I created this blog 9 years ago to document my life living with 2 brain tumors. Yet, as I sit here this evening I cannot bring myself to write about anything. I’ve never had a filter here, and I am not purposely holding anything back. It’s just that I cannot connect anything in my brain to share. Sadly, things are very active with my Cowden Syndrome and Lhermitte-duclos Disease. I had a visit with the ENT last week to talk about my tinnitus. I could write about that at some point, I suppose.
So, what should I do? Retire the blog? Move entirely to Twitter since short blog posts are more my style (at least I prefer to read short blog posts). Is anyone still here? Would love to hear if anyone’s still here with me. This whole “Content Creator” trend definitely isn’t how this blog began. Unsure if I can make the transition.
Isn’t it amazing how things can change so much in 48 hours? Even 24 hours?
So a few days ago I was panicking that I might have cancer in one of my lymph nodes and that this new 5 cm. mass in my right thyroid bed was b a d n e w s.
I had the CT scan Friday morning and my Endocrinologist called me late morning. He said, per the Radiologist, that he DOES NOT need to biopsy the mass. I’m guessing fatty tissue? Is that part of Cowden Syndrome? I actually think it is, at least to a point. But, as that fatty tissue grows, then what?
Anyway, and evidently there is NOT any metastasis in my lymph node. The ultrasound technician thought it was, or theorized there was. Regardless, I have that on the top of my list of things to ask my Endo. next week. WHAT the freak is/was in that lymph node then?
So, taking small victories as they come I am breathing a sigh of relief.
PS In the midst of all this whirlwind I had decided to put my Twitter and Instagram accounts on a hiatus of sorts. But I had forgotten I had a previous commitment on IG so I have brought that one back.
I can’t believe it was about a month ago that I passed out and hit my head. It seems like it happened yesterday morning. I haven’t slept in my bed for the past several weeks because sadly I get pretty moderate anxiety at night thinking it’s going to happen again.
Trying to get the EEG scheduled; frustrating as hell. Last week I also spent 35 minutes on the phone (on hold) trying to schedule an appointment for podiatry and to see a hand specialist: and after the 35 minutes I wasted I still didn’t have an appointment scheduled for either!
Positive note: I found 2 Christmas CD’s at a thrift store and am in the process of trying to get the music on my phone. One CD synced OK but the other one will not. Going to try again in the morning.
PPS don't forget to follow me on Twitter and Insta!
Where or where to begin?
I’m up early – couldn’t sleep – and decided to jump on the ‘ole blog because life is coming full force and at times, I can’t breathe. Writing, sometimes, helps me breathe.
Here’s a quick recap on the last few months:
- In January, I lost my rescue dog. I loved him for the past 8 months and he forever changed my life. I was utterly gutted at his loss, but it was time. He was ready although I never was, nor ever will be.
- Finally got the referral to a neurologist (that was desperately needed!) and was told I have (the beginnings of?) nerve damage in my feet. From the brain tumors? The brain surgeries? Huh? What else now?! I had a nerve test last month and it was hell. The dot and the period.
- Do you remember the thyroid issues I have dealt with since last October? Last month also, I had another fine needle biopsy on my (empty) thyroid bed. (So, let’s see that’s – ultrasound/MRI/fine needle biopsy X2) – and there is STILL NO ANSWER AS TO WTF IS GOING ON IN MY NECK! I
had have elevated thyroglobulin and my doctor thinks maybe it was a technician error? Yet something is growing (I guess?) in my neck but it’s not a lymph node or thyroid benign or malignant cells? Ugh, I’m beyond exhausted.
- Haven’t filed BK yet. Found out there was some paperwork I need to submit to one of my creditors.
- My anxiety is getting pretty riled up and I am struggling with even the simplest of daily life tasks.
- I deleted my twitter account. I don’t know why; just felt like the right thing to do. Maybe I’ll be back one day? There are so many wonderful things about twitter, and to be honest it just doesn’t feel right watching Days or Gutfeld w/o tweeting!
- I have this great urge to purge (LOL). Probably the shame and anxiety about the BK.
So, what else folks? Do I continue this morning to wallow in shame or do I put on my big girl pants and get crap done today? I’m sure you know what I want to do. Let’s see if I fight against my norm and do it different.
Hi there. It’s been a while; I’m still here.
I think I have written many times about my toxic financial situation post diagnosis of Cowden Syndrome and Lhermitte-duclos Disease. For the sake of time, I’ll try to snapshot it here:
- I’m in debt over $20,000 on my credit cards as I have been forced to live on them, since I can no longer do what I once did for employment.
- I have kicked around this idea for months, the bankruptcy idea. I have prolonged it as long as I could because my ego and credit score. 🙂
- I also owe over $35,000 in student loans (you know, the whole career thing I had planned before having 2 brain surgeries, et al.)
I called one of my creditors this morning to find out about any hardship programs they offered. Currently, my monthly payment is $395. Guess what program I qualify for with them? A 5 year program with a monthly payment of $370.
Am I missing something here?
So, bankruptcy is next. I have an appointment the end of February to see an attorney to just get this done and over with. (NOTE: The filing fee for bankruptcy is $1875.)
So, if you happen to see or hear from me and I am riddled with anxiety, or so depressed I cannot get out of my bed, or I’m distant or just seem off – please know it’s because life is a lot right now. It is literally costing me money to live – and I am going deeper in the hole every moment of every day.
Pretty grim right now for me, tbh.
If you happen to see me on Twitter and see my posting about my GoFundMe or my Teespring store, would you do me a solid and share then for me please?
Thank you. Until next time.
