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Dear Blog, It has been a while since I wrote anything. I use my phone now for internet stuff since my tablet with keyboard is never charged up. I have held things inside. I was wrestling with myself. I was too tired, or in too much pain to think. And people get tired of hearing it...and I get tired of thinking it. I am grateful I recovered from that awful flu, which turned sinus infection. It postponed the spinal RFA until I was off antibiotics and all well. 2 months late, I did get it, thank God! But that proves how much it works and helps me. I am grateful I joined a live stroke support group. It is for both stroke and TBI, only 5 people, but fun. Not anything new, but for me a chance to be around peers. They were shocked I live at long term care, but I am grateful for the help I get. I advocated loudly for better nursing care and got it, but the ombudsman cautioned me that they can evict, then I just buttoned up. But not for long. I talked to my social worker who said I give constructive criticism. I said, all I want is a nurse who brings meds on time. So, I stopped complaining to them. Lately now if any probs, I call my doctors and ask them to call here. They have straightened out things because they monitor me on the meds. That has worked. Little things are worse when I hurt and I need help. I am grateful. Do not make fun of my mint green bunny with pink rosary beads, mother of pearl rosary beeds, and evil eye beads around her neck. This is comfort central. I hug it, pray, and sure it helps. I was months with only drugs that hardly help, and I sat crying,hugging,praying. Do not shame what you do not understand. My inner child, my painful body, this CPS thing that any biofeedback thing may help.....if I would get to a biofeedback clinic....well my home remedy would be pray, music, because as anyone with this knows, screaming, upset, just increases the pain stuff. Now I must say I have full adult cognitive powers intact. Why are stuffed animals just for kids.....so I bought my adult son a small one for his desk...it is tiny dark blue. So I am having a blessed year so far.
ON A NORMAL DAY SINce RETIRING FROM MY EDUCATION CAREER, I WAKE AT 5 WHEN MY WIFE RISES TO BEGIN HER WORKDAY I I GO TO THE KITCHEN, GET AN ESPRESSO AND OPEN THE LAPTOP TO SEE WHAT MAY HAVE HAPPENED IN THE WORLD OVERNIGHT.THEN ITS OFF TO THE GYM ABOUT 8,AM AFTER THE SCHOOL TRAFFIC IS DONE. I SPEND AN HOUR THERE,THEN HOME FOR BREAKFAST BUT .BACK ON AUG 28 WHILE ON THE VERY BUSY 2 LANE ROAD HEADING HOME, I FELT MY TRUCK PULL HARD LEFT TOWARDS ONCOMING TRAFFIC, I WAS NOT SURE WHAT WAS HAPPENENNING TO THE TRUCK,SO I SLOWED TO 30MPH, THEN I REALIZED IT WAS MY LEFT ARM PULLING THE WHEEL OVER TO THE .LEFT I REMOVED IT FROM THE STEERING AND DROVE WITH MY RIGHT HAND UNTIL I GOT HOME,THEN IN THE DRIVEWAY I OPENED MY DOOR WITH MY RIGHT HAND AND STEPPED OUT ONTO A LEFT LEG THAT DID NOT HOLD ME, FELL HARD ONTO THE CONCRETE DRIVE. AND PANICKED MORE THAN A LITTLE I FORCED MYSELF OFF THE CONCRETE ONTO THE RUNNING BOARD AND TRIED TO CATCH MY BREATH, THEN WALKED INTO THE GARAGE AND TO THE HOUSE. I WENT TO THE SHOWER AND TOOK A WARM ONE TO RELAX. THEN I TOOK MY BLOOD PRESSURE TO SEE IF IT WAS HIGH,I FOUND THAT IT WAS 202 OVER 110. I TOOK 2 ASPIRIN ( SMART) AND CALLED A NEIGHBOR TO COME OVER, HE THEN SAW ME AND TOLD