Overreactions to Chronic Illness

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

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

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

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

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

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

What We Need From You

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

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

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

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

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

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

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

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

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

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

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

When Caregiving is a Vacation

I didn't realize what was happening until it was too late. I didn't recognize that I was staying in a toxic relationship until I just couldn't take it anymore. The end was perfect timing for a family cruise vacation to Hawaii. It was going to be a perfect mental health cleanse. Only it didn't happen. We experienced passport issues at the airport which prevented us from reaching the cruise ship and embarking on a lifelong dream with my parents. I was completely devastated upon this discovery. We had been planning this vacation for over a year. My heart broke as we left the airport to return home. 

I turned to my friends for comfort and as it turned out, one was due to have knee surgery the following week. I offered to be his caregiver for a week. It wasn't the vacation I expected but it turned out to be something we both needed.

I drove to Colorado and arrived the night before his surgery. We enjoyed dinner out before returning to his home to prepare our overnight bags for what originally was to be an inpatient surgery. I've never really been on the caregiving side so this was to be a new experience for me. I've never waited in a hospital waiting room for someone else undergoing surgery or procedures - it's always been me as the hospital patient. We woke up early on surgery day and made our way to the hospital. I stayed with him until they finished prepping him for surgery and anxiously waited in the waiting room for the surgery to be completed. Finally, the surgeon came out to update me on a successful surgery. With relief, I waited for him to be stable enough in recovery for me to join him. Unfortunately, he had a bit more difficulty coming out of anesthesia and some nausea issues from the pain medicine. These complications delayed our reunion in recovery by a couple hours. While waiting, I updated his family members on his condition until we were finally able to return to his home. 

Aspens starting to change color

We were finally released after the inpatient admission changed to outpatient. We returned home and I was officially a caregiver now. I made sure he had food and drink, his medications at the appropriate times, and did all the little things he needed done while recovering. Just like with anyone in pain and recovering from major surgery, there were times he didn't feel well and it showed emotionally and verbally. I shrugged it off - knowing that I had been the same way after my surgeries. For the next few days we remained cooped up in the house except for when I needed to run errands for him. He asked me to stay an extra day and when he was feeling more like himself, we enjoyed an afternoon road trip through the beautiful Colorado mountains, before my departure the following day.

I didn't mind being cooped up in the house. I was just grateful for not only being able to spend time with my friend but also the break away from my life back home. Nor did I mind providing care to my friend, running errands, and getting up multiple times during the night to help him as needed. My time as a caregiver was only a week and I appreciate the difficulties and strain that accompanies caregiving - particularly long term caregiving. I enjoyed my time as a caregiver. It became a blessing in disguise as we both needed my presence there. He needed a caregiver and I needed the time away from my life. 

I left my friend to return home knowing that the worst part of his recovery had passed and my mental health had improved. We were both grateful for the time and care we provided to each other - me as a physical caregiver and him as an emotional caregiver. 

A Look at Caregiving

This is a Guest Post by My Father

My daughter asked me to write about my experiences as a caregiver to herself and her mother. It made me contemplate for a while as I really don't consider myself a caregiver. In my heart, I am just a husband and father doing what those roles routinely require and the fact that my wife and daughter are chronically ill is just another dimension to my husband and father roles.


Cambridge Dictionary defines a caregiver as "someone who provides for the needs of people who are ill or can't provide for their own needs". So, okay, I guess I am a caregiver even though I consider my role more of that as a husband and parent. I don't consider providing health related service to my family any different than changing diapers for my daughter when she was a baby, it's just one of those things you do. My wife is fond of saying "You do what you need to do".


I also provide service for my wife and daughter beyond their illnesses wherever they need support. For example, my wife required a new car battery. I completed the task at hand as she was in need of assistance and she has a weight lifting restriction. I tend to categorize my service as things that need to be provided because I am the best source not because of their chronic illnesses. I complete certain tasks that are beyond their individual skills or abilities, it is more than I expect them to do. They are health related although I didn't consider the health portion in my willingness to complete such tasks.


A lot of routine husband and parent duties are health related but a lot are just duties that aren't necessarily required because of chronic illness and others cross categories. I complete required maintenance of our homes as well as medically required tasks such as my wife's daily eye drops, transportation to medical procedures, or picking up prescriptions. My daughter was on TPN for a while during her high school years and my wife and I were both taught how to provide care for her central line and feedings. It became a priority item in the daily routine and we tried to make it a fun activity and family bonding time rather than a time of an unwelcomed dreaded chore.


