Saturday, October 20, 2018

When Chronic Illness is a Deal Breaker

wilted dying roses

It was only about an hour of my time, he had already asked me out on a date. But that all changed when I told him about my health. I've never had someone point blank tell me my chronic illness was a deal breaker for them. My boyfriends and friends have always been supportive and understanding of my health issues. I've been fortunate to surround myself with empathetic individuals.

I do not know what his reasons were nor did I care to know. I knew what was important, it was a deal breaker and although taken aback a bit, I was glad to know sooner rather than later and I hadn't wasted that much time on our conversation. My first thought though was "I'm glad this happened now and not when I was a teenager or young adult". I had my ostomy when I was 9 until I was about 15. Growing up with an ostomy was very difficult for me emotionally and mentally. My self esteem suffered greatly under the pressure of growing up with an ostomy and later it would be an issue after my ostomy reversal and dealing with Short Bowel Syndrome. I was not as confident in my body or my health issues nor was I as honest and upfront about my health as I am now. How devastating it would have been for my fragile ego as a teenager or young adult to be told that my health made me not good enough for a relationship. Now I realize this is not a reflection on me but on the person making such a statement and so I am merely grateful to have that person out of my life.

It also worried me about this person in particular as he cares for children as a nurse practitioner in a children's emergency room. If he could be so non-understanding with an adult, how is he treating his young patients for their health issues? And what about his future partner as her health declines over time? My heart ached for these people affected by his poor attitude toward illness. I escaped with very little time invested but my well-being is not in his hands.

Working in healthcare myself, I look forward to romantic interests and friendships with other healthcare professionals as we are accustomed to dealing with illness and all the usual worries individuals have about illness and symptoms can be put aside with healthcare professionals. Evidently this is not the case for all healthcare professionals but I still believe it is with the majority of us. Most of us are desensitized to symptoms of illness and disease and so we can let our guards down with one another. I suppose with any other field or persons, there are good ones and bad ones.

If you are confronted with a person who decides your worth is not deserving due to your illness, I encourage you to not take it personal and try not to let it affect your mental well-being as this is a pure reflection on that person and not on yourself. You are greater than this judging person. You are worth a lot and deserving of all the love and kindness in the world just like anyone else. Your illness does not detract from you as a person. If anything, it adds to you as you are a survivor with wisdom and strength others are not privy to with their good health. Hold strong in yourself and shrug off the haters.

Saturday, September 29, 2018

When Caregiving is a Vacation

colorado mountains

I didn't realize what was happening until it was too late. I didn't recognize that I was staying in a toxic relationship until I just couldn't take it anymore. The end was perfect timing for a family cruise vacation to Hawaii. It was going to be a perfect mental health cleanse. Only it didn't happen. We experienced passport issues at the airport which prevented us from reaching the cruise ship and embarking on a lifelong dream with my parents. I was completely devastated upon this discovery. We had been planning this vacation for over a year. My heart broke as we left the airport to return home. 

I turned to my friends for comfort and as it turned out, one was due to have knee surgery the following week. I offered to be his caregiver for a week. It wasn't the vacation I expected but it turned out to be something we both needed.

I drove to Colorado and arrived the night before his surgery. We enjoyed dinner out before returning to his home to prepare our overnight bags for what originally was to be an inpatient surgery. I've never really been on the caregiving side so this was to be a new experience for me. I've never waited in a hospital waiting room for someone else undergoing surgery or procedures - it's always been me as the hospital patient. We woke up early on surgery day and made our way to the hospital. I stayed with him until they finished prepping him for surgery and anxiously waited in the waiting room for the surgery to be completed. Finally, the surgeon came out to update me on a successful surgery. With relief, I waited for him to be stable enough in recovery for me to join him. Unfortunately, he had a bit more difficulty coming out of anesthesia and some nausea issues from the pain medicine. These complications delayed our reunion in recovery by a couple hours. While waiting, I updated his family members on his condition until we were finally able to return to his home. 

Aspens starting to change color
We were finally released after the inpatient admission changed to outpatient. We returned home and I was officially a caregiver now. I made sure he had food and drink, his medications at the appropriate times, and did all the little things he needed done while recovering. Just like with anyone in pain and recovering from major surgery, there were times he didn't feel well and it showed emotionally and verbally. I shrugged it off - knowing that I had been the same way after my surgeries. For the next few days we remained cooped up in the house except for when I needed to run errands for him. He asked me to stay an extra day and when he was feeling more like himself, we enjoyed an afternoon road trip through the beautiful Colorado mountains, before my departure the following day.

I didn't mind being cooped up in the house. I was just grateful for not only being able to spend time with my friend but also the break away from my life back home. Nor did I mind providing care to my friend, running errands, and getting up multiple times during the night to help him as needed. My time as a caregiver was only a week and I appreciate the difficulties and strain that accompanies caregiving - particularly long term caregiving. I enjoyed my time as a caregiver. It became a blessing in disguise as we both needed my presence there. He needed a caregiver and I needed the time away from my life. 

