Tuesday, December 15, 2020

Accepting Body Changes

It's common for those of us with chronic illness to struggle with our weight - whether it be to gain weight or to lose weight. Exercise is often difficult to maintain when we don't feel well and everyday is unpredictable. Eating healthy may not be as easily accessible to others be it due to financial burdens we face on account of our medical expenses, limited income related to ability to work, or because of health reasons such as diet restrictions from what our bodies will tolerate or what tastes good in the moment. Our bodies often don't absorb nutrients properly and medications have side effects affecting weight. Mental health can influence weight - we may be hungry or not at all, we comfort ourselves with unhealthy food options, and we may lack the motivation or energy level to engage in physical exercise.

The last 4 years has been a roller coaster of body weight changes for myself. For the majority of my life I was considered under weight regardless of what I ate. However, the body changes with illness and with age. In Graduate School, I gained a significant amount of weight due to unhealthy eating and depression and I worked very hard over the course of 2 years to lose the extra weight. I exercised and ate healthy and I was able to maintain my weight again through healthy eating choices until my divorce 4 years ago.

My weight yo-yoed over the last 4 years since my divorce, which wasn't healthy or helpful for my metabolism. I lost weight at times due to healthy eating and other times due to illness. Last year, I gained weight to my heaviest again. I started this year exercising regularly and eating healthier in an effort to improve my health and shed some of the extra weight. I realized I didn't need to lose all the weight but instead wanted a happy medium between being under weight and my present weight. I failed to realize though that the changes the body undergoes with age has caught up to me. My metabolism is not anywhere near to what it was in my 20s when I first started focusing on eating healthy and exercising. Now, the combination of eating healthy and exercise only changes the scale by less than 10 pounds. To make matters worse, after losing that 10 pounds, I ended up gaining 20 soon after - that was an additional 10 pounds that I hadn't been at before.

These changes in my physical appearance have been difficult to accept at times. I longed for how my body used to look. I shied away from full body pictures of myself. I was so used to what I previously looked like that I hadn't accepted the changes in my appearance. I kept thinking, "I'll lose the weight". Negative thoughts about myself would race through my mind whenever I looked at pictures of myself or saw myself in the mirror.

Now, I realize that my weight changes may not seem to be significant especially in comparison to others. But this shouldn't be a comparison to others nor should it encourage body shaming. All bodies are beautiful and no one should ever feel ashamed of how they look. And no one should judge another person for their appearance nor should someone be judged for their own self-image regardless what others think of that person's physical appearance. My weight changes, however, are significant to me and the change I saw in myself was difficult to come to terms with. 

With time, I became to understand why others said I was "too skinny" before when I was underweight. My doctors tell me it's good "to have some extra weight as reserves" for when I become sick so that I don't lose too much weight like I have in the past. With time, I've come to accept my new body. Sure, I would still like to lose weight to be at that middle ground between to the two polar opposites. But I've realized I may not reach that middle ground level. And that's okay. I can continue to exercise and eat healthy not for an outward change but instead for the internal benefits. With this acceptance has also come a happy medium with exercise as I no longer push myself to exercise every day and instead aim for 3-5 times a week as allowed by motivation levels and how my body feels each day. Sometimes when I look at myself in pictures, I feel that initial shock again of the weight I've gained but I remind myself that my body is not shameful and I can continue to my efforts to help maintain a healthy level of eating and exercise for myself, not for the scale.

Jenny - May 2020

Tuesday, November 24, 2020

Socializing in a Pandemic

dinner table

As the year is drawing to an end and the holiday season has begun, it got me thinking about how different socializing is with my loved ones.

The holiday season doesn't hold much significance for me although my family does have its own traditions. For Thanksgiving, my parents and I like to go to my favorite Chinese restaurant for the treat of Dim Sum. Since purchasing my home a few years ago the tradition has been for my dad's family to join us for Christmas at my house during the first week or two of December for a meal cooked by my parents. Then my parents and I like to have a meal just the three of us on actual Christmas day. My parents and I decided to downsize our holiday meals a few years ago and it has greatly reduced holiday stress all around for each of us.

This year is different though thanks to Covid. My parents and I have been having a meal together once every week or two. We all wear masks and socially distance from one another. We don't even hug each other anymore. We were planning to have Indian Tacos together with my boyfriend, Mike, for Thanksgiving. That was until Mike was exposed to someone with Covid so both of our families decided to cancel any get-togethers. We both remain asymptomatic and are awaiting testing. To truly know if you're positive for Covid, it sounds as though daily testing is what's actually needed. According to Harvard Health Publishing, if you test too early or too late, there aren't enough viral particles to detect the virus. This has made it more difficult to determine when Mike should be tested as we are uncertain when exactly he was exposed or when that person started experiencing symptoms. We also didn't want to risk a false negative and then expose anyone in our families to us if one of us is actually positive for Covid.

