Overreactions to Chronic Illness

I've noticed as I've re-entered the dating world following my divorce a common trend among those who may be labeled as healthy themselves and have a limited experience of chronic illness - they tend to overreact to my health symptoms. I realize this comes from a place of concern and uncertainty regarding what they should do to help me and I would prefer their concern than for them to dismiss my symptoms. But I can't help but almost laugh to myself at their overreactions all the same.

One partner asked to call an ambulance whenever I wasn't feeling well. Others regularly advised me to see a doctor or go to the ER when I'm ill. They haven't had the experience yet to trust that I know when I need to seek help and when I don't. I imagine they feel helpless as they listen and watch me suffer from my symptoms as well. Those of us with chronic illness have learned our bodies over time and we can tell when professional intervention is necessary and when we can let it slide until the next check up appointment.

For instance, I was having early symptoms of a possible intestinal blockage. My partner encouraged me to go to the doctor. I haven't had a multitude of intestinal blockages but I've had enough to know that seeking medical attention at this stage wasn't necessary as I wasn't even sure I was having an intestinal blockage yet. I was able to still function and I wasn't having any of the for certain signs of an intestinal blockage - just a concern that I could be starting to. Even if I was having an intestinal blockage, I try the various tricks recommended to try to help the intestinal blockage pass before heading to the ER.

From time to time I feel very weak and it is even difficult to walk or talk. I end up staring off into space, not responding to those around me until my energy can be restored. This would send one partner into a scare and he would threaten to call an ambulance. Anyone who knows me knows that one of the last things I want done is for an ambulance to be called for me. It has yet to be necessary and I don't want the expense of an ambulance ride to the hospital when someone could drive me to the hospital if needed. In this case I had to muster all my strength to tell my partner no to an ambulance and walk to the bedroom to rest.

My father has helped provide care to my mother for the majority of their marriage and to me for the majority of my life. He is relatively healthy but through his experiences as a caregiver, he's learned to trust my mother and myself. He acknowledges that he doesn't know exactly how we are feeling or what our tolerances are for pain and other bothersome symptoms. He's resigned himself to follow our lead - he offers assistance and helps us is whatever ways he can - and he waits for us to tell him when enough is enough and we need help obtaining medical intervention. He has told me how helpless he feels when we're ill feeling but he realizes we will let him know what kind of help we need as we know our bodies and limitations better than anyone.

If I were to call the doctor or go to the emergency room every time I felt sick, I would be calling or be there every . single . day. And unfortunately, that's how it is with a lot of us with chronic illness. We don't experience regular reprieves of bothersome symptoms. We feel ill, we are tired, and we are in pain the majority of the time. We have learned what is normal for our bodies and what is not. We have learned to live with symptoms to the best of our abilities and we can tell when those symptoms increase to the point of requiring additional medical intervention. The sad truth is that we are lucky if we have found a way to manage our symptoms for the most part. It may be too much to ask for a cure but management may be a real possibility.

Managing Anxiety and Depression

It's difficult to not experience anxiety or depression at some point in life, particularly when dealing with a rare disease or other chronic illness. Such feelings at times are normal to experience but when they become long term feelings is when they can become more inhibitive or detrimental.

It's helpful to understand the cyclical relationship between thoughts, mood, and behavior and how they interact with one another. It doesn't matter where you start in the cycle, each segment will affect the rest.

For example, if I have the negative thought that my health will not improve leading to depressive feelings which may manifest in behaviors such as isolation and loss of interest in activities. These behaviors feed into new thoughts such as I'm never able to do anything which may make me feel more depressed and engage in increasing depressive behaviors.

Each part acts as fuel, reinforcing the cycle to continue. And so this is the same for other moods such as anxiousness or happiness.

The easiest way to change the cycle is to stop a negative thought in its tracks and replace it with a more positive thought. However, negative thoughts occur so automatically that we often fail to realize that we had a negative thought. It helps to know what kind of negative thoughts to look out for in order to start recognizing the occurrence of a negative thought.