I left my friend to return home knowing that the worst part of his recovery had passed and my mental health had improved. We were both grateful for the time and care we provided to each other - me as a physical caregiver and him as an emotional caregiver. 

Sunday, August 26, 2018

A Love Hate Relationship with Medicine

walking on a train track

I have a very tumultuous relationship with the medication Lomotil, generic is Lonox. This relationship changes periodically throughout the years. I take Lomotil to slow my bowel movements due to my Short Bowel Syndrome. The amount of Lomotil I require has also changed throughout the years in relation to how my body is affected by the medication.

During the 6 years that I had an ileostomy, I never took Lomotil. However, when I was able to have my ostomy reversed in high school, I required Lomotil to slow my bowels and help with my control. I started off requiring 4 pills a day and I would take these all at once in the morning and they would last throughout the day. I don't remember noticing any negative side effects such as increased pain or cramping. As that first year progressed so did my adhesions causing a stricture. I endured daily vomiting and excessive diarrhea that required surgery to remove the adhesions causing the stricture. For a period, I not only required Lomotil at maximum dose but also Sandostatin shots. But none of it worked to slow my bowels. I had a negative side effect to the Sandostatin after a while - it caused my elbow to lock. And I was forced to rely on the Lomotil by itself. Gradually throughout a year as I prepared for starting college, my body adapted once again and the Lomotil became sufficient in its job. Due to manufacturing changes, I had to change from the generic form to the brand name for continued efficiency. I managed throughout college taking the maximum dosage and remaining active, completing all the activities I wanted with minimal difficulty.

With my first full time job came new insurance that didn't cover the brand name and I was forced to change to the generic form of Lomotil. Manufacturing must have changed or my body changed once again as the generic form was now sufficient. And then I was suddenly able to decrease the amount I took until I was able to stop it all together for the most part. When I was having a particularly busy day I would take some, varying on the amount based on my activity for the day. As the year progressed with this job so did my stress level. The intense stress of my job wreaked havoc on my body and Lomotil was no longer sufficient even at maximum dosing - my Short Bowel Syndrome was out of control and I had to quit my job. I took time to heal and lessons from this job experience to better cope with future job stress without the bodily toll. Over time, I was able to stop the Lomotil once again and only take it as needed for particularly busy days.

Now, almost 10 years later and I have new problems - increased adhesions. My adhesions cause chronic pain and nausea and I hate taking Lomotil as it increases my pain while slowing my bowels. And if I take too much Lomotil for too long of a period, I risk intestinal blockage. So now I only take Lomotil when I'm having a Short Bowel flare or when I'm going to be particularly busy, such as for an outing or on vacation. I judge the day's activities and bathroom access for determining my dosage for the day. When I'm on vacation, such as on a cruise, I will take maximum dosage as I am very busy during these vacation. If I'm going on an outing, I may just take one or two pills.

The side effects of my Lomotil with my adhesions often causes me to dread outings and activity although I enjoy the activity itself. It's a hard balance to obtain between the bloating and pain that's increased by taking Lomotil with making sure to find a bathroom with any activity. My body seems to undergo periodic changes and so I await to see how it will fare over the next few years and what changes are on the horizon.

Saturday, July 28, 2018

Protecting the Heart Against Anemia

red blood cells

I've struggled with iron deficiency anemia since I had my colon removed in June of 1995. I was soon started on iron tablets, one with every meal. This managed my iron with a low normal hemoglobin for years but I was never able to reach the desired 14-15 hemoglobin my pediatrician so desired for me. Two decades later when I unexpectedly hospitalized in May of 2015, I left the hospital with increased chronic pain and nausea. My new doctor directed me to stop my iron tablets, stating they were contributing to my pain and I didn't need them anyway. Well, I did need them and I was referred to a hematologist for iron infusion therapy. My hematologist also advised me to switch from iron ferrous to iron gluconate, as the gluconate is easier on the stomach. Although I still have chronic stomach pain, it is reduced with the iron tablet switch. Why would I take iron tablets still if I'm getting iron infusion therapy? Why to prolong the time in between iron infusion treatments. It has helped, I required iron infusions every 3-4 months.

So why do we need to worry so much about iron? Not only does it have bothersome short term symptoms but there are also long term dangers if left untreated. Long term effects I didn't even know about until I started researching.

When we're anemic, our bodies are unable to produce the required amount of red blood cells we need to carry oxygen throughout our bodies to all our organs and body parts. These red blood cells also carry carbon dioxide out of your body to be exhaled. To create red blood cells, the body requires nutrients such as Folate and B-12. So it's important to have these levels checked as well.

Iron deficiency anemia is common for those missing the colon and/or part of the small intestine. Symptoms include:
  • Fatigue
  • Weakness
  • Pale skin
  • Irregular heartbeats
  • Shortness of breath
  • Dizziness or lightheadedness
  • Chest pain
  • Cold extremities
  • Headache
As you can tell, anemia is not a picnic. When my iron levels are low, I experience extreme tiredness starting as early as 10 am after a full night's rest. I will have a generalized discomfort to my body, an achiness and restlessness. It's difficult for me to keep my eyes open and I become short of breath easily, I will feel my heart beating inside my chest. I am always cold so I don't notice a difference there. And I'm told that I'm more pale than usual.

