the tragic life of mine...

here's the deal and I'll keep it quick.
my condition is getting far worse. I have followed my doctor's orders to ween myself off of avonex to make it safe for me to go on tysabri.
well, it was supposed to be one month for this and at this point it has been nearly two. This is all thanks to my insurance company. Not only have they given me the ol' runaround but also my neurologist's office.

I'm frustrated and so are the staff at the neurology clinc, my family and friends.

I am nearly to a point that I will be a total invalid.

ty for reading.

hello from a sleepy state

Hi there. Today I am very very tired. I cannot seem to wake up and I want to go back to sleep but I can't because I have this 20 page form to fill out and return to the SSA by the 22nd. Today is the 18th. Wow, they are pressing their luck here.
So far, it looks very promising though. I have no doubt that I will complete this task.
That is what I'll be working on today. I am so excited that my Dad has joined face book. I will be able to give him updates and we will be able to exchange messages via FB.

Hopefully soon I will have a Vlog I just need to locate the cable that connects my video camera to my laptop/pc.
For the time being, I have this photo of me going into the MRI tube.
At the bottom of my front page you will see my most concerning MRI scan.

February 15, 2010

Hello all, I am letting you know that things are going well. I don't have any word yet from my neurologist regarding when I will start on the new therapy.
It is all tangled up in the red tape of my insurance company and also the strict guidelines they have for receiving Tysabri.
Keep in mind that Tysabri must be delivered intraveniously, only administered by a nurse who has been fully trained for this medication specifically. They are referred to as the "Touch" certified nurses. I first to read and agree to then sign the application to receive Tysabri.
This whole process has been a little overwhelming but I understand why they have these precautions.
For those who do not know, his is the most agressive MS therapy at this point. Unfortunately some of the patients have actually died from this.
Some of thse close to me are sacared of this and think that I should not go this route. I am at the point that I am sick of this dramatic progression, I must stop it if at all possible.
If it's my time then so be it. The one good side to this is that I will be at the hospital so if anything goes wrong I will be in capable hands.

an introduction..to my blog timeline

All right here's the deal, I have a blog on FB and I am not able to scroll the page to the right using that application. I love this application because I can see the entire line as I type and I don't have this wierd page reload when I hit the enter key.

I will keep this blog as my first blog and I can vent all I want and only share what I choose on FB.

That is my explaination as to why the first posts were all on one day and also out of order....(I was editing and choosing which ones I want)

01.28.09

this is so frustrating to try to type, I keep hitting the mouse pad on my laptop and the entire page will be lost.

speaking of LOST yay this Tuesday.

well back to what I tried to say b4, I am up later than I wanted to be I think because I am making sure all of my information is all together and to make sure that I am ready for my SSA inteview tomrrow/today. I know that it's normal to be denied the first time so this is my second time and I'm hoping that I get approved this time. the sad thing is tht I waited more than 60 days to refile so technically they might see this as a first attempt. Well, I have all the paperwork submitted and I also meet a lot more of the critera this time.

The other Issue that I have RN is that I am not on my Avonex since I have to let it filter out of my systm. The pharmasutical company Biogen has informed me to do this as well as my doctors. I will have less control of my symptoms now as it begins to overtake my CNS.

If I were doing this and still working I think I would have another extreme exacerbation at work from the stress and that does not do me any good. I am luvky enough to be employed at the resort and I am a living testament to the fact that if you do what is asked of you and abide by their rules then you will be rewarded with their assistance when it comes your turn.

I just say thanx to all the people I work with and hope to be of some service in the near future. I hope that I will be able to work at the resort real soon but I am still not sure of what capacity I would be of use. This is the $64,000.00 question, what can I bring to the table that noone else can? I can wager a guess, I am compassionate and understanding and that will get me nowhere in this field. I am taking this to heart and hoping maybe falsely that something will open up for me. I won't be holding my breath though.

Well, thanx 4 reading this and I hope that you've enjoyed this. Stay tuned for further info.

do you take a 'time out'?

I ask because I have found with our my TV and no I'm not able to enjoy too many other physical activities. :(
I have accepted this time to simply just take a 'time out' and think about all of the things that my very hectic work life just wouldn't make room for.
I realize that I have done this all of my life from studing for tests back in my school days, learning lines in a play, training for a job, working of course , paying bills, having a social life caring for others, family activities and well I'm certain you all can relate and some of you are thinking of your own lives as you sigh with an eye roll in agreement and relief.
I am asking to know, am I the only person who has this issue in recentrting yourself? Some may refer to it as meditation or daydreaming but whatever term you use I think it is overlooked.
I have been just relaxing and letting my trail off in its own direction and all I can say is wow to the revelations I have just pushed off for "important things"

These ideas and concepts that I've had are at first elementary like what makes me laugh or what makes me cry? After thinking on this and other things I do examine at a deeper and more meaningful level. Maybe this is what monks have been doing for years and years.

As smple as it sounds it has definately given me a sort of recharge not only with my self but also my outward look at others. I am still rooted deply in my old habits of trying to find answers through any other outlet except me. I have all of my own answers and to me this explains why I tend to get upset with people who impose their ideas unsolicited on me. As cruel as it may be I prefer to try to make a go of it on my own. Just like a baby bird taking its first flight there are no training wheels and no parachutes just the confidence that it will know what to do. I think that I have been strangled by other peoples insecurities in me which is actually hurtful and makes me ask what have I done to give the impression that I need or want help.

