Tuesday, August 20, 2019
Why I'm Grateful I Didn't Become a Mother
For the majority of my life I planned on having a child and I was going to do what was necessary to have a child and end the cycle of Familial Adenomatous Polyposis (FAP) in my family with me so that I wouldn't pass it on to my child. I had a surrogate ready and willing and we were saving for the IVF that would be necessary as well as the egg selection to prohibit utilizing my eggs that had the FAP gene. However, I never felt quite ready to take the plunge and start the IVF process. The timing seemed off but the longer I procrastinated, the older I, my husband and my surrogate became nearing the age that pregnancy may not be recommended. I also was heavily concerned with the risk of pregnancy complications to my surrogate and if necessary, how the restrictive abortion laws of our state would affect her if she required to terminate the pregnancy in order to protect her health and life. I couldn't bear the thought of being the cause of harm or death to her when she was doing me a favor by agreeing to be my surrogate. After a lot of deliberation, I came to the conclusion that it would be better that we forego attempting to have a child and so I said goodbye to that dream. It was a heart wrenching decision that took a long time to fully process and accept. It was a difficult decision but I knew in my heart, it was the right decision for me.
And then a year later, my life changed and I was divorced. I not only was grieving the loss of my marriage but I was also re-grieving the loss of my dream to have a child. Even though I had decided to forego becoming a mother, with the divorce I was forced to fully let go of that dream unless something once again drastically changed in my life. If I were to become a mother, I would either have to make the conscious decision to attempt IVF with a donor or another life partner, adopt a child, or become attached to a life partner who already had a child.
In spite of all my dreams to become a mother, I am grateful that I am not a mother though. Deciding to become a single mother would not be an easy task and not one that I could easily financially afford either. It would be a difficult life on my own as a single mother, financially and physically, and I still would face the struggles of living with chronic illness and caring for a child as before but now I would be on my own doing so. Finding a life partner with a child already is a real possibility as it is hard to find someone around my age who doesn't have a child or children.
I've also become accustomed to my life as it is and as much as I previously wanted a child, I don't feel as though I'm missing out. I'm still able to enjoy the company of the children who are in my life and I'm able to do so without the stress and financial burden of raising a child. It is a well working system actually. I'm able to engage these children in fun and exciting activities when I'm able to do so and if I'm sick that day, I simply need to tell their parents so. I've also been blessed with these children being understanding and supportive when I am feeling ill.
The decision to not have a child is not necessarily an easy decision and it takes time to process. It was a long road to travel but ultimately I am content with my decisions and where my life is now. It has been helpful in my acceptance to acknowledge the realities of the struggles I would be presented with in my situation as well as the good things that make up my life. I've discovered it is possible to live happily childless even though that was not my initial plan. I have made peace with my life decisions and it has helped me to appreciate my life just how it is.
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.
Monday, August 5, 2019
A Tribute to My Ex Husband
I don't regret my decision to divorce my now ex husband even though I wish our marriage had worked. But sometimes there is pain we can't overcome or it's not in our best interest to remain in a particular relationship. That was sadly the case for my marriage but I remain grateful for him. Too often we focus on our heartache and pain, forgetting what was good and what remains positive in spite of it all. Today I want to give credit where credit is due.
He is a kind man with an astounding heart. He is always there for a friend or family member in need. He works hard and cares about those around him. He was everything I was looking for in a partner. He did his best to always give me what I wanted or needed in our relationship. He listened to me and supported me, he provided me care when I was ill.
My ex husband and I are not friends, per say. I don't know what we are exactly. But I do know that if I need him, he's always there for me - from our 1st date to years after our divorce. We made a promise to each other when we separated that we would remain there for one another and he has kept his promise thus far.
Us with Zia and Ruhle |
He does more than just help me with the dogs too. If I need help with a home project, he will take care of it for me if I ask him. He works long hours but if I need him, he's there - whatever it may be, even if I just need to talk. He's always been like that.
I always say it's a shame what happened to our marriage. He was loyal and loved me deeply. He gave me everything I wanted and he was everything I wanted in a life partner. We were a perfect match. Like any couple, we both did things to hurt each other that we regret but we loved each other with all our hearts. Unfortunately, he made some life decisions that broke my trust and I couldn't recover from it. But I will always give him credit for all the good that he embodies. I have forgiven him and am not bitter toward him. He remains near perfect in my eyes. He is a good person and in spite of our divorce, I can't imagine my life without him in it in one way or another. We may never be friends again but we'll always be there for one another.
