How do you manage endometriosis fatigue?
Finding out I have the CDH1 Gene Mutation
In December, I finally gotten a GYN to listen to my desire for a hysterectomy. But before I can move forward to that, I was recommended to get genetic testing done. I have never been offered that before in all the years I've mentioned my quite extensive family history of cancers.
It took a while, but in July I got my results. I had the rare CDH1 Gene Mutation. This mutation increases my risk of Hereditary Diffuse Gastric Cancer to 85% by the age of 80 and my Lobular Breast Cancer risk to 30-35%. There is a slight risk increase of Ovarian Cancer as well. That was a lot to take in, but I wasn't surprised. I am already chronically ill managing multiple conditions and that was a huge life change as is. However, this would be a whole new lifestyle change ahead on top of my already busy job of dealing with my already poor health.
These last couple months has been gathering information on surveillance and preventative surgeries. It's been decided that I will get a Total Gastrectomy (complete removal of the stomach) relatively soon, HOPEFULLY get my hysterectomy after I recover from that, and then do surveillance on the breast care side of things. Not only that, but I had to tell my (toxic) father whom I live with all this news since I completely rely on him for support.
Here's to hoping that this new journey improves my quality of life in both the short and long term. And here's to trying to document my journey of managing new health challenges on top of already being chronically ill.#chd1 #HereditaryDiffuseGastricCancer #GeneticTesting
What is the toughest conversation you’ve ever had about infertility?
I don’t know how to tell my story but I guess I’ll just start somewhere and describe each piece of a difficult situation that is happening to me and I have no idea how to process
This week I found out my sister has ovarian cancer. It also happens that my sister made the choice to have no contact with me for the last 7 years. You need to know that I’m not some kind of monster who did anything super abusive or horrible to her for her to make this extreme decision to deny my existence. I’m just an average person, and the last time we had a real interaction was at my bridal shower 7 years ago where she was nagging me and I was stressed and snapped at her, nothing special, just siblings fighting about arriving on time for a brunch. You also need to know my sister has lived her life with undiagnosed & untreated mental health issues, issues large enough to negatively impact her life in big ways, she became anti-social, is unable to keep a steady job and overall has affected her ability to create the life she wanted (I’m not perfect either but I’ve been in therapy for years and gotten medical treatment). So back to this week, I learned from my mom about the diagnosis, and I researched the statistics around ovarian cancer and it’s not great is what I’m hearing. I decided to send supportive messages to my sister on telegram and she immediately blocked me. Mind you I have not attempted to reach out to her for years because she made it clear in first year she doesn’t want to talk me, never replied to my emails and never tried to contact me, so I respected her boundaries but also because I’m a human being and I do not deserve this degree of punishment. For most of our lives I was incredibly supportive of her, I paid her tuition, I gifted her trips to Europe and California, I invited her to live in my condo and only pay utilities to help build her build confidence and become more independent, and yet because of an argument she has chosen to alienate me completely. Yet considering the gravity of the situation I reached out to her and her response was to block me. So I am here today knowing my estranged sister has a serious illness that affects her mortality and I know she will go through this experience mostly alone, except for my parents and also knowing I will only be a distant witness to a very serious thing happening to my only sibling. I cannot fathom how she could hold on to a grudge towards me for so many years for an incident where I was irritated and angry with her on a day that was stressful for me, to the degree where even through a global pandemic and in the case of a life altering illness she refuses to recognize my humanity.
I have no idea how to feel, every hour I feel something different. I feel shocked, sad, angry, but then I feel indifferent because she chose to severe our relationship not me. I feel I should do everything I can and pay for her to get best medical therapy but also that I shouldn’t for someone who doesn’t even care about me.
Life’s Not Nice At Times
I lost all my friends bar one when I became psychotic and manic in 2007 and again in 2008. It was a sudden thing that happened in 2007 and the trauma of it caused the onset of my bipolar and the unblocking of memories from my early childhood. My CPN said I disassociated with it all. Although I had some memories that have always been with me. Although these memories were so weird and unfathomable. Once I had the awful reminders, I finally understood what all the other memories meant!
Last year my last remaining friend took offence to me calling her out for not showing up without any kind of contact to let me know! She had no good reason . Even if she did have a reason she could of just kept me in the loop! I was so surprised she has ‘unfriended’ me, so’s to speak. I can’t even call her. I’m blocked! Perhaps it was just an excuse. That’s what she really wanted! We’ve been friends for over 35 years! I miss her!
On the 29th December 2021 my bf ended our 11+ year relationship. He said he loved me on Christmas Day and then a few days later he dumped me … by text message! We weren’t arguing. Just had a small disagreement. Totally minor. He has said it wasn’t that! We had always got on so well! It still doesn’t make sense!
So now I’m going it alone! Not quite alone as I have my son. He’s also my carer as I have several physical disabilities and disorders.
I do have a lot of online friends from the art groups I’m in. Just would like to meet up with them. I would like a friend in the real world suppose.
This year I’ve had and I’m still having several health scares. First my right forearm has rather large lumps .. going the full length of my forearm on one of the lumps. I also have oral problems and have had to have biopsies and scans done. I’m now being checked for ovarian cancer. To top it off nicely, my right shoulder has become so painful I can’t function. I’m being investigated to see what the problem is. Because my right shoulder is in such a state I’m unable to draw for any period of time. It’s just too painful.
I feel like I’m being robbed of everything that gives me joy. I feel so miserable! #colouredpencilartist #wildlifeartist #Disabled #Bipolar #sexualabusesurviver #depressed #Mania #Psychosis #MentalHealth #GiantCellArteritis #AutoimmuneDisease #Osteoporosis #spondylitis #Fibromyalgia #PTSD #Flashbacks #AterialvenousMalformation
What’s a warning sign you’re about to experience an endo flare?