ME I NEEDED TO CALL 911. I ALSO TEXTED MY WIFE WHO SAID TO MAKE THAT CALL RIGHT AWAY, SO OF COURSE,I DID NOW ,I WAS QUITE WORRIED, BECAUSE I HAD MADE IT TO 68 YEARS OLD HAVING NEVER BEEN HOSPITALIZED BEFORE. I TOLD MYSELF I WOULD TRY TO PAY ATTENTION TO THE EXPERIENCE AND JUST RELAX, THE EMT CREW WAS SO PROFESSIONAL THEY MADE IT EASY FOR ME. NEXT CAME EMERGENCY ROOM, WITH A BUSY GROUP IN BLUE SUITS ALL AROUND ME. , I KINDA FOUND IT HARD TO BREATHE, ANXIETY SET IN, AND THEY OFFERED ME OXYGEN AND A DRUG TO RELAX ME AND LOWER MY NOW 210/112 BP. NEXT I FELT WEIRD AND WAS TOLD I WAS STROKING,, HAVING ANOTHER TIA WHICH COME IN GROUPS OFTEN., I HAD AGREED TO GET A ROUND OF TPA, THE CLOT BUSTING DRUG THAT PREVENTS MAJOR STROKES, WHICH CAN FOLLOW A TIA, SCARY BECAUSE IF I HAD ANY BLEEDING INTERNALLY, THE TPA COULD TURN 'EVIL" AND KILL ME. IT WORKED HOWEVER AND I WAS TAKEN TO GET A CT SCAN LOOKING FOR BLOOD AND CLOTS IN MY BRAIN, NONE WERE FOUND AS REPORTED BY THE NEUROLOGIST, SO I WAS IN THE CLEAR FOR AWHILE. PHEW! I THEN HAD MORE SCANS, A FULL 45 MINUTE MRI, TALK ABOUT CLAUSTROPHOBIC! ALSO A CARDIAC SCAN AND NUCLEAR STRESS TEST, AS A GENETIC CANDIDATE FOR HEART DISEASE, I HAVE ALWAYS CARED FOR MY HEART, EXERCISING REGULARLY AND EATING HEALTHY. I ALSO TAKE SEVERAL HEART SUPPLEMENTS THAT ARE HELPFUL, SO ALL THET TESTS CAME BACK NEGATIVE FOR HEARET DISEASE AND BLOCKAGES, OTHER THAN AN ELECTRICAL ISSUE, A RIGHT BUNDLE BRANCH BLOCK WAS DISCOVERRED, WHICH CAN CAUSE ATRIAL FIBRILATION AND ULTIMATELY LEAD TO STROKE. I also had a full body MRI. I SPENT 3 NIGHTS IN EMERGENCY CARE THEN 5 MORE IN ICU. I COULD HAVE BEEN RELEASED TO REHAB , BUT IT WAS THE FRIDAY BEFORE LABOR DAY WEEKEND AND THE REHAB CENTER WOULD NOT ADMIT A NEW PATIENT. SO 3 MORE NIGHTS IN THE RECOVERY AREA OF ICU. FINALLY TUESDAY ARRIVED, AND I WAS TRANSFERRED TO IN- PATIENT REHAB, ON LEAVING THE HOSPITAL, I WAS STRUCK WITH HOW GREAT IT FELT TO BE OUTSIDE, IF EVEN IN AN AMBULANCE, THE REHAB CENTER WAS AnOTHER NEW EXPERIENCE, A SMALL PRIVATE ROOM WITH very SMALL TV, a BED, LOUNGE CHAIR ANDt wo ROLLING TABLES .THIS WAS TO BE MY HOME FOR 3 WEEKS. VERY DULL, EXCEPT FOR THE THERAPY SESSIONS WHEN MY WHEEL CHAIR WAS ROLLED INTO THE GYM, FOR TWO OR MORE HOURS OF LEG EXERCISES, AND LEARNING HOW YO USE A WALKER SAFELY. ONE DAY AFTER SEVERAL WEEKS I WAS INSTRUCTED TO TRANSFER TO A LOW MAT- TABLE , MY CHAIR WAS PLACED SEVERAL FEET AWAY, SO I STOOD AND WALKED,TO THE MAT. THIS WAS SUCCESSFUL BUT NOT VRY PRETTY. MY LEFT LEG WAS GAINING IN STRENGTH BUT NOT POISED AND IN GOOD CONTROL, I REALIZED THOUGH THAT I HAD ACTUALLY WALKED AND WAS QUITE PROUD OF THAT ACTION. THE OT THERAPY CONCENTRATED ON MY LEFT ARM AND HAND USING VARIOUS TECHNIQUES INCLUDING E-STIM, ELECTRONIC MUSCLE STIMUATION, WHICH AMAZED ME TO SEE MY HAND AND FINGERS MOVE ANIMATEDLY. I ALSO HAD SPEECH THERAPY TO IMPROVE MY VOICE CONTROL, AND WE SPENT SOME TIME SINGING WHICH FOR ME WAS A MAJOR PART OF MY LIFE PRIOR TO ALL THIS. I KNEW THAT THE POSSIBILITY OF REGAINING MY GUITAR PLAYING ABILITY WAS REMOTE AND WELL INTO THE FUTURE OF ALL THIS. DEPRESSING, BUT MY REALITY NO DOUBT.SINCE A STROKE CAN MAKE YOU VERY EMOTIONALAND QUICKLY, I WOULD BE OVERCOME WITH CRYING JAGS WHEN I BECAME AWARE OF THIS REALITY, AND THESE ONLY ABATED WITH A PRESCRIPTION ANTI -DEPRESSANT PRESCRIBED FOR ME. THE THREE WEEKS DRAGGED ON WITH PROGRESS BEING