Seeking Answers

My health abruptly changed in 2015. Until that dreadful day in May 2015, my health had been stable since 2007, when I had an unexpected hospitalization due to my hemoglobin inexplicitly plummeting to 4. In 2015, I was suffering from loss of appetite as a side effect of my antidepressant medication resulting in a hospitalization for dehydration.

I continued to feel well physically until the night before my discharge from the hospital. That night I started experiencing an unceasing headache. The headache didn't improve with Tylenol and I finally gave in to trying Morphine - even though Morphine stopped managing my pain several years ago. However, it was in the middle of the night and I didn't want to bother my hospitalist with a medication order simply for a headache. So I consented to give the Morphine a chance to work. As I suspected, the Morphine had no effect on my pain and instead caused extreme nausea and constipation. It wasn't until I was given Phenergan that my nausea started to subside and I was finally able to obtain some sleep in spite of the pain. I didn't expect though to experience such an intense slow down of my bowel that I would feel as though I was starting to have an intestinal blockage from the Morphine.

And that's when my health changed for the worse once again - with that Morphine shot. Ever since I received the Morphine, I've been experiencing chronic nausea, early fullness, and increased abdominal pain particularly when eating. My GI doctor at the time ordered an upper scope and a barium x-ray to check for anything blocking my stomach or delaying gastric emptying. Both tests results were negative for any issue. My doctor chalked my nausea and pain up to adhesions from my previous surgeries. This was quite likely as I have had problems with adhesions previously causing nausea, vomiting, excessive diarrhea, and abdominal pain. It made sense and with multiple trial and error of medications, we found a regiment of medications that managed the symptoms to a tolerable level. I reached a point that I was able to accept my new health status.

My health started to change again though once again in 2017. I've started to have more intestinal blockages - two this year already - whereas I never had this issue previously. My last blockage was in mid August and it was as though someone once again flipped a switch on my health and it abruptly changed yet again. My blockage, fortunately, cleared on its own the next morning. However, with the clearing also came extreme early fullness and abdominal pain with eating. I was no longer able to eat an average size meal. Instead, I was being reduced to eating 8 ounces of soup and feeling as though I had over eaten. The nausea remained at the same level and actually improved due to reduced food intake. My early fullness and abdominal pain continued to worsen though as time went on since the blockage in August. I was further reduced from 8 ounces of soup to a few bites of food and was no longer able to drink liquid without severe abdominal pain and bloating.

With the news of my increased frequency of blockages and my worsening symptoms, my new GI doctor ordered a CT Scan with Contrast. The results showed:

1. Enlarged liver and pancreas
2. Renal Cysts
3. Hyperdense Stones in the Gallbladder
4. Mildly twisted Mesentry
5. Possible inflammation or infection of a fallopian tube
6. Adhesions with dilation of my small intestine indicating possible obstruction

With these results my new GI doctor believed my symptoms were stemming from adhesions, gallstones, and the fallopian tube. And so he ordered labs to check my values and referred me to my gynecologist. My gynecologist advised she thinks the issues with fallopian tube are simply adhesions and not an issue but will be ordering a pelvic ultrasound for better imaging of the fallopian tube for further diagnosing but wants to wait until my GI issues are improved to allow for improved viewing of the ultrasound. My lab results came back well.

My doctor decided to stop my Sulindac medication as side effects of Sulindac include nausea, pain, and diarrhea and to double my Prilosec to help heal any ulcers or irritation possibly caused by the Sulindac. I did notice some improvement to my ability to eat in the evenings. However, the mere sip of water with a morning Prilosec caused instantaneous pain and bloating followed by severe nausea within 20 minutes. Throughout the day my pain continued as well as difficulty eating due to the pain and early fullness. I started to have some days of constipation, which are rare for me on account of my Short Bowel Syndrome.

Next my GI doctor ordered stool samples to be tested and upper and lower scopes. My lab results came back as positive for C-Diff infection and my scopes showed enteritis, or inflammation of the small intestine, likely caused by the C-Diff. I also still have fundic gland polyps in the stomach and a new small polyp in my small intestine that was biopsied to test for cancer. I was started on a round of Vancomycin antibiotics for the C-Diff and my doctor advised I should start to feel better within 2-3 days of starting the antibiotics. And so I wait for both the pathology results and for the antibiotics to work.

As I'm awaiting resolution of my symptoms, I can't help but wonder if some of these issues were starting to appear in 2015 when my health suddenly took a turn for the worse and it was missed by my then GI doctor who dismissed my symptoms as adhesions and adhesions only. Was I developing gallstones back then and it was missed because testing was restricted to only inside my GI tract? I experienced concerns with the previous GI doctor in relation to my Iron and B12 levels as he felt I didn't need either supplement and after consenting to a three month trial without my medications, my levels worsened and I have since required regular iron infusions in addition to iron medication to maintain appropriate iron levels.

I'm trying to not dwell on the what ifs of what may have been discovered two years ago if my doctor at the time had taken the time for additional testing. Perhaps nothing else would have been found. Either way I am grateful for my current doctor for taking the initiative to continue to search for answers and resolutions to my symptoms. Although he anticipates my symptoms to significantly improve once the antibiotics are completed, he reassured me that if the symptoms aren't improved upon we will continue to search for answers to increase my comfort to beyond a just functioning level. My spirit and hopes are lifted with this reassurance as I give time for the antibiotics to work and hopefully work with great outcomes.

Fear of Food

Almost two months ago I experienced yet another intestinal blockage. Instead of this one being induced by medication, it was induced by food. This time I enjoyed steamed vegetables at lunch and stewed okra and tomatoes at dinner. I seemed to be doing well after lunch but as soon as I finished my dinner, an immense pain began to take over my abdomen. I didn't think too much about it for the first hour. Pain is normal for me and although I don't suffer from an immense level of pain everyday, it also isn't uncommon either to occur periodically. However, after an hour I still hadn't used the restroom. This is uncommon for me; I tend to have 2-3 bowel movements within the first hour of eating. My abdomen was becoming increasingly extended, tender, and firm. The pain wasn't lessening; rather it was worsening as the night went on.

I feared the worst but knew it was likely an intestinal blockage. However, unlike the previous partial obstruction this year, this presented as a full obstruction. I wasn't able to have any bowel movements of any amounts. As the night progressed, I tried my usual methods to relieve the pressure and get my intestine moving again. I took a double dose of milk of magnesia and I vomited all that I could.

Yet there was still no change. I began to quietly panic. I couldn't avoid the hospital very long if something didn't start moving. I decided to wait until the morning when I could call my GI doctor and request a direct admission to the hospital so that I could possibly bypass the ER. At 5 am that next morning, the blockage finally cleared and I was able to have the first of many bowel movements that day after not having any for over 10 hours. In fact, I spent the next 7 hours in the restroom. Needless to say, I was unable to go to work that day as I wasn't able to leave my restroom!