Hi guys. Do I have anyone here that is on Twitter? I am really
interested motivated passionate hopeful about putting together a tweet chat for those of us connected to Rare Diseases. I know there is already the hashtag #RareDisease, but for brevity’s sake I registered (hopefully correctly) #rdsm – Rare Disease Social Media, modeled after #bcsm and #btsm.
Please let me know if you would like to take part! Thanks!
I think many people get these words confused: sympathize and empathize. Or maybe I’m the one who does? What do you think of when you see the word sympathy? I feel sadness. Loneliness. It has such a bad connotation for me.
I would (safely) assume that many people felt sympathy for me when I got diagnosed with the brain tumors. And Cowden Syndrome. But now that things have “passed”, I feel forgotten. I crave empathy so much. I feel guilty when I “complain” about my lot in life now, but you know what? This is my blog. This is my safe space. I am not complaining. I am processing. I am explaining. I am working on not letting my feelings eat me up inside and making me sicker than I already am. I will write everything here that I need to. Period.
Not one single person (except maybe a certain one) gives a rip about what I am enduring now. OK, OK. I get it though. We are all struggling. Everyone has something. And, these brain tumors and Rare Disease are mine alone. But, when I get overwhelmed (as I did yesterday) – to whom do I turn? Strangers on the Internet who actually seem to care about me more than my “real life” friends? No one wants to hear it. No one now even empathizes with me and the financial and emotional duress I am under every single day. As I’ve mentioned before, some days I am able to work – on-call. My brain cannot endure working 2 days in a row. There is so much sensory stimulation and information that my brain is trying to process that after 4 hours, I am done. My brain is done. My entire body is done. I came home right after work and was on the verge of a panic attack. I took a Xanax and slept for 2 hours. I am overrun with stress and anxiety, and I am afraid that the more I must “push” myself (working) – I will make my brain worse. Or make the brain tumors grow. Do you know what I mean? I just felt like yesterday I was going to break. I wanted to break. I wanted all the pain to stop. I tweeted that if this was all my life has in store for me, even if I live the next 20 years, I think I will reconsider.
I fear I will be remembered as a statistic of brain tumors instead of as a human being. That’s one of my greatest fears. That, and dying alone.
I think most of the Internet knows of my financial distress – and to those who are important and trustworthy, I don’t keep it quiet. I do try to focus on the positive, yes. But, the reality of life with brain tumors and a rare, hereditary cancer syndrome is tough almost. every. day. (I’m not discounting the hardships other people face.)
But, I digress.
Trying to steer this post from being “too ranty”. hehe
Recently, I was on Twitter and had shared my gofundme link or had tweeted something brain tumor-financial hardship related. Someone reached out to me and suggested I get in touch with this organization.
I got on that in a hot second.
To be honest, it’s difficult for me to be positive (or hope) for good things to happen because my life doesn’t work that way. My life is hard. I’m alone. I’m managing my life as best I can but forced to depend on my family, which is limited at best. How I haven’t had to file bankruptcy is beyond me. But I don’t think I can put it off much longer, either.
Anyway. I contacted Mission 4 Maureen immediately. By their grace, I was granted financial help. Thank you Mission 4 Maureen! Thank you for what you do to help those of us living with brain tumors. And, I ask you dear readers: Please visit their website. If you do Facebook, please consider “LIKING” their page and support them in any way can.
I thank you sincerely.
I think I have posted some crowd funding links here in the past. But, there have been a few changes to the links so I wanted to do a new post.
I created a storefront on Teespring a while ago. I created custom t-shirts that have a two-fold purpose. They can be conversation starters: “What does ‘Ganglio What’ mean? What does CHAMP signify?”
Maybe you don’t know the answers to those questions technically, but since you read my blog (hopefully continue to do so, hehe) you could say, “Oh. A friend of mine has a brain tumor called Gangliocytoma.” OR, “I follow a girl on Twitter who’s username is @ZHeatherChamp and I think she’s a champ too!” (insert smiley face here.)
If you bought one of those shirts you are helping bring awareness to my blog. Which in turn brings a conversation about Rare Diseases. Or brain tumors. Or hereditary cancer syndromes. Any of that! Or all of that! Win, win right? (Reason #1)
Reason #2, which is kind of a big deal, too. I receive part of the purchase price to help me navigate my medical bills. I won’t rehash the trauma. It’s real and it’s bad. 😦
Thank you thank you thank you! I’m forever grateful.
I have a tweet pinned on my Twitter profile that’s been weighing on me lately:
“Brain Tumors don’t define me”
But, you know what? They DO define me. As much as I struggle against them, they do. Just about every waking moment I’m reminded how they have defined my life. Can you guess how? Not by the numerous doctor appointments. Not by the many scans and procedures I now endure. They define me because of my dire financial situation.
If I was able to
keep maintain a job of some sort and had some income coming in, it’d be easy to be defined by something else. I am a friend. A daughter. A sister. An Aunt who just happens to have 2 brain tumors and a rare, genetic condition.
How do I find meaning in my life now when I can’t take care of my needs? I am racked with guilt every moment of the day that these brain tumors forced me to beg for help. (I guess I should look at it a different way instead? That these brain tumors forced me to be humble? I guess I wasn’t humble enough before?)
Why did major brain surgeries have to force me into submission? Today, I can’t pay for gas for my car or much needed clothes (my socks have holes in them) or even $900 to fix a crown that broke a few days ago.
Can anyone understand how my life is ruined now? Credit cards are maxed out. My retired-mother is forced to pay for my daily living expenses. How can I see or hope for change? Can anyone understand how these brain tumors DO define me, yet I want so much the opposite to be true? I want to enjoy life. Is that too much to ask?
So, I’ll ask you instead. How do YOU define yourself?