Exploration and Rare Disease Awareness in Philly

I recently was provided the honor of serving as a member on the Familial Adenomatous Polyposis (FAP) Patient Advisory Board Meeting in Philadelphia, Pennsylvania and was able to explore this historic town while I was there.

Independence Hall

I arrived on a Thursday afternoon and met with a fellow FAP patient and friend who I had the opportunity to meet in 2017 at the Hereditary Colorectal Cancer Family Day. Our hosts had arranged our stay at the Windsor Suites. My friend and I spent the afternoon and evening walking around Philadelphia. We visited the Independence National Historical Park where we saw the Liberty Bell, President's House remains, and Independence Hall. For dinner we visited the Reading Terminal Market where we enjoyed official Philly Cheesesteaks. The Reading Terminal Market is one of the largest and oldest public markets dating back to at least 1893 where you can find a variety of food merchants, locally sourced produce and meats, and vendors with various items for sale.

Liberty Bell

The following day we joined the FAP Patient Advisory Board Meeting. Janssen Pharmaceuticals and CISCRP (Center for Information and Study on Clinical Research Participation) came together with a local marketing research data collection company to discover the experiences and perspectives of FAP patients and their caregivers. The panel of participants included a mix of 10 patients/caregivers as well as doctors, clinical scientists, researchers and Global Trial Leaders associated with Janssen and CISCRP. It was a unique opportunity to not only meet others living with FAP but also a chance to share our experiences and opinions with these professionals for future clinical trials for FAP.

After the completion of the meeting, my friend and I explored the

Mütter Museum, at the College of

Mütter Museum

Physicians of Philadelphia, which showcases medical history. The museum houses collections of bodily specimens, models, and medical instruments. Among the two story exhibit rooms full of interesting objects, we saw Mega Colon, a colon with FAP, and even slices of Albert Einstein's brain! Photography was not allowed in the museum unfortunately. Outside was the  beautiful and serene Benjamin Rush Medicinal Plant Garden where more than 60 different medicinal herbs grow. Following dinner again at the Reading Terminal Market, we joined a few of our newly met FAP friends to visit over drinks before we all headed our separate ways that night or the following day.



Philadelphia City Hall

It was a whirlwind visit to Philly but it was full of historical significance not only of the United States but also an opportunity for patients and caregivers to make a difference in the future of clinical trails for the treatment of FAP. It was an honor to have our voices heard and to meet an amazing group of individuals fighting their hardest against this disease.

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.