I have never had to worry about intestinal blockages prior to this year. I underwent testing to determine the cause of my sudden onset of chronic nausea and increased early fullness and pain after my last hospitalization in 2015. The results indicated that my adhesions were worsening and likely once again causing a stricture around my lower intestine. This was the cause of my worsening health with chronic vomiting and extreme diarrhea to the point of severe dehydration and malnutrition in high school. Thankfully, my adhesions have not caused such an extreme case as this at this point. I rarely vomit and my short bowel is nothing like that of those high school moments.

With medication and time, I've become accustomed to the early fullness, chronic nausea and pain. I'm able to manage it decently well most days. However, after this last intestinal blockage I've noticed another sudden change. My early fullness has become even more severe to the point that a mere cup of soup is filling and I easily become miserable if I eat more. My nausea has remained the same fortunately.

In addition to significantly smaller portions, I remain leery of vegetables unless they are mashed or pureed. I can't bring myself to eat vegetables otherwise. I've limited myself to soft foods that primarily consist of meats, some breads, soups, mashed vegetables, french fries, and noodles. Not much of a healthy diet by any means.

I have since ventured back into eating a small amount of lettuce every now and then but not on a regular basis anymore. Even when I do eat a small salad, I remain terrified that I'll be causing a blockage with my meal choice. Thus, I haven't allowed myself to resume my previous normal eating habits as other whole vegetables pose a greater risk than lettuce for an intestinal blockage. Interestingly, the fear of the risk of other whole vegetables is so great that I don't really miss eating these foods. I'm sure at some point I will venture further back into additional food choices, but at present I'm content with my overly cautious mindfulness toward my food. In the end, we need to be comfortable with whatever choices we make - physically and mentally.

CBD Oil and Gastrointestinal Issues: A Review

Disclaimer: I have been given this product 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.

Cannabis has been in the news quite a bit over the last few years particularly for its medicinal properties and this includes those of the compound CBD found within the plant. There are several well known benefits of cannabis but my interest lied in the benefits possible for nausea and pain as these are two issues I experience on a daily basis. Medical marijuana isn't yet legal where I live and I have no interest in the psychoactive properties of marijuana's THC compound. However, the CBD compound can be made into a oil from the hemp part of the cannabis plant allowing the medicinal properties to be accessed without psychoactive properties. Cannabis compounds, or cannabinoids, attach to receptors within the human body producing particular effects. The human body even produces certain cannabinoids itself. The receptor that CBD interacts with is CB2 and has specific effects on inflammation and pain. There are some side effects such as tiredness and sometimes change in bowel habits, appetite, and weight. For more information regarding CBD oil visit Medical News Today.

I consented to review BioCBD+ to discover any benefits for my nausea and abdominal pain. According to BioCBD+, CBD Oil can help with the following conditions so I was hopeful.


CBD: Past, Present and Future Premier Issue #1

BioCBD+ Total Body Care states it has 10 mg of BioCBD per capsule that is water soluble rather than oil based CBD. According to BioCBD+ , the water soluble formula is absorbed and more efficiently used by the body.

The suggested dosage of BioCBD Total Body Care is 1-2 capsules a day to support and maintain total wellness or up to 5 capsules per day for treating severe discomfort.

It didn't include instructions for when to take the capsule in regards to time of day or with meals. I started by taking one capsule per day in the late afternoon, typically following an early dinner.

The first time I took BioCBD Total Body Care I was experiencing severe abdominal pain and bloating that day. I did notice within half an hour a reduction in my pain; the pain didn't cease but it did decrease in severity. 

My chronic nausea was tolerable except for one day when I experienced a mysterious licorice odor for a full work day in spite of being unable to locate any source of such an odor. This licorice odor caused severe nausea that required me to utilize a medical mask and peppermints to cope with the nausea.

After 2-3 days of taking one capsule per day, I began to notice slight insomnia. I didn't experience an increase in energy level just an increased difficulty to sleep. I typically go to sleep between 9 pm and 10 pm. I was no longer feeling ready for sleep by 9 pm but instead it was becoming closer to 1 am before I could sleep. However, when I did sleep, I slept very hard and awoke rested. 

It was around the same time frame that I noticed two other effects. I developed an insatiable appetite and my Short Bowel Syndrome worsened. I increased from my usual 15 to 20 bowel movements a day to 30 or more per day. My skin was becoming perpetually sore and raw from the increased bowel movements.

After a week of taking the BioCBD Total Body Care the worsened Short Bowel had become unbearable. The frequency and urgency of restroom trips started interfering with my ability to function at work and limited my ability to participate in activities. I didn't want to leave me house. The benefits of reduction in abdominal pain and nausea wasn't outweighing the increased bowel movements and their effects on my skin and my daily functioning ability. I decided to discontinue the supplement to see if my symptoms improved. After 2-3 days without the supplement my symptoms did indeed improve but not before I had a Short Bowel flare that left me incapacitated for a full day.
My appetite returned to normal and 5 days after discontinuing the capsules I noticed another significant decrease in my appetite. Food no longer sounded appetizing, I no longer had food cravings.


With CBD Oil's ability to target inflammation, I thought perhaps this product would be better suited for my mother as my mother has arthritis and experiences inflammation more than I do. My mother shares my two rare diseases of Familial Polyposis and Short Bowel Syndrome so she has similar GI issues. However, in addition she has Diabetes, Arthritis, and an ileostomy whereas I have a straight pull through - not an ostomy. So perhaps, I thought, if she does experience a change in bowel movements, it wouldn't be quite the interference that I experienced. She obtained approval from her Nephrologist to start the BioCBD Total Body Care capsules.


My mother consulted her Nephrologist and with approval started taking one pill a day and tried taking the capsule at various times throughout the day. Unlike me, she did not notice any changes to her bowel movements. After trial and error of various times for taking the capsule, she found one capsule in the evening to be most helpful. My mother reported she tends to have more arthritic pain, particularly in her back and hips, in the evening after completing a day's worth of activities. My mother also has chronic leg cramps, primarily in the evenings. Both of these issues present a sleep disturbance for my mother resulting in frequent nights of poor sleep. However, with one capsule in the evening my mother noticed reduced pain and improved sleep on a regular basis. She did not increase the dosage from one capsule to two capsules when she didn't notice any improvements or to attempt to obtain further improvement. Overall, she was pleased with her experience and recommended the BioCBD Total Body Care capsules for inflammatory pain management.

Dialectical Behavioral Therapy for Chronic Pain

This is a guest post by Danielle Faith

In Pain at 4 am

I've just woken up. It is 4 o'clock in the morning and I am in extreme pain. I'm doubled over and unable to move. My goosebumps have goosebumps and I'm ready to pass out or vomit from the extreme pain. I know I have to go to the ER and it's causing a ton of stress.

