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Profile of the Month: March 2004
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The profile of the month is chosen by the MSIF editor from those submitted.
Karina
Email: Email Karina
Year of diagnosis: 1999
Occupation: Investment Area Assistant at a Pension Fund Company
Type of MS: something between progressive-relapsing or worsening relapsing-remitting
Country: Chile |  |
“Life isn’t later or in a while.
Life is NOW.
So let’s try to make it as pleasant as we can
at THIS precise moment…”
MS... Just two letters that involve so much...
Back in 1999, I remember being diagnosed with an odd disease that sounded like arteriosclerosis or something like that. Wasn’t that an old people’s disease? I was 31 years old… I remember my doctor telling me the only available treatment was about US$1,000 a month… Where was I going to get that from? At that time, I worked as a secretary, I was divorced… my wonderful daughter was 4 years old… My wealthy father, whom I had no contact with at all, was going to have to help me, so I wouldn’t have to be restrained in a wheelchair. He consented, but only for a year and a half.
During that period, I knocked on every MS door… I sent letters to the President of Chile, the Minister of Health, had meetings with the Superintendent of Private Health Insurances, at the Ministry of Health, appeared on TV, newspapers… That was like hitting my head against the wall over and over again. My year and a half period passed and my father refused to continue paying for the treatment. It was a sad and desperate period, until I decided that maybe it was God’s decision, that I didn’t really need it. I became a vegetarian, followed a strict macrobiotic diet, took every natural prescribed cap, but five months later had my second relapse. My MS had turned aggressive. I started having relapses every 3 to 4 months.
By that time I had joined the Chilean Corporation of MS. I was a member of the board of directors and fully dedicated to obtain from both private and public health insurances at least some insurance cover for Interferon in my country. The battle started for a personal motivation, but soon extended to anyone with MS in Chile. Meeting other people with MS in a much worse condition than mine made me value even more everything I had.
I wrote the first issue of the EMisario Magazine, to which I devoted myself… Even now I cherish it as one of my best creations. I had to act as a journalist, translator, editor, and photographer… It was fun, but time and energy consuming. One lab sponsored 1,000 samples and it was a complete success. But when number two was done, there was no budget for it. (Things must be done when you have the chance…because you may not have it later). I went to the Melbourne Biennial Conference of MS in 2001 representing Chile and proudly sat with the Wolfensohn Award winner who happened to be Chilean. One of my dreams in life was to go to Australia, and… MS made it happen… It was a blessing.
While volunteering for the Chilean Corporation of MS I got sponsorship in the company where I work for the “Duet for One” play by Tom Kempinski, performed by two famous Chilean actors (though it did not get on). I edited the first issue of the EMisario Magazine, I actively researched about MS, translated every interesting or wanted article or document for the members of our society, attended a lot of meetings which sometimes were endless and even discouraging, etc… Until I decided it was about time to leave.
These things may not sound too much, but each achievement was so hard to get, each appointment so exhausting that it was very tiring and too often frustrating. At least I set precedent among health insurances and some people keep on with the battle.
Meanwhile, I still worked from 8.30 to 18.30, I ran a house, dedicated to my daughter as much, and as good as I could… and returned to treatment after having to sue my own father. That wasn’t emotionally easy, but it legally was. So little effort and time, I could have done that before and avoided somehow the progression… but I wasn’t humble. I wanted nobody to help me financially except my father to whom money wasn’t a need. That taught me a lesson of life.
I had to learn to inject myself first intra-muscular, then sub-cutaneous and even with a “hara-kiri gun-like” device, as I call it. I started chemotherapy and that caused me early menopause (it is rare but it did to me). I wanted soooooo badly to have another child. Well I guess that isn’t what God had planned for me. Now I understand why my delivery was so natural and why I could even breastfeed for a year in a row. I had optic neuritis on my right eye and panicked I was going to become blind, but besides small bright spots on it, I have a good vision. I have bladder and bowel problems, which I treat with pills and “denial”… Experienced rare symptoms like dysgeusia (taste alteration due to demyelinisation). I treat fatigue and some cognitive problems without too much success, and had numbness and tingling sensations, always on my left side including loss of strength. I have always had invisible symptoms, besides my writing and now some heaviness and unbalance to walk and move that worsens throughout the day. I still don’t get that “Unbearable Lightness…” by Kundera J.
One day I went to work and was hospitalized on the next day, assuming there was something wrong, as you start to sense it, and confirmed with MRI’s. There were always new active lesions in my brain and / or cervical stem.
