Layers

As you may have noticed, I haven't posted for a while. I apologize for not keeping you posted. You would think after going through all of this, that I'd have tougher skin, that I'd be able to roll with the waves a bit easier. But I don't. I believe in being honest, but I admit I have been ashamed of myself lately. I have fallen into depression. It's been one thing after another. I, of all people, should be celebrating each day for what it is worth, but lately I haven't. We thought once I had gotten off the antibiotic that my eating would take off and with the botox in conjunction, I'd be doing significantly better. I had a couple of decent days, but then I had some sort of flare up that put me in significant pain. On call suggested the ER, but I just refused to go. There are many other reasons why I didn't go, but one of them was, I'm just tired of hospitals. I'm tired of explaining my story over and over again to bewildered doctors, it's just depressing. Maybe it would be a different story if they were like "Yes, we see this all the time and all we have to do is this and then you'll be on your way." Unfortunately, that isn't the reality. So I stuck it out and just dealt with it. Our insurance has changed and just when we thought co-pays and all of that were already difficult enough, everything increased. I keep on trying to remind myself, at least we have insurance. With all these hospital stays, even though it's costly, it could be much worse. The protocol with gastroparesis is, you have a flare up 1-2 days of pure liquids. With all the issues I have had, I had to go to two, which has caused my anxiety to rise in the dwindling calories. I have had to force myself to get up and walk around to keep my muscles going, but they too have become painful. I have been mainly lying on the couch or in bed, not good for the soul. We are still at my In-laws, who have been beyond gracious. Their once quiet house has been over taken by kids toys and rowdy bored children who are testing their limits. I can't say I blame the little tikes, their whole life has been flipped upside down. We are thankful to have family to help us out, but there is no place like home. To add to all of this, our children have been sick with fevers and an ear infection and decided to share their good fortune with the family. So to add to this, we are having to get up in the middle of the night several times to help out the little ones (pray Seth and I can stay healthy). I think I am going through stages repeatedly, or rather, layers. This week it has been depression coupled with anger. I'm sick and tired of being sick and tired. I thought by now I'd be getting used to the pain and the emotional issues, but I haven't. In fact, since being NPO for so long, it has awakened my appetite. I am so HUNGRY!!!! I can't stop thinking about food. Taco's, Egg rolls, Cheese burgers, BLT's, anything!!! I can barely look at FB or the TV without something about food coming up.I can't seem to get the medical world to understand that no matter how nauseous I am, I'm still hungry. I spoke with one dietician who was trying to push Boost and Ensure and all those drinks. I kept on explaining over and over, I can't drink them, they make me sick. The sugar makes me sick, is there anything salty? She looks at me and says, "have you tried pudding?" I just stared at her in disbelief. I don't know about you, but last I checked, pudding is NOT salty. Not to mention they always leave the room with, I hope you get you are hungry again. Guess what??? I just said, I'm hungry! Hello! Grrrrr..... If you are sensing a bit of attitude, you are on par. I have read some blogs with really positive people who have gastroparesis, there aren't many, but some. I so want to be one of these people. Seth keeps on telling me that G-d is shaping me and he already sees a difference in me. This week, all I can see, is a really hungry rabid animal, trapped in my body. I am not used to being hungry, I am not used to being in pain, I am not used to feeling so useless!! I am sorry that this isn't a more uplifting post, I wish I could tell you all the wonderful life changing good that has come out of this, but for today, I am sad/angry. Today I actually took a shower (yes, you can applaud) and after I was done, I put on my pajamas. Now mind you, I love pajamas, especially my nice warm and cuddly ones. We all need a good pajama day, but not 8 months worth. There's just something about putting on your make up, getting your hair done, and putting on a super cute outfit that makes you just feel so lively. My clothes don't fit. I put on my size 0 jeans last week and they just hung off of me, it was gross. I remember in my heavier days thinking, if I could just be skinny, I'd feel fabulous! Now, I just wish I could put on 20 pounds. I never realized how vital good nutrition really is, it affects everything, your health, your mood, your skin, nails, hair! So we called back U of M and they are ordering more lab work (I think they have more of my blood than I do) to check my health status. They are ordering a Dub Hoff(Sp?) or some of you may know it also to be a core pack. It's a tube that goes up the nose and down the throat and I guess this one would have to go into my intestines. I really don't want to do this. Any of the medical staff that I have spoke with cringe when it's brought up. I guess the doctor doesn't want to jump to the Jejunal tube just yet due to wanting to rule everything out. Honestly, I am scared out of my mind. I hate things up my nose. I keep on thinking about our little Elijah who had his NG tube and used to try and push it out with his tiny tongue. I keep on reminding myself, I have to do this for my family and if Eli can do, I can too. I have broken down to many times to count. Seth keeps on reassuring me that this can't last forever, I want to believe him, but I just don't know. I want so much to get together with people but feel so embarrassed on how I look and the fact that I am not really a mood lifter right now. I want a vacation from me. Seth and I keep on planning a date night. Our date nights have always consisted of going out to eat, that's just what I love to do. We talk about it, but then it always comes back to, I can't bring a food processor to a restaurant, besides most things I wouldn't be able to eat. I keep on praying though. I told Seth I feel bad that I am not more in tune with G-d, I wish I could just feel His words, peace, His spirit on me all day every day. Seth reminded me that while a lot of the Psalms were praising G-d, they were also filled with laments. I guess I am lamenting. I must sound like a broken record. It's amazing on the good "normal days" how easy it is to forget what the bad ones feel like. I love them. Then the bad days hit and I can't see the forest for the trees. I so miss my good health. I so miss just being bored and digging in the chip bag only to realize I ate the whole bag. I miss calling up our friends and hanging out and chattering about the latest news or memories of sheer embarrassment. I miss my life. I miss my biggest issue being, how can I cover up this zit or I hope my pants don't split open after I eat this cheeseburger and cheese curds. I miss being in the moment. I miss just going for a walk around the block while dragging the kids with us as they'd screech at me for going the wrong way. I read in one of the woman's blog that we are better off to accept that gastroparesis is a part of our life, maybe she's right. I can't help but hoping this is only temporary, yet it seems things are getting worse, not better. I have been told to think positively and I am trying, I really am, it's just been really hard. All I can utter lately to G-d is, please heal me and have mercy on me. I really need your prayers that this depression would lift and that I could eat normally again. Due to the lack of nutrition I find my attention span to be less than a gnat's. I feel the evil one is tormenting me. I try and remember what people have told me to do, but still he persists. Pray that I'd be strong enough to resist the lies. I know G-d is in control, I keep on praying that His will would be to intervene. I need a miracle, please pray on my behalf.