Lost Pets, Veils of Tears and Lost Smiles

...And now you know why...I'll tell you...

As of my last posting I was going for an MRI or my parotid glands since we already know I have yet another tumor in my parietal lobe located more closely to the middle of my brain adding complications from the other lobes due to cranial pressure. I also found out there were masses or signal issues in my cervical spine causing severe pain and likely many problems between the two. Obviously this upset me but I can deal with the prospect of brain surgery, not really spinal surgery since it is new but brain I have been through a couple of times. I had been through brain surgery for my pituitary and my mom's tumor almost in the same space...odd right. Anyway, I have been fairly scared as you can imagine.

Since then I have had a number of doctor appointments and looking for answers...to find none until I asked for another MRI of my parotid glands in my face since they had shown tumors since February...the doc failed to read the reports properly. So in February I had one tumor in my right parotid as well as the neck and brain ones. I was very ill the past couple of months with pneumonia (yes in the summer) and several bouts of cellulitis (inflammation of the cells caused by a bacterial or viral infection which can lead to cell death and the need for plastic surgery. Luckily I have not gone that far yet.

Oh I forgot I had an EEG where they failed to even look at my reports and still have not gotten back to me...go figure these docs bite the big one. But during this week I had several facial problems and numbness as well as throat and ear aches that were not infection related...what were they related to then?

Well on August 8^th, 2007 I had a detailed MRI of my parotid gland after a regular brain MRI the month before showed an increase in number…I had gone from one to three in my right side and none on my left. In the August MRI my right and left parotid glands have numerous tumors and lymph node enlargements. I saw the specialist today who told me to expect a call this weekend for an emergency fine needle aspiration of some pieces of the tumors and lymph nodes. The diagnosis is not finalized yet but it is highly likely that I have a number of cancers or autoimmune plus cancer diagnoses. Lymphomas, sarcomas, and other disease such as Sjogren’s disease, Sacardoisis (sp) are highly likely. It is probable that I will have surgery and chemo and radiation to rid my body of the diseases and additional MRIs to see how far it has spread since my lymph nodes are not able to be counted that are enlarged. They really can’t count them? That scares the crap out of me and right now all I can do is try and breath since eating and functioning is a little hard with my mind full of possibilities…the facial motor nerve runs straight through the area they would operate on and paralysis of my entire face could be an issue…All the diseases, even not related to cancer are just as bad or nearly as bad since they grow rapidly and shut down organs with a crash of your immune system and growths of tumors at extreme rates – so I am told.

I am way to damn young to deal with all of this and have been through too much as is to do anymore. I am tired and lately I have little support. It saddens me that most people have walked away as if I was a pet who died. Not to mention the bills and the fact the government insurance covers very little of my tests and treatments leaving me in debt that I will never get out of alone. Emotionally and physically I am exhausted and unable to deal with much more than functioning at a level of numbness. I can no longer deal with people calling and asking for money and those who are ignorant or who have ignored me for months yet were my close friends. Right now I could care less since I have so much to deal with for someone my age. Heck for someone any age. The fear I have is greater than any feeling I have ever felt. The greatest comfort I feel is from my man who tries to be brave and just let me be how I feel at the time. I feel sorry that I cannot be a normal, healthy girlfriend to someone who has done so much for me.

Well I just wanted to write since talking to everyone right now and telling people who probably careless is just something I do not have the energy. I need to focus on getting better and dealing with this thing. I need sleep which eludes me and nourishment which my body is rejecting and answers which have not yet come in a final form. All I can do now is hope for a better outcome and to muster the strength to make it through yet another medical disaster…why didn’t they do this in February? Why did they ignore the facts and make me even more sick…to those I may never have the answers but once I recover I plan on getting them or making them never ignore another “me” that walks through their door.

I keep asking why and looking for reasons. Probably not unlike any other person who is facing the same issues or even bad experiences like myself. I keep blaming it on something I must have done in life or not done…or maybe something I did in another life that followed me through to this one. I cannot imagine anything except the worst to deserve something like this. Each time I am able to deal and think my life is finally getting better I find out another problem and scary obstacle to face. Tears cover it as a veil and when in public a smile hides the pain and confusion that swims in my mind. I have grown my hair to hide my face or skin lesions and spinal swelling. It is kinda weird the one face I can hide behind in public may be lost in surgery…my smile may not be able to hide my fears and tears any longer if surgery is not done correctly and chemo and radiation rid me of the hair I use as a shield to protect me from pity and ignorance.