• All or nothing thinking. Looking at situations as black and white with no middle ground. Either I can do everything or I can't do anything.
• Overgeneralization. Applying one experience to all future expectations. I can't do anything now or ever.
• Filtering out or diminishing the positive. Only recognizing the negative, ignoring the positive or excusing why the positive didn't count. I was able to do something this time but that's not how it usually is.
• Jumping to conclusions. Drawing negative conclusions or expectations without any evidence to be the case. I won't be able to do anything anyway, so why try.
• Emotional reasoning. Belief that what you emotionally feel is the reality of a situation. I feel like I can't do anything so therefore I can't nor will be.
• Expecting perfection. Holding yourself to a strict level of standards with no room for error or difficulty living up to unrealistic expectations. I can't do it the way I want so I can't do it.
• Personalizing everything. Taking others words or actions personally even if they were not directed at you. They didn't invite me to their activity because they don't care about me.

Familiarizing ourselves with the types of negative thoughts can help us to recognize when we have a negative or discouraging thought. If you have a bothersome feelings, ask yourself the following questions:

• What happened that is bothering me?
• What were my first thoughts about it?
• How did I feel when it happened?
• What did I do?
• What happened as a result?
• Am I satisfied with that outcome?

These questions will help us to understand our thoughts and feelings associated with an experience or situation. Once we understand what is going on behind the scenes in our mind, we can tackle the problem and work toward a more positive experience. This is particularly helpful by changing or reframing the identified negative thought when such an occurrence occurs.

Instead of thinking "I can't do anything because I'm sick", we can reframe this discouraging thought to "I'm not able to do as much as I would like to right now, but tomorrow I may be able to do more than I am today".

Negative thoughts are not easy to change over night. We engage in negative, discouraging thoughts so abundantly as human beings that it has become an automatic habit. But like with any habit, habits can be changed. It just takes continued effort and determination to create a new habit. So don't give up, it may take some time but it will be helpful for mental well-being to continue such efforts.

Changing behaviors can also help to enhance positive thoughts and emotions. Often when we are anxious or depressed we will isolate, decrease activity levels, over sleep or not sleep, and increase or decrease food intake. There are a number of behaviors that we can engage in to help calm the mind and those bothersome feelings.

• Here's a step by step guide to such helpful behavior exercises.
• Try out these additional tips to help manage stress and anxiety related to illness.

Fohm Cleanser: A Sponsored Review

Disclaimer: I have been given Fohm as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I have Short Bowel Syndrome which means I use the restroom 20+ times a day for loose bowel movements as a result of having my colon and part of my small intestine removed. My skin is sensitive due to the frequent restroom use and regular toilet paper can be harsh on such sensitive skin. To help combat skin irritation, I utilize Calmoseptine ointment after each restroom use. Not only is my rear sensitive but so is my vaginal skin that has only worsened over the years. For individuals like me, a wet cleanser can be helpful in mitigating the effects of frequent restroom use associated with GI issues. Typically, individuals think of wet cleansing wipes but a wet cleansing solution, such as Fohm can be a game changer.

Fohm cleanser is a touch-less dispenser system to replace wet wipes to not only help clean your rear but also prevent build up in your sewer system of excessive wet wipes that will also help reduce pollution and sewer line issues.

I was provided the touch-less dispenser and a bottle of Fohm cleanser solution that is marked to last 6 weeks. The cleansing solution is liquid and when activated through the dispenser turns to a foam. One can purchase Fohm on a subscription service basis or a single cleanser refill. The dispenser comes with a USB charger to charge the dispenser batteries to allow for touch-less dispensing of the cleanser on your existing toilet paper. However, it does not come with the USB cube so I had to obtain my own cube for charging the dispenser.

Upon first glance, the system didn't come with very detailed instructions although was simple enough to assemble. For those who suffer with pain or arthritis in their hands, this system may be difficult to assemble without some assistance from someone else. The cleanser bottle is made with a durable plastic that is not the easiest to squeeze for emptying the cleansing solution into the dispenser and the top of the dispenser was not particularly easy to screw on tightly to prevent spills. I would suggest charging the dispenser before adding the cleanser to the dispenser.

