Monday, December 26, 2016

Throwing Out New Year's Resolutions

I'm just going to say it, I think New Year's resolutions are a bit silly. Sure, I've made my own resolutions for the new year in the past. They were usually for some type of betterment of myself. Some new, improved version of myself. A healthier, skinnier, this or that better me. And like the majority of people, I didn't keep my resolutions. And then I asked myself "Why am I waiting for the new year to start accomplishing my goals? Why not start now? Why do I need a holiday to do something for me?"

So I threw them out and I started doing things for me in the now, not for some day. This was particularly true as I found my own strength and freedom after my marital separation and divorce. I promised myself to do more things for me and I made a list of what I wanted for myself. And so far, I've kept those promises to myself. I didn't wait around for a few months to pass for the new year to come around. No, I made a change that day and with the first opportunity that came along for me to act on my promise, I did. I want to stretch my wings and experience the life that I want without fear that I won't have someone to share those experiences, those adventures with along the way. I'm determined to enjoy and experience life regardless who is by my side or rather, who isn't by my side. This is my life goal and it isn't waiting around for a particular day. It's happening now and I best be on board or I'll miss out.

We don't need some day. We need now. Life is too short and too complicated, particularly when chronic illness is involved. We never know what tomorrow will hold. The days change from one way to another in a moment's instance with our health challenges. When we have the moment, let's grab it. Let's not wait around for the next moment.

Since I stopped waiting for the next moment to come along I feel more alive, more content. That's what I want for all who I cross paths with along my life's journey. I want to feel the thrill of life pulsing through my veins. I want us to enjoy the ride together with no one on the sidelines waiting.

What's your life's ambitions? What do you want out of your life? This isn't a resolution, this is a life change. It's more important than a once a year resolution, this is for a lifetime. With something this large, it can require soul searching to discover our heart's desires to determine what really makes us happy and excited about life. Once we make this discovery we can start to establish our game plan for achieving what we want out of life. Every game plan gains momentum when we start with small, achievable steps that lead us to our ultimate goal. Let's make a plan and go for it. Get out there and enjoy life for all its magical ups and downs, twists and turns.

Sunday, December 18, 2016

My Death is Acceptable

I'm comfortable with death. Anyone who knows me will hear me casually talk about death, particularly my own. It happens. I think it would be astounding if we were all accepting of death. It's natural and we are all going to make that passage at some point so why not accept the inevitable. Why stress about our own future deaths when we can enjoy life now and rest in the peace of the future?

I've faced my own death when I was a child and a teenager. In grade school, due to the negligence of ER staff it was missed that I was experiencing a life threatening blockage. Instead, I was dismissed as a whiny child and sent home with pain medications. The following day my parents returned me to the ER and this time the ER staff completed more thorough testing to discover my small intestine was wrapped around itself and surrounding organs. As a result of the delay in treatment, part of my small intestine - including my jpouch- died and my doctors deemed it a miracle that I had survived.

In high school, after my straight pull thru surgery I had so many adhesions from my previous surgeries that a stricture was created around my small intestine. I was constantly barraged by vomiting and excessive diarrhea. To the point that my body couldn't maintain. I was going to the doctor every week for regular lab monitoring resulting in frequent hospitalizations to try to stabilize my out of control electrolytes. The reality was that I was slowly dying. My doctor later told me that she never knew if she would see me at my next weekly appointment, if I would live from week to week.

I recall one morning, the sunlight hitting me on the couch where I spent most of my time as I was too weak to climb the stairs to my room. I remember surrendering to a sense of peace and serenity that I've never experienced before or again since. I sensed death yet it was so serene, it was lovely. I felt safe amidst my world of unknown and uncertainty. And then I was overcome with a sudden urgency to share my goodbyes with my mother. My mother laid my head upon her lap and stroked my hair as I gazed up at her and told her my goodbyes. Her eyes welled with tears as she listened. I was ready. I was at peace. Within the next day or so, I was back in the hospital once again. My doctor told me I was at risk of a heart attack or brain seizure at any moment.

If it wasn't for the unimaginable sense of peace I experienced that morning, I might still be scared of my own death. But instead, it left me in awe to embrace my own mortality. When my time comes, I'm ready. If I don't meet all the goals I have set forth in time, that's okay. I will live without regrets. I do, however, have a preference for my expiration date. I'd like to walk on by the age of 40, for my own personal reasons.

And so it's hard me for to understand the fear others hold about death. I particularly have an extremely difficult time understanding why others are so uncomfortable with my acceptance of my own death. In fact, when others repeatedly question my own acceptance it begins to infuriate me. Do we question that another is scared of their death when that person states so? No. Then why would we question someone who states they accept their own mortality?

To be honest, if I were to develop cancer that required chemotherapy for survival...I'm not sure I would elect to undergo chemotherapy. I'm very tempted to simply let the cancer run its course. It's not a wish for death or a means for suicide. I'm just simply comfortable with death and quite frankly I have an intense fear of outliving my parents. My preference is to not outlive my parents and yet my parents are one of my main priorities in my life. I feel as though my life purpose is to remain as independent as possible so that I may meet my life needs and those of my parents. Therefore, I'm conflicted about accepting such an opportunity should it arise - torn between my preference and my sense of duty to remain living in order to provide any future caregiving needs my parents my require.

I've been embraced by the warmth of death and so regardless if my time comes sooner or later, I will accept and welcome my transition into the after world. The present world will have its frightening moments that challenge us. However, we need not feel frightened or challenged by our own mortality. May we all rest in the peace that is waiting for us when our time nears.

Monday, November 28, 2016

Accommodating Holidays

The holiday season is already starting. It's a rather busy time for the majority of people between parties and meals amongst family, work, and friends circles. It's not even December and my month is already booked with holiday festivities.

The holidays tend to be a stressful time for everyone. The hustle and bustle of preparing our homes, traveling, hosting others in our homes, gathering gifts, attending celebrations, and more. However, for those of us with chronic illness there is an added stress of accommodating our health around the demands of the holidays so that we may also enjoy the holidays.

Whether we're traveling or we're remaining local, there's always concerns surrounding the holidays that we need to address for our own self-care and enjoyment.

I've already had to make such accommodations by changing the date of the gathering I'm hosting so as to allow myself to be able to physically attend a work gathering. My parents and I were concerned that I wouldn't be able to physically complete both one same day, even though the times didn't conflict. But would I physically feel up to both parties in the same day? Most likely not.

Many of us have dietary restrictions to take into consideration. This is easy enough to control if we're hosting holiday celebrations but is another ball game if we are visiting another household or party. We may not be able to enjoy the available foods or we may need to limit our intake to reduce the side effects of eating. This can also apply to activity accommodations. For example, I must be mindful of what and when I eat when wanting to participate in activities as food intake worsens my short bowel. This was another consideration for scheduling parties as I often experience pain and nausea after eating that can last for the remainder of the day.