I have asked myself countless times what if there was a way to avoid a panic attack? What if I could handle the stress better? What can help me? Could it help me avoid the Emergency Room? Can I make my situation more comfortable?

Does this sound familiar to you? Have you ever asked yourself these questions or wished you could manage stress better? What if I told you, you can make things better? It is moments like these where Dialectical Behavioral Therapy (DBT) can help lower your stress and anxiety, allowing you to make clear headed decisions about how to handle your health and can even reduce pain. This is because pain and stress can be intertwined. When you're stressed, you are in more pain and more pain equates to more stress. DBT helps break this cycle and gives you a chance at de-escalating the situation.

What is DBT?

Dialectical Behavioral Therapy (DBT) is a behavioral treatment method originally created by Marsha Linehan to treat a wide range of psychological disorders such as depression, borderline personality disorder, and suicidal idealizations. Over time, it has been proven that DBT is also effective in helping patients handle chronic illness as well and has been used to lower anxiety in chronic pain patients. DBT focuses on a set of four behavioral skills:

1. Distress Tolerance Skills
2. Interpersonal Effectiveness
3. Emotion Regulation
4. Mindfulness

Distress Tolerance

Distress Tolerance Skills are used when the situation cannot be changed. Each skill offers difference insight and it is important to use the right skill at the right time for maximum success. These skills are designed to help you cope and survive during crisis and can be applied to both short term or long term emotional and physical pain.

   Personal Example of Distress Tolerance

Radical acceptance is one of a few distress tolerance skills a person can learn. It is all about recognizing what you can and cannot control. For instance, at one point during the course of my illness I had to live with a feeding tube. Having that tube in my body was the strangest thing. I hated it. However, as time went on I began to accept it for what it was in the moment. That didn't mean I liked the situation.

I actually disliked it quite a bit. But having radical acceptance about it allowed me to relax and recognize that this is just how things are right now. It isn't forever. Figuring this skill out made me feel so much better about my illness. Plus, I was right, the tube wasn't forever, because I had it removed last year and have been much better since.

Interpersonal Effectiveness

Interpersonal Effectiveness skills apply to the skills that help us attend to our relationships. It is about balancing priorities and demands. It is about balancing the 'shoulds' and 'wants' to build a sense of mastery. These skills help identify what we need to do in order to get the results we want out of an interaction while maintaining a sense of self-respect.

  Personal Example of Interpersonal Effectiveness

Many times I've ended up in the ER and have had to use a specific format of talking to get the care I needed at the ER. The skill I'd use is known as "DEARMAN":

Describe: the situation, "Doctor, I've been vomiting all night and am in a lot of upper right abdominal pain."

Express: your concerns, "I'm very stressed out. I think I'm having a pancreatitis flare."

Assert: yourself by acknowledging what you need, "usually Benadryl, Zofran, lot of fluids and pain medication help the situation. I may also need an admit depending on my blood work."

Reward: the person and tell them what they get out of the situation, "I really need your help to make me feel better, that's what doctors do best!"

Mindful: of what is happening and/or repeating your needs, "So, when you put the medication orders in don't forget to include the Benadryl; that's important or I'll itch from the pain medication."

Appear: effective and nice, "I understand what you mean doctor. I am, however, in a lot of pain."

Negotiate: alternative solutions, "I'm willing to try an anti-inflammatory first. But if that doesn't work, can we make sure there's pain medication ordered as well? Thanks!"

Emotion Regulation

Emotion Regulation is the ability to respond to a variety of scenarios in a manner that is socially acceptable yet flexible enough to allow for genuine reactions. Being able to control how you react to a situation is essential when it comes to managing how you might be impacted by a situation.

  Personal Example of Emotion Regulation

One day I was feeling sad about my chronic illness. I was telling myself I looked fat and was lazy. I felt really bad about it too. I really just wanted to check out and take a nap. That's until I went ahead and changed my thoughts which influenced my feelings and behavior. Instead of telling myself something negative, I went for something more positive. Instead of saying I was fat and lazy, I told myself I was chronically ill and doing my best. That made me feel a bit better and I felt a lot of empathy for myself; then I was able to get up out of bed and start the day.

Mindfulness

Mindfulness applies to distress tolerance, emotion regulation, and interpersonal effectiveness skills through observation. By observing what is going on around you, this allows you to fully engage yourself in the experience without labeling it as good, bad, or anything in between. The benefit of mindfulness is that it quiets your mind and gives you a way to acknowledge all your thoughts and feelings.

  Personal Example of Mindfulness

I was really stressed out about being sick and having a feeding tube that I just broke down. I started to cry with no judgment. Before I knew it, all the stress I hold in my neck, shoulders, and back evaporated. It was like magic. Suddenly, as I noticed the lack of pain in my body, I stopped crying in awe. For two days I noticed every little thing about not carrying that weight on my back and ended up having a really great two days.

DBT for Chronic Pain

As you can see, DBT brings a lot of hope to chronic pain sufferers. This is because chronic pain and anxiety go hand in hand. Treating anxiety is one easy way to lower the intensity of a person's pain. While it may not fix the root cause of pain, it can allow a person the freedom to make intellectual decisions about their care that isn't influenced by anxiety or fear. This alone can unlock doors for those with painful conditions. 

Doubting Yourself

Interpersonal relationships have the capability to hold great power over and for ourselves. We tend to find value within the opinions of others rather than within ourselves. We, understandably, grieve the loss of relationships with others but we far too often lose ourselves amongst our relationships with others as well. It's easy to start to doubt ourselves when it comes to others.

When I decided to end my marriage, I chose to end a lifetime. A lifetime of hopes and dreams. I greatly grieved this loss and I greatly celebrated when I found myself amidst the pain. I survived emotionally and physically. And yet, even with my personal oath to never lose myself again...I still allowed myself to doubt. Doubt of myself, my future, and my worthiness of a blissful future.

With my divorce, not only did I part ways with my marriage but I also parted ways with my lifetime caregiver. I worry about my future with my chronic illness, about who would provide care to me as I age and become more ill. Even though I whole heartedly believe I deserve a loving life partner, I remain amazed when my chronic illness is accepted by a partner. It's that doubt creeping in at the corners of my life, always there ready to pounce upon my fears. I almost can't fathom that another individual would willingly take on my chronic illness and the caregiving it requires. Chronic illness demands much - much from ourselves and much from others. It is unforgiving and high maintenance. Why would another take on such responsibility willingly? We don't even want the responsibility of ourselves. It's as though I've destined myself to a life alone and when someone challenges that belief, I'm left in dismay at such a selfless act.

I recently found myself complacent to the point that I believed no one would ever be willing to accept this caregiving responsibility. I doubted myself without even realizing I was doing so. This realization startled me, especially when soon after I quickly discovered acceptance and care in another.

How could I have allowed myself to place such doubt upon myself? We are all worthy of care and acceptance whether it be from platonic, familial, or romantic relationships. There is always someone who will accept us as is and love us for who we are and that includes our chronic illnesses.

