[PegMeerkatz]

Hi, my name is Peg, I am new to this forum.

I am 48 years old (49 next month) & I have had MS for over 25 years. It became progressive probably about 2 years ago. In the prior 8 years I had frequent relapses; the worst in 2002 that left me with significant cognitive & mobility problems & I had to retire.

I have exhausted ALL MEDICATIONS; I built antibodies against some; had allergies to others & never having gotten any relief from any of them I REFUSE to take any of the new medications. A medication has to be "out there" at least 3 years before I touch it, I DO NOT want to be a "statistic".

OK so here is where I am at; in January 2010 I moved in with my mom. It was partly financial but I really was left with few options. Social Services felt I was not safe living along. It MIGHT have to do with my getting "stuck" in bed several times (I got in a position I COULD NOT get out) or MAYBE it was because I kept doing "dumb" things like leaving the oven and/ or stove on; locking myself out etc. Or, one more thing, maybe it was all the falls... I almost broke my neck in one fall; herniated disks in an area the doctor said just a little higher would have stopped my breathing. Another fall I fractured the little bone at the end of the sternum called the xyphoid process. I also was starting to look like an abused child from all the bruises, bumps & scrapes.


It took me a long time to accept that I had MS. When first diagnosed I went back to school, completed college got an advanced degree (all while in a wheelchair). I then embarked on a career as a subtance abuse counselor working with MICA (mentally ill chemically addicted) patients. Because of my experience with "the system" I devoted my career to working with underserved populations; homeless, mentally ill, those abandoned in nursing homes. I had an opportunity to work in some of the worst areas of Queens NY; it was an "experience"; hard work but rewarding.


After 9/11 I was chosen to head an aftercare team for first responders but I was only back @ work 5 months following an MS relapse that kept me out of work 4 months. My neuro said it was an honor for me to be chosen but I needed to decline because he did not feel my health could take the stress or adverse conditions in the area.

I became a supervisor for an aftercare team in an adult home in one of the worst areas of Queens (South Jamaica).


The MS which NEVER let me forget it was there over the years became VERY ANGRY at the promotion & added stress; within a few months it seemed as if the MS was winning again.

A cousin who lived in Jersey had a rental condo that was empty & she offered me the opportunity to rent the condo for a year with the option to own. Though I never lived outside of NY this seemed like the change me & my MS needed. I went to Jersey before the move & secured a non supervisory position. I was working in a Detox/ Mental Health Ward in a hospital in Trenton. I thought a regular job with a regular schedule was what me & the MS needed. Instead I found myself assigned to the 3 pm to 11 pm shift. VERY OFTEN staff that was scheduled to come in @ 11 & work the overnight WOULD NOT show up & I would be MANDATED to work overtime. Sometimes the patient population demanded that more staff was needed on the morning shift & I was MANDATED to come in for the shift before my shift then work my shift. Needless to say the MS DID NOT react well to this.


I soon found that the MS Fatigue was overwhelming & the more tired I was the weaker my legs were. Within 2 months of taking the job I found myself unable to get from the staff parking lot to the hospital without using a folding cane (would want anyone to see it - you understand). That DID NOT work for long I was soon needing to ambulate the unit holding onto the walls. I started noticing subtle cognitive changes; I could not memorize patients charts or stats like before & began relying on "crib notes". Then I had a "needle stick" (no lasting effects) when I was drawing blood & my hands did not go along with the process. The end came a short time later when I was leading an educational group & a fight broke out among some patients. While participating in the "take down" I fell & COULD NOT get up. Staff came to my aide but I was declared "unsafe for the unit" & let go.


I was determined not to give into the MS; no hospital & rehab for me. Soon the MS took over & I began experiencing swallowing difficulties. While having lunch with a friend (who was fortunately a nurse) I choked on food, after doing the Hemlich manuver she took me to the hospital. I did the steroid thing then they decided to try me on Avonex. At first there were no ill effects but then my blood count became dangerously low. Ultimately my immune system "shut down". I had to be kept in isolation to prevent infection & spent 2 weeks undergoing plasma pharesis. From there I was transferred to a rehab where I spent the next 3 months.


I needed a rollator walker when I left the hospital & a scooter for longer distances. This posed a BIG PROBLEM because my condo was on the 2nd floor of a walk up. I developed a plan where I would do what I needed in the condo then make my way downstairs to do what I needed in the community. I had to time my "community trip" to cooincide with when the mail came because I would NEVER be able to make a 2nd trip up & down the stairs.


