A Walk

As always, it's been crazy over here. We are trying to adapt to our "new normal." It's been beyond challenging. I haven't met my calories since 2 Tuesday's ago, which means more weight loss. I found the more anxious I get, the more damage I do, so I am really trying to find a source of stress relief. When I was pregnant with Elijah, a friend of ours taught me how to crochet. I attempted to make Eli a blanket, but instead it became his cape. I don't remember how any longer, but I am trying to come up with something to distract my wandering thoughts. Since being on the antibiotic, I can hardly leave the house. It's to unpredictable. I am trying hard to balance it out, since it does seem to help with moving my food out of my stomach. The tradeoff isn't pretty, but it's keeping me alive. I went on line to quick look up some natural remedies to aid in digestion. We have found that ginger root in the garlic press helps a little and adds some pizzaz to my hot water. In looking for some recipe and therapy ideas I came across the most discouraging info. Basically in an article they were expressing how gastroparesis patients are falling between the cracks and are being left behind. I guess they aren't doing many studies and are not even bothering looking for a cure. This alarmed me. In this day and age, you assume that there is always someone working on each crazy diagnosis and attempting to find relief for them. One guy wrote that even if you find the right med. that this is a progressive condition and that essentially your body will adapt to it and it will no longer be effective. I sat in the house all day yesterday, and lamented. I just assumed that this is as far as it will top out and that once I figure out my concoction, I'll stabilize. The depression hit me like a sledge hammer. Lately, I have been in so much pain that I haven't even had time to "go there" but I did, and it was ugly. I let G-d have it. I squawked, cried, reasoned, begged, and even expressed my anger and feelings of abandonment. Isaiah came home with a high fever from school, which now every time anyone gets sick, it becomes a huge threat to set me back even further. He loves school and gets so much out of it, I can't pull him. But how do you take care of a sick family when your gas tank is well below E? I would like to try complimentary therapies (acupuncture, holistic remedies) but everything is so expensive. To add the icing on the ever building cake, I stepped on my glasses and my hearing fell apart within 2 seconds of each other. I quit. Life keeps on happening whether you have a chronic condition or not. As I stepped into my XLarge girls pants and realized these too are getting to big, I lost it. I guess there is a Stephen King novel called Thinner or something like that. I have never read it, but a couple of people made references to it. I never thought being skinny could come at such a cost. Now that I have probably depressed the hoo ha out of you and please don't send me emails that you can't read my posts because of how depressing they are, I do have some good things to say. First is, I have been able to walk around the house and even got to vacuum! I was so excited! When you sit around a lot, you notice every little detail of your life especially house work. The house work was usually my job, so it's really fallen behind. After having a horrible bout on Tuesday night, that rendered me out of commission on Wednesday. But by Friday I had a tid bit of energy. I am learning on these days to really rejoice, to force myself to do small things that make me feel like I am accomplishing something. On this day, I grabbed the vacuum. With each dust bunny that got sucked up, I felt excitement pour through my body. I have been trying to do my hair on days I feel better, to give me an extra shot of confidence. I can't wait for the day when I can put some makeup on! I have been trying hard to read a story to the kids when I feel up to it and do up Aria's hair, beautician style. When you are suffering it's hard to see the good things, even when they are right in front of you. So instead of beating myself up for not handling things with the grace that I feel I should have, I am having to accept, I am going to have bad days and good days. Yesterday I was so excited to try a new food. I got my med ready and Seth and I tried to plan out our plan of action. So we pulled out some salmon and pureed it (if you think it sounds disgusting, your right) but at least I'd get to try something new! So I attempt to sit at the table and we begin to eat. Right away the kids started to complain about the food. We had cous cous and pureed sweet potatoes along side of it. So they are yelling and crying when I pop a bite in Aria's mouth and she says "hmmm, that's good!" Success! Two birds with one stone! Or so we thought. We have been trying hard to expose the kids to all sorts of food, to teach them to be grateful for what we have. So it's Isaiah's turn. We all stare at him to see what he is going to do. Right away he whimpers and moans. Finally Seth pops a bite in. It barely hits his mouth and he proceeds to throw up all over the table, at precisely the same time Aria accidentally smashes her glass cup all over the floor. Both kids are sobbing and my food looks just like what Isaiah threw up. My appetite was gone. One of the important things that this one woman has found with gastroparesis is that you need to control your stress level, especially when you are eating. We are instructed to eat small meals slowly and a calm environment. Yeah, not going to happen when you have 2 small children. Seth looks at me and suggests I might need to start eating in our bedroom, Oy. The other thing that is suggested is gentle exercise, such as walking, yoga, and I forget the other stuff. So today I picked up my non energetic bag of bones and walked around the block. As gloomy as it is outside, the temperature was lovely and it felt freeing to be outside. Other than appointments, I can't remember the last time I went outside. My stomach has stopped right now, so I wanted to see if it would help things move. I'll find out tonight if that part of it was successful, but it really calmed down, even with the kids in tow. Every day I am becoming more and more aware that short of a G-d given miracle (which I still believe could happen and pray for!) that this is the way it is for now. Instead of wishing it away, I am going to have to learn to cope with this hour by hour struggle. I am trying hard to look outside of myself and be interested in what is going on around me. It's more of a challenge than I thought. I love talking with people and hearing all that is going on with their life, but being so isolated, makes that less able to happen. Especially since my attention span has shortened quite a bit. I am praying for hope. Hope is something I desperately need. Without it, it makes everything so hard. As frustrated as I am with G-d about all of this and as un christian as it may seem, I have questioned Him. I still can't shake the fact that I still believe. The other day I was in so much pain and I kept on trying to envision Him standing by me and holding my hand, it got me through. It didn't hurt any less, but helped. I don't know why all of this is happening. All of this has made me acutely aware that there are some out there who are suffering ever greater than I can imagine and I long to comfort them. Before all of this I was so worried about my house not being big enough, I was too heavy, or I wish I had that wardrobe, or it's not fair that I don't have that. Now it all seems so silly. It's so easy for me to get caught up with the worldly things that I am constantly reminded, really don't matter. G-d gives us all a short time on this earth and I wonder how on earth I can make a difference before my time comes up. While money would be great to have and could really solve a lot of problems right now, how is my character? How is my soul? Am I really living the way I am supposed to? Obviously I haven't been or else I wouldn't have stressed my body out to the point of breaking it. Stress, what a waste. So I have been hitting some low notes lately and that's just going to happen, G-d understands. I always wondered why people with chronic conditions get so depressed, I get it now. The biggest thing I am learning is not to judge others. In so many situations I have assumed I'd handle it so differently, until I was faced with it myself. I am down, but not out. I am really having to face my worst enemy, fear, death, and pain. In this, I am clinging to the belief that G-d is at my side, even though right now, I can't see. So I am asking for those prayers to keep on coming, for G-d to not only heal me, but to show Himself to me and my family. Even though honestly sometimes I feel cursed, I know that I am blessed to have the love of G-d and those around me. I am praying this week I can eat and then some and that I can find a good stress reliever. I have so much to live for, my life has just begun and I am believing that my miracle will eventually come. Thank you for your prayers, your encouragement, and your help, we are so grateful and really need it. Know that I am thankful for you, know that you are loved, and know that G-d is always with us, even when we can't see.