I placed the dispenser on the back of the toilet tank for easy access for cleansing my skin after using dry toilet paper. The downside of the dispensing system is that it is not portable for continued use outside of the home unlike hand sprays that may easily be concealed for use no matter where you are. For someone with regular bowel movements (i.e. with a colon who isn't having diarrhea), it may be suggested to only use toilet paper with the cleansing solution to clean the skin. However, due to my Short Bowel Syndrome, I found it cleaner and easier to clean with dry toilet paper first followed by the cleansing solution. The system dispenses a fair amount of foam solution when activated and can be changed to dispense 10 ml or 25 ml. I always fear using new cleansing products as ingredients may cause a burning sensation to already sensitive and irritated skin. This was not the case with Fohm cleanser though. It was comfortable on my rear and vaginal sensitive skin areas even at my rawest skin moments. 

With continued use I have noticed less irritation to my vaginal skin in particular. I have not felt able to stop using the Calmoseptine ointment on my rear though even with continued use of Fohm. Others may be able to forgo such ointment use though. Overall, I was pleased with the Fohm product and would recommend it to others with GI issues or who just want a more eco-friendly cleansing option.

Coping with Life Altering Breakups

The 27th will be the third anniversary of my divorce. I view this day as my independence day - the day I regained my freedom as an independent woman free from the confines of being legally tied to another person and the damage that legality can cause to a person when all is betrayed or jeopardized.

Although I still celebrate this freedom day, this year it comes with some heartache. Perhaps this is due to the ending of my last relationship almost six months ago. It was the first relationship since my divorce where I allowed myself to deeply love again and for a while I thought this relationship would be a forever relationship. Like my dreams and hopes pinned on my marriage were dashed, so it would be with this relationship as well.

Just like with the ending of any deep relationship, there are bouts of sadness and pain that creep in afterwards when you think you've fully healed. And so it is as my anniversary approaches. I am reminded of the life I once had and the life I have now. I had a good life then and I still do now - they're just different and honestly, in the long run it is a far better life now.

In my marriage, we were building a life together. We were planning to build our dream home on a farm I bought in the country and for years planned on surrogacy for a child of our own. He was trying to make his own side business work of his own passions and interests. We lived as partners and we had a great relationship and marriage - until we didn't anymore. I remember the day that my life began to fall apart, only I didn't truly realize it yet. My love for my husband and my optimism in us kept me in denial of the true level of pain that had been inflicted upon me and our relationship. In the end, the pain was too much and I couldn't get past it. Eventually, I realized that the level of security I require for my own well-being could only be obtained and protected on my own - outside of any marriage or legalities that would tie me to another person and their choices.

My life changed - there was no more plans for a deeply desired baby, I moved back home to my parents and eventually sold the farm. I didn't know what I would do or where I would live permanently. My mind frantically raced between all the possibilities. One moment I was going to permanently stay with my parents and provide for them as they age or I would build my own house on their acreage so that I would be near but separate. Or maybe I would go ahead and build a house on my farm or just move into my new boyfriend's house. The options were endless and I found myself able to advocate for every possibility. But in reality, I was still grieving. My life was different and there were too many options available. I didn't know what I wanted my life to become.

The times following our separation and divorce were truly freeing.
The weight of all the pain and

stress had been lifted from me and I had the whole world ahead of me full of adventures awaiting me. Sometimes I still am gifted the surreal feeling of my present life with all the freedom of opportunities that singledom provides - the never ending possibilities that lie ahead for me with no one else to answer to or interfere with my decisions or life. The world is open to me and I can choose any path I so wish. This surreal feeling has waned over the years but it refreshes itself periodically and I am left amazed at my life. I left a marriage that had unexpectedly turned harmful to my future security and I managed to pick myself up (albeit with the support of my parents and friends) and now I own my own home. I never would have suspected owning your own home could provide such joyous, prideful feelings within oneself. At times it is hard to believe I am where I am in life - that surreal feeling that I made it on my own.

My last relationship lasted a year, longer than it should have for my own mental well-being. We lived together and it was nice to share a life with someone beyond just the weekly date. It wasn't a partnership like I wanted but it was the closest I had come since my marriage and we shared a deep love for a while. After our break up, I had to become accustomed to being on my own again in my home. This allowed me to reacquaint myself with my home and that surreal feeling of it all being mine and mine alone. That surreal freedom I had lost while in this relationship.

I've rediscovered my freedom and the wonderfulness of my present life since then. Sure, I hope to find a partner to spend my life with someday. It would be nice but so is the freedom of independence. And so for now, I will savor this freedom and cherish the surreal feeling of my accomplishments and the adventures that await me.