I moved back to New York (Long Island) & was started on Rebif. Over the next 2 years I regained much of my strength & while I still required the scooter for long distances I could most often ambulate short distances without any assistive devices. 17 months after the relapse in Jersey I had another "mild" (by comparrison) relapse that mainly just affected my vision. I was started on steroids. Always prone to High Blood Sugar this time after the IV then Oral Steroids my sugar remained high. I started taking oral diabetes medication.


28 months after the Jersey relapse I started experiencing "odd" symptoms & was weaker & more fatigued. Tests showed that I had developed VERY HIGH LIVER ENZYMES. I was taken off the Rebif IMMEDIATELY. The fatigue & particularly the cognitive problems & extremity weakness began to increase over the following weeks. I was put on Copaxone & had a VIOLENT ALLERGIC REACTION.


From the time MS medications became available (years after I was diagnosed) I had been on this medication or that - we were at the end. I was offered Tysabri but felt the RISK OUTWEIGHED THE BENEFIT.


Late 2007/ early 2008 the Cognitive Problems were getting really bad & the mobility problems were getting worse. I started experiencing pain several times a week which was diagnosed as "neuropathic" pain. When the pain became more frequent I was hospitalized & put on IV Steroids. During my stay in the hospital I was on insulin because my sugar was as high as 620 at one point. I was assured when I left the hospital & was off the steroids I could return to taking oral diabetes medication.


I REFUSED to go to rehab from the hospital for several personal reasons. I left the hospital weaker & more cognitively impaired. From that point on I continued to get progressively worse & finally the neurologist (after several tests) concluded that the MS was becoming progressive. Comparing brain MRI's I not only had SIGNIFICANT SCARRING but brain atrophy as well. Then to boot the oral diabetes medication DID NOT control my sugar & I had to go on Insulin PERMANENTLY. I had complained about taking Rebif 3 TIMES A WEEK & NOW I NEED to take Insulin 2 or 3 TIMES A DAY NOT TO MENTION ALL THE "FINGER STICKS". (I do not believe in god or a higher power but this certainly has to be "karma").

FAST FORWARD... by SEPTEMBER 2010 it was OBVIOUS I was having SIGNIFICANT PROBLEMS living alone even with in-home help 49 hours a week. The decision was for me to move in with my mom. She lived alone in a 2 bedroom condo (her husband died almost 4 years ago). The master bedroom, with the attached bath & walk-in closest was fixed up for me. This is where I spend the greater part of every day; sitting (or laying) in my hospital bed; with my laptop & of course the boob tube.


I was given a motorized wheelchair in January but first the wheelchair lift on my adapted van broke then the wheelchair broke; still trying to get someone to pay for repairs (long story). I can get around somewhat as long as a lot of walking IS NOT involved or my destination provides motorized carts for the disabled. Getting in & out of my adapted van is a bit tricky. I bought a wooden stepstool at the craft store & attached a wooden dowel to it. I step up on the stepstool & into the van. I hold onto one of those "gripper" things that fits in the door. I can get all but my left leg in the van for that I have a "leg lifter". I then use the end of the "gripper" to pull the door closed. If I lean to pull the door shut I will fall out.

THE MS IS WINNING THE BATTLE.

I have 24/ 7 CHRONIC NEUROPATHIC PAIN that has not responded to ANY medication. If the pain scale went from 1 to 20 instead of 1 to 10 it WOULD NOT be sufficent enough to measure the pain I experience MOST DAYS. My sleep is ALWAYS BEING INTERRUPTED.


The COGNITIVE PROBLEMS ARE REALLY BAD. On a good day I have 2 BRAIN CELLS THAT WORK on a BAD DAY (most days) THEY DO NOT WORK TOGETHER. I can get lost driving around the corner. I live in a unique looking building that is visible for quite a distance. Some days I can right in front of it & wonder - where do I live? One day I put Ice Coffee in the freezer so it would get really cold. Mom went to get it for me later & found my car keys in the freezer with it. Most recently I lost one of my home phones (I have 3) I looked everywhere & was unable to find it. A couple weeks later I went to get some Goldfish Crackers as a snack - THE PHONE WAS IN THE BAG OF GOLDFISH CRACKERS. (I never did find my cell phone which I also lost). There is a PLUS SIDE I DO NOT remember "faces" anymore so EVERYONE is a stranger to me - I am always meeting new people.

