Living with OBS and its Symptoms

  Thinking about all the problems I have with owning OBS, sometimes I wonder if I own it or it owns me. It is a daily struggle to try to beat the defeat of OBS symptoms. I constantly have to be using my brain, exercising it as if it were a dystrophic muscle that I need to use to be able to walk.
   Strange as it may sounds, I am almost grateful that I got it early, was diagnosed early and was aware of it young so that I had time to work with it. Time to try to beat the clock... and beat the clock I did indeed. Being diagnosed in 1997, the doctor gave me 5-10 years of valuable life left to live before OBS would completely take over my body and make me into a nonsensical character. I was 31 when I was diagnosed and had just a toddler and a husband at home. I would gaze at her wondering if I would ever live to see her grow up or if I did live, would I remember who she was. Would I be able to remember all the baby stories and her growing up stages that were important only to a mother and the stories my child would wish I did forget? Now in 2011, I have raced across that walk of death bridge and got to the other side, ever so safely however waning. I have not lost sight of the doom that surrounds me, but I have been able to build a stronger fight against it. My doctors do not understand how I have kept going. They told me back then that I had the body and a mind of a 81 year old woman. Indeed, on some days, this can be very true. My brain scans have come back as an 81 year old woman. Can you imagine? I still can't and it happened to me. My body through the years of 1997 until now has begun to show the break down and the aging that OBS brings upon one prematurely.
   Some of the premature aging signs are obvious; short-term memory loss, bad vision,  graying of the hair, hair loss, fracturing of the teeth, handwriting has aged quite a bit. I have become much more slow.... not able to get as much done. Hard to keep up with the housework and a daily schedule. Getting tired after only a little bit of work. Insomnia, appetite loss but weight gain due to muscle loss and not having the (here is another one of my OBS symptoms, forgetting words.... I know what word I want to use, but can't think of it, so I have to go try to look it up) metabolism as you young'uns have. Age spots on my face and hair under my chin that I need to shave. I even sport a 'stache and shave that too. I always tell my girls, "When I get old and you put me in a nursing home, please make sure you shave my face!!!!".
   The other premature aging signs that are not so obvious to the public that are obvious to Danny and I are very personal ones. I share them here because it is important to understand what happens to someone who has OBS. 2 years ago, I was diagnosed with Premature Ovarian Failure. When your ovaries fail, they don't produce normal amounts of the hormone estrogen or release eggs regularly. This is different than menopause. Here is the difference: some of the symptoms women have with premature ovarian failure — also known as primary ovarian insufficiency — is that they may have irregular or occasional periods for years and may even become pregnant. Women with premature menopause stop having periods and can't become pregnant. The signs and symptoms of premature ovarian failure are similar to those experienced by a woman going through menopause and are typical of estrogen deficiency. They include:
Irregular or skipped periods (amenorrhea), which may be present for years or may develop after a pregnancy or after stopping birth control pills.
*Hot flashes
*Night sweats
*Vaginal dryness
*Irritability or difficulty concentrating
*Decreased sexual desire
 Sounds fun, doesn't it? And I have all those problems. What I mind the most is the Hot flashes and night sweats. I have the fan on most every night now. I run around in shorts all day and even went to the store in the middle of the night on Thanksgiving Eve with a short sleeved shirt, shorts and slippers on. I did have a jacket around me though and I still caught a cold. (However, everyone in the home right now has a cold and Danielle says she gave it to us... so who knows.).
  I do know I become irritated and emotional sometimes when I think that I no longer can have a child. I do have those moments. What I need to remember is that there is life after children and that being older does not automatically mean death immediately. However, for me, being classified as terminally ill with this disease and others, does not give me much hope.
   The other signs of aging I have struggled with is loss of bladder control, loss of bowel control, boobs getting smaller and saggier. I lose a thought quite rapidly, as a caged bird flying out the open window at first chance. Night vision is miserable and so now I do not drive much at night. Speaking of driving... I drive much slower now, very cautious... sometimes almost too cautious! That can also cause accidents. The social anxiety has increased. I have become more depressed also, knowing that my life is going by so quickly now. When I was a kid, I couldn't wait until I was grown, to do what I wanted... but now that I am grown, I yearn to be a child again and be released from the responsibilities I once craved. Some days, I can't walk and I need to use a cane or a walker. I own a potty chair and hate using it. But I do use it when I have to. All in all, I am pretty stubborn and try to keep going.
  With OBS and besides OBS, I also have Congestive Heart Failure, Coronary Artery Disease, Diabetes, Neuropathy, Bursitis, Premature Ovarian Failure, Premenstrual Dysphoric Disorder, 2 Heart Attacks, 1 Massive Stroke and several TIA's. I have a Hiatal Hernia, Cysts on my ovaries, a Prolapsed Uterus, and a Birth Defect where the two nerves in the back of my head are twisted and not vertical like yours are. Migraines are a constant problem and when I get them, sometimes I lose my memory or I go back in time to when I was a child or a different age. I have had gallbladder surgery when I was 22 and was pregnant, they almost lost me and the baby. I gave birth to a child who was born Anencephalic (born without a brain) and Spina Bifida. I gave birth to another child who has Asperger's Syndrome; which is a high functioning form of autism. Students with it often perform very well in the school environment and may even be the smartest students in the class. They do have problems with social interactions, though, often being unable to interact properly with others. They do not read body language well and sarcasm is often misunderstood. They also have very narrow interests, sometimes obsessing over specific things.  My other two girls seem to be doing okay.
  It is hard to live with OBS. My biggest fear is that my children will suffer from it someday. They already suffer from watching me and having to grow up around it. I sometimes say or think the wrong things and my girls think I am inappropriate or I am just goofy or act immature. They do not realize that my mind does not think like theirs do. I tend to go back and forth between ages in my mind. I can act 7 or I can act 80. It is not a choice, it is an action that my brain makes. Sometimes, I see it coming and I retreat to my room or try to remain quiet, or if I catch it late... I always apologize. If I don't apologize and girls, if you are reading this, I am sorry. If I don't apologize, then I missed it. I know that my husband and my girls are suffering with this terribly. They never know what type of mood I am going to be in. I cry a lot, I am terribly lonely now, the insecurities have swept in like a cold chill of air that no one, no matter how hard they try, sometimes cannot be comforted. I am a much more needy person. Need more help, for cleaning, for care, for comfort and joy, for talking to, for even getting dressed and putting my shoes on. I am so dependent on them and care not to be, I wish for them to be dependent on me.. and they are, sometimes too much where I can't take it anymore. And that is where the battle is, the balance does not exist for me. I wish I could just solve all their problems and not put my problems onto them. It frustrates me to no end to know that I cannot help them, because I am struggling right now to help myself.
  In Alzheimer’s disease and OBS (dementia), a substance called amyloid builds up and causes the early death of brain cells, which results in a progressive loss of memory and other brain functions. This progressive loss can be a synonym to the word of hell. It is a slow demise resulting in depression, fear, sense of  loss, loss of self-worth and being. A great burden that has unwillingly been placed on a precious husband and beautiful children who have lost their own childhood by taking care of their mother. It is the uncertainty of knowing when you have your next migraine and you lose your memory, will you ever get it back again. I do not want to die not knowing who my loved ones are. I never want to forget those baby stories of Danielle. I do not want to forget what the sound of my husband's beating heart sounds like that so comforts me now and puts me to sleep. Fear, you live in fear constantly every day, fighting to remember and remembering not to forget.