For some individuals activity reduces GI distress whereas for those like me, it increases GI distress. I'm able to better control my short bowel frequency when I limit my movements. In order to enjoy activities that require physical activity I must limit my food and take medications to slow my short bowel.

Pill burden is another common accommodation, particularly with meals. For some this can be embarrassing as it can lead individuals to feel that it draws attention to themselves and their health conditions. Others are bothered by the sheer number and frequency of medications required. When traveling, toting around multiple medication bottles is a hassle that takes up valuable space for other necessary items, especially when flying. Yet keeping medications in their respective bottles can be necessary when flying to reduce confusion about medication necessity and to comply with states laws regarding prescription labeling.

Flying tends to always weigh heavily on my mind with my health condition. This was worse when I had an ostomy but still remains with me even without an ostomy. When I had an ostomy I had to be mindful of how many supplies I had packed, preparing for a TSA search, always worried that I would encounter a TSA agency who would try to challenge my medical necessity for my supplies. What if my ostomy leaked while I was in the airport or while flying? Did I pack enough supplies to last during my visit? Now I worry more about restroom access due to my short bowel. Will I have enough time to use the restroom adequately before boarding? What if we have a delay on the tarmac and we aren't allowed to exit the airplane? What if I urgently need to use the restroom and I'm not allowed to use the lavatory? The what ifs run rampant when I'm flying.
The what ifs reduce in number when traveling by car as public restrooms are fairly excessive in number in the United States although does decrease in number when traveling through rural areas. For travel tips with an ostomy, review the UOAA's Ostomy Travel Tips.

Whichever holiday you may be celebrating, wherever you may be celebrating, I wish you the happiest of holidays and enjoyment with your loved ones.

Tuesday, November 1, 2016

Chronically Dating

I had left behind the dating world for nearly 7 years and I thought I was leaving it behind permanently. However, after my marital separation and divorce I found myself once again dating. I was suddenly thrust back into situations calling for me to decide when, what, and with whom to share the details of my chronic illness.

I previously shared how I've chosen to disclose my health and particularly my past with an ostomy. I am much more confident in my disclosures than I once was when I was younger. I'm now comfortable with someone not accepting me because of my health. I've learned that if another can't accept my health, then I don't need that person in my life. In fact, events of the last year have lent to my improved ability of letting go in general.

Dating after divorce with a chronic illness has been interesting to say the least. I've become increasingly open about the details of my health and illness with suitors and I've been met with overflowing acceptance. I've always been accepted by those I've shared my health with previously, however, this time around the dating world has been filled with even more acceptance. Perhaps dating in my 30s is part of the difference as we tend to view the world, ourselves, and others in a different light than we did in our younger years. This may also explain the differences in reactions I've experienced since re-entering singledom.

Although I've been accepted by each partner, there were some very different reactions. My suitors ranged from "I'm ready to take care of you in whatever fashion required" to "I can't lose you early on in your life". While one suitor was eagerly ready to spend whatever amount of time my life holds for me caring for me and my health needs another suitor was so concerned about losing me early in life due to the likelihood of cancer that he wasn't sure he would be able to handle a romantic life with such a very real expiration date.
I was shocked to actually encounter someone who was so concerned about being able to handle the real possibility of my own death at a relatively young age. I am accustomed to death, particularly the threat of my own that sometimes I forget what others may feel or experience in relation to my own mortality. I also wondered if this person would be the individual those of us with chronic illness all dread: the person who leaves because of their own inability to handle life with chronic illness.

I'm not sure how we guard ourselves against such individuals as I haven't truly been in such a situation. Guarding our hearts is a wise move to a certain degree. At some point, we either must trust our partner or we must let go. The degree to which we scrutinize our potential life partners varies from person to person and experience to experience. I can only urge others to be aware of their own comfort levels and move within those boundaries. We aren't required to move past those boundaries until we are ready, whatever those boundaries may be. Dating isn't always the easiest lifestyle and chronic illness can complicate dating life. However, I view loving yourself first and finding your own happiness as a fundamental key to tackling life, including the dating world. We don't need to seek love and acceptance from others when we find love and acceptance from within ourselves. Once we have conquered this feat, any love and additional acceptance from others becomes a shared joy rather than a request for validation and esteem that we have yet to afford ourselves.

I found part of accepting my life and in particular my divorce was to also accept the possibility of spending the remainder of my life alone. With marriage, I had a lifetime caregiver if needed. With divorce, I gave up that lifetime caregiver for a life of uncertainty on my own terms. I don't know what the future holds, but I've accepted the unknown. I do know that no matter what is in store for me, I create my own happiness and I can survive. The dating world is no different - we hold within ourselves the power for happiness and survival.

Thursday, October 13, 2016

A Surreal Life

A year ago my life was very different than from what it has become, it is drastically different from 2 years ago. I never would have imagined that I'd be where I am at now in my life. I foresaw my life being very different in 2016 than what it presently is. And yet I'm full of gratitude and amazement as I struggle to believe my present life is reality.

To fill you in, a lot has transpired in the last 24 months:
  • I decided not to have any children because of my health and FAP 
  • My husband was diagnosed and hospitalized with diabetes
  • My marriage began to fall apart
  • I entered a bout of extremely severe depression
  • I was hospitalized for the first time in 8 years
  • I developed increased chronic pain and started having chronic nausea
  • I went on a dream family vacation to Alaska (highly recommended by the way)
  • One of my very beloved great uncles died at 99 years old
  • Estrangement from some very dear friends and family members
  • Marital separation
  • Moved back home to my parents
  • Divorced
  • Bought a house
  • Became independent once again
Not everything that has happened in the last 2 years has been a hardship. In spite of very difficult, trying situations throughout the last 2 years every situation has held life lessons for me and has helped me grow as an individual.

I psychologically surivived situations I never imagined I would face and wasn't sure I would survive at the time of their occurrence. And yet, with each hurdle I became stronger and fiercer. I never saw myself as a survivor or as a brave person before in spite of surviving 7 surgeries, near death experiences, and the cancer that was developing in my body. I've lived through PTSD, suicidal ideation, and severe depression. I've survived the physical and emotional loss of many. I survived. I learned I am strong and after I've faced physical and psychological torments, I can survive anything.

It's true that we don't realize how strong we are until we have no other choice. Feeling on the verge of a mental breakdown for months on end last year, my mind somehow held onto the smallest amounts of hope and strength to keep me alive to fight another day. And now, I'm stronger than ever before. Now, I'm prepared to fight whatever future fights may be in store for me. I know I've survived the worst psychological torments I've ever encountered and it's only up from here. Even my bad days are not my worst days because those are behind me.

I've harnessed my inner strength that for far too long I didn't know existed. It's easy to ignore our inner strength. We tend to minimize our feats of mental strength. We become accustomed to survival mode without acknowledgement of what it actually takes to survive. We get caught up in surviving day to day without relishing in the fact that we are surviving. Let us stop cheating ourselves. Let us honor our strength and harness it. When we bear witness to our strength we honor ourselves, our survival, and our life. We begin to free ourselves of the draining mental fight by power housing our strength. Thereby allowing increased utilization for continued survival and breaking free of our mental chains. And after the fight, we will realize that we deserve to be free.