When we first realized that my wife would be facing a life time of health issues related to her Familial Polyposis and Type II Diabetes diagnoses there was concern on my part about the amount of daily time this would require of myself. In retrospect, it hasn't been much different as the extra work involved became part of being an actively involved family member. There are always things that need to be accomplished on a daily basis and the health related items fit into normal daily activities quite well. It's all part of being an active family member.


Chronic illness is a day by day process that can bring a lot of frustration, anger, depression, and angst for the patient and the family. Being the regularly healthy one in our family trio means that I need to just be a stable, dependable source for the needs that arise on any given day. It may be a comforting hug, a kind and supportive word, a ride to the ER, or taking out the trash and preparing a meal. Because my health is stable, I can provide such services as a caregiver with little burden or difficulty.

An attitude of welcoming the opportunity to serve rather than resentment of each chore is an essential ingredient in creating a healthy, mutually respectful and loving relationship between caregiver and recipient. Using the time to strengthen bonds, deepen the relationship and draw closer together instead of letting it draw apart and create barriers. Chronic illness is generally no one's fault, it just is; it's something to learn to live with as best as you can regardless of your role. We live day to day, appreciating the good days that are available to us. Being supportive, encouraging, willing and happy to serve, being a support that can be depended upon regardless of the time or day. Instead of considering the extra health related duties as unwanted chores, consider them an opportunity to serve a loved one and perform that service with humility allowing it to be a time of comradeship and an enriching quality time.


Being helpless to improve the situation, feeling guilty as the healthy individual and they aren't, being stretched and stressed can be a daily issue for a caregiver. Utilizing those healthier times to enjoy life together helps to relax and unwind, to reflect and re-group for one's physical and mental well-being is important. Being thankful daily for where you are at this time and place is a good way to quantify the caregiving role and the rewards that are received in performing service to others. Because at the end of the day, as my daughter reminds me with her request for this article: I am a caregiver and I'm honored to have such a role.

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.

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.

When You're Alone

I never truly allowed myself to believe I'd marry. I didn't think I'd find someone who would and could love me as much as I needed with my chronic health issues. I would require caregiving on a frequent basis and likely at some point, I'll require it on a much more regular basis. That is a lot to request from another person, especially from the very beginning of a relationship and a marriage. Could I find someone who would be willing to take on this responsibility from the get go? I did and I thought my life was complete...or so I thought.

From a set of unfortunate circumstances and events, I lost my trust and the life I knew had changed and I couldn't change it back. My complete life was being torn apart and divorce was on the horizon. I have a new life to fulfill on my own now.

Facing a life alone with chronic illness and the possibility for a cancer diagnosis again in my future was a terrifying choice but it was a choice I had to make. I felt completely alone in the world. Questions raced through my mind, filling my heart with fear and anxiety.

What would I do if my health worsens? What would I do if I developed cancer again? What would I do if I couldn't work anymore and support myself? What would I do? What would happen to all my dreams? Can I do it all alone? 

 Making that choice was the hardest part.

Once I made the choice, as difficult as it was, a relief began to set over me. A relief that would grow the more I shared my concerns with my friends and family. A concern that was fettered away by more and more people. My primary support system offered reassurance and oaths to never leave me alone in this world. I would be taken care of when the time came. In addition, I will be purchasing long term care insurance to ensure the financial burden of caregiving is provided for without need from others. I'm doing everything I can to ensure my own well being is cared for - by myself or by caregivers.

I'm learning more than I ever expected during this process. It never ceases to amaze me how much we can never truly prepare ourselves for all that we will encounter in life though we try.

I'm learning to value and fiercely protect my independence. To stand on my own two feet and create the life I want for myself is the greatest accomplishment I'll achieve and I am excited to create a masterpiece. To lose my independence is now my greatest fear. I will fight tooth and nail to maintain and support myself and will gladly do so. My eyes have been opened to the joy that is self sufficiency and the fulfillment that accompanies it. I'm finding that independence is much more than financial independence - it is the emotional and mental survival in the face of destructive forces.

I'm learning to cherish my support system more than ever. I'm gradually becoming accustomed to turning to the people in my support system when I need a shoulder to lean on. I'm discovering that independence isn't not leaning on anyone ever but discerning between periods when I can handle an emotionally tough time on my own and an overwhelming period when I need my support system's aid. I'm letting my people be there for me and am gratefully returning the favor.