Just imagine if we lived in a world where noone could think for themselves or make mistakes and always ran to someone for their next step and people that are like that and cultivated in such a way are living up to the victem mentality. I am not a victem simply because I may take a different road than others I am still forging ahead and that's what matters.

02.01.10

Well here I am in a Brave New World. Hopefully my ending won't be as sad as Huxley's book.

Definately a pageturner just the same. So I am sitting before my laptop and wondering what activity should I try tomrrow?

It's truly sad that I cannot seem to wake before noon and even further still I am so fatigued that I do not have the energy to get dressed and out the door before 5. So you see this is my dilema. I did let the Social Security Administration know about my extreme fatigue as well as other issues. But wait, I think I'm getting ahead of myself here. So, earlier this week, on the 28th I had this phone interview with the SSA going over my claim for disability. I made sure to mention all of the points that I think are important for filing disability. I let him know that I am not able to work and have had deminishing health since at least 2003. I understand that since I was making a sustainable income that I don't qualify to have the payments/status retroactive. This is fair to me, it would be nice but I understand that if every nickle and dimer took this approach we'd all be in the poorhouse. Well through my conversation with him I was slure to mention how my years of hiking, biking, rollerblading and even working out are over. It is sad and depressing to me because these are the things that I would look forward to enjoying on days off. Now I am excited about if case nuber 7 has the half a million dollars in it. I guess a psychologist would determine that I'm depressed and maybe that's true but as I mentioned yesterday, I need time to simply zone out and meditate. Isn't that what drugs like Xanex do for people? I think it's just being able to reach that state that's the hardest. It's my personal opinion that mary J should be leagalized and classified as an antidepressant but oviously the decision makers got too baked themselves and have forgotten how easy it makes things.

For now I will rely on my prescribed Celexxa and hopefully relax and gain a nonchelonce about missing out on life. This post was not meant to be depressing yet somehow it is. If you decide to read A Brave New World, I emplore you to skip the final pages.

02.04.10

Tomrrow is my much anticipated Neurologist appointment. I know what he will say though. New leisons and my MS is progressing the issue that a lot of friends and family have are sentiments of anger. Well to those concerned for my well being I have this to say, your voiced concerns have stressed me out, I understand what is going on and I accept it. Support me in my decisions and just be there for mIe. I want everyone to give me space and trust me and please trust me that I know I have doctors and professionals who I trust.

This said, I am doing well, considering. I am in a downturn health wise because I am off of my Avonex. It was helping me as was the copaxone at one time. RN I am sort of in limbo as far as life goes. I sleep then maybe wake up for water then sleep more and I may force mself up to take meds and eat then I sleep a little more. I am all out of whack with my zircaidian rhythm and that has been an issue all of m life just ask my sister Jenny. I have alwas been a night owl watching the sunrise was always my cue to go to bed. I guess that's part of why I slipped easily into the goth life. Oh how I miss those days. There is NO goth scene here at all. Maybe you'll see some highschoolers dressed as they might be, these days though that image is reserved for the rock scene. I don't get it. If you ask them about some gostaples such as Bauhaus or Dead Can Dance they will look at you like you were vomiting battery acid on them. (LOL at my own imagery)

Suffice it to say I am getting older and the good ole days are seemingly behind me. I still adore the scene, the music and the commroderay among friends in that , what I refer to as , elite group. I think most of all I miss the history and the building of the concise group with others like me who undestand me just as I understand them. Starting over is the story of my life, as my sister and I grew up constantly being uprooted and navigating the new surroundings trying to find our foothtold. It is hard to be the outsider. Although I have lived here since 2005 I still don't feel as though I'm rooted deeply here as I was in Florida. The answer I am able to come up with is because of friends and family. Whether it was by choice, on my part, I regret ignoring my sister for over ten years. Or whether the separation was because of career moves, when my parents relocated to Aliso Viejo, CA. Or even worse when my DH and I were kicked out, in spite of having no money or sustainable incomes because of.....family jealousy. On that note, we had other options but I was begged by my mother to come out there she then later kicked us out. Uuuuuggghhh, life's not fair. I have become stronger for all of the emotional blows, I survived through more than most can handle in their lifetime and all this before I'm 35. I guess why I'll ask for my personal space and trust that I know what I'm doing.

01.20.10

Today has been a long test of my patients. I was contacted this morning by my Neurologist's office. I have been asked to get an MRI asap.

I said I could work with them on that and gave them the authority to set it up whenever they can get me in. I have one schedualed for this coming Sunday. It is requested for this MRI, to have a blood test to monitor also my creatin and glucose levels. I ran off to the Alpha clinic for my blood test since I hadn't eaten for several hours as per the pre-glucose test. The Alpha clinic didn't have the fax. I was so angry and let down that I had upheld my part and yet someone dropped the ball.

Guess what, I get to fast again tomrrow. Uuuuggghhh!

01.15.10

So today I am a little better...(that's the optomist in me)
Still incredibly fatigued but I am in a very positive mental state.
That is my "break through" I suppose. Not having to absorb the comments and suggestions of others has given my mind a point at which I am able to finally able to think my own thoughts unguided by others.
I enjoy this solititude.
my advice for others out there is to give people space. I have gone to the people I need on my own terms just as I let others come to me regarding them. I like that any unsolicited advice hasn't flooded my life.