Back to the beginning
July 9, 2008
So, in previous “The Beginning” post I spoke about the very beginning when I first noticed something was wrong, but not quite ready to go to a doctor. The saga continues.
In addition to my legs not working right, etc, I felt very tired. My hikes became shorter, I traversed easier trails because I would lose my breath, I felt tired, very tired. I would even say fatigued. Then several times heading home with my dogs I passed out while walking. Opening one eye I spied a sloppy, drippy pink tongue lapping my face. Then a petite bubble gum tongue. Then a sloppy, drippy tongue. My lab, followed by my dachshund, lab, dachshund. You get the picture.
During a family vacation to Maine, I passed out while we were exploring a jetty. That was when I told my hubby about the times with my dog. That Monday I went into my pcp’s office. Well, being in an office with about twelve other docs, I actually saw a physician assistant. He did a few tests: follow the finger, lay down take BP (blood pressure), stand up take BP. All seemed fine. I told him about losing my breath while hiking, that I felt tired. He set me up with an EEG and a halter monitor to check my heart over three days.
I followed up with my actual pcp. The results were normal, of course. My pcp, I’ll call him Dr. Callous. Dr. Callous told me I just needed to get in shape, more exercise. Granted I was not a skinny minnie, but I was not overweight. In fact, I told him theses events were happening while hiking, that I actually had to REDUCE the intensity and length of these hikes. While grabbing the door knob, he nodded that patronizing nod and left. Moronic callous idiot.
Several weeks later I landed in the hospital. On a family drive through the country I passed out behind the wheel. YES, BEHIND THE WHEEL WITH MY HUBBY AND MY SON IN THE CAR. I know, scary right. Well, we took off the top to our Jeep Wrangler Unlimited and hopped in for a Friday night joy ride on some pretty small back roads. I drove. I love that Jeep. And we drove. After about two hours we pulled into a dirt parking lot of a small ice cream stand.
The great thing about Jeeps is that owners form a bond, a brotherhood so to speak. There is the Jeep wave as you pass another on the road. Or, as we experienced at that ice cream stand another family of Wrangler owners came over to chit chat. It was a nice hour or so just passing the time.
Dusk set in and we took off for home. With the top down and the heat blasting we made our way on these back roads. I was driving into the setting sun for awhile. Then on a road meant for one car, literally, I felt my system shut down. That is the best way I can describe it. It is like someone hit the “restart” button on my computer.
I immediately pulled over put the car in park, just as I went out. Faded to black. Faded to black in a weird way. From my peripheral to my center I felt everything shut down. Then just as quickly everything came back. Everything you say, yes that is how it felt. My vision, sense of feeling, heart, consciousness. SCARY!
Scary not just for me but for my family as well. Being about and hour and a half away from any civilization my hubby helped me into the back while he took over the driving duties. Not to scare our son, my hubby and I downplayed the situation. But, by the time we got home I was beginning to feel better; although, extremely weak. EXTREMELY WEAK.
No, I did not go to the hospital then. But over the course of the next week and a half I had similar experiences. Including slurred speech, numbness, incoordination. Basically, everything but the passing out part. During the third episode hubby drove me to the hospital. Enough is Enough he said.
This is where the story gets interesting.
Chemo Follow-up
July 6, 2008
Now six weeks since my last Cytoxan infusion, I feel pretty. I continue to strengthen, awaken back to normalcy. Not just in body, but mind as well. No longer am I in the “Chemo Mind” (routine of mentally preparing for the next infusion, while tolerating the ever overwhelming accumulation of physical fatigue). I walk among the living.
Feeling like I emerged from a cave, my year long retreat, I enjoy each moment. Thanks to the Cytoxan, my docs, the chemo nurses, all who walked this path before me, my hubby, my son, my mom, my sisters, my brothers, my friends, the kindness of strangers (Hey, I could go on forever-but I won’t) I FEEL BETTER. STRONGER.