This awakening with the gentle reminder by another of my own self worth was necessary. I realized I couldn't permit myself to continue down such a self destructive path of doubt. I can't risk losing myself again. Losing myself was detrimental to my psyche - I was left with a broken spirit that required extensive self love to flourish again. The work we place into ourselves is excruciatingly difficult and never ending. But the reward is far greater than the work. We must never lose sight of this or we risk losing ourselves once again.

Each of us deserves far more out of life than we realize. It's time we come to the realization and put to the side the negativism, criticism, and doubt that we allow to seep into our hearts. Life is deeply more enjoyable and rich when we stop harming ourselves and instead let our souls flourish in love - love of others and of ourselves.

Traveling Abroad with Short Bowel

I prepared myself for a few days traveling from the United States to Mexico to attend a destination wedding. With Short Bowel Syndrome (SBS), I'm always nervous about traveling as I need to have an accessible restroom. Without a restroom, my activities are limited and I am at risk of an incontinent mishap. Unfortunately, SBS is a very unpredictable rare disease. My food and fluid intake, activity level, sleep, and medications all affect the intensity of my SBS. If I don't eat or drink, sleep well, and limit my activities I tend to have a better success rate with reducing SBS urgency and even flare ups. However, when I partake in the necessities of life - such as eating and drinking - my digestion process is short resulting in frequent, often urgent restroom trips. Activity furthers my digestive process also adding to the frequency.

Fortunately my travel was only from the middle of the US to Mexico resulting in two flights lasting approximately a total airtime of 3 hours. Not a bad flight time. Needless to say, I was not nearly as nervous as longer flights I've flown such as to Paris, France during my college years. However, anytime I travel outside of the US, I am also anxious about restroom access. The US has a fair amount of accessible and free restrooms for travelers to use. But this isn't always the case in other countries that is further complicated by requiring the local currency when restroom use requires payment.

And so I prepared for my flights. I was lucky that my departure flight was an early morning flight thereby aiding in my fasting efforts to reduce SBS symptoms. My return flight though would be late afternoon meaning I had to decide if I wanted to eat my day's meals prior to flying or fast for the entire day. I double checked that I had my Lomotil medication to slow my bowel and took my pills with plenty of time for the medication to take effect prior to my flight. I opted to forgo the included beverages and snacks on my flights in order to further reduce SBS symptoms and to utilize the restroom with every given opportunity to help prevent additional issues.




Now Amber Resort. Puerto Vallarta

I arrived at an all inclusive resort for the wedding. I was comforted by the fact that I had my own room to myself so I could have private restroom access whenever necessary and I quickly located the public restrooms. Fortunately at a resort there are plenty of restrooms so I wasn't too concerned. Outside of the resort though would be another story.





Cigar Shop and Restaurant

Soon after arriving at the resort the wedding group decided to embark on an excursion to explore the local town and complete some shopping. We took a taxi to a local cigar shop and restaurant. To my relief, it had a free restroom. To my dismay, the group had decided to also eat at the cigar shop. I was once again faced with the decision to eat or not to eat. Do I eat and drink thereby creating increased restroom need or do I continue my fast of food and beverage to limit my need and allow for increased activity? I chose to fast. We would be walking to local shops and a flea market and I was uncertain about the distance and restroom access outside of the safe haven of this cigar shop and restaurant. I chose correctly as there would be a restroom at the flea market but it would be a for fee restroom. I did have some pesos but not in the correct amount needed. I made the short walk to the flea market and we spent a quite amount of time shopping before heading back to the cigar shop to wait for a taxi back to the resort. To my favor though, with the cigar shop's restroom and my decision to fast I wouldn't require restroom access beyond the cigar shop.

The Wedding Group

I wouldn't leave the resort for the remainder of the trip which provided me some relief and freedom. I chose not to participate in any other local excursions although there was an abundance of interesting and exciting options. Such as a Rhythm of the Night boat trip to a nearby island complete with performances and dinner. But again, I had to question if the boat had a restroom and what about restroom access on the island? It was a several hour excursion. Or the 6 hour city tour that the group decided to embark upon. What was the restroom access like for the duration? I opted against such activities but I would still have to face the decision of swimming or not. Of course I wanted to swim but my body needs to cooperate in order to allow for swimming. I would also be faced with the decision if I should eat breakfast or not each morning. Breakfast starts my digestive process in motion and sets me up for possible activity limitation requirements. I chose to risk the activity limitation and ate breakfast each morning - a behavior I don't normally participate in during my regular day schedule. The next day would not go as well as the first day due to my body not cooperating as

needed. My Lomotil medication didn't even seem to phase my bowel. I was blessed with plenty of restroom access but I would have to forgo activities such as swimming this day. However, this was the wedding day and I opted to take a second dose of Lomotil that afternoon in preparation of the wedding reception.

Due to my abdominal adhesions from surgeries, I have chronic nausea and pain when I eat and the nausea has a tendency to strike even when food isn't involved. Such as every morning or when I'm jostled. The next day I would be stricken with severe morning nausea requiring a period of rest before engaging in further activities for the day. I wanted to swim at least once with my friends so I started my morning of nausea with a double dose of Lomotil. The double dose of Lomotil slowed my bowel and with rest my nausea eventually subsided so off to the pool I went. I even managed to eat lunch while at one of the resort pools and I found a pool restroom so that I wouldn't have to travel back to the resort towers when the need arose. I was thrilled with my activity achievement for the day. 

The following day was my last day at the resort and I would depart in the late afternoon. I knew I would likely need to eat at some point during the day but the timing was essential to protect against the SBS. I ate breakfast, realizing it was the safest option. I would fast the remainder of the day including passing up any beverage or snack offerings on the flights home. And once again utilized the restroom at every given opportunity. I made it through US Customs without issue and had enough time for one final restroom use before boarding the last flight home.

To my relief, I had managed my traveling and activities in spite of SBS and I didn't get sick from the local water! It just took some planning and making the better choices for a better outcome. I hope you enjoy travel time and activities in spite of any obstacles as well!

A Caregiving Father

I've been blessed with two of the best parents any individual could dream of having in their lives. There isn't enough time or enough words to properly describe the depth of my love and admiration for my mother and father. I am often overcome with overwhelming gratitude for each of them. I am in no way unaware of just how blessed I am to be their child. I have a special relationship with both of my parents. And although I am happy to sing both of their praises at any given moment, I dedicate this to my father.

