Monday, December 10, 2018

What We Need From You


Chronic illness is a challenge, period. It's a challenge for those who live with the illness on a daily basis, for caregivers of the ill person, and for those who are involved with the person outside of the home. Chronic illness often leaves those in its wake feeling frustrated and helpless. The ill person struggles to live daily life with the symptoms of chronic illness and friends and family are limited on what they can do to help the ill person. To make matters worse, those of us with chronic illness are often hesitant to ask for help from others due to feeling burdensome and are frequently at a loss ourselves as to what may be helpful. To help all of us, here's a list of things we need from you due to chronic illness.

We need you to be available.
Chronic illness can be extremely isolating at times, particularly if it is a rare disease. Depending on the diagnosis, it can be difficult to identify and communicate with others with the same illness. Social media has helped close the distance among individuals with the same illness but in person visits remain different from online communications. We are further isolated due to difficulty to physically leave our homes except for our medical appointments. Even when we want to visit with others we may not physically feel up to visiting regardless of the communication form. We frequently experience hospitalizations and may only experience encounters with medical providers. Your presence in person, on the phone, or online is a tremendous support to us when we are able to do so.

We need you to listen and encourage.
Due to the elevated risk of isolation among those with chronic illness, we are at higher risk for depression. We easily become frustrated, discouraged, and depressed regarding our health issues and daily struggles. Your willingness to listen to our concerns and to encourage us along the way has an immense impact on our mental health.

We need you to be understanding and forgiving.
Changes in our health and abilities often causes us to feel angry and frustrated as we are adjusting to chronic illness. Furthermore, when we don't feel well we may be ill tempered. We don't mean to direct our frustrations and anger toward others. A gentle reminder when we are acting unfair will help us to realize any damaging behavior and allow us the chance to correct any harmful behavior. Your understanding and forgiveness is paramount in this process.

We need you to help us feel accepted and loved.
Chronic illness typically means changes to our bodies and abilities that may not be visible to others but we remain acutely aware of such changes. We may have difficulty accepting such changes and become insecure and self-conscious of our bodies, symptoms we are experiencing, abilities, and our self-worth. We all want to be accepted by others and this desire may be heightened by chronic illness. Your acceptance helps us to accept ourselves when we are struggling with self-love and acceptance.

We may need your physical assistance.
Chronic illness is high maintenance requiring ongoing medical management that includes frequent medical appointments, tests, procedures, medications and more. These tasks are demanding physically and mentally. As abilities are challenged by chronic illness, we may require your physical assistance in the form of transportation to appointments, assistance obtaining and taking medications, household chores such as cooking, shopping, and cleaning. Changes in our abilities often leaves us feeling as a burden on others resulting in our hesitancy to ask for physical assistance even when it is greatly needed.

We may need you to help us find assistance.
Chronic illness can easily create financial difficulty due to inability to work temporarily or permanently. Our finances may easily be overcome with medical expenses. Locating appropriate resources is not an easy task when one is sick. Therefore, your assistance in locating and applying for resources may be of great service to us during a time that we are having difficulty physically or mentally functioning.

We need you to help advocate.
As a patient, we benefit from advocating for ourselves but your advocacy on our behalf would also be advantageous. We may not always have the physical fortitude to speak up or we may forget questions to ask. You can help us by attending appointments with us and listening to the information presented by medical providers. Additionally, advocacy efforts on a larger scale directed toward public awareness and legislation are stronger with participation by patients and loved ones.

We need you to help us enhance our physical comfort.
Chronic illness often is exacerbated by physical symptoms that are distressing and even painful. We've learned little tricks to help ease our discomfort such as using heating pads, rubbing a painful body spot, or even taking a nap. When you are near, you can help by handing us objects such as a heating pad or our medication so that we may limit our movements, particularly when movement is painful. Sometimes a gentle rub on the afflicted body part or even something as simple as playing with our hair can be soothing. We often fight fatigue that negatively affects our sleep schedules. In such cases, helping us limit our nap time will help us maintain an appropriate sleep schedule while boosting our energy.

We need you to take care of yourself.
Lastly, we realize that providing care and comfort to a chronically ill person can be difficult on others and want your well-being to be taken care of as well. Caregiver burnout can be detrimental to all involved and the last thing we want is our illness to be harmful to you. We understand that one cannot provide around the clock care for us and maintain one's own well-being. Self-care is important for everyone, not just those with chronic illness.

We may not say it enough but all your efforts to support and assist us in the walk of chronic illness is greatly appreciated and we are far better off with you in our lives than without you. We thank you for all your efforts.

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.