My Journey through Alzheimer's
WELL FIRST OFF PLEASE FORGIVE MY CAPS, TILL I GET THE DRAGON SOUND SYSTEM INSTALLED THIS WILL BE EASIER.
HAVE YOU EVER GOTTEN TO THE POINT WHEN YOU GO TO THE DRS AND JUST SHRUG AT ONE MORE ILLNESS. I HAVE, I HAVE A TOTAL OF 23 DIFFERENT DISEASES, MOST SEPARATE FROM MY LUPUS OR FIBRO. THE OTHER WORSE ONES ARE DIABETES, 2 PRIMARY CLOTTING DISEASES AND ATHEROSCLEROSIS.THESE I HAVE TRIED TO LIVE WITH, DEAL WITH, ACCEPT AND PRAY FOR. I HAVE MET SO MANY WONDERFUL FRIENDS THROUGH MY GROUPS AT FACEBOOK, THE LOVE AND SUPPORT FROM THERE IS INCREDIBLE. I DO NOT KNOW HOW MY DAILY LIFE WOULD GO ONE WITHOUT THEM. I KNOW PEOPLE SAY HOW CAN YOU CALL PEOPLE YOU NEVER EVEN MET, YOUR CLOSEST FRIENDS, WELL I CAN BECAUSE THEY UNDERSTAND, THEY FEEL THE PAIN AND FRUSTRATION AND THEY LISTEN.... THEY PRAY FOR YOU AND THEY REALLY CARE.
I HAVE SEVERAL SIBLINGS, I LOST ONE SISTER ALMOST 2 YRS AGO BUT MY PRIMARY SUPPORT FAMILY WISE, BESIDES MY WONDERFUL HUSBAND JOE IS MY SISTER LORRIE, ALTHOUGH WE NEVER GOT ALONG GROWING UP, I WAS THE ELDEST OF SEVEN, SHE HAS BECOME MY BEST FRIEND, MY MENTOR, MY MOTHER AND MY WORLD. HER LOVE IS UNCONDITIONAL AND SHE HAS ALWAYS BEEN THERE FOR ME ALL THROUGH HER OWN ILLNESS AND SUFFERING.
NOW TO MY BLOG, I WANTED TO START THIS WHILE MY MIND IS STILL FAIRLY CLEAR AND I WILL TRY TO POST EACH DAY...
HAVING LUPUS AND FIBRO, ALONG WITH ALL THE PAIN AND SPENDING DAYS IN BED, I WAS FORGETTING THINGS, LITLE THINGS LIKE WHY I WALKED INTO A ROOM, WHAT I WAS DOING 5 MINUTES BEFORE, PHONE CALLS, RECIPES ECT. I ALWAYS SAID AS I LAUGHED IT IS FIBRO FOG, JOE USED TO SAY THE SAME THING " I KNOW HONEY IT IS THE FIBRO FOG". WELL THIS WENT ON FOR A COUPLE OF YEARS. THINGS STARTED GETTING WORSE, I STARTED FORGETTING SURROUNDINGS, STREETS I HAD BEEN ON, PLACES I HAD BEEN, FORGETTING MY MEDS, TURNING OFF THE STOVE, LEAVING PANS COOKING AND FORGETTING THEM, ALMOST BURNED THE HOUSE DOWN TWICE. I WOULD GRAB HOT PANS FROM THE OVEN WITHOUT MITTS ECT, THINGS WERE GETTING BAD.
I WAS SENT TO A COUPLE OF DRS FOR AN SSI EXAM, I FLUNKED A MEMORY TEST, WHATS NEW? FIBRO FOG OR A PAST STROKE. I SAW MY PRIMARY WITH A LIST OF THINGS THAT WERE GONG WRONG INCLUDING NOW BECOMING INCONTINENT.THE FIRST THING OUT OF HIS MOUTH WAS ALZHEIMER'S, I SAID NAW CANT BE, I'M TOO YOUNG, I HAVE HAD PTS WITH THAT AND HAT IS NOT ME. HE IMMEDIATELY ORDERED A PET SCAN AND I WAS TO SEE HIM IN 2 WEEKS.WELL I WAS SCARED BUT WENT AND HAD IT DONE. I WAS SHOCKED WHEN I CAME HOME AND SHOWERED ONLY TO FIND I HAD AN ACCIDENT WHILE I WAS THERE, . I CRIED AND FELL MY HUSBANDS ARMS WHEN HE CAME HOME.