Our Family. 2017

Courtesy of K. Talley Photography

Today celebrates Father's Day in the US and marks the end of Carers Week, celebrated in the UK. Why are these two celebrations intertwined for me? Because my father is a double duty caregiver. My mother also has Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome. Together we walk the life of chronic illness - the same chronic illnesses. She is no doubt my hero and my inspiration for living chronic illness with grace and dignity - to the best of my ability. However, my dad is my rock and her rock as well. My mom is more than willing to help provide caregiving to me when I'm in need but she does have limitations due to her own health. Fortunately for the both of us, my father is in good health and is able to provide caregiving to both of us. Sometimes even simultaneously, such as during my childhood when my mother and I were both hospitalized at the same time. My mother opted for admission to the adjoining children's hospital I was admitted to in order to reduce the burden on my father. A sacrifice I will never forget as this was not her hospital of choice nor would it be mine as an adult.

Not only has my dad been the provider of our family and our rock but is he is also ever willing to provide care when needed. My father married my mother without much expectation or anticipation of what was to come. My mother knew she had FAP but never dreamt it would affect her or any future children the way it has. As you can read in her story at Destination XRide's Mom's Corner, she anticipated her life with FAP would be much like her father's had been throughout her life at the time.

My birth would mark a change for my mother and grandfather's health with FAP. Later my grandfather would require radiation that wreaked havoc among his body and an ileostomy. Eventually, we would lose him to FAP polyps in his stomach that developed into stomach and esophageal cancers. But until this point, he simply lived with a limited effect of FAP. He remained active and in relatively good health for having FAP. This was my mother and father's expectation for my mother.

The reality became clear though a mere 3 months after my birth. My mother had colorectal cancer and not only would it claim her colon leaving her with an ileostomy - it would nearly claim her life as well. My father, a spiritual person, laid his fears and concerns out in prayer and surrendered to whatever would occur - losing his wife of 5 years and becoming a single father or being able to live his life intact with both is wife and their sole child. Children, especially babies, weren't allowed in the hospital ICU unit where my mother was receiving critical care. Yet the nurses saw my mother barely hanging on and let my father bring me in to see my mom. I've imagined this visit countless times in my mind's eye. These visits proved to be a source of strength for my mother as she recovered to continue her marriage and raise her daughter. The doctors though would advise my mother to not bear anymore children as her life depended upon it.

My parents' lives drastically changed with my birth - not only did they welcome a daughter into their world but they also were forced to welcome chronic illness into their world as well. My father never let this alteration in their life plans hinder or alter our lives more than necessary. He graciously accepted the role as caregiver to my mother and later to myself as well. With great love and care, he consistently provides for us in any fashion we need. He is indeed our rock and we are far better because of this life foundation he provides without hesitation.

To all the fathers out there who meet the needs of their families and provide the ever life saving caregiving required, Happy Father's Day indeed.

Loving Iron Infusions In Spite of Needle Fear

My energy is beginning to dwindle again. Although still completing work duties, by the end of the work day I'm frequently no longer having any energy remaining. I am so exhausted that daily activities are out of the question, even showering requires more energy than I have some days. I had my follow up appointment with my hematologist and as I suspected, my iron levels were dropping once again requiring another round of iron infusions.

I was apprehensive about starting iron infusions when my GI doctor first recommended it. I had been taking iron tablets for more than 20 years without issue until suddenly in 2015, I could no longer tolerate my iron tablets. Ever since my 2015 hospitalization I've been experiencing chronic nausea and increased chronic pain. Iron tablets were adding to the pain and did lessen when I discontinued the tablets. However, I still required iron or risk worsening anemia. With my hemoglobin dropping and my chronic fatigue worsening, I was desperate to start iron infusions. I no longer cared about my needle fear, I just wanted to feel better.

And so my experimental adventure with iron infusions began. After my first round of infusions, it took about 4 months and I was requiring another round. After my second round, my doctor changed me from ferrous sulfate to ferrous gluconate tablets in an attempt to supplement my iron intake again and lengthen my time in between infusions. With this new addition, I was able to lengthen my in between times to six months! However, three months after the third round and I'm back to the four month in between time.

Sure, every time I sit in the recliner awaiting my IV to be started, my PTSD is triggered. Anxiety begins to overwhelm me. I feel my body automatically sinking back into the recliner more and more, as if trying to be swallowed by the recliner in an effort to escape the situation. I force myself to hold back tears only to fail when I require two or more attempts to start the IV. The fear, the pain making me question why am I putting myself through the torment.

But I remember why I subject myself to my needle fear when I have a weekend full of activity due to overflowing energy. I remember, that energy, that ability to participate in two days worth of activities...that's why. Because I love those days. Sure, you'll find me often in bed by 8 pm on a weekday after working. And sure, I can rarely stay up past 10 pm. But those days when I can engage in activities for hours...those days excite me. Those days are worth it all.

I have another week before my next round of iron infusions and I'm ready for the day to arrive. I'm ready to have energy again on a consistent basis. It's uncertain regarding the frequency for receiving the iron infusions. However, regardless if infusions are required every three months or longer - I'm willing and ready.

Bullying and Chronic Illness

Living with a chronic illness is an intense stress and burden upon one's self and when it is coupled with resulting medical trauma, it is a recipe for mental health concerns regarding adjustment and coping. When you add a young age and bullying to the mix, it can be disastrous.

I always thought that my morbid death orientation and twisted sense of humor stemmed from the medical trauma I endured as a child. I was partly correct. During my own soul searching, I had an epiphany and realized my obsession with death didn't really exist until I was bullied during my 6th grade year - two years after my first surgery.

I had my first surgery at the end of my 4th grade year. Over the course of a year I would survive 5 surgeries and a near death experience and develop PTSD. Far from the expected two surgeries I was scheduled to have to place a temporary ileostomy and then reverse the ileostomy with a jpouch by the end of the summer break. I was home schooled during my 5th grade year due to my unstable health and frequent hospitalizations. As I prepared for my 6th grade year, I was malnourished and my doctors diagnosed me with relative anorexia. I was placed on a weight gaining diet and began to stabilize physically. As I recall, I was beginning to mentally survive as my PTSD was calming down with the reduction in medical procedures. I was adjusting the best I could to my unexpected ileostomy that was believed to be permanent. However, I was anxious to start back to school, particularly as 6th grade meant middle school - a new level without a transition and I had lost contact with the majority of my grade school friends during my year of absence. I wasn't psychologically ready for this change and I pleaded with my parents for an alternative. My parents opted to transfer me to a different school district that still held 6th grade in the grade school to allow me time to acclimate to returning to public school. In the end, this was a great decision as I would come to enjoy my school district and experience a challenging education with fantastic teachers that would prepare me well for college and a large group of close friends who supported me in my future health issues during my high school years. Unfortunately, this end result would require me to survive a very difficult time first.

My 6th grade year started off well. I was the new kid in school and painfully shy. I had no sense of fashion or style. I wore baggy pants and long, oversized t-shirts frequently to fit my level of comfort with my new body. I was uncomfortable wearing anything that might give away the presence of my ileostomy. I was introduced to a group of girls and was accepted. I managed to make several friends and all was going well.