What I didn't realize though about prolonged anemia, is that it can cause heart problems. Remember, that short term effect of an irregular heartbeat? Prolonged it can cause arrhythmia (rapid, irregular heartbeat) which can lead to an enlarged heart or heart failure as the heart is weakened by overworking to pump more blood than normal to compensate for a lack of oxygen in the blood. This can lead to other bothersome symptoms, additional serious medical conditions, and death.

Signs and symptoms of heart failure include
  • Shortness of breath
  • Fatigue
  • Weakness
  • Swelling
  • Arrhythmia
  • Persistent cough or wheezing with white or pink blood phlegm or mucus
  • Increased urination
  • Ascites
  • Rapid weight gain from fluid retention
  • Lack of appetite and nausea
  • Difficulty concentrating
Additional serious medical conditions include:
  • Kidney damage or failure
  • Heart valve problems
  • Liver damage
To help maintain proper iron levels, talk to your doctor about
  • Diet changes for foods rich in Iron, Folate, Vitamins B-12 and C
  • Supplements for Iron, Folate, Vitamins B-12 and C
  • Iron Infusion Therapies
  • Any other recommendations

If you have iron deficiency anemia, I promise getting treatment to properly manage your iron levels will make you feel tremendously better. As much as I hate needles, I love my iron infusions.

Saturday, June 9, 2018

A Look at Caregiving

life's a polyp

This is a Guest Post by My Father

My daughter asked me to write about my experiences as a caregiver to herself and her mother. It made me contemplate for a while as I really don't consider myself a caregiver. In my heart, I am just a husband and father doing what those roles routinely require and the fact that my wife and daughter are chronically ill is just another dimension to my husband and father roles.

Cambridge Dictionary defines a caregiver as "someone who provides for the needs of people who are ill or can't provide for their own needs". So, okay, I guess I am a caregiver even though I consider my role more of that as a husband and parent. I don't consider providing health related service to my family any different than changing diapers for my daughter when she was a baby, it's just one of those things you do. My wife is fond of saying "You do what you need to do".

I also provide service for my wife and daughter beyond their illnesses wherever they need support. For example, my wife required a new car battery. I completed the task at hand as she was in need of assistance and she has a weight lifting restriction. I tend to categorize my service as things that need to be provided because I am the best source not because of their chronic illnesses. I complete certain tasks that are beyond their individual skills or abilities, it is more than I expect them to do. They are health related although I didn't consider the health portion in my willingness to complete such tasks.

A lot of routine husband and parent duties are health related but a lot are just duties that aren't necessarily required because of chronic illness and others cross categories. I complete required maintenance of our homes as well as medically required tasks such as my wife's daily eye drops, transportation to medical procedures, or picking up prescriptions. My daughter was on TPN for a while during her high school years and my wife and I were both taught how to provide care for her central line and feedings. It became a priority item in the daily routine and we tried to make it a fun activity and family bonding time rather than a time of an unwelcomed dreaded chore.

When we first realized that my wife would be facing a life time of health issues related to her Familial Polyposis and Type II Diabetes diagnoses there was concern on my part about the amount of daily time this would require of myself. In retrospect, it hasn't been much different as the extra work involved became part of being an actively involved family member. There are always things that need to be accomplished on a daily basis and the health related items fit into normal daily activities quite well. It's all part of being an active family member.

Chronic illness is a day by day process that can bring a lot of frustration, anger, depression, and angst for the patient and the family. Being the regularly healthy one in our family trio means that I need to just be a stable, dependable source for the needs that arise on any given day. It may be a comforting hug, a kind and supportive word, a ride to the ER, or taking out the trash and preparing a meal. Because my health is stable, I can provide such services as a caregiver with little burden or difficulty.

life's a polyp
An attitude of welcoming the opportunity to serve rather than resentment of each chore is an essential ingredient in creating a healthy, mutually respectful and loving relationship between caregiver and recipient. Using the time to strengthen bonds, deepen the relationship and draw closer together instead of letting it draw apart and create barriers. Chronic illness is generally no one's fault, it just is; it's something to learn to live with as best as you can regardless of your role. We live day to day, appreciating the good days that are available to us. Being supportive, encouraging, willing and happy to serve, being a support that can be depended upon regardless of the time or day. Instead of considering the extra health related duties as unwanted chores, consider them an opportunity to serve a loved one and perform that service with humility allowing it to be a time of comradeship and an enriching quality time.

Being helpless to improve the situation, feeling guilty as the healthy individual and they aren't, being stretched and stressed can be a daily issue for a caregiver. Utilizing those healthier times to enjoy life together helps to relax and unwind, to reflect and re-group for one's physical and mental well-being is important. Being thankful daily for where you are at this time and place is a good way to quantify the caregiving role and the rewards that are received in performing service to others. Because at the end of the day, as my daughter reminds me with her request for this article: I am a caregiver and I'm honored to have such a role.