Milestone Depression

I never was one to attach a lot of meaning to holidays or birthdays, they were just another day, another year. Sure I enjoyed celebrating with loved ones but they remained just another day. I even recognized birthdays as a milestone of survival. However, my outlook on holidays drastically changed over the last couple of years for two particular days - my birthday and New Year's. Now I enter a period of mourning around these days in anticipatory grief over what the future holds.

I have always wanted my parents to outlive me and there were times that this was nearly the case. I fear the real possibility of outliving my parents. And as I age, this fear has intensified. My birthday and New Year's have become to serve as painful reminders of this fear as I become another year closer to my fears becoming reality. I no longer enjoy these days, instead I become overwhelmed with fear and depressive feelings - spending hours sobbing while my mind is consumed.

As a child and teenager, there were times that my doctors were amazed at my survival of times that I wasn't expected to live through. Afterwards, I was convinced that I would not live past age 21. When I turned 22, I was overcome with feelings of bewilderment and grief at passing 21. I had come to accept my death and was prepared for it. I didn't know what to think about continuing onward with life when I was utterly convinced I wouldn't see 22. My health was still precarious enough that it wasn't unreasonable to think my life was limited. Age 21 has come and gone and now, I find age 40 to be a prime limit to my life. At 40, my parents should still be living and they would be recipients of my life insurance policies that would allow them to be taken care of financially and medically in their older years. My parents' comfort and security is more important and means more to me than a long life for myself nor do I want to endure the loss of my parents. As selfish as that may be, their loss is a tremendous fear of mine and I truly believe they would handle losing me better than I would handle losing them.

And so for the day of and a few days past my birthday or New Year's I am overcome with mourning for another year added to my age and my parents' ages. This state doesn't stay for long but it is long enough to remove any joy these holidays may have held for me in the past. I try to remind myself during these days to enjoy the time that we do have together and no one knows the future. After a couple of days the intense feelings extinguish themselves until the next year when they are renewed with acuity once again. The fear remains with me on a daily basis in the back of my mind, however, not as acute as on these particular holidays. Most days it is easily manageable as I practice reframing my bothersome thoughts and distract myself with activities. It's important to focus on the present so that we don't get lost in the fears of the future.

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.

When Chronic Illness is a Deal Breaker

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.

When Caregiving is a Vacation

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. 

A Love Hate Relationship with Medicine

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.

Protecting the Heart Against Anemia

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.

A Look at Caregiving

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.

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.

False Hope

With the changes to my health over the last two years, I can't help but believe that this is the healthiest I will be. Actually, in truth, I believe my healthiest days are behind me and this is my new level of healthy - a step down from where I was and therefore everything else that is to follow will only be worse.

All in all to try to fix the problem of my declining health over the last two years, I've endured 3 upper scopes, 1 lower scope, CT scan, labs including stool specimen testing. And although things have been ruled out as culprits and some culprits have been found, the underlying issues remain - I have chronic nausea and pain. And perhaps this is all primarily from the adhesions as my doctor diagnosed last year. Even if this is the case, the fact then remains that it will worsen as the adhesions continue to worsen and surgery for adhesion removal is inevitable - and so are risks that come with such surgery.

I lived with an ileostomy for six years before I was finally able to have my ostomy reversed with a straight pull through. Reversal wasn't a guarantee for me and whenever there is a surgery involving my remaining intestine, there will be risk of another ileostomy - only truly permanent this time.

This is my fear for the future. Although better equipped to adjust and accept an ostomy now versus when I was a teenager, I still do not prefer an ostomy. With all the problems that my straight pull through has with the development of short bowel syndrome, I still do not regret my decision for reversal and I want to maintain my reversal.
And to further complicate my health, I was recently diagnosed with Acquired Polycystic Kidney Disease. I don't have a family history of Polycystic Kidney Disease and haven't undergone genetic testing for the gene so it is assumed that it is a sponatenous manifestation within me. My nephrologist advised I have an estimated 20 years before I start to experience kidney issues, which at that time it will be likely that my kidneys will start to fail from an abundance of renal cysts and will require kidney transplant or dialysis if I want to continue living. My nephrologist advised that due to my Familial Polyposis, I am greater risk of cysts and cancer occurring. And so I will be monitored once a year with a CT Scan to monitor for cysts and tumors on my kidneys. As long as I can stave off my GI issues from worsening, I have an estimated 20 years of health remaining before I will begin to experience another change in health.