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.
Monday, July 22, 2019
Reviewing FAP Monitoring and Testing Results
Currently my GI doctor completes upper and lower scopes of my GI tract to monitor my Familial Adenomatous Polyposis (FAP) every two years. In 2015, I started developing duodenal polyps that were precancerous adenoma polyps caused by my FAP and fundic gland polyps in my stomach. I have an intestinal ulcer above my reversal connection site in my small intestine as well that requires monitoring.
Duodenal polyps are a particular concern for those with FAP as FAP polyps often continue to reoccur in spite of removal. I was ecstatic to hear that there were no duodenal polyps present during this scope. These polyps are precancerous and will turn cancerous eventually. The duodenum area for polyp development is concerning due to the risk of requiring a Whipple procedure. No one wants this high risk surgery that results in the removal of the head of the pancreas, the duodenum, gall bladder and the bile duct. My mother required this surgery and it was a very long, difficult recovery for her that nearly cost her life in return and led to the development of diabetes. Additionally, abdominal surgery such as the Whipple, increases the risk of developing a Desmoid Tumor - which FAP patients are already at a higher risk for Desmoids.
I have had several sessile, fundic gland polyps for a few years now. There are several and they are small and in the upper portion of the stomach and are usually benign. However, according to Mayo Clinic, when fundic gland polyps are associated with FAP, they can become cancerous. Sessile polyps are flat, broad based and also considered to be precancerous. Stomach polyps can also cause symptoms of nausea, tenderness, anemia, and blood in stools. These polyps may very well play a contributing factor to my chronic nausea that I started experiencing in 2015. The use of Proton Pump Inhibitors to reduce stomach acid also increases the risk of developing these polyps. I require Prilosec to help reduce my acid reflux and it also seems to help my intestinal ulcer.
I asked my GI specialist if I should change to a different stomach acid controlling medication to further help heal my intestinal ulcer. He advised me that medications, such as Prilosec, focus primarily on the stomach acid and don't really treat intestinal ulcers. My ulcers decreased from 4 to 1 since taking Prilosec yet I'm unable to fully heal my remaining ulcer. This is particularly a concern for me as my ulcer created a hole in my intestine when I was in high school. I went several years later without taking any medication for the stomach acid and without the medicine my one stable ulcer developed into 4 bleeding ulcers. I have to be mindful of my ulcer as it often bleeds to this day, especially when I take Lonox/Lomotil to slow my bowel or if I do not use the restroom for long periods of time. My ulcer actually bleeds less if I use the restroom frequently. My doctor said for an intestinal ulcer that is near the anus, then a suppository or an enema can be used to help treat the ulcer. I am not able to tolerate anything inserted into my anus and therefore this was not an option I could entertain. After my scope was completed, my doctor advised that these would not be a viable option for me regardless as the ulcer is higher in my intestine, above my connection site than he previously realized and it is too high up to be able to be treated with such methods.
Overall my scope results were positive - no duodenal polyps this time, my fundic gland polyps that were biopsied were benign, and my ulcer was stable and also tested negative for Crohn's Disease and cancer.
I go back for a regular check up in 6 months and I will continue my efforts to maintain my health as I await my next set of scopes.
Labels:
Medical 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.
Monday, July 8, 2019
Birthday Struggles
My birthday is a bit of an emotional roller coaster at times for me and has become increasingly difficult for me to enjoy as the years pass by. I shared earlier this year about how my birthday and New Year's start a period of mourning as my fears about the future are intensified. Over time, birthdays have changed from a triumph of survival to a period of mourning.
Often individuals enjoy taking off from work on their birthdays as a way to celebrate. I prefer to work on my birthday so that I can be surrounded by coworkers and celebrate with them versus being home alone on my birthday. This got me thinking and I realized that even as a child, I felt that my birthday wasn't anything special - it was insignificant - which led me to feel that I too was insignificant. I didn't deserve anything significant to occur on my birthday and it was significant when someone remembered to wish me a happy birthday. As the mourning of my birthday years worsens with time, I particularly do not want to be home alone allowing myself to wallow in my mourning.