I TOLD THEM AT THE TEST I WAS PICKING UP THE REPORT IN 2 DAYS, I WAS SURE IT WAS NEGITIVE SO NO PROBLEM. JOE TOOK ME TO PICK UP THE DISK AND WRITTEN REPORT, I READ THROUGH THE FIRST PAGE, ALL THE NUMBERS I DID NOT UNDERSTAND, THEN ON THE SUMMARY I READ, NO MASSES, NO FLUID, NO BLOCKAGE I WAS SO HAPPY THEN I TURNED TO PAGE TWO, IT SAID SEVERE HYPOMETOBOLIC ATROPHY IN BILATERAL TEMPORAL LOBES, C/O ALHEZIMERS. I COULDENT BREATH, MY CHEST HURT, THE TEARS FELL AND I STARTED TO HYPERVENTELATE.JOE SAID WHAT DOES THAT MEAN AND I SAID IT MEANS I AM BEING ERASED, THAT HOW I FEEL. I NEEDED TO CALM DOWN, GET MY PULSE AND BP BACK AND MADE A JOKE, WELL NOW YOU CAN TAKE ME TO THE VET TO GET A MICRO CHIP. HE DID NOT THINK THAT WAS FUNNY.
WELL THATS HOW I FEEL, AS I MAKE APPOINTMENTS TO GET A LIFE ALERT WITH A GPS, GETTING ALARMS PUT ON THE DOORS, KNOWING I CANNOT BE ALONE AND KNOWING THAT YET AGAIN THERE IS NO CURE. I PROMISED MYSELF I WOULD NOT LOOK IT UP BUT I WENT TO THE MAYO CLINIC SITE, I CRIED YET AGAIN, DO NOT CRY ALL THE TIME WHEN YOU HAVE LUPUS OR FIBRO, YOU ONLY GET A MIGRAINE LOL .....FROM WHAT I READ THERE ARE 5 STAGES AND THE DR HAD SAID I WAS IN STAGE TWO. I WANTED MY PRIMARY TO TREAT ME FOR THIS AS I ADORE HIM, HE LISTENS AND IS VERY SMART, HE DID START ME ON MORE MEDS ONE MADE ME SICK NOW IM ON THE ARIFAT WHICH IS ALOS MAKING ME SICK BUT IT SHOULD SUBSIDE. I SEE NEURO TOMORROW, I DO NOT KNOW THIS DR BUT I HAVE NO CHOICE AS MEDICAID WILL ONLY PAY THIS ONE DR. ALL THE OTHER NEUROLOGISTS WIL NOT ACCEPT IT. IM SO SCARED, BUT PRAYING, YES I AM ANGRY, IM HURT, IM SCARED AND DID WANT TO THROW IN THE TOWEL, BUT I NEEDED TO REMEBER I AM NOT ALONE, I HAVE JESUS.... AND ALL OF YOU, WILL POST TOMORROW NEED TO GET READY FOR THE EYE DRS. SO I HOPE YOU WILL TAKE THIS JOURNEY WITH ME AND GAIN SOME UNDERSTANDING IF YOURSELF OR A LOVED ONE GETS THE SAME DEVESTATING NEWS.................... LOVE AND PRAYETS,
DONNALYN
