The month of October has hit me like a ton of bricks. I knew the 5 weeks following my first gastroenterologist appointment would be difficult, but I never imagined it would be this hard. For the past several months these digestive issues have only worsened. They are at a point where they affect every aspect of my day every day. There was about 6 or 7 days at the end of September that I was blessed with some relief, but the fear was never far behind. Testing will be done (hopefully) by the end of October so I was prepared for no relief until thereafter.
In recent posts I have talked about my primary care doctor showing more signs of concern. She is a bulldog, and I love that about her. She does not want to leave any stone unturned. In addition to the 4 tests the GI set up for me, my primary added a few additional scans. At first thought, I was pleased. There have been some doctors who tested for one thing, and when nothing was uncovered they would excuse the symptoms. That usually only created a more devastating realization later. So, I am glad my current primary is more thorough.
To put this in perspective for you I will give you a glimpse of my schedule of appointments. (Because these are GI issues I will leave out details to save my own pride) I met with my GI doc on September 16th. He scheduled a test for September 22 as well as October 24. Both of these are out of town and fasting. (Fasting is a Type I diabetics worst enemy) In addition to these tests I have to have blood work and samples dropped off around October 16. My primary decided I needed two additional tests. I was scheduled for October 10 & 12 for these. Again, both fasting. These are all scans of some sort, not blood work so the fasting is not immediately resolved.
I dealt with the appointment on Sept 22 with the help of some amazing friends. I left that appointment feeling like I could conquer this. I thought, "the next five weeks of testing won't be so bad, and at least I'll have an answer soon." Boy, was I wrong. I fasted after a rough weekend for the appointment on October 10. I get to the office and find out the machine went out on the prior patient. "We are not sure how long it will take to fix. If you want to go home we can call you as soon as it's up. It could take all day." This was at 9 in the morning. I declined and reluctantly rescheduled the appointment for October 14th (another day of fasting).
This morning I woke up fasting for a scan that was scheduled for 1pm. That, in itself, is difficult for a healthy individual. While I was showering and mentally preparing to get through this day, my phone rang. The gentleman wants to push my appointment out another hour. Apologetically he explains, "they completely overloaded me today, I just can't do it sooner. Unless, you'd like to reschedule?" In my head I am thinking, "It would've been easier if this had been earlier in the morning, but the thought of ruining another day with fasting is too much." So, here I am waiting an additional hour to go to this scan. I was also told by the nice gentleman to bring an iPod or something because the scan takes about an hour and a half to two hours. Great! Two more hours with no food.
I know it sounds like an oxymoron for me to complain about having to fast when I already struggle eating to begin with. It would be nice if I could go about my days with no food to avoid the GI symptoms, but I am diabetic. Fasting only adds to blood sugar issues. Also, I am still losing weight. I am pretty sure fasting is not on the recommendation list for better nutrition. Bottom line of it all, my life is being dictated by my symptoms and appointments.
I feel completely out of control. I do try to be as positive as possible at all times for the sanity of my family as well as myself. There are so many factors I have no control over, I have to let those go. The problem I am having now is, these uncontrollable factors are affecting my life far too much. They talk about depression being severe enough to treat if it starts affecting your daily life. Similar comments have been made about addictions. If they are affecting your daily routine and responsibilities, they need to be addressed. What do I do when tests, appointments, and symptoms are so severe I no longer feel like my days are my own. I can barely schedule anything of my own choosing in the midst of all of this. Add to that my husband and son who need me. I would rather spend a day doing homework and running from practice to practice for my 5 year old than spending the day at a doctor's office while his aunt takes on my son's schedule.
Everything in moderation is something I hold dear to my heart. I am allowing this anger and frustration to flow at this point. I am allowed to be less than perfect. Today I chose to let go. Although I know there are policies, procedures, schedules, rules, regulations, etc. that affect how any business is run as well as health care facilities, I believe this is a huge short coming.
It is now at a place where I am no longer looked at as a person. I am a number or a name on a schedule. The symptoms, pain, suffering, daily struggles are non-existent to these workers. I understand that completely with my short career in health care. You have to separate yourself in order to do your job properly. You must find a balance. These are still patients...PEOPLE with families and lives outside of this scan or that test. It is not a haircut we can continually reschedule or a nail appointment that needs to be pushed back.
I feel like there is no one out there that relates to me. I feel like an outsider in my own world. How do I work through these issues without sounding over dramatic and selfish? Who do I talk to about this stuff without feeling like they are just humoring me? Where do I turn?
I pray. I talk to my husband and family. I stay in the present moment when I am with my son as much as I can. I continue to do things I enjoy to have a sense of self in this mess. I am thankful for the blessings in my life. I try to learn from ever difficult situation I face. At this moment in time I feel like screaming from the Empire State Building, "I learned the lessons. I am trying to do the best I can. Please, give me a break!!" I just need some time.
I wish every minute of everyday that someone out there will have the answer. Maybe some doctor or some researcher has seen something similar to my case and has an approach that may make my quality of life a little easier. I want my focus to be on my son and my family more than my obligations created by my health. Sometimes it is good to really feel what you are feeling!
Then you stop.....Live for today, pray for tomorrow.
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