My dad is the youngest of 8, the oldest being in her late 80s. As he and his siblings are older, we decided not to host a Christmas meal for the family. My parents and I still plan to have a meal together, however, that is subject to change as life is unpredictable during a pandemic.

Being apart from family for the holidays is a small price to pay to help maintain my health and theirs. I greatly miss being able to hug my parents but my priority is keeping them safe. This is particularly true as I am still working in the medical field and am exposed to many more individuals than my parents.

Technology has been a blessing during this year so that I may text, call, and video chat my parents and my nieces. It isn't the same as an in-person visit or hugging a loved one. It remains an option to be grateful for though. One of my patients told me that every Saturday he and his wife video chat with all of their children over dinner. Each week someone chooses a recipe and every household makes the same meal that they then enjoy while video chatting together.

It has been difficult to not be able to see my friends or my nieces as often as I usually would have this year. I did take the risk of spending a day with my best friend and her family during the summer, Mike and I went on a vacation to Colorado, and I had an outing with each of my nieces this Fall. I feel as though it has been particularly hard on my nieces not being able to have our usual outings as I want to keep them and myself healthy. I'm fortunate to have the companionship of Mike to help me cope with the stress and isolation of this year. Since we are our own grouping, I am able to receive all the hugs from him that I'm missing from my parents. Not everyone who is isolating has that blessing. I am grateful that Mike and I started dating prior to the pandemic starting as I would not have felt comfortable being involved in the dating world during these times. 

Our families have been kind to offer to drop off a part of their holiday meals so that we may still partake as we are able without potentially placing them or others at risk. This holiday season looks quite different than years past but hopefully, we'll be able to look forward to many more holiday seasons together if we remain safe and cognizant during this time.

As the progress of a Covid vaccine advances, I'm hopeful that by this time next year the world will be very different from what it is like today. I wish you all the best health - physically and mentally during these times. Reach out to loved ones as safely as possible - not only for your well-being but theirs as well. We all need one another, perhaps more now than ever. 

Tuesday, October 13, 2020

FAP and a Feeding Tube: Jeni LeeAnn's Story

life with a feeding tube

This is a Guest Post with Jeni LeeAnn

I grew up knowing I had a 50/50 chance of having Familial Adenomatous Polyposis (FAP). My dad found out he had FAP just before I was born. His mother had FAP and all she knew growing up was that there was some family digestive disease that was killing some family members. She would up dying at 51 years old from complications of a Desmoid tumor when I was age 6.

My story is a little more complex because I was born with no nasal passages and had many surgeries before I could even remember. I do remember spending a lot of time in the hospital and doctor offices as a child. I was always preparing for a surgery or recovering from one. 

When I turned 16 we did the typical scopes to see if I had FAP. Sure enough I had FAP. I don't remember being sad or depressed about it. It was just another thing to deal with. I was no stranger to hospitals and surgery, so for me it wasn't a huge deal.

I had my large intestine removed when I was 20 and reconnected to my rectum so I don't have an ostomy. Life for me was pretty normal for the next 10 years, just yearly scopes and whatnot. I felt blessed and had no major issues.

Jeni LeeAnn
That all changed in 2009 when I started to have nausea, bloating, and pain. My doctor at the Cleveland Clinic did all the normal scans to see what was going on. What would follow would be about 10 years of guessing and uncertainty. He would do 7 surgeries to try to find out what was going on. Two surgeries were laparoscopic and 5 were full open surgeries. Finally, we found Desmoid tissue where my stomach and small intestine meet. It is as my doctor puts it "strategically placed for maximum damage", if it were even one inch lower it would not be an issue.

The hardest part of this time was the fact that I felt crazy. Every test and scan he did came back normal. I felt like it was all in my head. I even tried telling myself there wasn't a problem and would force myself to eat. That would only cause more issues such as being sick for a week following forced eating.

I was incredibly blessed by my doctor, he trusted me and knew what I was was the way it was. He never once said "sorry, I don't see anything on the scans so I can't do anything for you". He always said "I know something is wrong, we just don't know what it is yet". I know if I had many other doctors, they would have given up on me. I am beyond thankful for my doctor, who kept fighting for me.

The last 5 years have been a series of surgeries to put mesh around the Desmoid tissue and keep it at bay. This sadly, only gave me three weeks of freedom for my symptoms and would have a three month recovery due to the amount of surgeries. This seemed like a very high price for only three weeks of freedom. Then things progressively got worse to the point where after my last surgery in December 2019, I was loosing half a pound every day. I just was not able to eat or drink enough. It became mentally exhausting. So we decided to try a feeding tube. In March 2020, I had my Jejunostomy feeding tube (J-tube) placed.