No matter what is yet to come, I'm looking forward to tackling each issue with a new set of skills that I continue to hone. And I've realized, we're not alone after all - not as long as we let others in.

Protecting End of Life Wishes

One of the most important things we can do for ourselves is to discover how we want to live. However, this understanding not only includes how we walk this earth but also how we leave this earth. There is great honor in being privileged to walk the journey of life alongside another person and in respecting their journey.

Recently my beloved great uncle passed away. As my parents, myself and others walked alongside him, he shared his life and afterlife wishes with us. He did everything within his earthly power to ensure his wishes were known and established prior to his passing. In spite of his insistence and clarity, there remains individuals determined to undermine the wishes and efforts of my great uncle. His wishes and efforts that allowed him peace of mind for leaving this earth.

The struggle to protect his wishes emphasized the deep need for end of life planning. Such planning is not age dependent; it is life dependent. I began preparing my own end of life planning during my teenager years and regularly update my documents to reflect any changes and maintain currency throughout the years. Our life journeys may end abruptly and our loved ones who walk alongside us may realize and respect our wish but without legal documents stating and supporting our wishes, there is risk for obstacles in spite our life companions best efforts to honor us.

When discussing advanced directive and durable power of attorney forms with clients, I often am told "my family knows what my wishes are". Unfortunately, verbalizing wishes is not always enough to ensure our wishes our honored. Our doctors do not and are not always allowed to honor our previously verbalized wishes without legal documents stating our wishes.

End of life planning has many caveats for exploration and completion. It is more than simply verbalizing our healthcare wishes in broad generalities. It includes establishing someone to make decisions on our behalf if we're unable to do so ourselves - financially, medically, and physically. It includes directing the distribution of assets, establishing care for dependents, determining medical wishes and service preferences upon our death.

The laws and processes surrounding end of life planning and ability to establish ongoing legal matters, such as guardianship for a dependent, vary from state to state. Thus it is essential to thoroughly obtain and understand what is allowed and required within your area of residence.

Leaving our life companions without legal protection to honor our wishes leaves the door open to not only our wishes being dishonored but also unnecessary stress, legal filings, difficult decisions, potential conflict, and costs that all can be abated by completing end of life care.

When we walk alongside another person we are privy to sharing deeper aspects of ourselves while gaining insight and wisdom not learned elsewhere. This is a mutually shared benefit as the walkee and life companion learn and share their needs, wants, fears, and wishes with one another. It is when we let our egos fall to the wayside and instead listen to what another person needs from life that we are allowed to share one of the greatest gifts we have - respect and honor.

For information on medical end of life planning - Advanced Directive, Durable Power of Attorney, and Do Not Resuscitate Orders - visit here here. For information on estate planning, visit here

Let Me Have It

It's been a rough few days for me in my new additional role as caregiver. My husband and I have been presented with  new challenges since his diagnosis of Type 1 Diabetes and I've encountered my own difficulty adapting.

I can't stop myself from thinking that it should have been me. I should have been diagnosed with the diabetes. What's another medical condition for someone who is already chronically ill? I'm much more adapted to handle medical conditions than my husband. I've had more practice, I've been practicing since I was 8. I'm already the patient, he's already the caregiver. He's a great caregiver, I'm a decent patient. Let me have it. It'd be much easier for me to have it, to adapt to it.
I hesitated for days to share these thoughts with my husband. They rambled through my mind, they weren't going to stop. I reluctantly shared these thoughts with my husband, I try to shield him from anything that I think could possibly make him feel burdensome or distract him with additional worry. Why? Because it's the nurturer within me, I don't want to add to his problems. He doesn't need to deal with my problems on top of his own. His unselfishness is beyond belief as he tells me I have enough to deal with, I don't need another medical issue and at least his is more manageable than my own. Perhaps there's a part of me looking for a different end game for myself than that which FAP brings.