That is, until winter break ended and I returned to school to find myself shunned by everyone I knew except for two girls - who were not in the circle of girls who orchestrated the shunning. Unfortunately, I didn't have classes with these two girls very often if at all and so I was left to myself the majority of the time. I was bullied relentlessly for the remainder of the school year. The bullying was led by two girls in the previous circle of friends I had enjoyed. I was never given an explanation for why my previous friends had shunned me and told others in our grade to shun me as well. I began to spend my recess in the classroom with my home room teacher as it was lonesome to play by myself outside everyday and one of the girls would often hit me in the head with objects such as hand sized rocks or hard plastic lunch boxes. My days were spent simply trying to survive so that I could return to the safety of my home.

The combination of this bullying with the medical trauma I had experienced within the previous two years was too much for my childhood self. I was no longer able to maintain coping and I became consumed by hate and anger. I was angry at my classmates for bullying me, at my parents for my disease, health, and for giving birth to me, and at my medical providers for my ileostomy and near death experience. I no longer was learning to cope and adjust to a life with an ostomy. My coping mechanisms became an obsession with death - my own death and the death of those I despised. Quite frankly, I became suicidal and homicidal. I prayed for my death and the death of others everyday for hours while fantasizing about our deaths, planning and plotting how I could bring about death. I had opportunities I could have taken to enact my devious plans. And yet, my health saved me and others from myself.

I managed to stay out of trouble during adolescence thanks to my health. My health made me timid in many ways and helped narrow my chances for typical adolescent mischief. I was too often ill or felt inhibited by my health to partake in high risk behaviors or activities. This inhibition coupled with my logical mind kept me from harming myself or others. Not only did I joyfully envision the demise of myself and others - I also envisioned the repercussions of such devious actions. Knowing the likely consequences that would occur if I acted upon my devilish desires kept me from harming anyone.



FAPVoice Bullying

Survey Results

The effects of bullying was far reaching for me that could have resulted in disaster for myself and those around me as well as their loved ones if it wasn't for my own ability to logically think through my thoughts. Unfortunately, this isn't the case for everyone who is bullied. Far too often individuals are completing their suicidal or homicidal desires causing great devastation. In the age of technology, bullying is growing, reaching vast audiences and victims.

FAPVoice launched a survey to determine the prevalence of bullying among their community members. I was heartbroken to read the stories of others' experiences. It's become common to hear about bullying within schools. I didn't expect to hear about bullying within the work place or from medical providers and family though in regards to chronic illness. I was particularly bothered by the story of one individual who felt bullied by her family and medical providers due to her medical decisions.

The sad fact is that we can encounter bullying anywhere and from anyone. But there are things we can do. We can stand up for ourselves and for others. We can reach out, understand, and educate.

Consider joining forces with anti-bullying groups and campaigns, such as No Bullying - a global source for education and support to stop bullying.

Regardless of your age, your place, your role or your avenue. You can make a difference.

Intestinal Blockages

It could have started due to various causes. There are too many variables affecting my daily physical well-being. I can rarely pinpoint one cause for anything. It's most likely a combination of actions or it may just be random luck. It's not always easy to pinpoint the root cause of a flare up or an intestinal blockage.

Due to a combination of iron tablets and regular iron infusions, I'm finding myself with increased energy on the weekends. This was a prime weekend for activity. I had energy for a weekend full of activities. Perhaps I pushed myself too hard two days in a row.

Saturday I wanted to attend a local festival so in preparation for walking and possibly limited restroom access, I took one Lomotil tablet in the morning to slow my Short Bowel Syndrome. Normally, I have about 20 bowel movements a day thanks to my Short Bowel. This can be problematic when faced with physical activity and limited restroom access.

I hate taking any anti-diarrhea medications. The crazy thing is, I used to take the max doses allowed of Lomotil in an effort to slow my bowel for daily functioning. Now, one Lomotil tablet leaves me in pain and disrupts my normal bowel function which has its own negative side effects. However, I am able to participate in activities with less worry about restroom access. The slow down action of Lomotil has become so severe for myself that I can accidentally induce an intestinal blockage simply by taking one Lomotil tablet two days in a row.

Saturday evening started off with my Short Bowel Syndrome emptying itself as much as possible once the Lomotil started to wear off. My bowel was making up for only requiring very few restroom trips during the day. Additionally, the slowed bowel agitated my intestinal ulcers resulting in extreme blood loss for about 6 hours. I felt alright though. I had made it through the life span of the Lomotil and my bowel was returning to its normal routine.

I woke up Sunday fairly normal except my bowel was a bit angry still at me leading me to not feel comfortable leaving the house unless required. Fortunately, I was able to stay home until my bowel calmed down. The morning transitioned into a pretty bowel typical day for me. In the evening, I decided to snack on pickling cucumbers. As I finished my second small cucumber and reached for the third one, I remembered the time I gave myself an intestinal blockage by eating crab salad made with a whole English cucumber. A whole English cucumber is too much for my intestine to handle. Before this occurrence, I never had an intestinal blockage caused by food. Not once. So I rationalized that pickling cucumbers are smaller and I've eaten two in combination with tomatoes, onions, and olive oil without any issue. So one more wouldn't hurt anything.

Monday started with uncomfortable bloating and limited bowel movements (for me...remember I'm used to 20 times a day) but a lot of my mornings start this way and improve as the day goes on. So I ignored it; just another day. I drank some coffee and ate a snack and lunch and my symptoms seemed to start to improve. But then my day drastically changed. Suddenly I found myself having a flare up. I was running to the restroom every 5 minutes - literally - and started having painful abdominal cramping. This went on for hours, I was excited when I was able to wait 20 minutes in between restroom trips. I took the 20 minute interval for granted and it returned to the 5 minute intervals. If I can just sleep, this will clear up by the morning I think to myself as I draw on past flare ups.

I managed to finally sleep for a few hours and I awoke to a severely distended
abdomen and
excruciating cramps. Now my bowel movements had gone from 5 minute intervals to barely any. Somehow, I went from flare symptoms to blockage symptoms over night. I tried drinking hot tea, eating soup, using a heating pad, lying down rather than sitting up. Nothing was making a difference. With hope, I took the max dose of milk of magnesium laxative to help out. Normally, if I take a laxative I have flare symptoms but it does help flush out my intestine and stop the abdominal cramps and bloating. The laxative did nothing this time. I knew I was getting into trouble but I still refused to accept that I was having an intestinal blockage and I refused my parents' suggestions of going to the ER. In desperation, I stopped trying to keep my food and drink down. I allowed myself to vomit until I couldn't vomit anymore. The pain and bloating improved but was still present. My mother convinced me to take a Lortab for the pain so that I could sleep. As the night progressed, the symptoms began to lessen. I started to have more typical for me bowel movements. I clung to the hope that this blockage was finally clearing or I would be forced to visit the hospital the next day.

