ARCHIVE # 4: 554 ARTICLES (NOV -SEPT 2006): A NEW DAILY FEATURE: A LETTER OF PERSEVERANCE.....FRANCINE FROM THE PHILLIPINES

Hi Stan... =)

My name is Francine Drilon and I’m a 32 year old kindergarten teacher In 2003, I was diagnosed with Multiple Sclerosis. I want to thank you profusely, for allowing me to join this group. I’m from the Philippines and we don’t have a lot of information about MS in my country. Whatever I’ve learned about MS, I’ve gotten from my doctors and the internet. As far as I know, we only have one MS support group. I’ve called them twice, and I was told that this small group meets once a month to socialize. There is no information dissemination of any kind, no networking or actual “support”.

I look forward to reading the blogs and articles even though most, if not all, the (new) medication and therapies (sometimes discussed), are not available here.

My battle with MS started with a sore pain in my wrists. I thought it was because I was spending too much time on the computer. The pain didn’t improve and I was beginning to worry. I thought it was Carpal Tunnel Syndrome. After a few days, I started experiencing the same pain on both feet. I was beginning to limp and that’s when I knew I needed to see a doctor. I went to Saint Luke’s Medical Center. After a few minutes of the usual Q&A with the doctor, she said I needed to see a neurologist. I thought, “What?!?! A neuro?! Isn’t that a brain doctor??! I need a brain doctor for sore wrists and a limp?! What’s going on?!” I made an appointment with the neuro and saw him the next day. He asked me more questions and gave me a long list of tests I needed to go through. He said he would wait for the results the same afternoon, and then decide whether I needed to be confined. I said to myself, “Ok, let’s do the bloody tests and get this over with!” I was in pain and the pins and needles sensation was beginning to advance towards my legs.

The tests consisted of needle poking and what seemed like electric shock treatment! It was agonizing. I have a high tolerance for pain, but this was almost unbearable. I was OK with the whole idea of having needles injected all over my body, but I couldn’t bear the doctor’s hand on my skin. The slightest touch felt like I was being burned alive. There came a point when they needed to insert needles in my spine, but they hesitated because they knew I would shudder as soon as the doctors touched me. They said they had no choice but to attempt to insert the needle without touching any part of my skin. “Attempt?!” I, of course, dreaded the thought that they would miss and leave me a veggie. Needless to say, I survived that ordeal. The tests were over, but I was still in pain... After half an hour from the last needle poking, the doctor said I couldn’t go home yet. “Oh brother! What now?!?!” I had to be confined and more tests followed. The pain was up to my chest in a matter of hours. I got progressively worse. My hands and arms... my feet...legs... chest... and neck, all hurt like *#&$@#! I had difficulty breathing. It felt like I had a belt tightly wrapped around my chest. I couldn’t move from the neck down! Several neurologists and neuro-surgeons came to see me. They said I had a demyelinating disease. I asked them to pretend that I was a 5 year old and explain to me what exactly that meant. I was told that the myelin sheaths of my nerves were depleting. ”Hmm... How did that happen?” I had to undergo 3 MRI scans and more tests. I couldn’t walk. I couldn’t write or eat on my own. They said that I was hypersensitive, which explained why I physically ached when people spoke louder than a whisper. I ached when the lights were on. I was sensitive to touch, sight, and sound. “Wow! I had super powers!” If I didn’t experience pain, I could be related to superman!

After being hospitalized, a lot of steroids and a dozen other meds, I was finally released. Now I had to get Physical and Occupational therapy! I had to learn how to walk again. I had to learn how to write, feed myself, button my shirt, comb my hair, and do all the basic everyday functions I took for granted. They said I had to desensitize my nerves. I had to retrain my brain and convince it that all these actions were not harmful... not painful. My therapist would say, “Tell your brain... to tell your arm... to tell your hand ... to move this marble.” There was a moment when I thought, “Didn’t I see this in the movie Lorenzo’s Oil?!?!”

They made me dip my hands in warm paraffin wax, move items from one tray to another, practice with a pen, a spoon, a comb... They even made me dip my hands in a pail full of sand. They hid tiny objects in the sand and then showed me pictures of each object they wanted me to find (using my hands). I must tell you that that was difficult and excruciatingly painful. I cried because of the pain. I cried because I couldn’t believe that looking for a small car in a bucket of sand would be so hard. I felt so useless and helpless.

I had to stop working for six months and focus on getting better. I felt dizzy and weak. I experienced chronic fatigue. I had to sit on a chair in the shower while my mom bathed me. I couldn’t even shampoo my own hair! I needed a wheelchair, so working or going out with friends were totally out of the question. I stayed home, went to the hospital, and went back home. I suffered from insomnia. I couldn’t sleep and I stayed up till six or seven in the morning. I was hurting, frustrated, lonely, bored, angry, and depressed. The doctor told me early on, that there is such a thing as MS depression. They said it is due to the “unpredictability of the disease.“ I thought maybe, compared to cancer, with which we are more familiar with the stages and what to expect, MS is far different. We can be OK today... and then totally helpless tomorrow.

