Movies and Curls and Hurricaines

It has been a rainy couple of days; perfect weather to match my mood, and it certainly has been playing havoc with my poor body. I have pain in places I didn't know could hurt. Kind of like the flu x 3 without the fever? Nausea but gotta consume copious amounts of water. Could literally live on a couple of crackers (to cover the 12 pills twice a day). A couple of nice things- I did get my hair cut short and colored and highlighted. We so did not need to spend that money on me, but... I needed the lift. The funniest thing happened tho- my hairdresser (who is like a sister to me) kept commenting on how my hair was falling out faster than she could cut- but, when she got finished cutting, I had a head full of CURLS! I have never had curls. It looks really cute, alot like Meg Ryan's used to look. Just brush it, run wet hands thu it, and go. Now, if only I could go! Lol! That was Thursday. On Friday my 14 y/o daughter wanted to go to a movie with a girlfriend, so Glenn and I went to the movie across the hall. It felt so good to get out in the real world. Would you believe my wheelchair will not fit into the trunk of the Neon? So, if there are more than 3 going we have to borrow mama's car. Car is upside down so no chance of trading it. Will just have to make do. I never realized when I was assessing and making recommendations for elderly and disabled people what a difference small things make. The neon sits almost on the ground- getting up and out of it is a struggle. Our toilet seats are low, and if the vanity wasn't right next to it I may not be able to get up. On bad days, I need help getting out of the bed or sofa. I don't know how to get any stronger when I can't sit up or stand up. I lay there and do the leg lifts and pelvic tilts, and ankle rolls- anything I can think of. But sudden movement makes me dizzy. I hate this. I hate everything about it!!! I cannot stand being dependent on Glenn for everything. I want me back!!!!! I want this damn monster out of me!!! I am sorry for being angry, but I am not ready to accept that this is my life. NO!! NO WAY!!

Sorry for the Pity Party

Sorry guys- I know of at least one person who read my blog and sent me a sweet email. One of my sons emailed me. The purpose of this blog is not to hurt peoples feelings, but for me to find a way to deal with the depression of suddenly being disabled. I feel like I am in a black hole and cannot find the strength to get out.

I am so anxious to read Lynn's book, and so glad she lives nearby. And to learn that Sue has 'something similar'. That gives me 2 people to talk to. I wonder if others legs are weak and wobbly? Does their vision change throughout the day? Have they lost the ability to spell? Is their memory just shot? Are most still working? Do you feel safe enough to drive? Do you have the energy to get out of bed every day? I have been sick 3 yrs, but not really, really sick til last Jan. I am in a wheelchair, on O2, very weak, and only 52. Have any of you reached this point and then one day got better? Got where you had strength and energy and did not collapse each time you stood up? So, whether the answer is yes or no, I need to know.

My Oldest Son Brandon and my only grandbaby, Blair. She is my heart!

It's Tuesday night at 11pm. I just spent 30 min looking for the blog I wrote and saved last nite but my computer was acting up and it would not post. It even says I have 3 blogs saved. Maybe it will just appear-who knows. I was having a bad day and feeling a bit neglected. I really don't understand why people have stopped calling and coming by. Ever since I got my diagnosis on 9/09/09, everybody else's life has just gone on. It's unfair. Why did my world stop dead in its tracks and everybody else gets to continue their lives?I did this for months without a thot for Nick when he was 4; a few months later for Brandon at 6; our world's revolved around trying to keep Meghan from killing herself from age 13-16; and Carly at birth so blue, not breathing-and I have cared for my husband, and my mother,and my Banny-all because I love them so much. I have dedicated 32 years to the profession of nursing, mostly caring for the elderly, and disabled.
Doesn't it say somewhere LIFE IS FAIR and GOOD THINGS COME TO THOSE WHO DO GOOD (or something like that).

I have lots of people praying for me. This is good. Maybe some of them will read this blog and call me. Hey Meghan, just in case you care, I now understand why you cut yourself. I wish I had the courage

Anybody Wanna Join My Pity Party?

