Scary Symptoms

At least I feel paralysis coming. It could be worse to where I could have been instantly paralyzed.
At this point I'm ready for it. I'm thinking of not trying to save myself. Not to opt for another surgery that might slow the progression, because to me, it's been years of torture! Many times I couldn't do it anymore. I have been patient but sometimes, I'm running out,running out of patience, I just constantly pray for more. I don't want to live each day in pain for many more years. I hope that this is understandable to many.

This place is where I can vent, I can vent without hurting anyone, without pulling someone down, without making me feel like an idiot afterwards, making me feel like someone else's pain is worse than mine or I'm not strong enough, etc, etc. Once, a friend of mine said, "Others are in more pain than you do, you're luckier than some people out there". My brother Alex always says " Try to divert your attention and not think about your pain". It's so true, I wish that I can always think that way, but it doesn't make my pain go away. Maybe with a slight pain you can forget but with excruciating pain, it doesn't let you think.

Altering your life due to severe chronic pain is not an option for any human being. Having an active mind in a progressively less active body could be very frustrating. I deal with it on a daily basis. I used to be a very active person. Staying positive can seem to get old after a while. The scary symptoms seem to cloud over your hopes of recovery. At this point in time, it feels to me like paralysis can happen any time. I just know there is no getting around it. The door is open, I'm ready.

Thanksgiving

I'm happy that I went through preparing (w/ Dora's help) and cooking for Thanksgiving with tolerable pain. Thanks to my doctor for increasing my meds at the right time!! Just made Thanksgiving more enjoyable. I was able to prepare everything the way I usually made them the last few years, it felt great. Normally, I could have done more but after SM, I have to be satisfied with much simpler preparations.

The menu:
Roasted Herbed Turkey: chopped sage and diced butter were inserted inside the skin of the turkey for good flavor. Give the turkey a lot of love, salt and pepper including cavities. Inside the cavity,I put one cut small orange, cut lemon and some herbs, like a few spigs of rosemary, thyme, sage or whatever you have.

For basting I use melted butter, dry white wine, salt and pepper, chopped
sage. I baste it every thirty minutes.
This time, cooked a 22lb turkey for 4hours at 375 for the first 30-45
min. Lower temp to 350 for the rest of the time. Mine turned
out so moist. Perfect!
For the gravy, I separated the fat from the drippings. Take turkey neck and
giblets out of the stock pot and saute' in butter. Add flour to the
butter in the hot pan to make a roux. Add chicken stock. (chicken stock
consists of carrots, celery, onions, neck and giblets w/ 3 c water and 3c
canned stock prepared ahead)

Mashed Fingerling Potatoes: warm milk and half a stick of butter were added while
mashing and a bit of salt and pepper.

Mashed sweet potatoes: whipping cream,molasses and a bit of salt were added after the
sweet potatoes were placed in a sieve and then transferred to an electric
mixer. Beat until fluffy.

Cranberries: Place caranberries into a baking dish, add 1 1/2 cups sugar per bag
bake at 350 degrees for about an hour or until popped. Add 1/4 ccup of orange
liquieur and mix well.

Green Beans: Sauté minced shallots in a little butter and olive oil, add sliced mushrooms and sauté, add green beans, add a pinch of salt and black pepper, add chicken stock. Cook until tender.

Pumpkin Pie: Prepared the dough for the crust a day ahead using Pate' Brisee'. I
used sweet baby pumpkins. Baked and scraped them. Placed them into a sieve.
Add salt, ginger, pumpkin pie spice and condensed milk. Mix until just
blended. Pour into cooled crust and bake for abt an hour or until toothpick
comes out clean. I cut out leaves to decorate.


Sweet Potato Cake:

I'm Not Afraid Anymore

I would have had many posts if it hadn't been such a struggle for me to use the computer. It seems like I need someone to help me with every task I need to do. I'm trying to use this voice over software that I got, but it's even more frustrating because it doesn't really recognize what I'm saying, it's not accurate and you have to erase and retype and yell at the words many times for it to be recognized one at a time. A sentence takes so many minutes to complete.
Though it maybe difficult to do things, we keep trying until our body gives up. That's my experience with Syringomyelia. You keep going back trying to do it many more times if you still can. Too sad that it ends and then you realize that every year you accomplish less.
Should I worry about things? Isn't it human instinct to worry about things they need? I worry about things like, my son in Iraq, the monthly mortgage, the bills, the unfinished backyard, my relationship after being incapacitated, my dog Frodo, about things that I couldn't do, etc., etc. I shouldn't, because more worry for me means more pain but I'm just human, although more often than not my faith makes me forget about it. With Him there is always a way. I try to relate my life to the birds in Matthew 6:25-26. And Matthew 6:34 reads, So don't worry about tomorrow, for tomorrow will bring it's own worries. Today's trouble is enough for today.
Although I don't worry about my pain, I just go through it, I don't even go to the doctor anymore. The epidural injection I got many months ago didn't help me, but my medicine helps a bit and I'm thankful for it. I'm appreciative when pain gets tolerable. When pain is at it's worse, I feel like going to a cave where no one can see me and there I scream and cry my heart out to let it out, I have to because if not I feel like I'll get crazy!!
It's hard for me not to prepare myself, to prepare for a new segment of my life because the progression has been too fast. This disease is so debilitating it seems like to me I loose a bit of my mobility each day. I have lost many things, the ability to work for my family and support my son and myself. The ability to drive. It never crossed my mind that at this young age I would have to depend on others to take me to places. I loved to be in the kitchen, my passion is cooking and baking. Complacent that I still can make something that are effortless to prepare. Rarely that I will start any projects anymore. Many years ago, I tiled my porch, I worked on transforming our garage into a family room, scraping walls that have been spackled and later painted it. I thought of myself as a contractor. Except the bottom crack.lol I landscaped lawns like a pro!! Even driving to rivers to pick up rocks. Once I was driving and saw a pile of big nice rocks on the side of the road. There were no houses nearby. So I figured I could save by picking them up since no one seemed to have owned them. I started putting them in the trunk of my car slowly, one at a time. They were big and heavy and to me were nice landscaping rocks. At that time I was already feeling the pain in my back but just ignored it. Lo and behold after putting a number of them in my trunk, an older man in a bulldozer driving in front of me as fast as he could like he was going to run over me and he was shouting, "This is private property, get out". I was too scared that instead of unloading the rocks, my instinct was to drive away as fast as I could before he could get to me. I felt so guilty that I had those rocks but took them home anyway! I will never forget that! I am grateful that I have pictures as a token of my projects because I cannot do any of it now. The sewing projects, the floral arrangements, crocheting, painting and many other things. The painful thing is that to people that didn't know me before think that I'm lazy. I have this invisible disease, there is no trace of it from the outside. Syringomyelia attacks the nervous system, like our electrical system, which doesn't show. A man with the same ailment once said, If I had a whole in my neck, breathing from a tube, people would have been more sympathetic. I, personally am not expecting for sympathy. I wish for understanding.
I'm working hard on not worrying about what other people think, some people think I was lazy many years ago when I can still work, how much more now that I stay home 85%of the time? I'm not afraid anymore as to what awaits me. Certainly more degeneration is what's in store for me, but I'm not afraid. I may still worry at times but definitely not afraid. Because I know that God is with me and He will not leave me alone.Because with God there is always a way.

Uncertainties Of My Condition

Another one of those sleepless nights...I was proud of myself I was able to make an easy dinner which my roommates regarded as gourmet. After I was done in the kitchen, I did a few arm exercises before I jumped in the shower. I believe it might have triggered my pain.
The pain is agonizing,it is depriving me of my sleep, glad I slept in this morning.

As hunan beings, we are bound to give it our best here on Earth, to me I think I did very well before Chiari and I may have failed in some ways but I tried my best...it may not be

Pain After Doing Things, But Seems Like I'll Never Learn

I was in bed for the last few days and thought I may be feeling better that I wanted to do something.
I felt fine, I thought of making pasta, I used the manual pasta maker (Kev got me from Dec. 2005) instead of the electric pasta maker, it felt more authentic. I made Puttanesca for it's sauce. I used these ingredients:
4 anchovies
6 cloves garlic
1 (28 oz)canned tomatoes, preferably Di Napoli
2 T good olive oil
1 cup chopped calamata olives
1/2 t kosher salt
1/2 t fresh ground pepper
1/2 t dried pepper flakes
I made pasta using 2 cups of flour.

Gosh, it was goood! After dinner I tried to clean the kitchen like I want it to be but as soon as I got upstairs, I felt exteme pain and numbness with shooting pain from my lower back down to the back of my legs, excruciating burning pain.Whatever it is I would just rest and say, at least i did it, like i always tell myself after paying for what I had done. Now it's time to rest, it maybe another few days again, but so be it! It has been a part of my life for a while now.

Fear of losing the use of extremeties

At times, I'm scared because I know that one of these days I will most likely become a quadreplegic. There's no getting around it. It's not about being negative, it's about being realistic. Unless I'm lucky enough to get stem cell transplantation, haha!Or a miracle from above!!!

I feel it, it's like having a broken body, from my waist down is numb and cold, feels like pulling,tugging the nerves in my back down to the back of my legs and it's too painful to bear even with a lot of medication. Each time I walk a certain distance, I suffer for days. The root of my arms, are so painful inside, it's excruciating. Each time I use my arm for something, the pain shoots to my neck and my head, combination of weakness, pulling, tugging the nerves and the pain, it's hard to explain. Right now, I have so much limitation as to the use of my arms. I know no one wants to listen to all these and no one even wants to try to understand. Not even my own parents. I know Kevin, my partner has always been understanding, but I don't want to bombard him with all of these. yes, I tell him how I feel but I feel bad after, I feel guilty so it's better for me to keep it to myself sometimes. With Syringomyelia,I know most of us sufferers have become good pretenders. Always pretending we're fine, although inside we're always in pain and what I hate is that when we start to talk about our pain, most people think we are just weak. Not knowing how strong we have become. I have heard things like, " Mind over matter", " Be positive" or "Haven't heard of anything like that". They have no idea what pain really is... But for now, tsk tsk, JUST KEEP SMILING, LOVE THE DAYS WHEN PAIN IS TOLERABLE. WE TREASURE THOSE MOMENTS!!