As soon as I started walking on my own, thanks to the steroids, I went back to work. Still feeling the pins and needles, still feeling weak and sore, I was determined to go back to my job and my students. Since there are no visual symptoms of MS, it was difficult to explain to people what I was going through. I was sick of answering the same questions about what was going on with me. I was tired of hearing, “Really? But you don’t look sick.” I wanted to say, “Do I need to lose my hair? Lose an eye? Lose weight? Gain weight? Sever an artery perhaps? ... just so you believe that I’m suffering from a progressive disease?” But I always ended up saying, “Well, what you see and how I feel are two different things.”

I worked from October till March of 2003. I suffered another attack come April, and then I was back in the hospital. Three more MRI scans and a couple of second opinions later, I was diagnosed with Multiple Sclerosis. They found lesions in my spinal cord. The doctors said that I should not take it lightly. “There is no known cure for MS”, he said. “The medication is given to address the symptoms, nothing more.” I took medicine for pain, nausea, insomnia, and even meds for epilepsy. My doctors suggested that I quit my job and consider a change of lifestyle. I needed to avoid stress. And since I live in a tropical country, the heat exacerbated my condition. They told me that I should consider moving to a colder part of the Philippines or another country.

As much as I wanted to give everything up... I could not. I told my doctor I couldn’t quit my job because I had no way of paying his doctor’s fee! I wouldn’t be able to buy my medication or pay for my other bills. “God! I would love to focus on myself for a change... but I can’t do that right now.” I did not have medical insurance, and it seemed as though I could only file for disability benefits with Social Security if I lost my head! We don’t get disability benefits that easily here. As long as you can stand, walk, BREATHE... you don’t get anything! I really had no other options but to teach again .

It is now 2006... And yes, you guessed it, I’m back to work. I teach 2 major subjects and 3 minor ones. At this point, I'm taking neuropathic anti-convulsants and morphine every 4 hours. I also take medication for my nausea and really strong sleeping pills prescribed to patients with Schizophrenia. I could be a stock holder of our local drug store! Hahaha! My neurologist and Pain Management doctor still suggest that I stop teaching and finally move to a colder climate or maybe look into a program for MS patients in the States. The heat weakens me and dealing with the pain and chronic fatigue is difficult. I'm still trying to improve my penmanship, but my walking has greatly improved. Each day can be agonizing. In fact, typing this letter is making my fingers sore. But, it’s nothing I can’t handle. I will not be defeated by this. I refuse to give up on living my life the best way I know how.

My father taught me, that in life, it is essential to make peace with one’s pain. I agree with my dad. I have made peace with the physical and emotional pain MS has given me. After reflecting on my own mortality, I have found many things to smile about each day. I find joy in seeing my friends every single week. I embrace each time they come to visit me for coffee laced with meaningful conversation. I treasure DVD marathons with my mom... and singing with my dad... or receiving little notes from my students. I value my alone time, which is when I can read about Gustav Klimt... watch the moon rise... paint pictures... listen to cello music or India Arie. I look forward to corny television shows and even pathetic ones! I can’t wait to take long baths... wash my hair... and button my shirt (even if it’s painful and tiring)... I get excited when I teach my Reading class. I get even more excited when I start preparing elaborate lessons about Henri Matisse for my Art class! I’m in pain... but I’m alive!

I have basic medical insurance now. Unfortunately, it doesn’t cover any of my medication or major medical exams. It only offers free hospitalization, if and when I need it. It doesn’t even pay for my visits to the doctor. I still have no disability benefits from the government. I still suffer from fatigue everyday, especially when it’s hot. I still feel the pain in my entire body. I get nauseated easily. My vision is getting hazy. My short term memory is starting to fail me. I still have those involuntary twitches which causes my hand to launch my spoon or pen into outer space! I still can’t sleep. It’s three in the morning now. But despite all of these and more, I continue to EMBRACE LIFE. I want to be the best daughter, friend, teacher, girlfriend.......and LOVE LIFE AS MUCH AS I CAN, FOR AS LONG AS I CAN.

After all, having this disease is NOT A DEATH SENTENCE... It’s simply LIFE MODIFIED. Thank you again, for letting me join your MySpace group. You have no idea how much you have helped me.

God’s choicest blessings to you... today and always... – Francine

Friday, November 10, 2006

A NEW DAILY FEATURE: A LETTER OF PERSEVERANCE.....FRANCINE FROM THE PHILLIPINES