HARD WON, AND MANY HOURS SPENT IN MY BORING ROOM., ALONE THANKFULLY I HAD MY LAPTOP BROUGHT IN, AND FOUND THE STRROKE SUPPORT ONLINE NETWORK, WHICH GAVE ME MANY INSIGHTS INTO WHAT OTHERS HAD EXPERIENCED WITH HAVING A STROKE AND AFTERWARDS. I ALSO STARTED READING A BOOK ON RECOVERY FROM STROKE WHICH WAS VERY EDUCATIONAL. I SAW THE POTENTIAL AND MY OPTIMISM INCREASED GREATLY. I JOINED AND EAGERLY READ THE POSTS FROM OTHER SURVIVORS. I RECEIVED A NUMBER OF VISITORS INCLUDING A FEW OLD FRIENDS I HAD NOT SEEN IN QUITE SOME TIME. MY WIFE CAME EVERY DAY AFTER WORK , OFTENROLLING ME OUT TO THE COURTYARD FOR SOME AIR AND SUNSHINE. I LOOKED FORWARD TO SEEING HER EACH DAY, AND SHE PREPARED TO BE MY HOME CAREGIVER SOON. I WORRIED ABOUT BURDENING HER, BUT SHE WOULD NOT HEAR ANY OF THAT, MY SONS BOTH CAME TOO AND ONE STAYED THREE DAYS, SLEEPING ON THE COUCH IN THE ROOM I HAD. HE IS STRONG YOUNG MAN AND VERY POSITIVE , SO HIS VISIT WAS GREAT FOR MY MOTIVATION. I RELISHED THE TIMES I HAD ACCESS TO A HOT SHOWER AS THEY WERE FEW, BUTIT WAS WONDERFUL.BEING CLEAN AND FELT GREAT AFTERWARDS.
(I've decided to try blogging from the perspective of my left arm/hand (my affected side) who I affectionately call "Mr Lefty.") Lefty's Blog I'm feeling less tight lately. The new brace Rose has been using at night seems to help. It holds my wrist in place and stops me from staying in the bent/flexed position I seem to crave. She also has me hold a tennis ball when she's driving. (Mr Righty does all the steering, I just hang out on her lap.) When we're stopped at a red light, I squeeze and release my grip on the ball a few times. The best is when I squeeze in time to a song on the radio. Today Rose tried to put me on the steering wheel to see if I'm able to help out yet, but my arm just didn't want to relax and straighten out enough yet and I couldn't keep a grip on the steering wheel, so not today. Maybe one day though, when I feel ready. I'm helping out more these days: holding on to things like a toothbrush or pill bottle while Mr Righty does his fine motor magic. The more Rose remembers to include me in stuff, the harder I try to come back to life. It's snail-pace slow, but I really WANT to get better, it's boring just hanging by Rose's side all the time, I want to get back in the action. My greatest dream? To one day accompany Mr Righty on the piano again, or even type the letters on the left side of the keyboard. Wish us luck, we'll keep you posted Rose and Lefty :goodjob:
Things are changing for me and I want to share them with my fellow survivors and their families. I am almost 6 years post-stroke. I have left side hemiparesis. Lately, I've been exercising more(walking and exercise bike),stretching out my arm and hand more regularly, and getting better sleep. Also, I am FINALLY on a cocktail of antidepressants that seems to be working for me. Recently I have been able to use my left arm and hand more (for assisting the right hand; I'm right handed) and I am able to relax Mr Lefty (as I affectionately refer to my left hand) more and am able to attempt and sometimes succeed at doing things with my left hand that my PTs and OTs used to urge me to do but I just couldn't seem to do it, and gave up trying after a while. Anyway, I wanted to encourage folks that this recovery thing is a LONG term process and to never give up hope...I certainly had.