Looking for More Patience

Yes, I'm looking for more patience, asking God for more patience. I know I can say it could be worse but to have such debilitating condition could really get into you but I just need more patience. Yes, I'm aware that there are people out there with much worse condition than I'm in and I realize that the more you complain and feel tired of it the harder it gets. I have to learn to take it easy, do what I can and things will be alright. If my body says don't go anywhere, I'll try not to go anywhere unless there is anything pressing like doctor's appointments. I try not to go to PT because it's very difficult to ride but my neurosurgeon in New York who is my no. 1 doctor recommends more PT, so I guess there's not much choice. For sure it will be better for me in the long run.
I would like to record my condition as of this point, this is not to complain just but to record my pain. I am tapering down on my Neurontin from 3600, I'm now down to 2400 Neurontin, 60 Ultram and 60 Cymbalta with 2mg Dilaudid as needed.
So as expected, my body is going through withdrawal, every inch is so painful and I have been getting swelling as well. Joints, upper back, shoulders, neck swelling and pain, including my breasts, very tender to the touch. When my arms are raised they're very painful. My feet are burning with acid!!! Don't know what to do with them. Joints are painful. At the present, it's very hard to get comfortable. When laying on my sides my arms easily get numb and when lying on my back, my buttocks get numb and the makes it a lot harder to walk. Also it's hard to breath when lying flat. There is no sitting at this point, I cannot bend my torso or my stomach, I mean I can for a few minutes and then after a few minutes, my stomach swells and the pain is aggravated and then I have to lie flat for the rest of the day and be in pain.
With eating, I don't have an appetite but I have to eat in order to take my medicine. Unlike before, I can have a banana and a yogurt and I can take my meds but not anymore. I have to have a meal to have less pain. Not that I won't have pain and swelling but somewhat less. It has been so difficult lately, Gastroparesis is getting harder and harder to manage. But like I said, I need to have more patience, it's a basic key in order to deal with this type of pain, constant nagging pain.
I'll keep asking for it. Ask the fairy to put some in my pocket.

Just came back from the Spine Clinic and saw Dr. Meuselar. Did a full neurulogical exams and he told me I need surgery, he might insert a tubing into the spinal cord but he would like to confirm that after I get a cervical MRI.

I could feel that it's coming so close,paralysis I mean. Everything is difficult to do. It's not visible but I am losing tolerance to all this pain. I want to give up moving, because mobility is getting more and more limited and the pain with every movement is excruciating especailly in the stomach and mid back area. My torso cannot support my body and my neck cannot support my head?? I'm so tired of being in pain!!!!

A month vacation in North Shore of Oahu at Christmas Time

The familiarity of life in the North Shore of Oahu for Kevin and I started on Dec. 4, 2010, we arrived at about 1p.m. Hawaii time. We met one of the few remaining World War II veterans who flew with us in the same plane, who came for the anniversary of Pearl Harbor. A man in his late 80's in such great shape with such confidence, talked to us about what he did during the war. From the airport we rented a car and immediately drove to our rented place in North Shore. In order to get to it, is a stairs on the side of the house. From the balcony is a sliding door that takes you to the studio, stepping inside takes you to living room area with sofa and chairs that is sort of old but very comforable. There is a television that can be turned to face the bedroom area behind the sofa. On one corner nook is a small dining table, next to the kitchen and then the bathroom. The place was gorgeous, it was a nice beach house but not that neat for the two neat freaks of us!! So we cleaned as soon as we got there. Kevin was happy when it was done, he readily went to surf. The smile on his face was the smile of a little boy so content, all tension of corporate job gone, he walked past the downstairs balcony and I can see the sand beneath his feet, he was carrying his surfboard in one hand. That was the happiest I have seen him over the years. I watched him from the balcony and my eyes followed him as the coolness of the breeze coming from the ocean touched my skin giving me an instant relief and feeling of relaxation.
There, I enjoyed cooking while I watched the surfers at Rocky Point.

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