Fortunately, the combination of vomiting and a Lortab did the trick this time and the blockage progressively cleared itself over the course of the third day. I was lucky this time.

I replayed my actions taken over the weekend. Was this caused by a combination of factors? Did I start into action a blockage when I took the Lomotil and then cemented it into place by eating too many cucumbers? Was I having a flare at all or was it just the early signs of a blockage?

With Short Bowel, there isn't always a definite cause for how my bowel will act on any particular day. But I need to be mindful of the choices I make to help protect my physical well-being. I need to pay heed to my body's triggers. I've learned that I need to be careful about how many Lomotil tablets I take and my body is starting to require more attention to food limits. With chronic illness, we are faced with periods of change requiring us to adapt to yet, another change in our health and how our bodies respond to daily life.

Awaiting Results

The year 2015 ended my 8 year streak of being free of cancer screenings and hospitalizations. During an unexpected hospitalization for dehydration, I finally consented to undergoing scopes again to screen for cancerous polyps in my GI tract. I had previously refused scopes after my last one in 2007 due to the harsh prep my GI doctor required prior to each scope. Psychologically, I couldn't endure the pain that accompanied the prep and preferred to take my risk with cancer than undergo the psychological torment any further. However, I relented with a new doctor who didn't require a prep for a scope due to my short bowel syndrome. In 2015, it was discovered that I had developed stomach polyps in the 8 year span without scopes and I had 4 deep ulcers at my straight pull thru connection site.

I thought I would begin undergoing yearly scopes once again with this new doctor. However, in 2016 my doctor advised me that FAP guidelines had changed to recommending scopes every two years rather than yearly. I wasn't one to argue. After all, I had gone 8 years without scopes. I wasn't too worried about one more year. This doctor also advised me that FAP polyps only develop in the colon, rectum, and duodenal area - no where else in the GI tract. I question this as I've read and my first doctor advised me that FAP polyps can develop anywhere in the GI tract. My first doctor even anticipated I would develop stomach cancer by the age of 30. Fortunately, the stomach polyps discovered were benign and non-FAP.

I started 2017 off with yet another doctor and just completed this year's scope with my new GI doctor. He entered my recovery period and advised me that I still had small stomach polyps, a superficial ulcer at my connection site, and a new polyp on my ampulla. Biopsies were taken of the new polyp and the ulcer and I'll receive my results within a week. The news of this new polyp shot through my body. I wasn't able to keep my first thought locked within my mind as I blurted out "I'm not going to do chemo".

I realize there's a chance that this ampulla polyp isn't even a FAP polyp. I realize there's no sense in worrying while awaiting for the biopsy results. Stressing and worrying will not change the results nor will serve any beneficial purpose. Yet I can't forget that my understanding from my doctors and the experiences of fellow FAPers is that this area is the second area most likely to develop cancer after the colon. Based on this knowledge, I'm led to anticipate that this is indeed a FAP polyp.

So what if it is a FAP polyp? It's already been removed for biopsy. But what next? How soon will more develop? I feel as though I'm simply waiting for the other shoe to drop. In all likelihood, I will develop more pre-cancerous or cancerous FAP polyps in my lifetime. In all likelihood, I will develop cancer again in my lifetime. So why can't this be this time? Why can't this likely possibility simply occur now rather than later. Why am I always waiting for the inevitable? Can't it simply occur and be over with. I'm tired of waiting. If I'm going to develop cancer, let it be now. Not later.

And so I wait.
I wait to hear my biopsy results.
I wait to hear about what my future may hold for me.

Traveling with an Ostomy

Traveling with an ostomy is manageable and even enjoyable but it is faced with risks. There are risks of inconvenience in regards of restrictions when flying, restroom access, and appliance welfare. Recently while traveling to visit my Great Uncle for a week, my mother experienced an intensive week of ostomy issues – specifically, appliance issues.

We decided to fly to arrive to our destination and was as any flying ostomate, she was faced with the typical TSA regulations of traveling with ostomy supplies and restroom restraints. Fortunately, she didn’t encounter any hassle from TSA regarding traveling with her ostomy supplies and wasn’t selected for a body scan or pat down. You may find the UOAA's travel tips for ostomates helpful for additional guidance, particularly when flying.

We were away for a full week and my mother packed enough supplies for 5 days worth. Typically her ostomy appliance wears for 3-4 days per change. With your typical run, 5 days worth of supplies was expected to be plenty. However, fate shouldn't be tempted. When something can go wrong, it seems as though it often will do so. And so was the case for my mother.

Her activity didn't particularly change out of the norm from her usual activities. Rather, her activity lessened if anything. While away she was unable to participate in her regular exercise classes and physical therapy sessions. She bathed normally and used the same products she typically uses during an ostomy appliance change except for one product that she occasionally uses. She even followed the procedure exampled by her ostomy nurse. And yet, her ostomy appliance leaked five days out of the seven days we were away.

We brainstormed about what was being done differently, what needed to be done differently. The only difference were the two days that instead of a regular shower, she took a sponge bath. Nothing that we could think of should have been causing such an excessive increase of appliance leaks. With an ostomy you are meant to be able to participate in activities, even strenuous, physical activities. You are meant to be able to shower daily. You are meant to be able to live in various climate zones.

It was Sunday evening and my mother had two days worth of supplies left and we were scheduled to return home on Tuesday. After four days of consecutive appliance leaks and desperate for a lasting appliance, my mother opted to forgo a regular shower Sunday night and instead take a sponge bath in the morning. Miraculously, she awoke Monday morning without any appliance leak. She had two days worth of supplies remaining, one for each day of the trip remaining if needed. Monday day and night passed without incidence. We thought she was in the clear but remained concerned about what would happen if her appliance leaked while traveling home. There wouldn't be time on the plane to an appliance change and the tight quarters of the lavatory would make a change highly difficult even if timed were allowed. But what should she do if a leak did occur? We brainstormed once again and I suggested she use her medical tape to tape a Ziploc bag onto her skin with the appliance safely tucked away into the Ziploc bag and paper towels wrapped around the appliance itself. This would allow for the appliance to remain contained. If needed, she would be able to cut the bottom of the Ziploc bag and attach a pouch clip to even allow for emptying of the pouch.

Tuesday morning arrived and the night passed without issue once again. All of the appliance leaks had occurred during the night. We successfully completed our first flight of the day with just one more flight remaining after a layover. Once again, we thought we were home clear. Twenty minutes prior to our flight boarding the feared but unexpected occurred. Her ostomy appliance leaked. She headed to a terminal bathroom to hastily adorn her makeshift Ziploc bag appliance container. I watched the clock to check on her progress and update her of the flight status at the 10 minute mark. At 8 minutes, we were called to start boarding the flight. She finished her process and we headed toward the plane. Unsure of the makeshift container, her appliance remained intact for the remainder of the flight and drive home.