Waiting for January 1st to roll around was hard, the date for his insurance to become effective and we would be able to fill his prescriptions at greatly affordable costs compared to the prices without insurance. The affordable prices though would have to come through the mail order pharmacy, which means increased wait time to receive the much needed medications. The hospital's diabetes nurse sent over his prescriptions electronically. Electronically is a wonderfully speedy innovation to quickly obtain a script. My only issue is that without a paper script that I can see, I can review and I can submit myself...well it takes more control away from me. My severe mistrust of providers and my own paranoia of what could go wrong in various scenarios has left me with a strong need for control wherever, whenever I can have it. I've had nurses submit scripts without my review that cost me large amounts of money, without providing the brand name or the correct number pills. A misfortunate experience as I couldn't refuse the medication due to receiving it through mail order rather than local pharmacy. Once it's delivered, it can't be returned with a refund. So you can imagine my mental hand wringing as I patiently waited to confirm the correct script was sent and received by mail order. Let me have the script.


But that's not the only nerve wracking challenge we'd encounter this week. When I called to confirm the insurance had been approved and scripts received, to my horror I was informed that his insurance is still being manually reviewed due to the late enrollment so close to the end of the year. I broke into tears while on the phone. Insurance means everything to me. Without my insurance, how would I have been able to survive my own health issues. I wouldn't be able to afford my medications, my medical care. My personal attachment and dependence upon my insurance left me paralyzed when we discovered my husband's insurance had been cancelled in 2013 and we hadn't received notices. And now, we had to wait even longer for his insurance to be approved. Sure, it would retroactivate to January 1st, but in the meantime I'd be faced with high out of pocket costs if his insulin were to run out before insurance would be approved and mail order insulin would be received.
Waiting is paralyzing. Waiting to find out if my hardship application for the hospital will be approved. Waiting to receive bills that don't have hardship applications available. Waiting to find out what we owe after it's all said and done. I'm scared to spend any money, even for essentials. Everytime I have to make a purchase, I think Will I need this for a medical bill we have yet to receive?


I just had to think of the additional issues that could surface, and they did as if summoned. That night, my husband informed me that his insulin would run out by early Tuesday. Not enough time to receive insulin through the mail, at the more affordable price. The insulin he currently uses would be too costly to continue, even with a future reimbursement for the out of pocket cost.


The local hospital pharmacy had called to send an assistance application for medications earlier in the day, before I knew about the rapidly approaching need for more insulin. But it's Friday night, my help options are running out. This is an urgent matter, it's urgent for my mental sake. I need this resolved and I need it resolved fast. I slept through the night with nightmares about our obstacles, my mind went through every possible scenario regarding insulin and insurance. Each scenario passed without resolution. I'd awake and it was on to the next attempt in my sleep to solve the issues. Every moment awake, I was terrified I'd forget to try outside of my dreams once the morning came. Now I had a mental to do list to maintain amidst the nightmares, the fears, the terror. Six hours this went on. Until I finally broke. I have used poetry as a therapeutic measure after surviving the nightmares of my first year following the first surgery. I hadn't written any poetry in over a year though. My  inspiration tends to come during the night, the time I'm desperately trying to sleep and I mistakenly think the inspiration will remain through the night and following day for me to listen. But it doesn't. My muse tries to teach me either I write then or I won't be able to write. This time I  listened and I wrote.

Mine Alone

My mind wanders, reeling with fears of the worst
Time passing slowly, dauntingly
If only life could jump ahead
Questions answered, solutions found, worries quietened

Strength tested and pushed to new limits
All that was known, turned and changed
Unfamiliar and trying, time is only sparingly vacant
Adapting, learning, struggling unceasing

Fear becomes all consuming whilst the mind wanders
The load weighs heavy to shelter my new charge
Mustnt show my lapses, must remain strong beats the song
Heart fights the battle, distracts the mind, and hides the difficulty

Are these fears shared with my charge, I dare not press
Guilt accompanies such curiosities, how dare thee ask
Shielding from extra burden, enough is there
This is mine to bear, a chance to return all the care

But it wasn't enough, I've been trying to maintain a strong face for my husband. My own fears keeping my heart caged, guarded, stifling my own needs to keep my husband's wellbeing safe. Or so I thought. The dam was failing, my muse had pushed me. I couldn't maintain my silence anymore. I hate waking him during the night, I hate robbing him of his much needed sleep. I had to share all my worries and risk him thinking I viewed his new medical status as a burden. I released all my emotions and wept in his arms. Panic began to set in as my mind took me to vials of insulin rather than flexpens. I can't give a shot. He gave me my B12 shots. Can he give himself a shot in the arm? The strength of a single thought is overwhelmingly powerful. One thought can push one over the edge. My mind began to spiral with that first thought of an insulin vial and  needle. Now a new panic is setting in. I can't breathe. Normally I feel like I'm having a heart attack at this stage. But I'm not. It's different, it's my abdomen not my heart. My stomach feels like it is twisting within me. I grasp my stomach, my husband grasps me to keep me from writhing in bed as I desperately try to stop the twisting. How is this happening, it's not real. Stop! I have to stop my thoughts, I can't do this alone. I can't handle the twisting. My husband distracts me with random stories and my mind begins to ease, the twisting reducing. With my fears quietened, the twisting stopped, my emotions drained, I was finally able to sleep without nightmares.
I was so exhausted by morning, I couldn't stay awake. I slept peacefully for six more hours, my mind exhausted, unable to function without some restful sleep.