Now, July 2020, I have had my feeding tube for almost 5 months and it has not been without complications. I had issues with granulation tissue as my body was healing from the surgery. The feeding tube had to be placed a second time which created a second hole. Due to Covid19, my doctor didn't want to risk infection due to any leaks from ingesting food or drink so I was nothing by mouth for three weeks until the hole was healed. 

I clean my feeding tube daily, keeping the site dry and flush the tube every three hours to keep it clean and for me to remain hydrated as I have difficulty drinking enough fluids. I complete nightly feedings for 10-12 hours with a nutrition formula I obtain through a home health agency. I obtain about 75% of my nutrition, or 1000 calories, through the feeding tube and about 500 calories from oral ingestion.

The feeding tube has given me my quality of life back. Food now is back in its proper place in life. It's something I can enjoy when it sounds good not something I have to force and get sick from. I feel incredibly blessed.

Jeni LeeAnn obtained a Bachelor's in Ministry Leadership and has served with her church in various capacities for the last 25 years. Jeni particularly enjoys working with her church's female youth as a youth leader.

Thursday, September 17, 2020

Navigating and Understanding School Accommodations

I was 9 when I had my first surgery that gave me an ileostomy for 6 years before undergoing a straight pull thru reversal. Throughout my academic career following my first surgery, I required accommodations for my learning due to my physical health. My parents obtained a 504 plan to achieve such accommodations during my middle school and high school years. A 504 plan outlines how a school will support a student and prevent learning discrimination of students with disabilities under the civil rights law Section 504 of the Rehabilitation Act.

My accommodations allowed me unfettered restroom access, use of a private restroom where I was able to keep extra clothing and medical supplies I may need in case of my ostomy leaking or a bowel accident after my reversal, and understanding of absences due to illness and hospitalizations. As I recall it was an easy process for my parents to obtain my 504 plans and I remember my schools being very supportive and understanding from my teachers all the way to the principals.

There are no set rules for what should be included in a 504 plan although schools are required to have written 504 policies available. There isn't any standard form or template for 504 plans. 504 plans are not part of special education and so there are fewer protections than in the special education process. To qualify for a 504 plan a child may have any disability that interferes with the child's ability to learn in a general education classroom. According to the 504 Section, a disability substantially limits one or more basic life activities that can include learning, reading, communicating, or thinking. Accommodations to learning are typically included in 504 plans to address specific challenges to learning - this doesn't mean that there are changes to what a child is taught but how they are taught through removing barriers to learning. Accommodations may include changes to the environment, instruction, or how curriculum is presented. On rare occasions, modifications may be included that do change what a child is taught or expected to learn. 

Every school is different so a full evaluation may be required including medical information and school performance. Requests for a 504 plan must be submitted in writing and should go through the 504 Coordinator - the school principal can direct parents regarding who to contact for their request. A meeting will be scheduled to determine if the child qualifies for a 504 plan and what support may be needed. It is advised to review and update the approved 504 plan once a year. Read a sample 504 plan here.

There are also Individualized Education Programs (IEP) that differ from 504 plans. An IEP is a plan for a child's special education experience in school by providing individualized special education and related services to meet the child's needs. IEPs are covered under the Individuals with Disabilities Education Act (IDEA) which is a federal special education law for children with disabilities. To qualify for an IEP a child requires a comprehensive evaluation and must have at least one of the disabilities listed in IDEA that affects the child's educational performance and/or ability to learn and benefit from the general education curriculum and requires specialized instruction to make progress in school. An IEP must include the child's present levels of academic and functional performance, annual education goals, services the child will receive, timing of services, any accommodations or modifications, how the child will participate in standardized tests, and how the child will be included in general education classes and school activities. An IEP team must review the IEP plan once a year and re-evaluate the child's needs every three years.

504 and IEP plans are only available to children through grades K-12. The Section 504 of the Rehabilitation Act still protects college students from discrimination and college students may still receive accommodations although they will not be provided a 504 plan like in grades K-12. It's important for college students to contact the disability services at their colleges to obtain required accommodations.

Friday, August 28, 2020

Vacationing Amidst a Global Pandemic with Chronic Illness

It's been over a year since I took a real vacation. I took a week off work at the end of 2019 to work on projects for my house, but that doesn't really count. I've been in need of a real vacation, particularly with the stress of Covid19. Work has changed with the pandemic resulting in extra responsibilities and increased exposure to others. I'm always mindful to wear all of my PPE to best protect myself and thus far haven't caught it myself.

