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done with Live journal


I am sorry guys, but the spam has got to me. I can be reached on facebook, jessica sam pennington. I have had enough of sales comments that take away the effect of having a blog. Please feel free to join me on facebook, and the many MSA groups. Sorry i have to leave here, but it is not making me happy to delete 99 percent of my comments. I will still be available to talk to, if you need me. Thanks for your support! love Sami

MSA-becoming a household word


Dear Readers,
You may know me as Sami, or Jessica. My videos about MSA can be found on the Youtube channel, Samibebe2. Facebook has gathered many patients and caregivers and they have created groups for Multiple System Atrophy. I am a part of most of them. I am so grateful to God that these words are no longer foreign. What used to be known as Shy-Drager or OPCD, brain damage of sorts, or even Parkinsons Plus, is now recognized as Multiple System Atrophy. So many people in my life have been a part of making this disease known to the outside world.
The medical community is just now really coming around to the idea that MSA can happen to people as young as 25 or even younger. Please seek out these Facebook groups as I have found them extremely helpful. They are even groups associated to where you live. Who would have thought that Facebook would unite patients and caregivers alike? I am so grateful for those that have lost their (angels) to MSA, who keep helping others.
In September, I am attending a conference for those with MSA and the people in their life. I live in NJ, but people in the surrounding areas are welcome to come. Please contact me, and I will give you the information. Fortunately, these events are happening all over the world, thanks to Facebook groups. So if you are not a member, you might want to change your mind if you have MSA or love someone who does. Many have saved me from "throwing in the towel" just by their encouragement. I love you guys. You save lives everyday.
Yours,
Sami

Brass tacks and Stage Fright


This morning I begged God for an answer and I awoke with one. When I was in college for IT-networking, my text was out of date and very basic. To be an A student, I had to search the internet and periodicals, forums, etc. to be affixed to the newest material so my papers were perfect. I very much wanted to succeed. It seems to me that if one neurological doctor/student were looking for rare and orphan diseases, they would also use trusted sites on the internet. In order to give a positive, probable diagnosis for MSA (multiple systems atrophy), a medical student or doctor would look for a clinical diagnosis. A clinical diagnosis means you as a patient have to be seen on a regular basis at whichever facility for your condition. Most of us who have young-onset Parkinson that morphs into more of a motor neuron disease are without real care or hope, the same losses and the same frustrations. Our illness is just not clinically well-known. Unfortunately, I have had the chance to encounter too many people who were all on the same forums for the -ias of medicine. All searching for an answer and anyone else who may have what they have. They are searching for hope.

Our MSA communities, Dystonia, Dysautonomia, IBS in the Nth degree and all in combination need to be seen by a doctor. The Avenues we have on Facebook are many great strides. We have sites like patientslikeme.com/msa, NORD, so many other sites as well. It is very important that a visual is part of that information-seeking journey. Let's just help them along by giving them their clinical diagnosis which would normally take years. Please have someone film you, get your caregivers interviewed, your friends and family. Lose your stage fright. If we all did it, it would not be long before doctor and med students were going to youtube.com to see you and me and everyone you know with this disease. Please make it so people can answer your videos in video response. Consider responding in kind to the videos that relate to you.

When I first searched, there was only 1 short video, A desperate woman, pleading for her mother's cause. The numbers are increasing, but nowhere near enough for a doctor to make a clinical diagnosis based on observation. Doctors need to see you walk, see your Dystonia and Dysautonomia.It is very important that the way you walk be video taped. including tremors and any facial changes, speech changes. It can be in your control for the best doctors in the country to give you a diagnosis. You have to let them see you. I beg you, from one patient to another. We have to get this illness out there, be SEEN. There is no cure and nothing to stop Parkinsons. MSA is considered a Parkinsons Plus Disease which means they will get to it after...Let's get earlier diagnosis so people can plan for their lives early, so they know. Not knowing can be the worst part of any disease.

Please get behind me in this. It will provide a valuable resource for those in the field of neurology, and comfort for each other. If you don't put your story out there, no one will hear you. I remember what the top movement disorder doctor told me at John Hopkins in 2006. "We don't have a cure for Parkinson, and what you have is even more complicated. There is nothing we can do for you. Please try to live your life the best way you can." And I am supposed to take that lying down...

I took heed and I am delivering this message to you. Make your life mean something, even if it doesn't feel like much of a life. The downright truth is there is no cure, but we can make a difference, so let's make some noise and make YouTube.com a relevant place to go for solid information.
All my love to you and yours, Sami

A hole in my "Bucket List"

Christmas 2009
Yesterday, I scribbled in marker my "bucket list" on the mirror on the back of my bedroom door. It's been 9-12 years since I first saw the symptoms of MSA in my body. Multiple System Atrophy has taken away my life one day at a time. I have spent plenty of my time crying. All the broken promises, the choice to never have another love affair again, and the promise of having a vehicle to spend the rest of my life seeing Cirque Shows, maybe going to Belize, and now my passport has run out. And so has my hope. I can't just decorate my four walls anymore. I live in my parent's "rental home". They get mad when I try to fix it up. I am too tired now. I couldn't paint a wall now.I have lived with some serious guilt.