Anyway, for those of you who still follow, all finger crossing, prayers, meditations, whatever are welcome as right now I need all the positive energy one can offer to help make me well and to live the life I should be living at this point in my life. Additional updates will be posted as regularly as possible when exhaustion does not get the better of me…

Until next time…

PS - I will talk more about the disastrous EEG next time...I see the neurologist on the 6th I think and my other specialists throughout and am on cell alert with them.

Bills, Frustrations, Illness, and Soaps

So many of you will laugh that I joined a soap chat board since everyone laughs that we can watch the sames stories every year. Well this year Guiding Light is doing an amazing job on brain trauma and I feel as though I am looking in a mirror and watching my life. Dinah, the character had the same jobs and same life as me doing PR and TV stuff and living a decent life...and we both got sick young. In looking for something to do and to educate people on brain surgery and things that happen to us that we don't discuss I joined as soon as I saw Gina T's storyline. She is kicking butt and taking people places they would otherwise never go...I cry watching her everyday since I see my struggle in her character and her realism is scary.

I get a ton of support from the posters and they thank me for my educating them and sharing such a person experience. Today there was a post about Dinah's condition and money woes...after much support on my mini posts I posted this...which is true and all happened today just when I was trying to stay positive and put things together and not be so damn poor and a burden any more...

Please don't cry, I do enough for all of us. (A response to a post from an earlier person)

Ironically today and since this post is relevant and about Dinah's money issue...I got a rejection of 15k dollars of medical bills when I only had 3k (from the previous tumors) left and finally felt like I could breath. I was gonna buy a new pair of shoes and a shirt and pants that fit so I could go out to eat and feel like the old me. Deep breathe. I was a working class American and even more ironically did similar jobs as Dinah (literally in her character she and I were the same - beautiful smart successful women in business doing PR and Television production and more). I was making fairly good money and living well but I was too young at the age of 29 (diagnosis)to have a ton saved. I know Dinah's character is a lil older (mid-thirties as I am now 33) but we don't think about those things about saving money in case we get serious illnesses and have a false security that insurance will take care of us. And that we will never have and accident or illness that may cost us not only our physical lives but our lives outside our body - you know what I mean. I went from a nice neighborhood to a run down place, I have not had new shoes, clothes or anything for the past few years and could barely afford meds and food. Those were good days and still are because of this recent bill rejection and appeals were also declined since my disease is rare. The only difference between Dinah and I are the reasons we had surgery but it was the same area, same jobs and life, and now we both have lost them. I feel like the writers are copying me and putting GT and SFG in the same role. Except mine is real. Anyway, I am a lil further along and am frustrated as specialists now say they can not or will not try even though others have succeeded with surgery. And because of my bills.

Next post...moderators please don't shoot me... (word limit reached)

Part two and I'll shut up...

Anyway, good news but more bills...just to make the point of the s/l...I have an alternative med doc checking me out tomorrow at 11 ET to fix my head so I have to tape the show. I hope they don't show her as I can't stand a day without my reflection staring back. Let's hope this doc helps. While he has agreed to reduce his fees I now have to pay cash up front and make myself a strong candidate for him to take the risk of me on due to the malpractice laws in this country...hopefully they address those as well.

So keep your fingers crossed I can get fixed so I can come off Social Security at the ripe old age of 33 and go back to work, should someone have me as I have been declined more than 55 jobs since January due to the background checks showing no work due to illness. I now need to find another career...I think I may take my skills and eventually start a foundation for financial aid to those with serious chronic medical conditions so they can have food, meds, and a roof and buy shoes more than once every few years.

So see, Dinah's story is real...you are reading her and you didn't even know it.

Moderators, I hope you keep this one post just to prove the point and I promise not to rant again about the impact TBI has on a patient who loses money, life and health. And themselves. I promise to behave in the future but this was so close to the current s/l and pros and cons I could not help it...slap on the wrist taken.

I get very little help and people forget that not only do Inot have my health but not my life or the life I had and who I was...all tat has changed including who I am.

I hope you read this and understand what has happened in my life and continues to change as more is discovered and things get more confusing with my health and my life. DO NOT judge me I ask nothing from anyone I just ask for you to think about your life and how you can change so this does not happen to you and I do not ask for help just for some understanding if life is not perfect for me everyday...

I recently moved in with my man cuz I luv him but also to help us breathe but this recent bill has me sick to my stomach and 15k more without my last hospital stay added I am terrified that my life will forever be changed and my old life lost forever. I'm scared...thank you to the soap peeps who support my plight and allow me to have input into the character of Dinah...you should just watch her once and it will change your life...she has an Emmy in my book...