I have thought about this for the last little while. I can’t begin to imagine how amazing this would feel! Everything (almost) is shut down, so why can’t my PTEN mutation be as well? (Insert sarcasm)…
I had to go outside today. Besides wanting the basics of some much needed Vitamin D, I had to see a doctor for my clinical breast exam. You might be wondering why I just don’t do it myself? I will leave that to another post. 🙂 This is how it’s been done since 2011 and it works for me. Every 3 months something is happening with my l a d i e s. Either a mammogram, MRI, or clinical breast exam. And, on the rare occasion a breast ultrasound.
Got my mask and ventured out this morning. Yay!
Even if I wanted to hole up under my covers due to Covid19, Cowden Syndrome won’t let me. So, I g u e s s that is at least 1 thing positive right now.
What are you doing during this downtime? Any fiction books or Netflix documentaries you could recommend?
Life is happening very quickly.
Usually this overwhelms me to no end.
Tonight I find I need to write a bit and then get to bed earli(er) than usual.
I have had a bunch of appointments these last 2 months and I find myself struggling greatly to keep it all straight. Between labs with my endocrinologist and a “spot” in my thyroid bed that we STILL don’t have a definitive answer on what it is…to reviewing my EEG with neurologist and MRI with my neurosurgeon. I told my mom last week that it’s really good I didn’t suffer (more) brain/cognitive issues post brain surgeries because SHE would have to be the one managing all these appointments and scans and results!
It’s a whole lot.
Sometimes I just need to get on here and just say that.
Cowden Syndrome is a lot.
Lhermitte-duclos is a whole effing of a lot.
I know there’s no handbook or manual to manage Chronic Illnesses but imagine how much simpler life would be if there were one!
What would you include in your book? I think I would be sure to include watching a WHOLE lot of 90 Day Fiance! (I’m kinda obsessed, tbh). 🙂
I went an entire month without writing. Buh-bye November! See ya wouldn’t want to be ya!
I am still struggling: Don’t have too much to update otherwise.
- Finally had the fine needle biopsy on my (empty) thyroid bed last week. This was my 2nd one, so I was (properly, or so I thought) sedated and knew what to expect. Nope. No. I was wrong and I don’t win. The only positive thing was that I knew this technician, but not the doctor, and I think the tech (tried) to do me a solid by “talking” about things with the doctor – that I was able to pick up (if you get my drift….) I won’t go to the bad place here yet, because that’s been happening enough in my mind for the last 10 days already. I don’t have a diagnosis yet, and I can speculate til the end of time because while I do know some things, I must wait to hear from the endocrinologist.
- Something is terribly wrong with my shoulders: I speculate rotator cuff issues? One of my doctors called in some pain medicine for me, and I will be honest with y’all here, Tramadol isn’t all that bad! I told my Mom a few nights ago that I’d almost rather have brain surgery again than this shoulder pain. For real y’all. No fun.
- Sometimes it’s quite overwhelming trying to manage my schedule. In the next few weeks I have to deal with all the above, plus my brain scan and neurosurgeon appointment!
No words of wisdom today. No positivity or self-care mumbo jumbo. Writing. Watching Ghost Adventures. Water and early to bed.
It’s been a while, or so it seems. I have been a bit more active on Instagram & Twitter lately, because it’s just quicker plain and simple.
I’m struggling. Hard.
And you know what blows extra hard sometimes? What can I blame it on? How can we know? Is it my brain tumors? Thyroid cancer – and lack of thyroid hormones therein? The hysterectomy and lack of those hormones also? My regular old depression and anxiety? The effects of having my cerebellum scrambled a couple of times?
I am severely constipated. Unlike anything I can recall in years. Doing “all the right things”, and it continues to get worse and a few days ago I about passed out in the bathroom. And yes. I am drinking lots of fluids – water, coconut water, etc.
Additionally, I am extremely exhausted. Again, unlike anything I can recall at least since my thyroid cancer in 2003. I think some people think I’m rolling my eyes at them, haha, but I assure you I’m not. I just literally cannot keep my eyes open. Every time I blink (which is getting longer and more often) I am just trying to will myself to be coherent and uptight upright.
Had the thyroid MRI last week and waiting to hear.
Welp. I guess the good news is I’m not dead yet! I have to file bankruptcy at least before then.
I don’t sleep well at all. And apparently Cowden Syndrome doesn’t either.
Today, I saw the Dermatologist and had a mammogram. FINALLY found out the thyroid/neck MRI was submitted and approved: it’s scheduled for 10/26/18. By the by…can a new lymph node grow when I don’t recall my “other” lymph nodes were even involved in ’03 with the thyroidectomy? Hmm.
Still hard to believe it was 7 years ago this month I was waiting for the genetic testing results to confirm I have a PTEN mutation.
Life is rough. Life comes at you pretty fast. Funny, I’m STILL trying to accept that this is now my life: struggle, fear, terror, anxiety, loneliness, Financial ruin, dizziness, etc.
I know I’d be better off if I just accepted all that crap. But call me stubborn or naive. I can’t accept those things.
I wanted and hoped for so much more in my life.
So. Do y’all remember when I saw my Endo and he told me my “thyroid” is growing back and I have elevated thyroglobulin now? (For those who don’t remember, I had a total thyroidectomy in 2003 (and follow up in 2006) for a huge thyroid goiter. It was 10X larger than normal on the right lobe, and 4X larger in the left. Makes a hell of perfect sense knowing what we know now about Cowden Syndrome.)
And how this was over a week ago?
And how his office called me the NEXT day to tell me he wants me to have a thyroid MRI to decide what’s next?
And how I have to “be patient”?
I’m about to spit nails. IF YOU DO NOT STAY ACTIVELY INVOLVED IN YOUR OWN HEALTH CARE YOU WILL BE NOTHING LESS THAN A STATISTIC. THAT IS ALL WE ARE TO THE MEDICAL FIELD.