I suspect that most of you are surrounded by loving family and friends. And, for those months while we thot I was going to have brain surgery on my basilar artery (not real good chances for coming out better than you went in), I had so many people calling and praying and sending cards. I became really symptomatic in April, 2006. Since I own my own business I could schedule appointment on days I was not too weak to get out of bed. By May of '09 it was obvious I was having to cut back more and more. If I worked 1 day I would be in the bed for at least the next 2 days recouperating. I was using a cane and just prayed I didn't fall out in front of them. In August I began using a wheelchair outside the house. We had several bad incidents in public that I just prefer not to risk being on someone else's floor. I stopped driving last January-I don't feel safe, and my reflexes are slow. I have not shut down my company, nor have I applied for SSI. I am almost 53. There will be no retirement check. There is no money in savings. There is no income from my business. My husband is also disbled (RA) and after 2 yrs he got SSI. He also gets a retirement check from the State. Tho a blessing, it is not enough to pay the bills. So many losses to try to take in. This is not me. I am the fun Mommy, Nina, Aunt-I I take them all to the fair because I love to see the joy on their faces; I am the one that gets in the pool cuz I don,r

BIOGRAGHY OF THE SUCKY MONSTER

More about the Sucky Monster: this is the monster that has grown in and from my body, from every organ, appendage, vessell, even the air I breath. This huge, intense, invisible monster lives within me and has taken over my body. I never gave him permission to visit, much less an invitation to stay. I am told it began in my brain, wrapping and intertwining itself through the brainstem. Once it had its base solidly planted, it slowly took over my body.

Many years ago, my younger brother, Buddy, had a terrible fear of heights. Being the only boy for some time, Daddy would push him to do things to try to overcome his fears. The high slides at fairs, roller coasters, mountains; Buddy just became more convinced that the "Sucky Monster" was going to suck him down- he could feel it pulling on his shaking legs. It was very, very real for him.

The other day, as I was fighting to stay on my feet long enough to make it 5 feet to the bed without losing consciousness, I suddenly understood who the Sucky Monster is. He is the monster who is under my feet emptying my body of blood so rapidly I could not stop him, I can hear him laughing 'I win again". I am panting for breath and feeling my heartbound and race in my chest to compensate for the lack of blood to my heart and brain. He is Invisible too- but I can see him. I know him. And someday, with God's help, we will tame and cage this monster.

DYSAUTONOMIA-THE SUCKY MONSTER

Hello World. This is my first attempt at blogging. It is mostly for selfish reasons, as I have recently been diagnosed with a devastating condition that has changed my life in every way. Six months ago I could walk, drive, work, cook, clean, take care of my family. I knew I was sick, but none of the physicians I went to could diagnose me. They just said I was not getting enough oxygen to my brain but they did not know why. I had been doing this for two years and getting sicker and sicker. I asked UAB for a referral to a group of neurosurgeons and cardiologists in St Paul, MN. I spent 3 weeks in September having every test known run. The last physician I saw was an Electro-physio Cardiologist. He reviewed all my test results, asked me questions that went all the way back to my childhood, and many questions about my symptoms. Then he told me I had Neurocardiogenic Dysautonomia:
'Dysautonomia is any disease or malfunction of the autonomic nervous system. This includes postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, multiple system atrophy (Shy-Drager syndrome), Autonomic Instability and a number of lesser-known disorders.In some cases, dysautonomia results in a reduction in the ability of the heart and circulatory system to compensate for changes in posture, causing dizziness or syncope (fainting) when one, eg, stands suddenly. In other cases, the heart may race (tachycardia) for no apparent reason (known as Inappropriate sinus tachycardia), or the kidneys may fail to properly retain water (diabetes insipidus).The effects of dysautonomia may be minor, only limiting the patient's activities slightly, or they may be totally disabling, leaving the patient bedridden.'

According to my physician, he does not think I will get much worse. He believes I will be able to walk a few feet at some point. He thinks my energy level will improve. However, he says for me not to expect to see any changes for at least 6 months. Now, that is just unacceptable.