I struggle with this reality and with the present. I'm told to not give up hope for improvement of my symptoms. But at some point, false hope can be dangerous. I want my health to improve and perhaps it will but the odds are, this is it for now. I'm remaining open to trying a few more things but I'm trying to balance myself between positive hope and false hope. I've learned that when we cling to false hope, we are hit hard with a different reality. A reality that we could have been better prepared for if we had accepted the chance that exists for what we fear.

When I'm Asked How I'm Doing

When you have a chronic illness, sometimes it's hard to know how to answer when asked how you're doing. The odds are, we're not doing very well. We have daily symptoms we're contending with and most of the time we don't feel well but we don't want to admit that to others. We question the sincerity of the question and what is considered to be too much information when we answer. So we lie usually instead of answering the truth - the truth being that we aren't doing well.

I always question does someone really want the truth or just the brief, expected answer so that conversation can move along. I rarely answer honestly. I entered the habit of answering "okay" or "good" even though it was a lie. I was tolerating the moment even though internally, I felt like death warmed over.

I became tired of answering with a lie and a superficial glancing over my daily health. I wanted a more sincere answer but I also didn't want to dwell on the answer, particularly if my well being is only being sought after on a superficial level, out of societal nicities. I hate the looks of pity when I answer with a truthful "I'm doing horrible" type of answer.

I tried out different answers that felt genuine for me but none felt right. To say I'm functioning is true but it invites additional questioning and feelings of pity I thought. I'm alive didn't work well either for me. I finally settled on "I'm hanging in".

I'm hanging in provides a truthful answer without the invite for pity from others. It allows for further conversation but doesn't require additional questioning. It's clear and to the point - I'm managing but I could be doing better but I'm not worse either.

How do you answer others when asked how you're doing? What have you found works best for you? Share with me.

What I Learned From Divorce

When I divorced, I never could have been prepared for what to expect. No one tells you what you should expect, there is no handbook. Your world is turned upside down and you feel like your life is out of control. You simply live in trial and error and commiserate with other divorcees who can relate to your experiences. There is so much you learn during this period that can last for years even. The navigating, the learning may never cease. I'm only two years post divorce and although my married days feel like a lifetime ago, they remain with me although diminished in intensity.

From the initial moment I made the final and clear decision to end my marriage I began to experience an exhilarating time; I was filled with emotions of relief that were freeing to my mind and soul. I no longer had to hold on to the stress and worry that had accompanied me for the months previously while I battled depression and the stress of trying to hold on to everything while maintaining my sanity. With all this freedom, my energy levels soared as I was no longer burdened by immense stress. I started exercising, I could hardly sleep due to my abundance of energy and my excitement for the possibilities of the future. I felt limitless and carefree, unburdened by my final decision.

I began to re-enter the dating world shortly after, as is a common occurrence. Looking back, I realize now that a divorced individual is a mess for at least a year following the divorce and for that person's own sanity and sake, really shouldn't enter into relationships during this time. Refraining from re-entering the dating world for a year would be a very difficult commitment for most individuals. As humans, we long for companionship and intimacy with others. We tend to enjoy the thrill of finding potential new partners and participating in the dating realm. We feel desired by others giving us attention after an ordeal such as a divorce. The options for potential partners is an exciting new world that is reopened to us. It's a thrill that is hard to deny. The first year particularly is for a time of healing and rediscovering one's self. I had an intense amount of energy and drive for my limitless future but my mind was so scattered and pulled apart by all the options that now laid available to me. My mind raced between options and even though I set goals and plans for myself, I didn't stay with a plan for long before racing to another idea and option. It must have been exhausting for anyone listening to my rambling ideas and trying to keep up with my racing mind. Just as I wasn't ready to commit to another relationship, I wasn't ready to commit to even a singular life plan.