Wednesday, October 5, 2016

Fresh Assist: A Sponsored Post

This is a sponsored post

As an individual with chronic GI issues due to Short Bowel Syndrome (SBS), I'm always excited for anything that can help reduce the side effects of SBS. SBS causes frequent diarrhea that in turn can cause raw skin, itching, burning, and painful sensations. It's common for individuals with SBS to utilize products such as flushable toilet wipes and creams to aid in hygiene and soothing the bothersome effects of SBS.

So when I was asked to review a similar product, I was happy to do so.  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.

I received Fresh Assist Spray, which reinvents the flushable toilet wipe by making available a conveniently sized, 2 ounce portable spray bottle with a solution to be sprayed on toilet paper prior to use after a bowel movement. I used the recommended spray amount with each use and found the solution to be a comfortable room temperature. I like using a spray bottle as one can spray the solution at their own discretion. This is not an option with conventional flushable toilet wipes, which can be too wet and cold. An additional benefit over wipes is the spray also reduces the amount of waste flushed with each bathroom use thereby being an easy, eco-friendly option.

Fresh Assist Spray comes in two fragrances: Soothing Lavender and Cooling Chamomile. I received Cooling Chamomile and was content with the subtle fragrance that was balanced well. Some products are too heavily scented leaving the user with a noticeable odor. This, however, was not the case with the spray. I was concerned about using a fragranced product on my sensitive skin but was pleasantly surprised that the scented product didn't cause any burning sensations on my already sensitive, at times raw skin. To my surprise, the solution didn't cause any burning or stinging sensations during any of the times of use no matter the condition of my skin.

I found Fresh Assist Spray to only require the recommended 2-3 sprays and that it effectively improved cleaning in a single wipe. I use a skin protectant cream regularly to combat raw skin from the effects of SBS and found the spray to cut through the cream without difficulty. The solution provided a cool, soothing sensation that reduced itch and soreness. I found the soothing effects of this spray to become addictive as using toilet paper without any spray was immediately uncomfortable and rougher feeling than with the spray. I used this spray with a 2-ply soft tissue which proved to absorb but not become disintegrated by the solution. I would caution using this spray with a 1-ply toilet paper as the tissue would not likely hold up to being sprayed. However, I did not experiment with 1-ply toilet paper so I can not fully speak to the integrity of 1-ply toilet paper with use of this spray.

Although I am heavily dependent on the use of a skin protectant cream with each bowel movement, the effectiveness of Fresh Assist Spray left me being able to reduce use of the skin protectant cream after every bathroom trip. I didn't feel comfortable discontinuing use of the skin protectant cream altogether but I was able to reduce using the cream to after every 2-3 bathroom trips. Based on this, with regular use it is possible that this spray could aid in healing raw skin to the point that protectant creams are no longer required.

Based on my experience with Fresh Assist Spray, I would highly recommend use of this spray for anyone. It is particularly useful for individual with GI issues that cause painful skin conditions from frequent bowel movements. The spray bottles come in a reasonably priced single or two pack and lasts a relatively long time even with 3 sprays a use.




Thursday, September 22, 2016

Standing Together

Today was a physically taxing day. I woke up not feeling my best and it worsened as the day drew on. I ended leaving work early due to stomach pain and bloating. As soon as I returned home, I crawled into bed to rest. I was worried about feeling better in a few hours. After all, I had to prepare for an evening interview with Lee Silverstein, The Colon Cancer Podcast.

It's amazing how much rest the body can gain from simply lying in bed for a couple of hours. My body knows that once it's lying down that it doesn't have to work hard or stress. My mind can relax with my body and together they can begin to mend themselves. And it worked; although I don't feel like completing projects this evening, I am left feeling energized with adrenaline and hope for the future.

I must give credit for the rejuvenating energy to my conversation with Lee though. Sometimes it's hard for me to speak with others. I often find myself emotionally drained after visiting with others. Perhaps that is more to do with my line of work as a medical social worker. Sometimes talking is the last thing I want to do after a long work day of focusing on and assisting others with their life issues. But after conversations such as tonight's conversation with Lee, I'm reminded just how much we need others in our lives. Support, whether it is online or in person, is an integral part to life and for our well-being.

The internet has become alive with multiple support resources for every issue imaginable. I'm amazed by how tangible support is now than what it was even just 10 years ago. With a rare disease, I didn't know anyone outside of my family for years with Familial Polyposis. And now there are social media groups and websites solely devoted to Familial Polyposis. And the case is the same for countless other rare diseases.

As wonderful as these online support resources are, we mustn't forget how important in person support remains. It's easy to take the easy way of communicating digitally with others through text and online messaging services but there still remains nothing quite like in person visitation. In person visitation forces us to reduce our isolation that we often succumb to with chronic illness due to how debilitating our health symptoms can become. In person we can give and receive physical support - hugs, shared tears, even household assistance.

In person visitation can be physically stressful as it forces activity upon us yet I'm always glad I forced myself to leave the house or prepare for a visitor afterwards. It reminds me of the importance of friendships. Not everyone we talk to has to have chronic illness so let us not abandon our other friends.

If you're isolating yourself because of your health, you can break through the isolation. Remember, isolation can lead us to depression and can worsen already existing depression. Depression will tell us not to interact with others and by engaging in activity we loosen the bonds of depression. However, I understand how daunting activity and socialization can be, especially under the stress of depression. Because of this, I start with a small, achievable goal as this reduces the feeling of being overwhelmed and with each small step, the next becomes easier.

We all need support, no matter who we are or what we're facing. Reach out when in need and reach out to another during their difficult times. Socialization is a wonderfully rewarding gift we can give each other.

Tuesday, August 30, 2016

Remember the Worst

I've been through worse. I've survived worse. 
I can survive this too.
I chant to myself, reminding myself, preparing myself.

I underwent a biopsy of a section of my last stoma site, now a scar, that never healed. It would become irritated and blister, a painful blister until it was made to burst. This cycle would continue on a weekly basis for 15 years until I decided to address it with a doctor. Although believed to be benign, the doctor wanted to complete a biopsy just to be safe while removing the sore simultaneously.

I dreaded the procedure. Actually, I dreaded the lidocaine shot. Not only can it burn but the level of pain would depend upon where the needle was placed - something I was afraid to ask about beforehand. My anxiety built and as the needle was placed inside the sore twice, I couldn't help but scream in pain before bursting into tears. The rest of the procedure was completed without incidence. And now, I'm left with the irritating pain that remains after the lidocaine has worn off.

I've survived worse than a shot in a sore on my scar. I've survived being sliced open without anesthesia, my intestine twisted around itself and surrounding organs, insertion of ng and rectal tubes, and the Essure procedure. And yet, in that moment those past survival achievements mean nothing. They don't help reduce my pain in the moment.

So how are these achievements helpful at all?