My daughter had barely ever noticed a thing, so it was difficult for her to cope with it and understand. She knew I went to the hospital for treatment, but never understood why I got out feeling worse than when I was admitted. She started hating every hospitalization, though she had gone with me to MS meetings and saw other people’s situation. She was in complete denial. Everything was set for those occasions (and still is)… My Mom, supportive, caring and loving as usual, comes home overnight(s) to take care of her so there won’t be major changes in her life. The same happened at work with my colleagues, bosses and friends… One day I was there “ok”, and hospitalized on the next day.
I became obsessed with MS. I experienced something and looked for it in the Internet right away until I found it. There was a site dedicated to PwMS with invisible symptoms! It described me, and many of my MS friends perfectly. I had counted on permission to translate many articles from the time I was the editor of the magazine, so I translated it into Spanish. Though my doctor had told me not to research so much, because many symptoms may be triggered psychosomatically, he was glad I found that article and even asked me to have copies made for his patients.
My job has been essential in my positive attitude. I love it, it is good for me, it keeps my mind busy, it makes me feel important and the icing of the cake is that I am surrounded by a team of caring young men who make me laugh a lot, flatter me and always treat me kindly. I assist the investment area at a pension fund company. I have always taken good care of my job, and that has included avoiding medical leaves as much as I can. This is why I have gone almost immediately after any hospitalization directly to work, sometimes acting like superwoman. I have even gone to work exhausted, fatigued, weak, with high temperature, with a terrible sensitivity to the light of the computer’s screen and once recovering from my left hand’s numbness (I am left handed), which made me practically have to learn how to write again, among other symptoms. But I always smile, I am always concerned about other people, I always feel grateful and try to inject other people with that “carpe diem” feeling.
My MS didn’t slow down. I had to start hospitalizing once every two months, so one day I decided, of course supported by my doctor, that I had to make a dramatic change in my life because by 4pm I was completely exhausted. I really couldn’t do it any more… I rose out my situation at work, explained how I had felt many times, what my symptoms were, what was going to be my treatment from now on… and told them my intention was not to stop working, but to do it half day. Well, miracles do come true…The Company where I work in is going to hire someone to learn what I do, so whenever I go to the hospital I won’t have to worry about it. Moreover, they allowed me to work from 8.30 to 14.00… I feel so blessed… This kind of things is not common here in Chile, but they said to me I deserved it because of my unconditional loyalty and permanent efficiency in the company.
Regarding love… not every person will accept what involves being with someone with a chronic disease like MS. So I have been wrong about some men. It is difficult to keep a good self-esteem with a situation like this. You may accept many things thinking you don’t deserve something better… But instead of getting down, I’ve learned to proudly keep my chin up and never let anybody disqualify me. When I decided not to think about it anymore, someone came to me… I wasn’t looking for anybody… I guess God sent this special man to my life…
I have become an ambassador of MS. Whenever someone asks me about my disease, whenever I have the chance to tell someone about it, I surely do it… That was one of the Chilean Corporation of MS’s goals… People had to learn what it is… And I still “wear the T-shirt”, as we here say.
They used to call me spinning top, because I was able to do many things at the same time and in a short period of time. I was the brawniest at home… the one that could easily open cans and jars… the energetic one; the one that exercised 90 minutes daily with Jane Fonda’s Challenge video; the one that could study, watch TV, talk on the phone…all at the same time. Now I feel as if my mind had stretched and narrowed. Now I even have to grant some time to think about my basic needs, which I didn’t have to do in the past. I began to learn to save energy if I need to do something later; I had to learn to listen to my body if it tells me to stop… I have to learn to slow down. To always carry a notebook, because I can suddenly remember something. And it is difficult when you haven’t been a “stays put person”… When you have always been used to tire yourself out with no special concern.
It is as if God had told me to slow down. And I have gotten to the point where I enjoy everything. I don’t need to go out. Just being with my daughter (mi lucesita), watching and listening to birds out of my window, the wind, beautiful music… staying at home, which I’ve made such a cozy place to stay in (rented of course). Even debts are not a matter of concern to me anymore. I spent my last holydays in Disney World with Nicky, which I couldn’t have done now because of my fatigue. I’ve learned to stay calm when I get into debt. I will manage later somehow. As with everything in life… All bad things pass. People get used to anything. There’s a process, it may take some time, but it’ll pass and you’ll see it already happened.
How wonderful it is to have the opportunity to live.
How blessed we all are.
Everybody take care.
Karina
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