I was not ready for an emotionally invested relationship. I began to become terrified of relationships and kept a cold, emotional distance between myself and others. I've never had a great record of dating and I figured this time around wouldn't be any different; only this time I wouldn't marry again. I would forever be entering and exiting dating relationships. I vowed to myself that I would never allow myself to become lost to another, I would maintain my physical, financial, and emotional independence from another. Relationships became an "easy come, easy go" mentality for me as I kept distance between myself and a partner. I began to view relationships as impermanent. I survived what I thought I wouldn't - losing the person I considered my soulmate and life partner. If I could survive that and be happy again, then the same is true for any future relationship; I will survive any relationship ending. I wouldn't allow myself to become overly emotionally invested and as a result, a failed relationship was merely an inconvenience that could soon be replaced by another potential suitor. I spent a year dating men younger than myself and I learned to appreciate men who were closer to my own age. Not only was I not emotionally available but I also didn't want to deal with immaturity or drama. I had experienced enough drama with my own divorce, I didn't need or want additional drama brought into my life by another individual. I wanted simplicity and partners who themselves were an emotionally strong individual. I was tired of being the emotionally strong person all the time. I wanted someone who could stand their own. Although I have allowed myself to find a deep love again with the intent for building a lifetime together, I maintain a conscious eye on my independence. I've learned that with the right person, I don't have to keep a cold, emotional distance between ourselves as a means to protect myself. I can let another into my heart and remain independent and maintain a healthy self. Becoming cold and distant does not make a healthy relationship and now that I've re-opened myself to a deep and loving relationship, I am much happier than I was in previous relationships. In spite of finding a deep love, for good or bad, without any effort I maintain the view of relationships being impermanent.

While navigating the divorced world, I realized that all my new moments are tainted by past memories and experiences during my marriage. This has lessened with time, but there are stinging moments that cross my heart as I remember a time with my now former spouse or when I am embarking upon a new adventure that would have been with my former spouse if divorce had not occurred. It was quite painful as such events would trigger a flood of memories and grief over what was and what was supposed to be. I had a difficult time coping with vacationing and buying a home on my own rather than with my former spouse. I felt as though everywhere I turned, there was a tainted moment that should have been experienced with my former spouse but now was my sole experience. The sting has diminished in intensity and length, but it remains even though fleeting as it is.

My life changed drastically upon my decision to divorce. I gave up a lot but gained a lot in the end. Divorce was not an easy decision; working my way to that final decision was soul wrenching and I spiraled in a well of anger and depression. It was not an easy transition to make, the transformation of myself couldn't be rushed. But as my heart and mind began to heal though from the aftermath, I've come to love my life and everyday I am grateful for this new, even surreal life.

The upheaval of divorce varies from person to person and situation to situation. This may be
exacerbated any time divorce is contested or involves minor children or property. The entanglement of finances alone can cause extreme stress and friction.

Even when you do your best to maintain independent finances and property from your spouse, I learned that there is always entanglement. If your spouse has financial difficulties, it can be linked to you even when you didn't share finances or property. With this ongoing entanglement due to a previous legal connection to an individual, I realized I wished I had changed my phone number after the finalization of divorce. Years later and I still receive random phone calls connected to my former spouse.

Fortunately my divorce was civil; we even said we would always be there for one another if the other needed. Perhaps this was naivety and wishful thinking in the freshness of our separation. We still have one another's phone numbers and whenever I have questions about anything, he's always willing to provide answers. But would I be able to truly count on him if I needed something? I'm not so sure of that now with the passing of time. Perhaps but perhaps not. With all our civility and promises to one another, I was shocked when I suddenly discovered he had removed and blocked me from his social media platforms. I should have expected it. We weren't what anyone would consider friends anymore. But it was still a shocking realization for me. With one less person in my support system, I had to accept that I may need to lean on my existing support system more heavily due to my health but I also needed to be more independent myself. Our mutual friends now became his and mine; I no longer had his family and friends to call on.

Divorcing was a heart wrenching decision but ultimately it was the best decision for me. It would have been nice for things to have turned out differently, but they didn't. For myself, I must let go of any regrets and instead find my peace and enjoyment in everyday life wherever and whenever I can as I navigate the divorced world.