Remembering the worst helps in our mental preparations for what's to come next.

We survived worse so we can survive less.
If you're like me, mental preparation is a requirement for most medical procedures. Even lab draws require some mental preparation on my part. I have to coax myself into the right state of mind, inducing a bit of calmness into my highly anxious and fearful mind. I anticipate the pain before the pain begins and if I allow myself, I'll physically feel that pain without any actual physical prompting.

At times I require more than coaxing but also convincing of myself to go through with a procedure.

When asked if I would still have gone through this recent biopsy if I had realized the level of pain I would experience, I wasn't sure how to answer. I'm not sure if it would be worth it to me to go through this again. After all, the blistering sore was more of a nuisance than anything. It was never infected and posed no danger, just a reoccurring irritation of fluid build up. Now as the pain begins to subside with healing, I'm glad I had it done but would I really go through it again? I'm not sure I would. I like to avoid pain when I can. And it honestly hurt more than I first thought it would when I decided to have the sore removed. It was only during the approaching time to the biopsy that I started to fear and imagine what the pain level would be. Not only was it just a nuisance than any real issue, but as I wait for my new incision to heal I'm increasingly paranoid about the section of skin that was stitched to the incision section. This junction caused a new bump, very similar to the unhealing sore I just had removed. I worry that this will just create another unhealing sore or worse - a bump that will be more irritated than what was there before. Now I'm overanxious for the removal of the stitches to be removed so I'll be able to find out what this new scar will become. Would I go through this again to fix a new problem? Not likely. I would, however, regret my initial decision if my fears are confirmed about this possible new irritated sore spot.
I debated the idea of receiving iron infusions simply because it involved an IV. I desperately wanted my hemoglobin to reach a normal level - I was so exhausted I was ready for an IV. But after that first round, would I really want to continue with the infusions? So far, I'm willing to undergo the infusions in an effort to obtain a stabilized hemoglobin. And now I'm anxious to discover how the combination of infusions and ferrous gluconate (instead of ferrous sulfate) will affect the stability of my hemoglobin. And honestly, the first infusion of a round is the worse. After going back to receive an IV after several months without any it causes the anticipation to build, increasing the fear of the dreaded IV. Yet, the second infusion of the round is by far easier than the first. I survived the first one, I can survive the second one. There's less time for anticipation and fear to build between the first and second.

Regardless the various reasons we may hold onto remembering the worst, it remains to be helpful as we prepare ourselves for another medical battle - small or large. It reminds us of our strength and resiliency. Without these two characteristics, we become hard pressed for taking to the battle again. With these two characteristics though, we are fierce and unrelenting even we don't realize it. So stay strong, don't shy away from what you've survived. It will help you fight another day.

Monday, August 8, 2016

Focusing Our Efforts

I've been working hard on preparing my new home for moving in and I've noticed several changes - not only physically but emotionally. There's a strong, established connection between behavior, thoughts, and mood - when we change one, we change them all.
I had been experiencing an emotional funk as I was battling my excitement for a new home and grieving my divorce simultaneously. With my new home, I was able to distract myself from my grief and instead focus on my future. And it worked. In spite of a 9.4 hemoglobin, I was able to physically work on my home 14 hour days on the weekends and 4 hours during the week after work. I was pumped with adrenaline, I felt better physically, I was motivated and filled with excitement for the possibilities unfolding before me. And yet just four months ago, with a hemoglobin of 9.2 I was falling asleep at work. And it all changed because I focused my efforts on preparing my new home.

We feel better, physically and emotionally, when we keep active. Whether it's exercise, projects, or socializing our bodies and mind need activity. Remaining stagnant is harmful to our well-being. It is common for depression to take root when we are listless in our activity. Without action, we become bored and isolated, we focus our thoughts on our frustrations and our sorrows. We allow ourselves to become fixated on what bothers us, what's wrong rather than what we can do and enjoy.

The key becomes balance, as it is with so many things in life. Striking balance between activity and inactivity can be difficult at times when we are highly motivated and on a euphoric high of feeling well. We are prone to overdoing ourselves at this point and risk our own health. My family and friends cautioned me as I quickly began to overexert myself in my efforts. I slowed down, started taking breaks and eating regularly again.

Burn out is another side effect of overexerting ourselves. When we start to push ourselves, it is easy to push ourselves too far, too hard, too fast until our motivation and adrenaline fizzle out. We must learn how to pace ourselves in our efforts so that we may take care of ourselves while enjoying the fruits of our endeavors.

Find the courage, the motivation to discontinue inaction and instead focus our efforts and we will find ourselves more fulfilled than when we were listless. Our well-being will be most appreciative of our conscious decision for activity.

Monday, July 18, 2016

Tainted Moments

It's been six months since my divorce was finalized and 10 months since I separated from my now ex-husband. Life has become easier in those 10 months as I learned to accept my marriage had ended. I felt ahead of the game as I had been given the opportunity to start the grieving process months before I made the decision to divorce. I realize there is no going back, nothing to fix what transpired, there is only moving forward. There are moments, days, even months of unceasing happiness where I'm dulled into thinking I've fully moved past my marriage and divorce. But these are only passing moments of falsehood that are ripped to shreds with backslides of emotional torture and backlashes of the destruction to my life that have occurred.

Divorce is a horrendously emotionally destructive force that tears apart the psyche and the heart. Albeit necessary and unavoidable at times. It has an inescapable far reaching grasp on life after divorce. Day by day I learn to live without the one person I considered to be my true soulmate and countless other adjectives to express how much this person meant to a cautious heart that didn't expect or believe it would find or receive what was given in the span of nearly 7 highly fulfilled, unconditionally loving years. And in spite of my daily learning and adjustment, I've come to expect that the milestones of my new life are haunted by my marriage and divorce.

This wasn't an easy expectation to accept. I was blindsided after my divorce time and time again. I experienced long stretches of excellent coping with how my life was unexpectedly altered. I was happy, free of heartache, and enjoying life only to be emotionally slammed when I would accomplish a life milestone by the haunting remnants of my marriage. With each milestone or accomplishment, I'm reminded that I was supposed to be experiencing these moments with my husband not on my own or with another person. And the grieving of my marriage is renewed each time. Grieving that is soul breaking.

Divorce doesn't come in a neatly wrapped package with a guide of what to expect. I've learned one can never truly be prepared for how divorce affects the heart and life afterwards. I will be coping perfectly fine one day and my peaceful existence will be ravaged by the heartache of divorce without any warning.

Presently, I'm in the process of buying a house and as the closing date nears the worst my grieving becomes. It started the day after my bid was accepted by the seller. A couple days later my divorce's death hold loosened. Now, a little over a week away from my closing date and the death hold is tightening again. This is an exciting milestone with great promise for my future. And yet it is tainted by my marriage.

