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.

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.

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.

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.

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.