I didn’t want to do much ranting or complaining as of late. Because news. Yet, I have this blog and continue to share because I hope I can educate ONE PERSON about Cowden Syndrome who might have never heard of it before me. (Like the technician who did my mammo who’d worked in healthcare 20+ years who’d never heard of a PTEN mutation.)
One of the signs or symptoms of CS is a large head, macrocephaly. (NOTE: I can’t tell you how many times Post-diagnosis I’ve asked my Mom, “No one said I had a big head? No one made mention? Anyone? Nothing?”)
I can connect the dots in my past NOW, of course, never finding a hat that fit right, etc etc. Never thinking it was a sign of THIS!
Moving on: I have to now use a sleep mask. I’m not mad about it, I really actually love it now. However, what I AM kinda made about is this Disney sleep mask doesn’t fit! I’ve tried it a few nights already and my temples/forehead pulse and I can’t sleep. This wasn’t a KID sleep mask! It was marketed/packaged as ADULT, meaning one size should fit ALL.
I realized this week – I don’t want to have a brain scan right now. I had one in December. I don’t want another one next month.
Also, I have pondered about a lot of things lately:
- Why are the MRI’s so frequent? (About every 6 months)
- Are they this frequent to help ease my anxiety?
- Does the doctor want them this often?
- There hasn’t been “significant” growth since 2011. What does that mean?
- Does the neurosurgeon want to scan me so often because we just don’t know crap about gangliocytoma?
- Why don’t I want to have this next scan?
- Will there be (of course not) any significant change if I push the scan off 6 months?
- Should I appeal the disability denial?
- Should I refile?
- Should I file bankruptcy?
- Why can’t I catch a break?
When can I get some sleeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep?
Does anyone else suffer from sleep anxiety? I don’t know if it’s from the brain tumors,
hysterectomy menopause, anxiety about my dire finances, depression, being overweight…or if it’s a hot mess from all that and more.
I exercise. I try to meditate (but let’s face it) I have no idea how to do it or what I’m even doing. I try to eat a salad a day, but I know I struggle to get enough protein because I don’t know what to eat (I don’t eat red meat anymore).
I have some medications and some natural things I take each night. But, I usually feel horribly drunk still, the next morning.
Do you have any tips you can offer to for my nighttime routine? Do you do anything specific to help you sleep?
I know it’s good to be busy. But I have been so busy these last few weeks that I feel like I am forgetting something. That is the oddest feeling. I haven’t had any medical appointments for a while and instead of relishing the quiet, I feel anxious. I feel like I am missing something and that makes me uneasy. This sucks. My life shouldn’t be this way. Cowden Syndrome and Lhermitte-duclos Disease are here to stay, and in fact, have been with me since Day 1. Yet since my diagnosis I feel this intense amount of pressure. Mental, emotional, call it what you will. I feel so much weight on my shoulders to manage everything, because it’s my life we are talking about here. If I forget to do something, who knows what it could lead to?
I know stress doesn’t help anything. I try to relax, I try to get good sleep. I volunteer to pay it forward. I just hate this feeling that if I “don’t do it right”, I will get sick again. You know, I think that’s it. I think I just had a mini-breakthrough. All this pressure I feel, that I am putting on myself, managing these Rare Diseases that must be done “right”, is giving me a false sense of security? That if I control everything (which I know I cannot) I can keep myself from getting sick again. I don’t know if that makes sense or not. The brain surgeries were just so terrible and the recovery was so painful, I’m terrified that I will have to experience that again.
This is where I must Let Go and Let God. I am trying. I don’t do it well, and I don’t do it perfectly. But, each day I try.
It sure would be nice if this brain tumor and rare disease stuff could be only for a season in my life. But, I know that isn’t the case and the sooner that sinks in, the better off I will be. Time. URG. It’s always time, isn’t it?
I spent most of today sleeping. That concerns me greatly because I’m not sure if it is because I am depressed or because of brain fatigue. I go and go a lot during the week (especially when I am able to work), so when the weekend rolls around I usually need to decompress and recharge my batteries. I don’t know how to tell the difference or if I need to be concerned.
Such is this life of mine now.