Somehow, I must force myself through the renewed grieving process and continue to forge ahead on the new paths my life holds for me as a divorced person. Otherwise, I will never be able to enjoy the wondrous milestones my future holds for me. I'm still learning how to break free of the death holds my divorce periodically has upon me. I'm told by other far more experienced divorcees that I will experience such grieving periods for 3-5 years as my heart heals and over time life becomes easier.

In the meantime, I must keep sharing my pain with loved ones who will listen to me. I take refuge in the understanding arms of other divorcees who are able to relate to my experiences unlike others who haven't experienced divorce. I restarted therapy. And beyond these steps, I'm not sure what else to do at this point. But I'm taking steps to help my heart heal and enjoy my life's milestones, tainted as they are.



Tuesday, July 5, 2016

Don't Shut Me Down

I was going through another bout of depression. Not anything particularly new for me. I've battled depression since childhood when my chronic illness started. I've completed years of psychotherapy and resume counseling when needed. Although the triggers of my depression vary, it usually surrounds my health and now my divorce. And occasionally I go through bouts of feeling that life is pointless and I'm simply waiting for death. These bouts can easily become a struggle for me and I frequently reach out to friends when I'm starting to feel the pull of depression again. That is, until I'm shut down for reaching out.

It takes courage to reach out to someone when we are at our most vulnerable point; when we are emotionally raw and desperate for some semblance of peace or happiness. It's not easy opening up to others about depression especially when depression cycles periodically. We often feel like a burden to those around us and tend to struggle with our emotions on our own until we reach a breaking point where we feel we must talk to someone - for our own sanity and safety. Therefore, when we reach out it shouldn't be taken lightly. So when we finally muster up the courage to reach out for a listening ear it can be devastating when we are met with responses telling us to stop talking about what we are feeling and experiencing simply because the person doesn't want to listen or is uncomfortable with what we are sharing.

I was met with such words the last time I reached out to a friend. I can only presume that my depressive feelings was causing my friend to feel uncomfortable but as I read his words telling me to stop talking about what I was feeling I was instantly shut down. No longer did I feel safe turning to this person who wouldn't let me openly talk about my depression. No longer did I see a friend who cared for me but rather someone who wouldn't listen to my words, my pain, my cry for help. I felt betrayed. I thought this person was safe and would be there for me in our friendship. I was wrong and it stung my hurting heart.

When this happens, not everyone will reach out to another person. One rejection for help is
destructive to the psyche and the remaining emotional reserves that we cling to in our times of need. For someone whose depression has resulted in suicidal ideation, there often is not a second cry for help. A suicidal person uses the small remnants of hope and what is remaining of their emotional strength to ask for help and when that help is rejected, there is no more hope for help or recovery. When we lose hope, we lose ourselves.

It is difficult to look past a trusted person's dismissal and betrayal of our cries for help but for our own well-being we must look past another's behavior and try again. There is always someone who is willing to listen whether it be someone we personally know or someone available through online support groups or phone hotlines. We must remember this and hold strong to this knowledge.

If you happen to be privileged with the trust of a hurting person, please be mindful of what this person is experiencing. This person is simply asking for your support and understanding. Sometimes a hurting person doesn't need advice or even words, just simple acknowledgement of their pain. And if you're worried about a hurting person's safety, kindly express your concerns and direct them to professional help whether it is counseling, hotlines, or even 911 in the case of an emergency.


Friday, June 10, 2016

A Moment's Time

In the world of chronic illness anything can happen in a moment's time. Sure, this is true of life in general. However, living in the regularly unpredictable state that is chronic illness this is all the more true. As the chronically ill, we're more susceptible to change and more well-versed in change. We are pushed to our limits to adapt to an ever changing state.

Our health status ebbs and flows, pulling us into streaks of good health only to plummet us in the depths of ongoing poor health. This can happen from day to day and if we're lucky we'll have years in between the tides of changing health. With such changes in health, we become susceptible to a ripple effect of changes overflowing into the rest of our lives - employment, school, social, romance, etc. We may become unable to continue working or finishing school. We experience impacts on our social lives as we're forced to alter our activities with last minute cancellations, limiting activities, or completely giving up some of our activities. We're often faced with difficult choices as we determine who to share our lives and health with - platonically and romantically. We make ourselves vulnerable to those we care to know better. We face the risk of rejection and discrimination when we open up to others. We may even lose the one we loved if our partner no longer has the fortitude required for partnering with someone with chronic illness. And sometimes change can even mean facing death.

And yet, somehow all these changes and risks can be worth it.

With any change we are provided opportunities for growth. We can embrace our changes difficult as they may be. Achieving the embrace is made sweeter by the height of change. We are pushed and pulled, stretched to our breaking point and by the sheer strength of our tenacity, our own courageous determination we are able to rise above the change and make our own changes within ourselves and our lives. It may not be the change we initially wanted but we can make a change our change. We can own it. By owning change, we no longer let it rule and control us. Instead, we strengthen ourselves to rise above the worst of changes and learn to thrive in the face of adversity.

So how do we rise above and grow from this adversity?

  • Healing and growth begins with acknowledgment
We can't fully process and move forward until we realize what we're feeling. Only then are we able to start processing our feelings about what we're facing. The time required for processing will vary from person to person and situation to situation. Processing can't be rushed, it must be felt and it can take a lot of mental energy. But once we process we will find ourselves on the other side and much healthier mentally and emotionally than where we started. It's usually not an easy process...but the end result is worth the time.

  • Find and use support.
Although there is definite strength in the ability to face adversity and change on our own, it doesn't mean we have to face it alone or that we necessarily should. The need for belonging and social support is ingrained in us psychologically and with good reason. The ability to face difficulty alone is not the same as refusing support. The ability to stand alone is good to have but so is the ability to ask for and accept social support. It's guaranteed that there is someone who is or has gone through a change similar to what any one person is presently or will ever face. And with the advancements of technology and social media that is readily available finding someone who knows what we're going through is easier now than ever. Take advantage of it.


  • Change perspective and goals
There is such a thing as the cognitive triad. It consists of thoughts, behavior, and mood. Each part influences the other and changing one aspect with change all of them. So a great way to adjust to change? Change one of these aspects. And what better way than changing our perspective and our goals. Instead of focusing on the negative, reframe the thoughts to center around what is good about the change, what is still good about the situation, and what good can come from it. Changing goals gives us something to look forward to, something to strive for. Without goals, we're left aimlessly going through life without any real purpose. We need goals for our future.

  • Acceptance is key

Acceptance won't come quickly in most cases. But it needs to be the end result - for one's sanity and well-being. We focus so much on the change itself and what that embodies, what we've lost because of the change. It consumes us and we begin to feel like we'll never escape. But we will...with effort. No matter how hard it becomes, we must strive for acceptance. That doesn't mean we roll over and give up. No, we find happiness in where we are at in our life and enjoy the present moment. Because we never know when that moment will change again. That's the beauty and monstrosity of life - change happens in a moment's time. Finding acceptance is always beautiful though.

Monday, May 23, 2016

From a Child's View

"Is there any part of your body that hurts that would keep you from playing tag?" my niece asked, peering up at me with her big brown eyes full of hope that this time I could play with her and her sister. "I can play" I answered as a smile spread across her face.