So my beautiful nieces and I were talking about getting a hold of Oprah, or Ty Pennington get a van to take me across the nation. We discussed having a fundraiser to get a used van, equipped for my elaborate chair. We discussed my ability to even go. The ride (an hour) To the airport to take my son home from a visit back to the airport, was a "no go" because of the superfluous partial and complex seizures I suffered from on the first trip to go get my son from the 'ever so far away' Colorado.(I live in NJ) I have 3 more more sons coming out to spend the holidays. Nothing can account for the 8+ years I have fought to see them and hide my disease. That doesn't even include the years all my family accused me behind my back to prove me of having a psychological disease and playing my parents for help while I cried and prayed.

And, the four years I spent trying to prove to doctors the same. This all delayed my care. Finally, I was put on hospice in January 2010, because the 11th neurologist said my illness was so far gone and beyond her help. She sent me to Jefferson University and they denied me any help of any rectifying kind. That doctor at Jefferson University just dashed all my hopes, started a violent argument with me because I couldn't recant my life history to him, and he was the head of the clinic. I begged him to admit me to the hospital (which he could have) and run the necessary tests to prove I did NOT have MSA. He refused and left me to my own devices, shouting, "You don't have MSA", which could also stand for Muscular Spinal Atrophy, which is far from the same thing. I told him I was researching since the symptoms started. Was he? (He did nothing besides repeating 2 blood tests that I have already tested negative for.) I donated my brain and spinal cord to Mayo and I gave the rest of body the DMV. I also gave up.

I have been on hospice since January. Do people get put on hospice and use all those people and funds if they are not going to expire soon? I am bedridden and cannot stand for more than a minute due to blood pooling in my feet. My dentist was even hesitant to finish my dental work because only my life insurance will pay, I have a "pay after you go" plan.

Can I really carry out my bucket list? Am I entitled to even have one? I have wasted years laying here. Would you rather die doing something cool or laying in bed if you had a DNR? Am I kidding myself that I could do any of it anyway? Did I do it already if there is an angel in front of my donkey?

Reality


Today I awoke with a stinging reality. My brother was diagnosed some weeks ago with upper motor neuron disease. I have the same thing!! Now if this isn't a coincidence then nothing is. I was told MSA is sporadic and doesn't affect more than one family member. How is it that we both ended up with the same type of disease and it affects the left side and carries dystonia, the inability to control one's emotions? I believe we are either both wrongly diagnosed or lightning did strike the same house twice.We haven't actually lived together since 1982.We haven't talked about it.

My brother hasn't seen my symptoms, and I haven't seen his. I knew something was wrong when he was having absence seizures in 2006 during a visit. Since then, I saw him once more in 2007, but it was not the kind of thing where we really saw each other-just a quick "Hello".
My mother tells him about me, and me about him, but I am radically unaware of how severe his problem is, or what it looks like; and I believe he is fragily unaware about the looks of mine.

I just began a course of Tegritol. It is specifically for ALS and it feels like it might be working. I am barely over a week into it. It greatly reduces nerve pain, muscle spasms, and the moodiness from losses this disease causes. I cannot take Neurontin(Gabapentin) because it makes me feel hopeless. It may reduce some pain, but...I'd rather not be thinking of ways to do myself in. I do not recommend this drug to the sensitive. Neurontin makes me think of every way to commit suicide, but not depressed enough to carry it out. Getting used to Tegritol has not been easy either. It makes me vomit so I take Compazine to counteract that.
The Fentanyl and Morphine, Valium and Lorazepam keep my dystonia from being the first thing one sees. But I have more Tonic-Clonic seizures and Complex Partial seizures as well. Hmmm...tradeoffs. I have a fundraiser going on facebook, to help raise money for a van. I only have 112 DOLLARS SO FAR. If you would like to donate towards a van for me, please go to paypal.com and enter pennington.j@dishmail.net to donate any amount you can afford. My wheelchair is elctric and weighs over 350 lbs.. I am also trying very hard to get my sons out here to see me. I live in NJ and they live in the Boulder/Denver area of Colorado. I keep praying for some souls to help me. I would like one more Christmas with my sons, together.

