Challenges

Life has always been a struggle for me. As a little girl, after laughing with friends while playing, I would get migraines that would not cease until I went to sleep. In third grade, my right ear was always itchy inside and paper thin dry mucous constantly covers the surrounding whole. It was so bizarre. In the back of my mind I knew something was wrong but I never mentioned it to anyone. I started kindergarten at four. At five years old I had to go to kindergarten again. When my mom told me I had to go to kindergarten again when I was six years old, I refused telling my Mom I already knew everything. So she enrolled me in first grade as a visitor but I was accelerated to second grade. I finished first grade with honors. I graduated in elementary with honors.

A few years after, another symptom came. I had this pain emanating from inside my right forearm like from inside the bone that came with weakness. The root of my thumb became swollen and it stayed permanently. I used to hit my arm because it was excruciating. It was an everyday ordeal. The headaches got worse. I would bang my head on the wall of my bedroom at times because of frustration. 

In high school, the headaches lightened up but I had eye pain. My Mom took me to an Optometrist who of course recommended that I wear glasses. The glasses never helped. I was doing great in all of my classes at that time except in Algebra. I have to admit that I was not too keen in Math so I always avoided it. As long as I can pass I was happy. This was senior year and I have been noticing that it has been taking me longer to study. It took me longer to understand and remember terms. To my frustration, I resorted to something really bad one day. Cheating. Yes, cheating,  although it never even crossed my mind before, I will do it because I felt like I couldn't recall what I studied. Just the thought of cheating was very scary to me. I had never done it before but I will do it because of 
desperation. So, before one of my exams I wrote some important terms in a magazine. To my stupidity, I used a very colorful AAA magazine and during the exams I used it as a writing pad. My 
favorite teacher who liked me a lot came to me and asked 
to borrow the magazine. I was caught and I haven't even used it! That was the beginning and the end of my cheating. Ever since then I wasn't her favorite student anymore. Albeit with difficulty, I managed to graduate high school with honors. Of course, it's not a big deal it's just high school but those will be my best years in terms of my memory.

Knowing my capability, I decided to take an easy preparatory course. I knew I could take any four year degree and proceed to Law School after. In my freshman year, I struggled with the classes where I had to memorize but I always had A's in practical classes. What didn't help were the unexplained debilitating headaches that occurred every day. But it wasn't so bad I passed all my classes. In my sophomore year, again it was a bit of a struggle. My headaches occurred every afternoon and never ceased until I went to bed. My 
eye pain was triggered by many things like face powder, eye liner, make up, mascara, hair spray or anything that I used when I wanted to look better. For example when I went to parties and wore eye 
makeup or hair spray I would end up being teased by our group because my eyes would be red. Each time after that I will have a debilitating headache.

Our family was planning to move to the US in 1982 and I was a sophomore in college at that time. And here comes my mom telling me that if I continue with my course she would not support me. She wanted me to study Dentistry. (In hindsight it's funny and I should've never done it) Because with a Law degree I can't use it when I moved to the US. She was right but don't we have a choice of what we wanted to be? Not in my family, especially us the 
younger ones. I've always been scared of my mom. I never even 
came to her with any of my problems. But I did what she wanted 
me to do. The next summer, I cross enrolled at a university where my friends go so  I can take some science classes for preparatory 
dentistry. Anatomy and Physiology for me is a very interesting class. I am very interested to learn about the human body's parts and functions. I studied very well. I was all prepared for the first 
exam,I thought. But while I was taking it I can't recall anything that I memorized. I couldn't write anything on my paper. I tried harder to  recall what I studied but my head hurts instead. I ended up guessing some of the questions. I failed that test instantly. I wasn't even aware I had degenerative cognitive issue at that time. I knew I studied very well and I was very prepared but I thought maybe I didn't do enough. So for the next exam I studied even better. I stayed up late every night studying. And fortunately 
the next exam was the same. I couldn't recall anything that I 
studied. I had a big problem. But I only wanted to keep it to myself. I was embarrassed or maybe too proud to admit it to anyone. Of 
course I will never be ready to tell my mom. 



I was lost. My professor who actually really liked me came to me and asked what was going on. I talked to him I told him that I was willing to make it better. But I cried my heart out when I got home that day realizing that things are not working. 

Next in class we dissected a cat and we will have  an exam on cat anatomy. Still I haven't given up I was confident that I could destroy that next exam. I used every minute I had to study, 
memorizing every part over and over and over until I was feeling nauseous. 