This time I felt well enough to chase my nieces through the outdoors. I knew I needed to accept this play invitation as I may not feel well enough to join in their fun and games later. More often than I prefer I've had to tell the children in my life that I was too sick feeling to actively play with them. Instead, I'd watch from the sidelines secretly yearning to join them just as much as they wanted me to play with them. My heart breaks each time I have to decline their invitations to play. And although I see the disappointment in their faces, they've learned to understand that sometimes I just can't play.

My nieces actually know very little about the Familial Adenomatous Polyposis (FAP) disease that my mother and I share. We are the last survivors in our particular branch of the family line to have FAP. For this reason, it isn't overly necessary for the children of our branch to know a lot about FAP as their parents, siblings, and themselves are negative for the disease. They simply know that my mother and I are frequently ill or in pain and we're limited in our activity because of this. Occasionally they will ask questions, which we are more than happy to answer but most of the time they accept without question when we are ill.

I've been amazed watching my nieces modify their play to adapt to how I'm feeling so that I can typically still join them in one way or another. They have never acted resentful when I've been unable to play with them and instead show concern and care. They don't question or comment when I require frequent restroom breaks or rest periods. This has become normal to them as they have witnessed my health status all their lives.

I've found that allowing a child to witness how chronic illness affects a person greatly shapes how the child will react to chronic illness and its effects. Without exposure and knowledge, an individual is unable to grasp how chronic illness affects one's life. Developing empathy doesn't require medical knowledge of an illness but rather a practical understanding of the effects on everyday life. Throughout my nieces lives they've been aware when I'm ill.

We can share information about our illnesses without delving into too deep of information or scaring a child about our own well-being and safety. It's more important that the child know us and our love than the specifics of a disease, particularly when the child doesn't have the disease. We don't necessarily need to explain our disease to the children in our lives as long as we are real, loving, and ourselves with them. They will come to know us as we are and discover what is truly the most important - our relationship not our health.  





Monday, May 9, 2016

Using a Bidet for GI Disorders

This is a sponsored post

As a GI patient with Short Bowel Syndrome (SBS) my doctor recommended using a bidet to improve personal hygiene and reduce skin irritation. SBS is a rare disease resulting from removal or loss of function of the small and/or large intestine. Among the complications that arise from loss of intestine it is common to have frequent severe bouts of diarrhea even numbering 20+ bowel movements a day for some individuals. This often causes moderate to severe skin irritation, pain, and even bleeding.

Due to the effects of SBS, I was encouraged and nervously excited to try out a bidet. 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.
Bidets are known as an environmental friendly option to toilet paper. Toilet paper can be harsh on the skin and leave unwanted residue. A bidet reduces waste while improving skin care through thorough cleansing. 
I received a Luxe Bidet Neo 185 which attaches easily to any toilet. The Neo 185 has a dual nozzle feature with two settings for posterior and feminine cleaning. The nozzles are protected by a nozzle guard gate and are retractable with a self cleaning option. With a turning control knob, the Neo 185 allows the user to easily control the amount of water pressure preferred for comfortable use and optimal cleansing.

Luxe Bidet Neo 185 Kit
The Neo 185 comes with the equipment necessary for installation and use in a convenient small package. The installation instructions were to easy to follow and installed within minutes. I had never used a bidet previously and was nervous about my first experience with a bidet and appreciated the included brief guide for first time users.

My main goals with the Neo 185 were to reduce skin irritation and reduce or eliminate use of protectant ointment for skin irritation. I required using skin ointment quickly after my Ileorectal Anastamosis in 2001 and hadn't been able to forgo using ointment since. I began using the Neo 185 with each restroom use and discontinued using skin ointment. After one full day I noticed my skin irritation reducing and increased comfortability without my skin ointment.  Feeling comfortable to no longer use ointment on a regular basis was a personal breakthrough.

Luxe Bidet Neo 185 Installed
Flare up episodes of excessive bowel movements with SBS are common causing the skin to become severely irritated and painful from frequent bowel movements and the harshness of toilet paper on already sensitive skin. I still required skin ointment during a flare up. However, using the Neo 185 during a flare up was extremely helpful as the water simultaneously soothed and cleansed the skin allowing for reduced use of harsh toilet paper. The feminine cleaning setting is an added benefit particularly during menses to enhance sanitation and a sense of freshness and cleanliness.

The Neo 185 is a non-electric cold water bidet. I would personally prefer a warm water and a warm air dry option, however, I was pleasantly surprised that the cold water isn't uncomfortable. With the water pressure knob, the water pressure can be adjusted from a light to strong stream as slowly or quickly as preferred without rough pressure. This adjustability helps to increase comfort level particularly when adapting to using a bidet.

I highly recommend the Luxe Bidet Neo 185 especially for use by those with GI disorders to reduce skin irritation and improve hygiene. The Neo 185 can easily be purchased through Amazon at a reasonable price and is well worth the investment for a hassle free bidet.

Wednesday, April 27, 2016

Defending Invisible Illness

"You don't have anything wrong with you. You have no issue walking." he said with dismissing disdain for what I had shared as I tried to empathize with him.
My word alone that I have a chronic illness wasn't enough for another person with chronic illness too.
Mine just happens to be invisible.

Sadly, I've become accustomed to others looking at me and automatically judging that I couldn't possibly have health problems due to my appearance and age. It is highly frustrating and bothersome at times but for the most part I've learned to shrug it off. After all, I do have an invisible illness. Others aren't able to visually see that my body isn't able to absorb nutrients fast enough to keep up with my Short Bowel Syndrome (SBS) and that I frequently experience chronic nausea and pain. Or that my activities are limited and I have to carefully plan out my activities around restroom access. On occasion others may witness my difficulty walking when I'm experiencing a severe flare up of my SBS when I'm forced to use the restroom every 5-10 minutes for hours and my body becomes so sore I can barely walk even if I wanted to as movement agitates my short bowel particularly during a flare up. Nor are others aware of my past medical treatment for colon cancer and the complications experienced or the future risk of additional cancers and complications.

It's not right for others to make assumptions and judgements about what a person may be
experiencing based solely on looking at that person. But it is understandable that others wouldn't be aware without asking. It's harder to understand though when the person judging another also has their own chronic illness. Those of with chronic illness tend to bond with others with chronic illness as we find understanding, comfort, and safety amongst each other. So we don't expect someone in a similar situation to judge us by looking at us in the same way as others without chronic illness frequently do.

There's no question that continued education and awareness is necessary outside of the chronic illness community. Occasionally we're reminded that continued education and awareness is also required within the chronic illness community.

When sharing with others we need to weigh our timing and our content. With many things in life, there's a right time and a wrong time for anything and this includes our education efforts. If it's the wrong time, our "audience" may not be as receptive as other times. Assessing the moment and the surrounding circumstances can help us gauge the right timing. Determining what and how we say will vary from situation to situation but is nonetheless important. We don't want to present ourselves as victims or as comparing ourselves to another's experiences.