Since I entered a brief period of depression surrounding my birthday last year, I expected the same to occur this year. I was pleasantly surprised with myself when this didn't occur - at least to the depth of last year's birthday. I struggled in the morning with feelings of sadness and even welled up with tears at times but I was able to fight off the tears and turn the day around by the afternoon. I pushed away my fears about the uncertainty of the future and instead I enjoyed my the birthday lunch my coworkers provided me and appreciated all the birthday wishes from loved ones and even strangers online. I thought I would be in an emotionally fragile state once I got home and asked a friend to spend some time with me. But once again, I surprised myself and was comfortable in my alone time.
Although the sadness I tend to experience around my birthday lessened significantly, I also didn't experience a surge of triumphant feelings about survival either. And that's okay. I was content with a lessening in sadness allowing me to more greatly enjoy sharing my birthday with my loved ones.
Whatever holidays serve has painful reminders to you, may the next be easier. Sometimes our fears and mourning never fully dissipate but they can lessen and we can still enjoy the good times, particularly with others. It can help to utilize coping tools to reframe our negative thoughts to allow us a reprieve.
Here's to an even better birthday next year.
Labels:
Birthday,
Mental Health
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, June 26, 2019
5 Steps to Take When Coping with Grief and Chronic Illness
There are good days and there are bad days when dealing with a chronic illness. The fact is that you just don't know what will happen tomorrow, or even an hour from now. But, having a chronic illness or losing a friend to one does not mean there is nothing you can do to manage the pain and grief. "Manage" is the key word. How do you manage your grief?
What is Grief?
Grief is a natural emotional response to loss, brought on by loss. Small or significant, it is okay to grieve and for most people the more significant the loss the more intense your grief. How you grieve and how long is up to who you are. Factors such as your personality, life experiences, faith and your coping mechanisms all play a role.
How to Cope with Grief
Coping with grief can be difficult, so here are five first steps to take when you have a chronic illness or are dealing with the loss of a friend who you've lost from a chronic illness.
- Express your Feelings
If you don't express your feelings, you are bottling those feelings in and possibly doing yourself an injustice. This doesn't mean you need to cry on the shoulder of a stranger when sad or yell at your colleagues when angry, but, it is okay to tell a friend, family member, or coworker ho you are feeling, that you need the comfort of someone near you, or to be left alone for some time.
- Take Care of Your Health
Turning away from your health could mean no longer exercising, eating poorly, or losing routine in your life. Both physical and mental health can be at risk during your grieving process, so taking time to focus on your health is important. One way to start is by creating a nighttime routine such as a bath or shower, prepping your clothes for the next day and reading a book to fall asleep. Adding small things such as essential oils, calming music or even adding breathing and meditation to your routine are great ways to relax your body and mind.
- Understand the Inevitability of Bad Days
Bad days are going to happen. You may wake from a restless night, be plagued with difficult thoughts, or you're just having a bad day. All of these are legitimate, and when grieving you will inevitably have difficult days. Understanding that these days will occur will not make your grief fall to the wayside, but you will know that tomorrow may be better.
- Don't Forget - Moving on Doesn't Mean You Must Forget
A common myth about grief is that if you try to move on you must forget. If you lost a friend, it means you should put thoughts of that friend aside. If you are coping with a chronic illness this might mean you should forget the good times before your illness. This simply is not true. There is room in us to both manage the grief as well as remember our loss.
- Seek out Support
Support groups, therapy and confiding in someone you trust are not easy to do for many people. When you grieve these can be even more difficult. However, knowing that support is available to you is important. Understanding that you are not the only one (often the case when grieving) can be encouraging and help you cope with your emotions and pain.
Grief will affect everyone at some point in their life, but when dealing with a chronic disease, yours or that of a loved one, your grief can take longer to manage. However, it is important to know that there are coping solutions to help you keep yourself moving forward.
Elise is a freelance writer located in North Carolina that regularly covers health and wellness topics for Mattress Advisor. She is especially passionate about understanding and researching mental health and loves to educate others on the topic through her writing.
Labels:
Grief,
Guest Post
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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