I came in early to class and was so ready for the exam. I told my professor to give me another chance and he was so willing to help me in fact I remember him being so fond of me. This time I studied 
very well. I came in very well prepared. Unfortunately when I sat for the exams and started reading the questions, I felt lost again, 
same as the previous exams. I couldn't recall anything that I ended 
up guessing. It was another fiasco. I had no other choice but to drop the classes I was taking at the university. 

I went back to my home school the next semester. Everything was fine in the beginning but the evil headaches came to haunt me everyday and my life was miserable. And then I started to have this 
pain in my lower abdomen. Everyday the pain would be there and it was very uncomfortable. It felt like something was going to fall. Later during the semester, the sore throats that I had every once in a while became like a weekly occurrence. I became very sickly that semester. Sometimes I would go home before or after lunch or after a couple of classes. 

When the semester ended, I went home to the province to just have a restful vacation like our friends and family did. When I came back to enroll for the next semester, I was informed by the Dean's office that I cannot enroll because I had three absences in one of my classes. That I cannot be accepted as a student there again. I was devastated at that time but at the same time I was so tired. 

In the back of my head I had a feeling there was something wrong with me but I was in denial. I had no idea what to do. I was scared but in no way I would have to tell my parents. There was just no way. So I just stayed in the dorm and just hung out the whole semester. In hindsight, I should have told them the truth. Although I couldn't have thought of it at that time because of how our mother was. She was a tyrant. No. No understanding.  I wish and I could have gotten help. It would have been the best thing. 

Thanksgiving

The purpose of Thanksgiving is to commemorate the good harvest of the Pilgrims in 1621, and to give thanks for our friends, family and good fortune. It is a very important occasion to celebrate by most households in the United States.

In our country, we do not celebrate Thanksgiving, but since we moved here in 1994, we have adopted it as our own. Every year, it became an important day for us. It's a day to be thankful for the blessings of the past year.

A year or two ago, Kevin has recorded what I had done in the kitchen thinking that it might be the last time I am able to prepare the feast. This year was very tough. The left part of my torso has become very stiff and hard that I cannot feel anything but pain. Taking a step with my left leg is excruciating, even more so with standing. But again, I was able to make dinner. Everything was good except the main dish! I never baked a small turkey before. I forgot that I was cooking a small one.

I baked a pumpkin pie meringue, corn bread and made stuffing using corn bread that I made adding with it leeks, green apples and sage. I made Mom's corn pudding. I made sweet potato casserole, green beans sauteed with shallots, cranberries with orange liqueur, sautéed mushrooms and made roasted garlic mashed potato. All made from scratch. Kevin bought a pumpkin pie hoping that I will not make a homemade pie, but didn't work.

Learning to adjust to make things more simple and not stress myself is what I need. Truly, it doesn't stress me mentally since I love to cook and bake but physically, it does! Now, I have to spend many days in bed again. It certainly made me happy that I served something I made in order to make others happy but it takes a toll on my body and it's not good for my condition. I need to care for myself even though it maybe a little late now.

At this point, I consider myself a walking quadriplegic. Everything is partially paralyzed including my stomach. It saddens me but I need to focus on the things that will help me later, I need to prepare for it. Wish I can scape it, but this condition is attacking me at will. I wish for it to halt but it seems like it just goes on and on. There are days when I want to disappear on the face of the earth. I feel like I have lost all my pride, my self esteem, they're long gone. I feel like I am going to loose him, too. The love of my life. I can feel it coming.

It is painful, so painful when you see your life falling into pieces. What will become of me when I am bedridden? I don't see any future, seems like nothing I can do to save myself.  For now, I'll just do what needed to be done, although inside me, I don't care as much for anything anymore. I love my son with all my heart but he shouldn't see me suffering, it will just hurt him.

How I wish I had a Dragon Naturally Speaking gadget that works!!! It's too painful to use my arms and fingers to do any typing but I just don't have any choice, oh yes I do have an option, the choice of not typing!!!!But I had been needing for someone to talk to and this is my way of letting it out.

I know that it won't be long and the days when I am up are over. Even I will not have the liberty to use a wheelchair and roam around. There is a reason why my wheelchair has a controller in the back! I wouldn't mind having a horizontal angle for a view of everything, say goodbye to the upright position. If you want to be positive, it's better than not seeing at all. Same thing as when you say nothing is worse than being bedridden and not being able to do anything? Others would say, no, be
positive, at least you're alive! I think I will get to that later.

