlling my body both awake and asleep.
• Genetic rationale for a small cavernous sinus that eventually leads to other genetic disorders.

So here is the feedback or I should say reaction so far. During my first MRI of my cervical spine the technologist and radiologist kept requesting where my last tumor was seen six months ago…it was seen in the brain but the cervical areas but occipital lobe and moving into other areas. She asked several times if I was sure and took twice as long, if not longer in this area, to determine what was going on and basically “told me that there seemed to be a masses or tumors involved in this area – NOT GOOD since it is a very hard area to operate in as well as indicative of cancer, additional brain tumors and other genetic disease. MS is not considered genetic and I have no family history of it to my knowledge. They did scan for MS and today’s person did indicate a nod when I said I don’t believe I have MS but likely a tumor. She was a bit odd and never told me how long my scans would last or where – they usually tell you which body part and how loud the noise it – it also helps when one has to itch or cough because if you do this during you can screw it all up and have to start over. I behave very well during these – surprise, surprise…lol! Any way, she sat with me for about 45 minutes after my exam, my exam was supposed to be half and hour and lasted one hour and fifteen minutes. Can you imagine going in a machine the size and look of a coffin thinking it would be a short amount of time and it lasting over double? I was quite mad as she said nothing to me about it lasting longer.

I have some side effects from the injections they give you to see the tumors better and other blood vessels and brainy things. It has not been fun to say the least and left me very tired.

She could not believe that I handle what I have been through so well and with little consistent support. She thought it was wonderful that my man and I would be moving in together and I said well I hope he still wants to once I get my reports back and she remarked that he had been this far she was sure he could handle more and obviously loved me for who I am and my great attitude. She thinks I am the perfect person to start a foundation. Me, I still have doubts but I know people need money to feed themselves, get medication, roofs and other life needs. These are things not covered by our small disability from social security and Medicare. Oh well, I guess when I get to the end of my career change book we will see but it will be this or another choice. I do think it will be this since I am already doing it without pay and love it more than when I was getting paid…besides eventually I will get paid and be able to afford my own medications.

Anyway, so far it seems I may have additional tumors in my upper spine and in my lower brain as well as some bone disease in my lower spine based on the conversations – now these are just beginning conversations and not full evaluations but not good news nonetheless.

Am I scared, yes, I think I could handle another brain surgery but a spinal surgery so close to so many nerves and my brain and paralysis – I am not so sure. But I refuse to get weak and will remain strong until I get some additional feedback. I am focusing right now on being pissed that they forgot to tell me there was a tumor in my brain six months ago and not because it was small and insignificant…heck even I could point it out ad when I did they ignored me…being angry and upset about that is easier than thinking about the possibilities of the others…

If you are a member fo my family and still supporting me, please let me know if I could have MS or if there is a history since my current recourses say NO. And like I said it is not 100 percent genetic but it is the first risk factor listed…I don’t think that is what it is…but I’m not a doc and what do I know besides I was right about the previous diagnosis’.

Tomorrow I have my fourth MRI and hopefully last for a while since the injections are giving me side effects I will not describe and a meeting with the doctor who plans to lock me up to observe me for a few days. I’ll find out more details about this tomorrow but it is basically a bunch (more than 25 – 50 ) electrodes stuck to my head while I am locked away from my friends and any TV – only docs and nurses for company…oh joy! I can’t sleep there and to test me is gonna be fun…they may also do some visual tests and others to monitor my brain waves …hey; at least I have a brain to test unlike some others I know! Haha! Ok, I have less than 6 hours of sleep and need to run…I’ll update you later tomorrow…let’s hope it does not take twice as long like the last three.

To clarify for those who are confused:

• Brain
• Cervical Spine
• Lumbar Spine
• Thoracic Spine (we will see if the previous cyst/tumor (density says it was just a couple of points away from a tumor) So anyway, we will see if the tumor was actually attached to the lungs or spine…fun!

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.