I know there is a disability scale, but I never asked where I was on that scale or even how it worked. I didn’t need a scale to tell me how I was doing. Living life told me that. As a result I don’t know numerically how much I improved. Again, I don’t need a scale of arbitrary numbers to tell me that. I improved greatly in every area except spasticity as evidenced by my past and future posts “Chronicles of ITB Pump”.
To give some taste of where I was before the chemo. I have exactly twelve steps to climb from my first floor to the second floor where lies my bedroom. I could not climb those stairs without my husband. We were making plans to convert formal living room into my bedroom. Not a big deal really, but considering that only two years prior I was taking those steps two at a time even at midnight after awaking at 5AM that morning, it was a BIG DEAL.
I could not touch my nose. My index finger landed on my face, but not my nose. Why is this a big deal? Well, because that was just a test the doc performs to analyze coordination. Do you know how much coordination it takes to shower, get dressed, walk, eat, prepare food. I think you see where I am going. All these tasks were problems for me to complete.
Walking was a big problem for me. Using two forearm crutches and awkwardly uncomfortable (putting it mildly) plastic ankle foot orthotics(AFOs) barely enabled me to get around my house. Whether I parked in our under house garage or in our driveway, a mountain of stairs stood between me and my house. Now, even though spasticity is an issue, I have the strength to tackle that mountain.
The end result is this: My quality of life, my family’s quality of life has markedly improved. My health in general has Greatly Improved. Even my blood pressure which pre-MS was “perfect” (docs told me) to post-MS on the “high side” (again docs told me-nothing to worry about considering) to post-chemo is currently “normal-perfect”. GOOD STUFF!
Multiple Sclerosis Walks and Bike-a-thons
July 3, 2008
I understand that money needs to be raised to finance research for Multiple Sclerosis: new meds, cause of MS, etc. But, I have PPMS (Primary Progressive Multiple Sclerosis) for which the National Multiple Sclerosis Society seems to finance very little research into any disease modifying drugs.
I know that only 15% of PwMS have PPMS, but if there are 400,000 people diagnosed with MS in America, that means 60,000 of those are diagnosed with PPMS. So for many years these 60,000 including myself were and are told that we don’t really matter. Putting a smile on your face with a positive attitude doesn’t really cut it. I mean within one year of symptoms appearing I was (and still am) walking with forearm crutches. In fact, a wheelchair was waiting for within two years. Luckily, my docs offered Cytoxan (still an experimental drug for treating PPMS). I took it, and it helped.
THERE IS NO APPROVED DISEASE MODIFYING DRUGS FOR PRIMARY PROGRESSIVE MULTIPLE SCLEROSIS. So where has all the money gone. To Relapsing Remitting Multiple Sclerosis of course. After all 340,000 people are affect by RRMS.
I participated in exactly one MS Walk. The first year my sister was diagnosed with MS. I rallied the family, learned how to fundraise, organized and orchestrated our team. That was when I could walk. I watched my sister steadily decline. Unsure whether she had RRMS or Secondary Progress (SPMS), docs put her on Copaxone. She did well for awhile.
The following year my other sister was diagnosed with RRMS. She had one brain MRI. She was lit up like a Christmas Tree. No lumbar puncture, no evoked potentials, no brainer-RRMS. She too was put on Copaxone. Meanwhile, I was trying to get diagnosed with something so that I could receive treatment.
See the dirty little secret is that along with no treatment for PPMS, it is very difficult to get the NMSS to speak about PPMS. After all, how many dmd (disease modifying drugs) does RRMS need?
So this brings me to MS Walks and Bike-a-thons. It’s great that so many people with MS can participate in theses events. There are so many cannot participate. We don’t need someone else to do it for us, that happens often enough as it is. We, PPMS’ers, need help with daily activities as it is.
Why doesn’t NMSS sponser fundraising events in which everyone can participate? As my husband says, “Having a Walk for people that can’t walk, is like having a drive-a-thon for those who cannot see.”
Atypical Multiple Sclerosis 