Hi Deb, You have been on quite a journey! Thanks for sharing about your pump experience. My hubby has asked me a few times if I should look into it after I told him about Rob's success.
I now refer to my work status as "retired due to disability". I'm 63, but like most, I would be much better off financially if TM hadn't forced me out of the work force 10 years ago. I really know how you feel about giving in and crying uncle. It's hard to say, "I can't do that anymore". I didn't miss the routine since I couldn't have done it physically or cognitively, but I missed my customers and coworkers. I find enjoyment in being a homemaker. I like having my hubby walk in the house and tell me supper smells good andI I am happy to be able to keep up with the laundry. Small accomplishments feel good. Housework and yard work are my daily exercise. That is my final answer when my doctors ask if I have an exercise routine. I answer smugly, "Yes, I do all my own housework and yard work." Enjoy your days away from work. You won't believe how good it feels to have time to do things. Patti - Michigan > On Nov 4, 2013, at 12:35 PM, Deb Monteleone <[email protected]> wrote: > > Hi all, > > Wanted you to know that I am no longer working. MS got the better of me > after a long and tough battle. I just can’t do it anymore; the pain, > fatigue, cognitive issues and quality of life won over. They made me say, I > don’t care how the bills and health insurance will get paid; I just can’t do > it. > > Those of you that really know me, realize how hard it is for me to say I > can’t do something. > > I know the last update was a while ago but I figured I’d wait until I knew > something fairly final. Here is an outline: > - Shingles (on belly) decided to get in the action, only good thing > is my Neurontin pain medication made it less painful. Although it still woke > me up once or twice and threw some extra pain in during the day. I found it > just soon enough (just past 72 hours) to take the medication for it so it > didn’t get worse. > - Had pain pump put in June 5th. > - The Medication put in was the Prialt, snail venom, or as I like to > call it escargot juice J. > o This process took forever as they increase the amount very slowly. > o Gave me allergic reaction to band aide adhesive. No more cuts for me J! > o I had my first hallucination ever, content wasn’t scary but realizing I > had it sitting at my desk, that scared me. > o Had a psychotic episode with my Neurologists answering machine. Thank > god that was on the day he turned it way down to remove the next day. > - Next medication was baclofen which I was taking orally. We finally > found the correct dosage. No more oral pills! > - Now onto Morphine. It was late Friday October 4th (yes still > working on getting pumps meds correct since June 5th J ) and I was finally > hopefully going to get some pain relief from the 1st dosage of morphine. > Well, after many pokes, x-ray and sonogram it turns out that the pump rolled > over. The port for meds was facing inside me. Now tell me, how did I do > that J? > - How to get surgery in 12 days. > o The surgeon’s assistant was great, by Tuesday I had a CAT scan, appt with > surgeon Thursday, hospital pre-op Friday and surgery the next Wednesday. > o In addition, that same busy week I had a brain MRI, brought in sample > which ended up positive for UTI Friday before surgery. Started antibiotics, > spoke with surgeon who said he could still operate as long as antibiotic had > a few days to start working. Yes!! > - Surgery on Oct 16th went well, combo of baclofen and morphine were > put in. Maybe some relief in sight. > o My on-call nurse ‘Mom’ took me for the surgery then cared for me at home, > this was not her first nursing gig with me, it’s our quality time J. Thanks > Mom for being such a good one. > o Got home, needed cane to walk in house as my balance was completely off. > Got better over the days. No one said this might happen, what the #%! > o It did remove the very sharp tips of the pins and needles of which I am > grateful for. > o My goal is to be able to wear socks and not have my pants hurt either. > - Even with the tips of the needles gone I just couldn’t take > anymore, my body and brain had given their all. I had been looking into > disability for a few weeks, after speaking with benefits at work it was > decided Tuesday morning, finalized Wednesday that Thursday would be my last > day. I do things quickJ, it was nice to have all 60+ employees together to > say my good byes to. > o They helped pack up my desk with a cart and two trips to my van. > o My feelings about this part have not settled yet but I know in my heart > it is what I need to do. It’s time to concentrate on my health. > - After leaving work, it was off to the Doctor to increase the > morphine a touch. Can’t yet tell if it worked since I am still paying for > way over doing it packing my desk and saying goodbye. Then Friday night > carried my scooter battery upstairs to charge it for a seminar the next day, > it was 1:00 am and all in the house were sound asleep, how bad could it be, > legs thought differently. Never made it to seminar, oh well. > - Here I sit Sunday afternoon, still paying for my dastardly deeds J. > November 26th I receive a pump clean out and refill, this will enable them > to increase the morphine more while keeping the baclofen as is. > > I see myself taking a month or two for my body to build up, sit and sort > through papers and such. Then I want to create a routine which includes time > for daily exercise, stretching, Pilates or yoga and time for some sort of > meditation. I’ve had ideas about writing two books, even if I never try to > publish them. The writing alone would be fun yet challenging, I had started > a while ago by jotting down thoughts here and there. For those wondering, > one would be about my journey with MS and the other about Aikido, my view of > what it has to offer, some thoughts on basic general concepts and how it > helped with MS. > > I will hopefully be able to help my wonderful Gene with some chores. He has > done too many things by himself for too long. In a few months, don’t know > how many, he might find a home cooked meal waiting for him when he gets home > from work. Work he took on at retirement age to help with health insurance > and bills so I would feel more comfortable stopping work to care for myself. > I should be able to help with laundry very soon. Every little bit helps. > > Winter is coming, pray next dosage is enough to let me deal with wearing > socks. > > Make it a great day, > Deb > >