Anyway, until next time...Peace be with you. Love Sami

On the Highway to Heaven



I have recently been trying to adjust to Hospice. About three weeks ago, I went on permanent hospice care at home. It's been a whirlwind of arrangements along with a great deal of confusion and ultimately beginning to come together. I am no longer seeing any specialists or primary care doctors. The only doctor I have is a visiting Hospice doctor and her nurses. I have a few social workers, and two working nurses everyday of the week at my house, including Mom. My living will is my ruling document and is being followed as my care guide. I have run out of treatments and my pain is being managed at home.

I can no longer walk, I am at too high of a fall risk. I recently fell and broke or severely sprained my leg, passed out on the kitchen floor the same night and again an hour later. Gravity is fighting me and winning. I have motor nueron disease. No matter what version, i.e., MSA, ALS, PSP etc. It does not matter what the three letters are, it is a fatal condition, and unfortunately, moving very swiftly. The actual technical definition will only be found upon autopsy because the brain damage has ocurred on a cellular level. I have a working diagnosis of (probable) MSA.

More than two doctors have agreed that I have a neurological condition that has no cure and no treatment. I have been gradually decompensating and now fast progressing. If you have been following my youtube videos, you can see that there have been many changes to my condition and much deterioration. I rely on God as my hope and support. I am not scared. I am rather very grateful to have the services provided for me to be able to have my pain and suffering managed so I may enjoy what time I have left.

Only the Lord is in control of this situation. It is very hard for my friends and family to accept that this is where things are. Unfortunately, each family member and friend is at a different stage of the grieving process and I am coming to peace with it. I have been living with the demon MSA for 9 years since severe onset.

Furthermore, Hospice management is not recommended until the patient is expected to live less than a year, there are some exceptions. There are no remaining questions about my diagnosis. There may still be much remaining time. Because what I have is rarely ever seen or diagnosed, no one can give me a relative time frame. It simply means the regular doctors have run out of treatments. Hospice can help me with my ADLs and manage my pain on a greater level. I am optimistic, I live in hope of tomorrow everyday. I almost find it an insult when someone may say that I need to be more hopeful or that I need to have a better outlook (If you feel you have to say that, you don't know me.). Please understand that I love God, I eagerly await being with God. Please rejoice for me. My condition is terminal. Any questions to my family about the origin, diagnosis, treatments or treatments we have, or haven't tried need to stop. Please quit asking these questions. I would rather enjoy the rest of my time with you, loving you instead of discussing a fatal issue that I have absolutely no control of. I do not owe anyone an explanation.

I am in daily prayer, as I have been since 1988. I love God. I share my love and faith with you. Please try to make an effort to come and spend time with me. If that is not at all possible, please call me, let's laugh. Please, no more questions. Let's just love each other with God in the middle and enjoy what time I have left.
The past is gone, what I have is NOW, and the future is not on the table. Please be happy for me that soon, my God will release me from the endless suffering I have already endured. The goal is to get to Heaven. We all will pass away. For me, it will just be something expected.

Tami Owen was kind enough to start a "Sam's support group" for me on Facebook. It is very difficult to explain years of history on there as well. The goal is to try to see how many people will possibly be attending any memorial service for me, so it can be planned in advance with a "guesstimate" of how many people may be in attendance in both Boulder, Colorado or New Jersey. Because the party's on me, planned in advance by me, because I love you; please dress nice, it's a celebration of life.

'nuff said. UPDATE-I was taken off hospice-"thank God" because it is a steady but slow progression.I AM NOT READY TO DIE RIGHT NOW!

some links


Myspace Blog= outa my mind

I promote awareness of dysautonomia, dystonia and neurodegenerative disease and multiple system, chronic, progessing conditions. I am building a unit of people who, while suffering are the support for one another. Most of my friends are experiencing much the same situations. I have a series of videos called, "Enough is enough" and "Your Sami has MSA".
please feel free to learn more at Samibebe2's channel Yes, that is me. I also run samispages.com to honor my loved ones, te celebrate all their contributions to my life.
I am on MySpace But just use it mostly for the music and my superpokepets and a few great frinds. Meanwhile, everyone seemed to have migrated to My facebook but it's more rated G. I found a new site today called http://dystomag.com for those who have dystonia.
My son and his gal have been visiting me and have brought so much recent joy to my life at a time when I needed it most.
My prayers are with you Celesta, everyday I think of you. I am with you in heart. And I am only as far away as the phone or computer. God be with you.

Scrapbooking -in a digital sense


Tammy Jo Traver is a friend of mine.
She has the best scrapbook resources. Please look her up!







TJ’s Web Design

Tammy Jo’s Creations

Moon Dancer’s creations (blog)

Tammy’s Blog about Ehlers Danlos Syndrome



Tammy Jo has Ehlers Danlos Syndrome. She is a great support to people like me. Lets support her on her endeavors of scrapbooking!