In spite of the difficulties, our travel was worth it all. Next time though, my mother will pack more than enough supplies in case of such a rare occurrence again. And perhaps know the local ostomy resources ahead of time.

Hydration via Speedlyte: A Review

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

Hydration is an essential key to living well as a living being. However, for those of us whom are missing parts of our intestines, dehydration can be a dangerous game. Without our full intestines, we are easily at risk of dehydration which increases our risks of electrolyte imbalance, cramps, fatigue, lightheadedness, intestinal blockages, and increased stools which worsens dehydration.

Even though I live with a straight pull thru and have Short Bowel Syndrome due to removal of my colon and part of my small intestine, I am not a keen observer of my own hydration status. I drink liquids when I'm thirsty and I tend to drink a fair amount of coffee and tea, which both further dehydration due to their caffeine content. I don't typically experience overly bothersome effects of dehydration. I'm not prone to intestinal blockages or cramps and my electrolytes have been remaining stable during blood lab checks.

My mother, who has an ileostomy and Short Bowel Syndrome, suffers with dehydration on a daily basis. In addition, she has Diabetes and Restless Leg Syndrome. With her combination of medical conditions, she experiences electrolyte imbalances that cause severe daily leg cramps that are so painful she is brought to tears on a regular basis and experiences partial intestinal blockages on an almost weekly basis.

So when I was contacted by Einsof BioHealth regarding a hydration product, I immediately thought of my mother's frequent dehydration. I have been given this product as part of a product review. 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 received Speedlyte, a product for Pediatric and Hypotonic Dehydration. When I approached my mother about using Speedlyte to improve her leg cramps, she was interested and sought the medical approval of her doctors. My mother was diagnosed with abnormal kidney function and must be mindful of the products or medications she utilizes. Her Gastroenterologist and Nephrologist both approved her use of Speedlyte to boost her hydration.

Speedlyte was designed to increase absorption up to three times faster thereby requiring less volume of liquid than other products by utilizing an Encapsulated Nano-Electrolytes formula. This means the transportation of electrolytes into the cells is more efficient and allows for rapid rehydration. With this different formula, Speedlyte can be absorbed in spite of a reduction in villus cells as a result of diarrhea. According to Speedlyte data, this new formula has been shown to reduce unscheduled intravenous rehydration therapy by up to 19% and reduce scheduled intravenous rehydration therapy by up to 73%.

Speedlyte comes in an orange flavor and is relatively low cost for a 20 ounce bottle through Amazon.
It is also made without any artificial flavors, colors, or sweetners and contains a low amount of sugar. This is important as sugar and artificial sweetners increase diarrhea and sugar content must be monitored for those with Diabetes, such as my mother. My mother was approved by her Nephrologist to drink two bottles a day. However, due to the size of bottles my mother opted to drink one per day. She drank a bottle throughout the day rather than in one setting. She was not fond of the orange flavor but did report it tasted better when it was chilled. I, however, did not mind the orange flavor and found it to more appealing than other orange hydration products. I was advised by a Speedlyte representative that the orange flavor is being improved and additional flavors are being developed for future release.

My mother often experiences worsened leg cramps in the evening and during the night after she exercises during the day. She found by drinking Speedlyte through the day she no longer experienced leg cramps in the evenings or during the night. After exercising during the day, she would begin to experience the beginnings of a leg cramp in the evenings. However, upon drinking Speedlyte at the onset of a leg cramp she was able to curtail the leg cramp from developing within 20 - 30 minutes of ingestion and the symptoms dissipated. This allowed her sleep to improve significantly as she wasn't waking up with cramps and required to "walk them out".

Overall, my mother was satisfied with the reduction in her dehydration symptoms while utilizing Speedlyte and found it to be a "good product". Also, as an added benefit the representative advised me that some Medicare beneficiaries are able to receive Speedlyte through their Medicare benefits for a monthly supply.

If you're interested in learning more about Speedlyte or trying this product for yourself, you can find more information at Einsof Biohealth and purchase through Amazon.

The Journey of Chronic Illness

Jour·ney

ˈjərnē/

noun

noun: journey; plural noun: journeys

an act of traveling from one place to another.

"she went on a long journey"

synonyms:

trip, expedition, excursion, tour, trek, voyage, junket, jaunt

Imagine yourself disembarking on an adventure exploring a vast land with only your mode of transportation and a map. This map can take you anywhere amongst this land. Whichever way you choose to go will determine what you encounter along the way. Each way you turn will vary in the experiences and people you encounter. Some ways will be similar while others will be substantially different in comparison. Individuals may join you and leave you at various points. Your experience along the paths you choose differ from those of others according to their chosen paths. No adventure will be exactly the same. There are too many variables leaving each traveler with a unique experience, a unique reality.

Life is a winding road of never ending experiences and adventures. The synonyms of journey truly fit the uncertainty of life. You never know what life has in store for you, what will come to be with each decision you make in life.

And so it is with chronic illness as it is with life in general. We never know from day to day if our chronic illness will change. If we will experience new symptoms or a reduction in symptoms. We enjoy our plateaus of good health while they last but these plateaus are never guaranteed. Change is the nature of chronic illness. The doctors we see, the hospitals we attend, the medications we take, the foods we eat all play a role in our chronic illness life. Each may be a positive or harmful decision for us that has the power to drastically change the development of our chronic illness. Unfortunately, like life, we don't have the foreseeing power to know what the best decision is for our chronic illness. Instead, we must make the best decision based on the knowledge we have and the circumstance we are faced with at the time. And we hope for the best.

Others disagree with using the word "journey" to describe living with a chronic illness. I, however, embrace this term for my chronic illness life. My life and my chronic illness are not mutually exclusive. For there to be one, there must be the other in my life. It is a fully inclusive circle. This isn't my preference but it is the way it is and so I will embrace this journey.

Just as we trek through life that is full of surprises - good and bad - so we trek through the journey of chronic illness. I have been overwhelmed by my encounters with others I never would have crossed paths with - physically or virtually - if it hadn't been for my chronic illness. I have made lifelong friendships with many individuals on their own chronic illness journey. I have held very dear friendships that played important roles at key moments in my life. I have been blessed with some outstanding doctors who help me along my journey. I have also been cursed with some very devastating moments throughout my chronic illness but with the support of family, friends, and medical providers I have survived those dark moments and am flourishing along a good path at present.

We all enjoy the smooth, easy paths on our voyage through chronic illness. However, we wouldn't be able to fully appreciate the beautiful tours of life if it weren't for the dark, trying passages. When we cross the bridge from the dark into the pristine, we are able to enjoy the ease with a new understanding, a new gratitude. Our eyes are reopened to the greatness of life and so we experience life with renewed senses. Unfortunately, we wouldn't experience these fulfilling moments to the same degree if we didn't trek through the difficult paths of life. And so these experiences go hand in hand to make the experience that is life complete.