By the time I dragged myself from bed, the diabetes nurse returned my emails about our dilemma and advised of over the counter insulin. This can't be a long term solution but it can get us through until the insurance is approved and the mail order insulin can be received. 1 vial will last about a week. If insurance is approved by Monday, I can get his insulin pens by the following week.


The damage was pervasive on my psyche, every moment waiting to receive any insulin tore my mind apart. We went to the local pharmacy. Time stood still as I waited my turn. Would it be available, would they be able to help me, would it be the affordable cost I was quoted by the nurse? Breathe, I reminded myself as I shook in line. It was my turn. The time slowly passed as the local pharmacist reviewed his current insulin to match to the closest over the counter insulin. Please, please just let me have it. I beg you. Finally, the transaction is complete. I grasp the insulin with dear life. I need alcohol swabs, I survey the shelves among the aisles. I can't find it, I can't focus. I stare blankly. Panic is setting in. I hastily walk up and down each aisle, scanning each shelf. It's not working. I need my husband. The tears are coming. I need the swabs. I need to take care of him. I need to see him okay, to see solutions, to see everything come together.


Once home with everything we need, I begin to relax, to think more clearly again. I begin to focus more. I know what I need. I need the insurance to be approved and I need our first mail order to be received. Then we'll be within that routine. I need a routine established. There's safety within a routine. Unpredictability to be lessened. Unpredictability is where you're caught off guard and rattled, where you're pushed and stretched, thrown to what you don't know, with uncertainties at every turn.


I notice the symptoms. The stress, the worry is weighing too much. I'm slipping. It's so easy to slip into that dark well of despair, of depression. It's been home for so many years. It's familiar, I know it. It holds me like its own. I know what I need to do to break free of its grasp. I know all the options to fight it. I've used them all, I advocate for them all. Medication, private counseling, support groups, informal peer support. But I'm also stubborn. I'm the last to agree to start using these methods in spite of my husband's regular urging. I try it out on my own for weeks first, leaning only on my husband for support. I don't want to become dependent on any of these methods again. I spent years mentally surviving only because of these various methods. I want to survive on my own. If I can't, if I must depend then I will but not until I prove to myself I can't climb out on my own. I struggle, I fight, I push.


I think back on my own health struggles. The times I was left to fight for my life for the second prolonged period. Was it really a struggle? Was it this hard on me as the struggle to see my husband safe is now?


The memories blur over time. I remember two feelings during that time. Peace and terror. Peace came to me while I was near death. I'll never forget the serenity of being in death's arms. There is no earthly peace like that of death. Nothing as comforting. Sweet, sweet death.
And then I remember the terror. The terror brought on each time I endured, I survived a medical test or procedure. Being ill doesn't seem so bad. It was the pain that the tests and procedures inflicted that was so hard, that pushed me closer to death's arms.


I question my memories, why is the stress so much more now. Why do I almost recall my fight for my life as easy, as peaceful except for the pain. Stress. That's why. My only responsibilities during my own fights were to live and to complete my studies. I didn't have to work to live, my parents had me, they caught me financially. Now my parents would do what they could to help us, but they wouldn't be able to support us financially. I have to work, he has to work. We have to financially survive too, not just physically. There's more at stake than just physical life, it's our livelihood.


Isn't it interesting how the stage of life we are in at the time affects what we experience, how we cope, what we focus on, what our needs are. So much is affected by this, it shapes us, it changes us. How lucky I was to struggle during an earlier part in my life, when I could easily be caught by my parents. When my livelihood wasn't mine to stress about. When I could just focus on surviving.

When the Roles Reverse

This week has been a whirlwind of scares and changes that I wasn't prepared to encounter.