Here’s all I know as of today:
1. Referral for MRI hasn’t been submitted yet. Full. Stop.
2. Apparently my doctor put the order as “routine”, so his entire staff is on slow-mo. Literally.
3. Said office is waiting on clarification on order from yet ANOTHER department.
4. Was told they “hope” to get info by the end of the week. THEN the referral will be submitted.
WHAT THE EFF IS WRONG WITH THIS PICTURE?! Don’t call me a worry wart either, which is what the receptionist (who had very big balls, I might add) said to me. This is our medical system! I’m not disabled apparently, while I’m living and trying to survive with these 2 brain tumors and watching and watching with a microscope
if when I get cancer!? Cowden Syndrome and LDD have ruined my life. And continue to drag me through the mud.
Yet I’m expected to cope with this crap and bloody anxiety and pressure having to MANAGE my doctors doing their damn job? And if I find out the thyroid cancer IS back….they best be on guard because I will raise holy hell like none other. Thyroid cancer is NOT the Cadillac of cancers and should not or will not be treated differently than any other cancer.
I’m so pissed – if I drank I’d already have downed 2 shots by now and it’s only 9:30 this morning.
My diagnosis of Lhermitte-duclos Disease and then Cowden Syndrome disrupted my life so completely that even 7 years later I am still reeling. Trying to find my balance and inner strength.
I am so very thankful to have gotten through these last few months relatively unscathed. 🙂 The EGD and colonoscopy was rough, but completed. And then breast MRI was “easier” than I remembered! The only negative thing I immediately noticed is my shoulders were very sore (you lay on your stomach with your arms stretched overhead). Awkward doesn’t even begin to cover it.
Also, I haven’t received a telephone call from my oncologist. I breathe a huge sigh of relief from that as I know from experience I would have gotten an immediate call had there been an issue or concern.
Today I have errands to run, appointments to complete, and blood to be drawn from my arm. I best get going and I hope you all have a great day today!
There are about 18 different directions I could take this prompt. However, since this is a Rare Disease Awareness and Advocacy blog, why don’t I write about how my life suddenly changed on July 18, 2011?
If we go back to the beginning, see this post about what led me here. (Boy, I just took a few minutes and re-read those posts from the
early dark days. My anxiety is full-bore right now…I am so thankful that time of my life is over.)
Sometimes I wish I only had the brain tumors, and not Cowden Syndrome also. It seems like my energy could be put to better use if I was focusing on healing and recovering from just one condition, not two. HAHA.
Yet, life doesn’t roll like that for me. I do have this thing called Cowden Syndrome and sometimes it’s a beast to carry. This month I have a lot of medical procedures and I am already nervous about them. I have tried to focus my energy on other things (reading, volunteering, etc.) but I know I will be slapped upside the head come next week. I feel this need at times to “be prepared” but some days I want to put my head in the sand and not come back to reality for like 2 months.
Next week I have the colonoscopy and EGD scheduled; really really really really not looking forward to that again. I tell the doctors every time that I need to be sedated before going in. Not one doctor has listened to me and I have such huge PTSD for anything related to surgery/procedures that I have a full blown anxiety attack right before I go under. And that sucks eggs. Bad. I pray this time is different because I met the doctor at my pre-op who will be the one doing the procedure, and I begged him for something before going in. He got it! Please keep your fingers crossed that it will be smooth sailing. 🙂
I am not even going to discuss the EGD right now. Denial is a wondrous thing at times.
The last week of March I have the breast MRI. I don’t want to write about that either as I want to enjoy a bit longer my trip on the River Denial.
My hope is that if I can reach just one person who might say to themselves, “What’s a Rare Disease? What’s Cowden Syndrome? What’s Lhermitte-duclos Disease?” then all I’ve endured so far will be worth it. I wish someone (friend or medical personnel) would have told me in 2011 that I am not alone, and that I will be OK.
I’ve read different blogs for about 30 minutes this Saturday morning. Trying to understand what I am feeling, or at least distract myself from what I am feeling.
Some mornings I awake and think to myself, “I should write today. There’s so much anxiety coursing through my veins, I need to get it out. I need to cry, scream, rant, process it all here. I am actually quite nervous about my breast MRI next month. I wonder if this will be the day I get the news? Will I hear the “C” word that day?
Then I have my consult for my colonoscopy and EGD this month. My esophagus hasn’t been very friendly these last few years and I wonder how my throat looks now? I also just found out that I am now going to have to pay every time I see my doctors, and believe me, there are many that I see. So, I don’t work with any regularity and was denied disability, so how in the world can I afford to pay the doctors every time I see them? OH, I CANNOT PAY THEM. That’s right.
And, even though I can work on-call some days, when I am feeling well enough, I still cannot avoid bankruptcy. And, I had 2 job interviews these past 2 weeks and didn’t get either job! What gives? Why can’t I catch a break? My life sucks and I cannot get my head above water. I feel like I am drowning, literally. I don’t insist on much. Really. And now, I don’t hope too much either. I’m tired of the stress. When will it end?
Whoa. As I just wrote that I felt a lightning bolt – that’ll happen when I’m dead.”
Since getting diagnosed with 2 rare brain tumors and a Rare Disease called Cowden Syndrome, I’m not a huge fan of medical/doctor type things: I have my next breast MRI coming up, along with my follow-up colonoscopy and EGD. I always tend to wonder, “Is today the day I get diagnosed with cancer?”
I think it’s some type of PTSD from the brain surgeries, and while I know I am not having brain surgery today, it’s still a painful pill for me to swallow most other days. My life now will never not have any medical/doctor type things in it.
I must remember to B R E A T H E through the anxiety….