Right before Covid19 hit the United States, I started a new relationship and this August we reached our 6 month anniversary. This may not seem like a big deal to many but it is for me. After a devastating divorce in 2016, it hasn't been easy for me to find someone I feel as though I have a real chance for a lifetime commitment with.

We decided to drive to a cabin in the mountains, in the middle of a nature preserve, in Colorado to celebrate our relationship milestone. Travel is not the easiest situation for someone like me who has Short Bowel Syndrome (SBS). I don't let my health stop me from enjoying the activities I'm most interested in but that doesn't make participation in activities easy either. We would be driving for a full day with as minimal stops as possible in order to reach our cabin. This meant I would need to take the appropriate amount of Lomotil medication to slow by SBS and limit my food and fluid intake as well to help us minimize our stops for restroom breaks. However, I have to be careful with the amount of Lomotil I take as it will cause me to have intestinal blockages if I'm not careful and when traveling across the United States there are long distances without any facilities. And remember, we're in the middle of a pandemic and a toilet paper shortage. Not every business will allow non-customers to utilize their restrooms and not all businesses even admit to have a restroom. This not the best situation for anyone, especially for someone with gastrointestinal issues. We stocked up on toilet paper - I think we took about 25 rolls and an entire box of Calmoseptine ointment just to be on the safe side. I was over prepared but it's better to be safe than sorry.

The day we left for vacation was actually easier than the day we came back as my intestine was barely active resulting in a lack of appetite and thirst which helped reduce the number of stops we needed to take especially as there was about 2 hours of travel where there weren't any available stops. On our way back, I wasn't as fortunate although we managed fine. I took 5 Lomotil tablets on our way back but I was regularly hungry and thirsty. I was worried about the distance in between available stops so I frequently asked to stop - about every decent sized town that had a facility. I've also increased my water intake this year and so my body has become more accustomed to feeling thirsty and the need to urinate even if I haven't been drinking as much as I usually do anymore. Wearing a mask regularly when in public spaces to help prevent Covid19 transmission has also increased my thirst making it even harder to limit fluid intake. Any food or fluid intake and movement activates my SBS so any activity involving walking also increases my facility needs.

Me and Mike

We finally reached our small cabin in the mountains and though we had some activities in mind, we didn't have much of an itinerary planned. It was more about relaxing away from home and work for us. The cabin belonged to the parents of my boyfriend's friend - who had just moved to a house within the same nature preserve a couple weeks earlier. We visited with his friend's parents often during our trip - enjoying meals and borrowed their off terrain utility vehicle to explore the nature preserve one day. I made sure to take a roll of toilet paper while off roading as the preserve was large and there were no public facilities. During our visit, we would see deer, big horned sheep, birds, eagles, rabbit, and even a bat that almost hit both of us in the face one night.

We decided to visit the nearest large town and enjoyed visiting its' local distillery, breweries, and winery as well as shopping at local shops before dining at a well known local pizzeria for dinner. We traveled to the Royal Gorge but decided not to cross the Gorge's bridge due to a steep admission price. We were able to enjoy the views from available overlooks.

Royal Gorge, Colorado
Chipmunks in St. Elmo's
We spent another day traveling the back dirt roads (which was a 2 hour trip, again no facilities available anywhere) to Mount Princeton in the San Isabel National Forest and driving to St. Elmo's - a ghost town in the national forest. There are still buildings to view in the ghost town and a small shop that remains open to visitors. There you can purchase seed to hand feed the local chipmunks at the Chipmunk Crossing. The chipmunks were very friendly, crawling all over us and into my purse even. The views and interacting with the chipmunks made this my favorite outing for the week.

I managed well during the day with our activities in spite of my SBS, however, the nights were a different story. Due to increased fluid intake and my Lomotil wearing off in the evenings, I required a significant increase in restroom breaks during the night. There was one day when I required to not take any Lomotil in order to allow my system to return to normal and prevent an intestinal blockage from occurring due to prolonged Lomotil use.

Overall, the vacation was a success and we thoroughly enjoyed ourselves. Colorado is a beautiful state and we were able to social distance from others easily to help reduce our risk of Covid19 exposure. If you're considering traveling during the pandemic, remember to be aware of any relevant state or local mandates of the areas you'll be visiting, bring a mask with you and plenty of your necessary medical supplies. I would also suggest toilet paper (you never know!) Consider traveling to less populated areas to reduce your risk of Covid19 exposure and avoid Covid19 hotspots. Each state of the US has a tourism website with great information about their local attractions and places of interest to help plan an interesting trip. Be safe out there!