We want to be understood in our own right while respecting and gaining common ground with others. During the in between time of progression, it's important for our own peace of mind and well-being to remember that others are not as open to understanding another's chronic illness and becoming angry and hurt in response is not helpful. Instead, let us try not to take this personally but rather offer the understanding that we are not receiving from these individuals. And in the meantime may we enjoy and encourage one another in our trials.

Wednesday, April 6, 2016

Iron Infusion

I was directed to a door to the treatment area. I quickly surveyed the large room as I slowly, nervously walked to the nurse's station to check in. I was by myself this time. I was determined to chip away at my PTSD. I must have picked a good time, there was hardly anyone there. Large recliners lined the walls, framing the room with sectioning lines created by more recliners. Each recliner had its own IV pole. "This your first time here?" a burly man asked. "Yes" I sheepishly answered. I was directed to sit anywhere of my choosing. Surveying the room again, I picked the recliner tucked away in the corner. I'll feel safer there, I reasoned. Positioned in front of a flat screen TV and a wall of snacks, protein drinks, coffee and water machines. I was impressed with the effort to maximize comfort. I waited for a nurse to start my IV, all the while trying to remain composed. I had never attended a medical procedure on my own before. While I waited, a few cancer patients began arriving, easily picking out their chairs, visiting with others. This was routine for them.
I sat quietly observing, scared and pondering.

I was having my first IV Iron Infusion with a second infusion scheduled a week away. With tablets I managed to increase my hemoglobin from 9.2 to 11.4 with an iron saturation of only 3%. I've been lucky to have my hemoglobin reach 12 on occasion. I decided I would undergo the trauma of IVs to see what a high hemoglobin felt like. An experience I haven't had in over 20 years.

It took 3 attempts for an IV to be started. Not necessarily uncommon for me. My emotions were being rubbed raw. Years of medical trauma was rushing back over me and without any notice the tears began streaming from my tightly shut eyes. I didn't even realize I was crying until I felt the warmth of my tears trickling down my cheeks. My psyche couldn't take anymore evidently. I began to doubt myself and my ability to attend medical procedures alone. Maybe this wasn't such a great idea to come alone. I can't take this. I don't know if I can withstand 4 sticks....no 6. I've withstood 6 before....6 and I'm done with this.

3rd stick was the charm. I was warned not to move due to the positional nature of the 3rd IV. Like I'm moving with an IV in anyway, ha. I sat perfectly still as the reddish brown iron began to pump into my arm. My attention brought back to the cancer patients who primarily make up the composition of patients there. I scolded myself for letting my PTSD triggers get the best of me. There I sat with cancer patients who endure IVs and chemotherapy on a regular basis just to attempt to survive what is attacking their bodies and there I sat crying over pediatric needle sized IVs.

15 minutes or so passed and I began to feel overly tired as the iron bag drained itself. This was followed by saline pumping in me to be observed for allergic reaction. This, this is why I thought I could attend on my own. I didn't want to burden anyone with a 15 minute procedure. Granted it took 45 minutes to start the procedure and have a working IV. In my drowsy state my confidence returned. I can do this on my own again next week. I'll try not to let myself cry. I'm stronger than my PTSD, I tell myself.

Bruised, sore, and tired I left to return to work. A coworker explained to me it's normal to feel tired after receiving iron but I should notice an increase in my energy within a day or two. So far I haven't noticed a difference in my energy but remain hopeful as I prepare for my second iron infusion just a few days away.

Saturday, March 26, 2016

Working While Chronically Ill

Balancing employment and health is a challenging experience. The demands of a job and the toll of stress and exertion upon a chronically ill body is a balancing act not to be taken lightly. With proper care, the right circumstances, and a bit of luck it can be achieved.

Although my pediatric doctor adamantly believed I would qualify for disability due to my health, I was determined to make my own career. I've been fortunate to be able to maintain full time employment for the last 7 years although there are times that I seriously worry about my ability to continue working. I've learned a lot about the importance of self-care during my career thus far in order to maintain my employment status. My parents instilled upon me a strong work ethic. Combine this dedication to my work with my own hard-headedness and determination and a concoction is created for increased stress and susceptibility to illness.

During my first year of full time employment I experienced first hand the serious threat stress places upon the body. I was over-worked and still learning how to handle working 40+ hours a week while maintaining my own health. My body could only withstand the stress for so long. After about 6 months my health began to suffer and I was experiencing flare ups on an almost daily basis. I was forced to quit my job. I took a month to find another job during which time I recovered my health and have been able to work ever since after learning lessons in self-care.

I still struggle with managing my own self-care as I often accept additional responsibilities for a temporary period or insist upon working just a bit longer even when I am ill. I've learned that these behaviors place extraordinary stress upon myself physically and mentally and often result in a flare up. Therefore maintaining my usual responsibilities and taking time off when necessary are absolutely essential for my well-being.

I've learned to pace myself in my work. There are days when I am able to work 10 hours for the day and other days when I can only manage 4 hours. Instead of pushing myself past my breaking point, I must assess my health and my capability and balance it with my work load not only for the day but for the week before I recover during the weekend. If I need to work longer on a particular day, I've learned to lighten my load and increase my resting period on the day prior to my long work day.

For the past 4 months I have been battling anemia after a trial period without iron or B12 medication. I became so fatigued that I was hardly able to keep my eyes open past 11 am on average. I was experiencing multiple symptoms of iron and B12 deficiency and my daily functioning was greatly impaired. I began to worry about my ability to remain employed as my work performance was suffering and unacceptable in my eyes. I voiced my concerns to my managers and restarted my B12 medication on my own. I had to make a change before my functioning continued to diminish.

My employers are aware of my health issues and work with me to help me balance my health and my work. Working for an understanding employer has been key to my employment sustainability. I'm able to flex my time as needed, utilize intermittent Family Medical Leave of Absence, and continue my efforts to maintain a high work performance while monitoring my health status. My managers work with me on bad days and appreciate my good days. They have faith that I will complete my responsibilities, if not today then within a timely manner.

It takes a combination of effort and measures to maintain the best of health particularly when undergoing additional demands upon your body and health. Finding the correct combination for balance takes time and effort of trial and error. It's important to not compare your level of functioning to another as one person's balance set won't be the same balance set for another. It's vital for our well-being to find our own balance and not push ourselves past that balance in order to thrive with whatever endeavors we're pursuing.

Saturday, March 12, 2016

To the Broken Hearted

After disclosing about my own journey through broken heartedness and divorce while dealing with my chronic illness, I heard from several people who had gone through similar trials and it touched my heart.

Regardless of the type of relationship, those of us with a chronic illness are more vulnerable in our relationships than our healthier counterparts. We open ourselves in ways others aren't forced to expose. We are more at risk of losing ourselves as we learn to lean on another to help us through our health struggles and we begin to share our health experiences with another. When the relationship ends, regardless of reason, we are vulnerable as we regain our footing and independence.

