Saturday, June 20, 2015
I started the weekend early. Normally I try to sleep in, catch up on my rest and delay eating. The sound of my husband preparing for work kept me awake. My short to-do list for the day running through my mind. I'm awake, no need to try to force a return to sleep.
Completing my errands, I grab the largest cup of coffee the convenience store offers. Enjoying gulping down my lightly flavored coffee will help delay my solid food intake. I have my meals planned out today...even though I usually don't follow my meal plans. I'm aiming for a protein shake at noon. I'm rarely able to make my coffee last more than half an hour though. I have a food obsession and have difficulty delaying or slowly ingesting food or drink even when I know better.
I'm starting to feel hungry and my mind is reeling with possible food options. I'm unable to force myself to delay eating any further. I devour half a sandwich, the protein shake no longer sounding fulfilling. I wait, hoping I didn't make a mistake and cause myself to become sick once again. In less than 10 minutes my stomach feels full and a low grade pain begins to radiate through my abdomen. In the course of half an hour this pain may have me doubled over wishing I hadn't eaten. I hope I was able to prevent this severity by only eating half a sandwich rather than a full sandwich.
hospitalization a month ago. Now I'm caught again in a food dilemma. I am once again enjoying the taste of food and yet eating solid food causes intense pain causing me to not want to eat in order to prevent the resulting pain.
This week a former ICU nurse I work with visited with me and shared her theory that I may be experiencing symptoms similar to that of refeeding syndrome. I barely ate any food for a 1.5 - 2 weeks prior to my hospitalization and only had clear liquids for 3 of days I was in the hospital. Following my upper and lower scopes I was immediately placed on a solid food diet again without any gradual graduation from liquids to solid food. My coworker explained that immediately resuming solid food after a period of little to no food intake is difficult for the body and can cause serious health risks. Although I do not feel that I am at any serious health risks after a month of eating solid food, it would explain why I continue to have difficulty eating without severe cramping, bloating, and pain. I could understand my body having difficulty readjusting to food intake for a few days but not over a month. But then again...my body is not a normal body. My body reacts very differently to typical issues and circumstances.
My coworker suggested I begin a liquid diet for a few days and graduate to soft, bland foods such as mashed potatoes, applesauce, etc before returning to solid foods. She explained how my body needed to readjust to food even after a month of eating. My body was likely entering a starvation phase and with an already established sensitive stomach, immediately resuming solid food intake doesn't sound like it was a good choice. Since the first night of resuming solid foods, I have been experiencing the stomach pain, early fullness, reflux, and increasing nausea. Desperate for relief, I followed her advice...for a half day at a time. My hunger for solid food winning in the evenings. However, I was feeling better than I have in weeks during the day with consumption of only liquids. Due to my stubbornness, I have yet to actually complete a full day of only liquids thereby not allowing myself to slowly graduate from liquid forms to solid forms. Sometimes it takes longer for me to learn lessons with my body as I fight against what I know needs to be done.
My stomach is rumbling loudly and bloated in appearance, the pain increasing with each 10 minute period. I set myself up for failure by eating solid food this morning. I'm now miserable, envisioning a scalpel slicing my abdomen to remove my stomach and small intestine and the relief I imagine this would bring.
Albeit slowly, I'll commit to a liquid diet for a full day and allow myself to recover. I tend to require completion of several failed attempts before I am ready to submit to that which I do not really want. If I commit now, I may have resolved my own eating dilemma prior to my appointment with my new adult GI doctor next week.
Sunday, June 14, 2015
I'm sitting in an Ear, Nose, and Throat doctor's office waiting to get a thyroid biopsy. Familial Adenomatous Polyposis (FAP) is a scary disease, it takes so much away from me and my family.
I was asked about what I've taught my children about my health and health issues. I pondered this question more as I sat in that ENT office, waiting again for a test which results may change my life again. How do you tell your children you have a deadly disease? How do you explain to your kids once again why you can't walk through the zoo, today you can't jump rope or play soccer in the yard, why you can't eat their favorite food, why you can't do so much that every parent should be able to do?
I don't tell them everything at once, I break it down, and I don't give the doom and gloom tidbits that crawl through my mind weekly (if I'm lucky).
Before sharing how I tell my kids about my disease, I need to explain a little about my family. We're different. First, we adopted both of our children, Jeremiah is 5 and Payton is 7. Because of adoption my children won't inherit my disease, which I'm extremely grateful for. If my children were to inherit my disease I would make different considerations when educating them, so for this post I'm coming from a different angle than some who will read this.
Another factor that makes our family different is our son, Jeremiah, has autism. He doesn't understand my illness and wouldn't if I explained it to him so for this post I will only be talking about my daughter, Payton, and how I've shared with her about my disease and how she's dealt with it.
I had my colon removed when I was 18 years old (I'm now 36). The removal of such a large organ has caused some issues for me and thus we've talked to Payton a lot about the result of not having a large intestine. (I say 'we' because my husband is very supportive and helps to share with Payton about what I can and cannot do, why my body is the way it is.) This has led to discussions about my disease.
