Physical Health:
Last week, we had my yearly check-up with my women’s health practitioner. Since the news was not good last year concerning the probable autoimmune condition related to the skin in my genital area, I had my husband attend the appointment with me this year for extra support. I am glad that I did, because this appointment was also very difficult. We were basically told that our physical intimacy would probably forever be impacted due to my health situation. My body is showing signs of permanent damage due to the physical stressors it has endured for many years. Our physical intimacy has been impacted in various ways for many years due to my health situation, but this was a more permanent discussion. As is to be expected, this was difficult news to process.
We also mailed in my hair sample for the hair sample test that my new main practitioner is having me complete again as an update to my previous results 2 years ago. My husband accidentally cut larger chunks of hair from my scalp than the instructions indicated (Whoopsie-Doodle 🙃), so I have a few spots that might show sprouts of hair sticking up soon. At least that test is off of our plate for now.
In addition, my new main practitioner reviewed my history and previous test results and is having me update quite a few blood tests as well. Those blood tests will be completed this week.
I also have my next round of two IV iron infusions this week and next week.
And, finally, I have my semi-annual (virtual) appointment with my “PCP” (what a joke) this week so that she will continue to order IV iron infusions as needed, and so those will hopefully continue to be covered by insurance.
Emotional Health:
The finality of the words coming out of the mouth of my women’s health practitioner were shocking. I immediately started sobbing due to the combination of shock, sadness, and disappointment. My husband quickly jumped up out of his chair to hug and comfort me. Something that is rarely discussed in relation to complex chronic health situations is the impact on physical intimacy. I am fortunate that my husband and I built the foundation of our relationship on all forms of intimacy instead of solely on physical intimacy. And, we have worked hard throughout our relationship to maintain intimacy in many different areas of our life.
However, that doesn’t remove the emotional pain and heartbreak that is experienced when the life you once lived and loved is altered permanently. This is especially true since I have been working my ass off for 20+ years to try to get to the root cause of all of my health issues before there was permanent damage to my physical body. Even though permanent changes to our physical intimacy are not the end of the world compared to confronting the possibility of mortality on a regular basis, there is still a grieving process that happens in these types of life-altering scenarios. We are in the process of grieving in the healthiest possible ways.
I have been wrestling with a lot of thoughts and feelings, and some of them make more sense than others. For example, I love my husband and want nothing more than for our marriage to continue. He is my very best friend. However, I feel selfish wanting to stay in this marriage with him. There are many, many days when it feels like the unselfish thing to do would be to let him go (separate) and allow him to move on with his life without me. So, I asked him last week, once again, if he was sure that he still wanted to stay in this marriage. Here is how the conversation went:
Me: There is nothing about the last 20+ years that has been easy. And, this week has been another dose of hard. Are you sure you want to continue in this marriage?
Husband: Yes. There is not a doubt in my mind that I want to continue in this marriage. You are my person. A very smart woman taught me over the last 20+ years that two things can be true at once, and this is one of those Both/And situations. This entire health situation is really hard, AND there is no other place I would rather be than living life right by your side. Do you happen to know that very smart woman who taught me the Both/And concept? 😉
Me: I might know her. 🤣❤️
This conversation might not make sense for couples who have not had to live alongside a complex chronic illness, but it is a conversation had by quite a few couples who have endured health challenges for many years. I am aware that I have been there for my husband throughout his life’s ups and downs, and I don’t discredit what I bring to the table as a partner. My health situation just seems like too much sometimes, and my love for my husband causes me to make up stories in my head about what would be best for him (albeit without sometimes even asking him what is best for him 🤣).
What I have always known about my husband, and what continues to be true to this day, is that he is someone who won’t just say “I love you.” He will live “I love you” to the best of his ability every day of his life. In fact, he lives “I love you” better than anyone else I know, and it is not even close.
Something else became obvious to me over the last week that explains a lot about some of the misconceptions people have about me and my health situation. I am someone who bounces back from difficult news fairly quickly. Due to the amount of disappointment I have experienced related to medical care over the last 20+ years, I have developed a wide window of tolerance for both uncertainty and difficult news. For example, in the middle of grieving this last week, I would also regularly laugh and have joyful moments. In fact, unless I informed people that my husband and I received this news, they couldn’t even tell anything was different. I was literally having mostly good days in between the moments when I was grieving. I have been told by various people that I do an excellent job of riding the waves of stress and returning to balance with relative ease, but this week gave me the opportunity to see it in myself.
What helps me the most is that I know I am doing everything in my power to be well. If there is nothing more that can be done in a particular moment, I might as well let the emotions and feelings move through me and then go back to finding as much joy as possible. Dwelling on something and/or worrying about it doesn’t change anything. In addition, I am usually able to remind myself that I have survived a lot already, and that helps me return to balance on the most difficult days.
(credit: @case.kenny on IG)
Because I have a wide window of tolerance for stress, I don’t think most people really understand the severity of my situation. I do a really great job of living alongside this complex chronic illness, so not very many people have a good handle on how bad it really is. My situation is frequently downplayed by people who are not active participants in my daily life. The only person who truly understands is my husband, and he tries his best to live alongside the constant fear of losing me at such a young age.
Our amazing therapist regularly comments on my ability to ride the waves and return to balance. Apparently, most patients in situations like mine do not handle it like I do. Therefore, not only are there frequent misconceptions about me in my personal life by people who are not active participants in our daily life, there are also frequent misconceptions about me when I first start seeing a new medical practitioner. They have usually never seen someone like me who can regulate their nervous system in this way, so before they even get to know me, they make assumptions about me. Then, once they get to know me and my history, they are blown away by my ability to ride the waves. If only they would learn more about me and my situation before they formed their opinions, it would make things so much easier.
It is probably worth noting that even though I am currently able to ride the waves and return to balance with relative ease, I have a limit just like everyone else. I won’t always be able to return to balance with relative ease. I am having more tests completed this week, and I already know that good news would be really helpful right now in order to continue to ride the waves.
The good news for today is this: Regardless of everything that is happening right now, I continue to receive whispers from the Universe. And, for that, I am grateful.
(credit: @case.kenny on IG)
My hope for this week is that everything goes well and there are only good surprises. If you have a moment, please pray for us and/or send positive energy our way. ❤️
Brutal. Permanent damage to my physical body that may forever impact our physical intimacy. Another busy week of appointments that I need to fit in around my work schedule.
Beautiful. A marriage built on a strong foundation of all types of intimacy. A husband who lives “I love you” each and every day. Riding the waves of stress and returning to balance with relative ease. Receiving whispers from the Universe. Staying hopeful.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
This Brutiful Life 