WHEN WE THROW IN THE TOWEL, WE HAVE TO ASK OURSELVES IF GOD WOULD WANT US TO LEAVE IT LYING THERE OR BEND OVER AND PICK IT UP AND KEEP GOING <3 I KNOW THIS IS SO VERY HARD BUT I KNOW THAT THE TWO OF YOU HAVE THE STRENGTH AND FAITH TO GET THROUGH IT. BEND OVER AND PICK UP THAT TOWEL AND THROW IT OVER YOUR SHOULDER AND KEEP ON KEEPING ON ! YOU HAVE TO DO IT FOR GOD, YOURSELF AND FOR THOSE THAT LOVE YOU ! IF YOU LET IT TAKE OVER BY GIVING, UP YOU ARE DOING YOURSELF AND EVERYONE THAT LOVES YOU WRONG. YOU ARE TOO STRONG OF A WOMAN TO GIVE IN. YOU STARTING THIS BLOG TELLS ME THAT YOU ARE NOT GIVING IN. IT TELLS ME THAT YOU WANT TO HELP OTHERS KNOW AND UNDERSTAND THE DISEASE. GOD BLESS YOU MY FRIEND. LOVE ALWAYS,CINDY
ReplyDeleteDEAR SIS, I JUST JOINED YOU BLOG. I COULD NOT STOP CRYING. I WANTED SO BADLY TO HEAR THE RESULTS AND AM NOT HAPPY,I LOVE YOU SIS MORE THAN YOU KNOW. I DO HAVE BEEN HAVING ISSUES WITH THE NO CONTROL AND HAVING TO WEAR DEPENDS OR TRYING SOMETHING THAT FITS AND FEELS BETTER. EVERYTIME THEY DO BACK SURGERY, I WET THROUGH MY CLOTHS, AND HAVE TO GO EVERY 2HRS. I HATE IT. AND NOW MY LEFT KNEE IS JUST ABOUT GONE. DR. IS GOING TO DO A BONE SCAN ON THAT. AND I TOO HAVE TO WRITE, PUT IN MY PHONE, ON THE CALENDAR AND GET APPT. FOR DR.S, OR I WILL FORGET. MY PHONE REMINDS ME WHEN ITS TIME TO SEE HIM, WHEN MY MED.S ARE DUE AND WHAT DAY TO PICK THEM UP. I CAN'T DRIVE SO DEPEND ON MY BROTHER OR DAUGHTER TO TAKE ME TO THESE. AW, SIS. I WAS SO UPSET WHEN YOU SHARED THE RESULTS AND YOUR REACTION, I WISH I COULD HAVE BEEN THERE WITH YOU? BUT YOU HAVE JOE. WHAT A BLESSING. I MISS THAT MORNING COFFEE AND HIM SAYING TO ME, GOOD MORNING BEAUTIFUL AND 2ND WIFE. LOL. AND SEEING YOUR BEAUTIFUL SMILE. YOU ARE STRONG SIS AND YOU DO HANDLE THESE THINGS SO MAGNIFICANTLY. BETTER THAN ME, I WISH I COULD COME OUT AND VISIT YOU AGAIN. I WILL ALWAYS REMEMBER HOW WARM AND COMPASSIONATE YOU WERE TO ME AND JOE, WHEN I GOT TO VISIT YOU FOR THE FIRST TIME, AND YOU HAD A ROOM ALL SET UP FOR ME, AND DID THE CURTAINS, AND MADE EVERYTHING SO NICE AND RELAXING FOR ME, I LOVED OUT TIME AT THE POOL AS WELL. AND TRULY MISS YOUR COOKING. YUMMY. CEPT I FELT YOU DID DO MUCH WITH ALL YOUR DEALING WITH, I LOVE YOU DONNALYNN AND ALWAYS IN MY HEART. I HOPE TO TALK TO YOU SOON, I HAVE TO PEE AGAIN AND REST AFTER BACK SURGERY. BUT HAD TO COME VISIT YOUR BLOG SITE AND SAY,"I LOVE YOU SIS, ALWAYS, AND YOU IN MY PRAYER'S THOUGHTS AND LOVE. YOUR SIS, LINDA
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