Frustrations and decisions

Over the past few weeks---in fact ever since my colonoscopy and flu, I haven't felt well at all. I've been in so much pain and been very nauseated. This affects me physically as it wears me out very much and sometimes I don't have the energy to do daily tasks. I often look back to last year and how I was able to hold a full time job and still come home and do what was required of me. Those days seems behind me and I miss those days. I feel guilty not helping financially with the house and other things. I know I shouldn't and I know it can't be helped, but it's very frustrating to not be able to hold a full time job and having to be dependent on my parents. I pay for my hospital bills with what money I do have in my savings account. (sideline: just a suggestion, always save money for rainy days---you never know when you'll be unemployed). I'm grateful for the days I can work as, a substitute teacher at the school or day care I'm part of. Those hours and pay check do help to pay some of the bills. I keep looking but there's no one wanting to hire me. I keep thinking is it really my qualifications or is it my health concerns that they have found out through my previous employers? I often wonder if I can actually hold a full time job----no, actually I know it is going to be very hard on my body if I can. Even working part time is sometimes strenuous, but I do it because I want to and because it is helpful for me to just get out instead of being kept inside the house most of the day. Don't get me wrong, I keep busy at home to and help out where needed; but it's very frustrating not knowing how your day will be until the day comes and you go about your day. I can be "okay" one minute and then another minute passes by and I'm in extreme pain and fatigue and feel very nauseated. Sometimes it is so bad that I can't even have the energy to read a book or crochet or scrapbook---my hobbies! My doctors had asked me at one point if I have ever considered applying for disability. Honestly, the thought has crossed my mind and I have thought about it more in the past few weeks. I just feel (again here comes the word....) guilty for wanting to do such. I have been able to work; it just extremely rough on me and I'm not sure how my body can handle full time work. I need a job so I can have insurance.....and I need a job so that I can pay bills.....save for the future....and be on my own once again.

The past few weeks has been very rough on me and I have not really had a good appetite. Sometimes I can eat and later on my stomach will hurt so badly or I'll be so nauseated to the point that sometimes medications will not work for me. It's so frustrating. Not only for me but for my doctors and parents as well. They don't know what to say or do. So much medical tests has been done, and besides the diagnoses of gastropereesis and stomach spasms, the doctors do not know what is going on with my body. Medications help at some point but they do not take away the symptoms or solve the problem permanently. I'm sure my parents are tired of hearing how much pain I am and hearing my complaints. I'm sure a lot of you are frustrated hearing my pain and complaints as well (for that I apologize). Honestly, the last thing I want to happen is for me to end up in the hospital again with IV fluids and more invasive tests being done...that's NOT something I'd like to happen. But then I think about my health and how I feel. I wonder if it's really worth continuing to go to the doctor when all I hear is "we are just as frustrated as you are and we have exhausted the tests to be done" I don't need to pay a copay to a doctor to hear that, yet I know it's important to keep up with my doctors because of my health. Lately the words of advice I hear most frequent is "go to the ER if it gets any worse..." Hospitals are no fun and especially ERs are no fun. This week my GI doctor is out of town so I can't call him to tell him how awful I feel. Do I take the nurse's advice and just go to the ER or do I wait it out for next week when he returns? Oh what to do---what to do!

I am scheduled for reconstructive surgery on March 17. My mom was asking me if I really felt up to it and I told her that even if I didn't I really needed to get it done asap since I haven't had the tumor removal in almost 2 years. I need to get it done while I still have Cobra insurance. I am not sure what will happen after my Cobra expires, but I do pray that I can continually get medical insurance since it is so necessary and important. The reconstructive surgery is going to be on ongoing thing since the tumors I have will never stop growing (unless a cure is found); so I need to take it while I can.

There's so much going on in my life that sometimes I feel like I can't breathe. At times I feel as if I'm gasping for air or trying to hold on to something so tightly that I feel like I'm loosing grip. I ask humbly for continued prayers as I continue on this health journey. I know God is with me and will never leave me; but at times it is still very hard.