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.
Labels:
Caregivers,
Health,
Relationships,
Support
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
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.
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.
Labels:
Mental Health,
Survival
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
Wednesday, October 5, 2016
Fresh Assist: A Review
Disclaimer: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
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 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.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
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.
Labels:
Mental Health,
Support
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
Tuesday, August 30, 2016
Remember the Worst
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.
Labels:
Health,
Pain,
Procedures
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
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