Support Dysautonomia Awareness - Petition - Sign this petition here - Signature page - GoPetition



Please add your signature, it only takes a few seconds to promote awareness for Dysautonomia.
Thank You so much, it could potentially save many lives.

Thank You
Sami

I am not going to "mamby-pamby" it anymore.


Today, well last month or so, I realized what an impact I may be having on the community on youtube of multiple system diseases that onset in midlife. I am getting really tired and I can only do so much by myself and with the grace of God. If you have anything like what I have in any of the videos, please post one of yourself as a video response. Sami's You Tube

Many people I have spoken to have said, "well, I had tremors, and now I have problems with my blood pressure and heart rate." Others have said, "Well, I had dysautonomia and now I have really bad muscle spasms and involuntary movement." Neither of these are good.Either way, that cocktail is deadly. There is no cure.

I am so disillusioned by the medical community and what little effort is put into the thousands, if not millions of cases of fibromyalgia (which just means, "sorry lady (or man), I just don't want to waste my time on you, so lets just give this a name so I can give you drugs." Almost all cases of Fibromyalgia evolve into a far worse case scenario. Fibromyalgia is a blanket diagnosis just like Parkinson Plus syndromes. If they can't fix it with a pill, or there is no cure, or it will be very time consuming...they let you go. You are off to your own devices to be your own doctor.

Frankly, I quit looking for a diagnosis, because I have one. It's called neurodegenerative disease. Does it have to be MSA-Multiple Sytem Atrophy? That is just an acronym for my middle name: Sam. It doesn't deserve a stupid name. No one has to tell me what it's doing. I can really feel it now, and worse, I can see it, I can't hide it and I can't deny it. It keeps changing, but to what I have no idea. Unknown territory, ya know? I just praise God every time I wake up, because I am not so sure I will. I do know it scares me, and everyone I love. See Sarah's story on my playlist.

From now on, I am letting God speak. I am still creating videos on interesting topics and playlisting anything that has to do with my symptoms. If it's on the playlist, I have it; all but the drooling, due to lack of saliva; that is part of MSA. Any way you slice it, it's still the same thing. Funny though, I am not scared. I am curious. I want to know why everything happens and what is happening and how it affects me and others and then I always ask myself, "how can I help?"

I love God and the very thought that even one soul out there is dealing with a neurodegenerative disease and is not being heard, or loved causes me distress. I would not wish this on my worst enemy, because no one deserves the hell of it all. I feel like I just want to love it all away. I cannot believe that we can spend hundreds of billions of dollars to explore space (which is limitless and pointless) but we can't spend money on healing people from neurological problems. The human mind is just as intricate and expansive as space. Look in, not out. Save souls, not planets and stars. Save lives with that money!!! what are you looking for anyway? will it benefit us?

So please...make your voice heard. Let the medical community know that you will not just lay down and die. I know you are tired, so am I...So if you have to, have someone speak for you. Just get heard. Michael J Fox needs our help. Parkinson is only one of several horrific neurological disorders fro which there is no cure. Are you just gonna stand there, or fall down there, and accept that? I certainly will at least make several people in the medical community mad as hell. What will they do about it?

Starting with:

To: Dr Mark Hallet MD (NIH)...Prove to me it's not MSA and I will quit loathing you for labeling me with Psychogenic Dystonia for your damn book (which was released ironically, right after my vist when you thrust me in front of 40 medical students). I hope you made a fortune, because you delayed my medical care for four years just to prove your point with no regard for my life quality. Get mad at that. I am finally on seizure meds, and don't have to see a shrink anymore because of your arrogance. The illness proved itself. How could you let me get that sick with no where to turn for help? You could have offered some treatment. You are supposed to be one of the best movement disorder specialists in the country!
You told me you'd help me. I saved your e-mails. Ha! Liar. i waited months to see you with such high hopes.

I haven't read the book. I'd burn it if someone gave it to me. I looked it up. Psychogenic Dystonia is a joke and the outcome is MSA, and the only argument is origin. That means you argue over who wastes time trying to figure out who will treat me, a neurologist, a neuropsychiatrist, a psychiatrist...certainly not you. You are a world-class, self-important ass that saw me 5 minutes. I forgive you, you only hurt me on the way to yourself. Oh, and psychogenesis only accounts for 3% of dystonias and they are focal. While you were out playing golf, I was trying to save my life. People use their whole life savings to get to someone like you. Please explain my death to my four kids and how it was caused by a trauma I can't remember.

Well, maybe I haven't forgiven you, I will have to repent of that, and the part about wishing you would get it.

So many people have had the same experiences as me. Well...get freakin mad already. Let God handle the rest, after all, he is in control of it all.

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samibebe
Jessica "sami" Pennington
Jessica Sam Pennington

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