I tell Payton that I've had my large intestine removed because if I hadn't, I would have cancer. I haven't really explained what cancer is to her because I feel it would cause her to worry too much. She knows her great-grandma died of cancer (different from what I face because this grandma didn't have FAP) and Payton's intelligent so I'm sure in some way she's connected some dots. Frankly, she probably avoids asking too much because she knows the end results of the word 'cancer'.
When I get tests done, she knows about them and knows what they're for. Although she doesn't know the scope of everything, she's aware that mommy has a disease and life is different because of it.
We try not to make life too different, but having this disease and adding a child who has nonverbal autism, life is going to be unique. We try to make it as normal as possible. We are very family-focused and we try to tailor our adventures to fit everyone's abilities.
I've also really focused on getting all I can out of my good days. I only have so much each day and there are days when I don't have anything at all - I'm exhausted and in pain. On the good days I try to spend quality time with my kids. I take them often to hug, hold them, and do any activity with them they enjoy.
Overall, Payton is empathetic to how I feel but there are times when she gets tired of not being able to do something because I'm sick or because I'm sleeping. There are many times I feel guilty because I have this disease, mainly because of how it's affected me. I get so frustrated and a large part of that frustration is around what I can't do with, or for, my family.
So, how do you tell your child about your serious rare disease? It's hard, I don't know that there's a simple way to go about it, especially when it's a disease that's trying to take your life with every breath you breathe. Cancer conversations are horrible to have with children. I think the best way to go about it is slowly and simply, making terminology as simple as possible and leaving out the catastrophic information as long as you can without shutting your child out completely.
I believe that when a parent has a serious illness it can create a compassionate child. I've seen this in our daughter, but more so because of her brother's autism, and this is probably because it's something we live with daily. Many conversations center around Jeremiah's disABILITY.
Because of living with autism and having open conversations about it, Payton has become an awesome advocate for special needs. She is extremely accepting of people who are different and so loving toward others. She is also very helpful with her brother even when I don't ask a thing of her. She knows. She has an innate ability to understand that I need help with Jeremiah and she goes out of her way constantly to assist him. I think so much of who she is stems from having the family she does (both because of her brother's autism and my illness). We explain and openly talk about so much and we are also very supportive of one another.
The family I grew up in treated this disease far differently and in the end it wasn't the best for me. This disease has killed several of my extended relatives including my Grandma, she passed at age 47 when my mother was 22. My mom saw this disease take her mother in such a horrible, unthinkable way, yet she put it under the covers and didn't face its reality. She didn't have a colonoscopy until she was 39, she's extremely fortunate she didn't have cancer and the doctors were able to remove her colon and she's still alive at age 62.
However, this approach of blanketing it and not facing reality caused me to not see what could happen to me. I lived in a sort of utopia. I knew I needed to get regular colonoscopies but I didn't really understand the full devastation FAP can cause. I skipped those colonoscopies for years, probably due to my mom being fine when she was 39 and not having any other complications. I didn't understand that it's not as simple as removing every polyp. I didn't realize how fast this disease can escalate. There was a lot I didn't know. Open communication and further learning could have helped me know what to watch for.
My mom never wanted to talk about her mother's passing, in fact, it affected her so much that she hardly ever spoke of her mom, even the good times. Her death had wrenched my mothers heart so much that she wasn't even able to talk about her. Because of this I never learned about my Grandma, what she was like, what she loved to do, what her best qualities were. Nor did I really know how FAP had taken her. I didn't need to hear every detail at age 15 but as I saw my 20s passing it was something that should have been talked about. I needed to know what I'm facing.
There are some benefits to me living in that utopia but more information would have been better. For example, there's a good chance I wouldn't have done foster care or adopted a special needs child if I'd known what I know now. However, I'm so glad I did, it's been the best decision I've ever made.
These conversations are difficult and so much more for parents who have children who inherited this disease. Take it one step at a time and know that none of us are going to do it perfectly.
Thursday, June 4, 2015
When I was unexpectedly rushed to the hospital and admitted for four days, my only concern was my ability to continue with my travel plans with my husband and parents to Alaska on a cruise the following week. An Alaskan cruise is a bucket list vacation for my mother and I, we've been planning and preparing for over a year and there wasn't anything that would make me miss our cruise short of being held hostage.
severe stomach pain, cramps, and bloating shortly after eating and the pain lasts for the majority of the day and at times into the next day. I attempted to return to work immediately after my hospital release but my body rejected my attempts and forcefully informed me of my inability to resume normal work and activity. I was forced home for the next two days.
|Snorkeling in Ketchikan, Alaska|
|Hubbard Glacier. My husband spreading awareness of FAP|
|Mendenhall Glacier Juneau, Alaska|
|Icy Strait Point, Hoonah, Alaska|