This is dedicated to all those who are broken hearted and struggling.

Your soul has been ripped apart as you stare down at the tattered pieces of your heart.

The pain sears your soul leaving you tender, hurt, and confused.

All that you knew changed in an instant and you're left not knowing where to turn or what to do.

You fell into a spiral of lost control frantically grasping to regain your footing.

I've been where you are now. My soul was torched, my heart in pieces, and my spirit broken. I didn't know what to do. My sole remaining purpose was just to survive. My mind couldn't handle more than mere survival. I was trapped, suffocating in my heart break, desperately clawing at my own spiritual grave. Clawing for relief, for light, for healing.

One day my heart mended enough that the suffocation began to lessen bit by bit until one day I burst forth from my grave and found myself soaring with the strength of the eagles. A transformation was taking place but it could only occur after the flames of soul searing pain had burned long and hard until finally extinguishing themselves.

With a new found strength I realized I deserved better. A better state of mind, better days, a better life. I accepted that I deserved happiness and that I could create my own happiness by being true to myself. I learned to accept myself, to do things for myself, and to follow my heart. I was only able to learn these lessons though after I felt my pain and survived it. I was stronger and better for it.

Your days may be long and your nights hard. Your tender heart vulnerable in its current state. But you will not remain here. You will burst forth from the flames that presently surround you. You will survive and be better for your heartache. Let yourself feel the pain so that you may process the pain. Take the time you need for self-healing and self-loving. Make this part of your daily ritual for self-care.

This is your time, your life. No one can steal this grand moment in the making from you without your permission. Savor this moment, relish in your self-worth. You are worth it and so much more. You are not your heartache. You are a survivor with a story to tell and a life to create.

Saturday, February 27, 2016

Chronic Fatigue

With a hemoglobin of 9.4 that has likely continued to drop, I'm experiencing chronic fatigue due to iron deficiency anemia. Without enough iron the body is unable to produce enough hemoglobin, which creates red blood cells to carry oxygen throughout the body.

Common symptoms of anemia are
  • weakness
  • fatigue
  • shortness of breath
  • difficulty concentrating
  • very pale appearance
  • grumpy or cranky affect
  • headaches

I'm basically running on an empty tank. It doesn't matter how much I sleep or rest, I'm constantly drained of my energy. Moments of rest or sleep are only temporary fixes that quickly lose their power within minutes. I continue to function with the best of my ability and at times it's all I can do to remain awake. My daily life suffers, my job suffers, and I suffer. And yet, unless you've experienced chronic fatigue it's hard to imagine what it is like for that person.

Even when others are aware of anemia or other conditions causing chronic fatigue, it is hard to fathom the depth of fatigue one experiences. I'm regularly asked if I feel any better than I felt the previous day as though a night's rest will make the difference in my hemoglobin or fatigue. I appreciate the thoughtfulness and care of friends and family but unfortunately a good night's sleep isn't going to do the trick with the chronic fatigue caused by my anemia.

Every day is a struggle. I awake from a restful night's sleep only to feel drained again within 30 minutes, begging for a nap. I must force myself to stay through the workday without leaving early just to sleep. If I sit too long I'm overcome with tiredness and my eyelids become heavy, begging to close for a few moments of rest and hopeful sleep. All I think about is how much I want and need to sleep.

My activities are limited and my social life is virtually non-existent. I just don't have the energy for talking, visiting, or participating in social activities especially if they are later in the day. I want to spend time with friends and family but the mere actions of responding to an email or reading a letter taxes my energy. Every task becomes an "I will do it later" action as I attempt to preserve my energy like a precious liquid that is evaporating before my eyes. Even thinking has become a chore as it becomes more and more difficult to think clearly and to focus on what is being said or done at the moment.

When interacting with those of us with chronic fatigue please understand we aren't going to feel better after getting much needed rest. The fatigue stays with us, it's a constant companion until we're able to resolve the underlying cause of the fatigue. And unfortunately, not all of us will be able to resolve the underlying cause. We apologize if it takes us longer to respond or to socialize, we're simply in survival mode at this point. We're pushing forward the best we can with the least amount of interference possible.

Thursday, February 18, 2016

When Your Doctor Doesn't Believe You

Last year my pediatric GI doctor of over 20 years decided to push me out of the nest and transition me to an adult GI doctor. During my hospitalization last year I faired well with the change in doctors as my new doctor and I started the song and dance of a newly established patient-doctor relationship.

My doctor specializes in short bowel syndrome, which is one of my conditions courtesy of my surgeries related to Familial Polyposis. At my appointment three months ago, my doctor explained that I have the proper sections of my small intestine required for absorption of iron and B12 and therefore do not require these medications. My hair stood on end, I knew differently. I've been taking these medications since my first surgery at age 9. I knew better. However, in a stubborn fit of wanting to prove my self knowledge and gaining my doctors trust in my knowledge, I agreed to forgo my medications for a three month trial.

I was unable to complete the three month trial without my B12. I began to experience exhaustion, sensitivity to light, and numbness in my extremities. I began to worry about the security of my employment under these conditions as well as my daily ability to function. Two weeks prior to the end of the trial period I restarted my daily B12 microlozenges and started to return to my previous state of health. However, I was able to forgo the iron the entire three months.

Lab day came and it was a show down between my doctor and me. Who would be right, who knew me better? He argued my iron and B12 wouldn't drop much in the course of three months from where my levels previously had been.

My B12 was excellent at 793...but I also had restarted my B12 two weeks earlier. With the results skewed, we'll never know how low it had been. I'm okay with that...I was more worried about my iron at this point. 9.4 with a saturation of 2%. Ding Ding We have a winner. Without an ounce of surprise my body held true to its trends. I do require iron and B12 and was ordered to immediately restart my iron.

At my appointment I requested an ultrasound of my thyroid as annual screening is recommended due to the elevated risk of thyroid cancer associated with Familial Polyposis. My doctor found annual screening to be overboard but nevertheless consented. I'm grateful he proceeded to order my thyroid ultrasound for that day as a small solid nodule was found in both lobes of my thyroid. Although most likely benign, it will be important to continue monitoring these nodules as solid nodules have an increased risk of malignancy compared to non-solid nodules.

With my body following my expectations, I'm hopeful that my doctor has gained trust in my self knowledge and understanding of myself.  My body doesn't follow textbook protocols and never has. The sooner my doctors realize and accept this reality the better it is for my care. Perhaps now he will listen to me more with less argument about what my body does.

Sometimes doctor-patient relationships require give and take from both parties as the relationship grows into a partnership for care. Any new doctor-patient relationship may experience a few bumpy courses as both parties are learning the ways of one another and progressing toward a mutual understanding. If you are finding yourself on a bumpy course with your doctor, be open with your doctor about your concerns and work toward a compromise together. Although my doctor doesn't always see eye to eye with me, I'm grateful that he has been cooperative with my medical requests as our relationship becomes cemented.