My husband has been pretty healthy his whole adult life and hasn't seen a doctor for anything in over 20 years. Complete opposite of us FAPers. Everything changed this week in an instant, starting with a phone call early Tuesday morning.

After a couple months of excessive urination and thirst resulting in a long battle with severe leg cramps, he finally agreed to get lab work on Monday afternoon. Tuesday morning my doctor called us and informed us that his blood sugar was almost 1000 and he needed to go to the ER. We found out that day that he was Type 1 Diabetic and he had been without insurance for the entire year yet we had never received any cancellation notices. With insulin dependent diabetes, he would be required to find a new job within the next few months.

We had no doctor or insurance for him, about to be without a job, and were accruing plenty of medical bills for this serious new diagnosis. We were in a nightmare situation and the light at the end of the tunnel was growing dimmer at every turn. I was terrified of so many things that were happening and could happen yet I was the caregiver now for the first time and I needed to remain strong and calm for him. He didn't need the extra stress of worrying about his wife going to pieces on him while he was at risk of a diabetic coma or death. What a different role, from patient to caregiver. Everything was on me and I didn't know what to do.

Unexpectedly our luck began to change. My work allowed me to enroll him on my insurance for his coverage to start January 1st and the hospital gave me a large discount for making a relatively small payment up front. His employer was making accommodations to keep him employed. Now I just needed for him to become stable and for me to find a way through the next month until he had insurance and a doctor. By early afternoon, I was no longer fearful, I was strong and determined. And on an adrenaline rush. Nothing and no one was going to stand in my way. I was energized but that can last only so long when you're splitting yourself between various responsibilities. I spent the day and evening tending to him, tackling our issues, returning to work, and taking care of household needs.
By Wednesday morning, I no longer had the energy or the adrenaline that sustained me during the chaos of that first day. I could barely function mentally but I had a lot to do at work and it hurt to be away from him. I knew that I had to take better care of myself or I'd need a caregiver myself if I weren't more careful. I turned my focus to the evening, I had to get more sleep before rising early again to visit and help my husband with his morning routine. I needed to prepare for a new battle that day. How was I going to be able to afford his insulin and supplies before his insurance started and how was I going to have enough supplies to last him until we were able to obtain an appointment with a doctor?

I recalled all the time my parents and family members took care of me, of the time my mother and I were both hospitalized at the same time. How did my dad do it!? He worked, visited us, and took care of the house and land. I now knew how exhausted he must have been. How exhausted they all must have been.
The worry and the need for a plan and a safety plan were starting to become overwhelming as I tried to resolve every issue the best I could. I worried about his health and his mental health, the adjustment required to transition from caregiver to a  new patient is a lot for an individual as well. How was he doing, what did I need to do to help him adjust and to keep him motivated for his health as well?
My mind thought back to all of those who have helped care for me, they must have felt as helpless and overwhelmed as I did. As a patient, we feel so sick at times that we can't spend our energy on the same things as our caregivers. Our bodies need that energy for healing and survival. We barely have a chance to process our health changes and situation before we're thrown to the wolves of the illness and what is required for self care. And so our caregivers are left with all the worry and to also deal with our own adjustment issues yet we barely notice. So often our caregivers only show us their battle faces, not their exhausted, terrified, overwhelmed with emotion faces.

The universe smiled upon us on the last day. We received education from a diabetes nurse who helped us navigate what we needed and helped us obtain that much needed doctor appointment. She has remained with us as well as one of his ICU nurses. They're only a phone call or email away if more guidance is needed. I no longer feel alone in navigating the terrain of diabetes. We have a long journey; but we are well supported and well guided.

In the matter of 3 days, our world turned upside down and resurfaced different, but upright. At the end of it all, I've been left with feelings of intense gratitude toward so many people and for the favorable outcomes we found when we weren't entitled to such favorable outcomes. Not all situations are so lucky. We were fortunate to obtain resolution so quickly for so many issues. And I can't help but think, if it weren't for my own health issues that have shaped myself and my life in so many facets...I wouldn't have the same fortitude as I needed to complete my role in our crisis and maintain my new role as caregiver.

The struggle between patient and caregiver roles are real and they deserve our attention. We must draw on our strengths and our support systems to help each other cope with the changes in roles. Together, patient and caregiver can do a lot but not as much if separate.
Show your caregiver appreciation and allow them their much needed time without our demands. Communicate with each other and discuss what each one needs. This is a partnership and it deserves both people.