A few years ago, I found happiness in gardening and cooking. Now Syringomyelia has taken them away from me almost completely. I heard it from others that SM really attacks its sufferers at will.I think I fought a good battle for many years. (It doesn't matter if it counts to others or not, I just know I tried my best)My son told me that if it wasn't for my persistence, I would have been paralyzed earlier, Kev doesn't agree. I believe it because there is regeneration in nerves, an example is a person that had a stroke can have paralysis and if they are persistent in trying to rehabilitate themselves they could walk again. My brother who is a doctor once told me that I should minimize the use of my energy, save , save and save. On the contrary, I heard my doctor say, in reference to me, "She's up and about, she will do better in the long run". Thinking back, I might have overdone, but like I said before, I wanted to have a life. So if I may have shortened my walking years because I wanted to do things that I can still do at that time, then so be it.

In the book of Matthew, Chapter 6:25. It talks about God telling us not to worry about everyday life. I believe, but I still worry, I worry about so many things especially with what I am going through right now. Besides my condition being a big burden in my mind, I was bothered by some article in the newspaper that my partner had wanted me to read. It may be that he wanted to help, thanks to him but it's almost funny when people say this things because they have no clue what each and everyone of us go through. The article is entitled, Training the brain to Ignore Pain, not knowing that when you have a chronic pain it's totally different from someone who has pain or does get sick every now and then who can afford to lie down and take care of their pain when they do because it only happens once in a while. Not to someone who is in pain everyday for years!!! You become an expert at ignoring your pain. I worked for many years even though I had excruciating pain. Now when it's time to make dinner and my pain hasn't subsided, I can make a quick dinner even when I'm in a lot of pain,it's even hard to think what's the next thing to do because your pain is all over your body and not just one particular area. You learn to smile even you have stabbing, tugging, sharp or electric like pain that makes you nauseated. Life has to go on. But when you talk about your pain, to some people, you are just this weak individual that cannot put mind over matter!!!!lol I just laugh at it. They just don't realize that maybe I/we should teach people how to learn to live ignoring our pain!

Sometimes it's nice to be alone because you don't have to pretend there's nothing wrong when your bladder feels like it's being pulled out of it's place, you just want to tie it with a string and hold it up 24/7 or tie it around your neck, when your legs and feet feels very cold like they're covered in ice but burning or I simply call it the acid burning feeling that makes your hair all over stand up and as if someone is trying to skin your legs and pouring acid on your flesh at the same time, when your shoulder and upper back feels like you're being stabbed in every inch at the same time pulling,tugging and drilling inside so deep and someone pushing you down and you have to fight to remain upright, when your lower back and buttocks feels like it is broken in small pieces and burning inside so deep, sharp pain inside like an electric drill stabbing and crushing you all over, when you're trying to walk even though your pain is up a notch over a 12, feels like your body is a long piece of steel but someone is trying to bend it. The only way to relieve it is to be in bed. I could go on and on and describe the pain that goes on all over my body but it's not going to change anything.

I think I'm in an emotionally vulnerable position right now. Things will change. Someday it will be easier for me to be thankful for the last seven years that were given to me that I surely enjoyed. I will not try to change anything. It was a different life but I tried to embrace it. I thank God and my doctors for those years. The past seven years were the best gift of my life.

It's Been Difficult

Since June of this year, it has been so difficult. It seems like my condition has been spiraling down everyday. The only times that I feel better is after a doze of Dilaudid. Now doctor's advice is to limit or stop taking it. I totally understand. I avoid taking it myself.

The left side of trunk had been extremely stiff. It is obvious there is no signal coming from the brain, not getting through the spinal cord. I had gone through P.T. but to no avail. I have been using a back mas sager which helps for a very short time and then goes back to being very stiff and hard after I sit,stand or walk. I am really losing hope. I don't have happiness anymore. Before, there were things I am thankful about. There were things I can do. Some people say, it could be worse. What is worse than being alive and not be able to do anything? Being dead, right. I'm sure that this feeling will get better. There has been a change in my condition, it is worse, but when total paralysis sets in and you know that there is nothing that can be done and you've used up all your resources, ACCEPTANCE will set in.

Sometimes I wish that we have the right to end our suffering. I don't think I have any patience left. I know this feeling is temporary. I feel so down, so sad but you almost have to keep it to yourself. I cry mostly when I'm alone. No matter how I try, it's hard not to cry and be sad about it. I try to be courageous about it and be tough like my Dad, but I just can't. Yes, I tell my partner my pain, I never tell anything to my son who was in Iraq and now in Ft. Hood. The only person that I cry to is my Mom although she's not always a good listener, it's alright as long as I can vent. It helps to be able to vent although it seems like a torture to someone on the receiving end.

Things maybe difficult now, but when I get settled in my wheelchair permanently, I know things will change.