Mom & I have an ongoing issue. I CANNOT get her to understand that if she asks me to do "A", "B" & "C" I will PROBABLY do it. But is she asks me to do "A", "B" & "C" as part of a lengthy complex conversation I will PROBABLY have NO CLUE in the end what she asked. Yesterday I needed to make a joint appointment for us. I simply asked what days she was free next week. She DID tell me but she also told me about her plans for the NEXT 4 WEEKS & her PLANNED VACATION IN MAY. After this 20 minutes of mishagosh she said "now you know when I can make it right?". I HAD NO IDEA. But (as usual) SHE GOT ANGRY WITH ME!Whatever!


I am single & childless by choice. I never imagined @ 49 years old given this decision I would be changing diapers (especially not my own) & packing a diaper bag before I leave the house.


14 months ago I again developed swallowing problems. This time they HAVE NOT gotten better. Again there is a PLUS SIDE I was VERY OVERWEIGHT & because I now CAN'T EAT MOST FOODS I LOST OVER 80 pounds! I have not been this thin since High School. Many days my "swallow" DOES NOT work & even when it works it DOES NOT work 100% & my sense of tast IS NOT "right".


I also have problems with my speech & when I am on the phone people OFTEN mistake me for a male. I called the MS Society & asked for Gene they said "she isn't here I will give you her voicemail" I said "No, Gene, "he"" again they said "she" is not here & connected me to HER voicemail. I called back & the scenario began to repeat itself I FINALLY had to spell it G - E - N - E. The secretary said I need to speak more clearly - WHATEVER! People I speak to on the phone that know me & know that I AM NOT a male OFTEN ask me if I have a cold or they question my sobriety (I DO NOT KNOW WHICH IS WORSE). The best is when I am looking for something, say a pen I can go into elaborabote detail about what a pen does but CANNOT "find" the word PEN. Sometimes thoughts are in my head but DO NOT make it out of my mouth correctly. I get so ANGRY sometimes because I know what I want to say but CAN'T say it.


After the Jersey relapse I started having REALLY BAD ANXIETY ATTACKS & QUITE A BIT OF SOCIAL PHOBIA. In 2006 I got a small dog (11 pounds) & had her trained as a Service Dog. When I had to go on Insulin & the diabetes got worse I OFTEN DID NOT test my sugar often enough. She was taken for more training & became a diabetic alert dog. Most recently she has learned some MOBILITY TASKS. I often would go over a curb NOT seeing it now she STOPS ME. If I walk in the middle of an aisle in a store I risk falling; she guides me to the side of the aisle & MAKES me walk along the edge. If a stock person comes up behind us & I DO NOT hear them; she does & guides me out of the way.ESPERANZA IS MY LIFELINE. Her name means HOPE. The watchword on the MS Band when I got her was HOPE, that is how she got her name.


Sadly there are A LOT of people (including the police) who are unaware of Service Dogs PARTICULARLY SMALL SERVICE DOGS & I have face MORE THAN MY SHARE of DISCRIMINATION & EVEN ABUSE.

I started a campaign to raise awareness of Service Dogs PARTICULARLY SMALL SERVICE DOGS. Then I faced DISCRIMINATION (because of her) as well as ACCESSIBILITY ISSUES here @ my condo. IN THE END I WAS VICTORIOUS BECAUSE I KNEW THE LAW & HOW TO ENFORCE IT.


I began to realize how many disabled people are either UNAWARE of the rights afforded them or they are UNABLE or UNWILLING to take steps to enforce them. Hence the quote "Our lives begin to end, the day we become silent about things that matter". We as disabled people need to SPEAK UP when things ARE NOT "right" or as they should be - this is the ONLY WAY that change will occur.


I am in the process now of forming a non profit that will be a RESOURCE HUB for DISABLED PEOPLE. Additionally I & others will be giving educational lectures on Service Dogs, Disability Ettiquette, Accessibility etc.; I call my "project" EsperanzaEnterprises. Forming this non profit has been the first thing that I have really taken an interest in or been passionate about since retiring.


That is ME - THE GOOD - THE BAD & THE UGLY!


I wanted to let everyone know WHO I AM, WHERE I AM, WHERE I CAME FROM & WHERE I AM GOING but I PROMISE FUTURE POSTS WILL NOT BE THIS LONG


Looking forward to speaking to people in the forum; have a good evening.