Other divorcees shared with me what they wish they had known to expect or what they had learned from divorce. See what others had to say:

• When dealing with property there is the risk of both individual's credit being ruined.
• Splitting up pets can be emotionally wrenching. - Wendy
• You may end up taking care of the children all by yourself - Joe
• You learn who your true friends are and there may not be as many as you thought there were - Tricia
•  Sometime it's worth asking "is it more important to be happy or to be right?" when considering remaining in a marriage - Amanda
• Men and women react differently. Where one may act devastated the other may act in the complete opposite. For example "I was devestated and upset, he behaved in a very matter of fact way, was switched off from me completely and had metaphorically closed the door on me and our relationship. It was as if I suddenly had no part in his life or in his relationshp with the children". - Lynley, Top Lady Talks
• You lose friends, other women may look at you as a treat to them even though you did nothing wrong in the relationship, and it took bravery to walk away - Bree
• "I lost a lot of things but my mantra was 'I have my freedom'!" - Aileen
• "It's the kids that matter the most, to make sure they are treated right and always told that they're loved." - Amanda

What are some lessons you wish you had known prior to divorce?

Living for Work

My pediatric GI doctor talked to me and my parents about my chances for Social Security Disability (SSD) Benefits to ease the financial burden associated with my chronic illness since I was a child. I grew up hearing about how I would be able to obtain SSD benefits if I applied. My parents opted to never apply for SSD benefits for myself as they didn't want me to see myself as different from other children and teenagers and were fortunately financially able to withstand the financial burden my health placed upon them.

For me, SSD benefits was never an option truly placed upon the table but I also knew that my doctor and my parents hoped I would be able to physically complete my schooling and obtain full time employment and become a financially independent person - but that this was not a given but rather a hope as none of us were sure how my health would withstand the such physical stress.

So I put forth my full effort into the tasks of life. My parents home schooled me for a year in grade school due to my health not allowing me to meet the attendance requirements of public school during the first year of my surgeries. And in high school I risked inability to graduate on time during another physically trying year with medical tests, procedures, surgeries, and multiple hospitalizations. I was only able graduate high school due to the kindness of one of my high school teachers agreeing to tutor me during my home study absence period.

In college, I endured regular hospitalizations due to difficulty maintaining my electrolytes. My college professors worked with me to allow me to complete my assignments and exams around my hospitalizations as needed. My health stabilized the year I graduated college affording me attendance to graduate school and my practicums with minimal difficulty.

However, when I started my first full time job the stress would become too much for my body. I was traveling around the state on a daily basis, even to the borders of my state on a bimonthly basis. My employer was not overly accepting of my health. After consulting with my parents about my health and financial situation, I was forced to resign for the sake of my health.

I was not defeated though. I allowed myself a month of rest before re-entering the work place with a different employer. I had learned new ways to cope with the stress of full time employment and how to deal with an employer. I succeeded at maintaining my health even when this employer entered the realm of a hostile work environment. I found a new position with yet another employer who works with me on my health issues and have been able to maintain full time employment ever since without difficulty for 7 years now.

With abrupt health changes over the last two years, especially during this year, I began to worry about my ability to maintain full time employment. Without my employment I would become dependent upon attempting to obtain SSD benefit approval and assistance from my parents in the meantime. SSD benefit approval is not necessarily an easy task to achieve and can take years. Even after approval, you are often required to wait another two years for Medicare health insurance to become available.

My greatest fears in life include not being able to financially support myself and to become nursing home dependent or homeless and to be able to care for my parents as needed. When I was married, I was less fearful of these risks as my home was a two person income home. However, I had to weigh the financial risks I could potentially be under when I divorced. When I divorced, I was accepting that I am solely responsible for my financial well-being regardless of my health. I would be at greater risk of my greatest fears becoming a reality if unable to maintain employment. When I divorced, I learned a new level of independence that I vowed to fiercley protect and cherish for all my days on Earth even if that I meant I had to work until my death. No longer would I allow myself fairy tale dreams of being a stay at home wife - I would forever be a working woman for as long as I required and am able.

And with this new attitude and determination, I admit that I live to work. It's not out of enjoyment or because I'm a workaholic but rather out of necessity for my surival and mental sanity. My health has always been unpredictable causing my future to be unpredictable. I will ferociously hold onto the few things I can control in my life with an intense tenacity. It is due to this outlook, that I dismiss others when they say it's no life to live to work. For others this may be true, but it doesn't hold true for me. Rather, I increase my ability to survive physically and mentally when I focus on maintaining my employment ability for as long as I am able - even if that means I work past retirement age. The more I work, the more financially stable I become, the more I am able to prepare for the uncertain turns my health will take that is chronic illness.