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?
A few days ago I tweeted out that I need to change my blog name to, “Headaches for Heather”. Because headaches. All the freaking time. And dizzy problems. Added to memory problems, and the list goes on and on and on and on…
I put on a good front most days. I have had 5 years of doing this so I am getting pretty good at it. But, I’m tired, you know? I am freaking tired. I am tired of having to “act like I feel well” when
some most days I am exhausted. No one sees me on the inside, no one takes the time to ask how I’m doing, because I know they don’t “really want to know”. Just the pleasantries. So I do the pleasantries in response as best I can. I am not bitter, just have accepted what now is.
However, when I am feeling a bit lonely (like I am tonight), I wish I had someone to call. I don’t write this for pity from anyone, just documenting my life with two brain tumors and a rare disease and sharing my story in my little space of the Internet. The reality is I don’t have anyone to call. No one to have dinner with, go shopping with, etc. And I have to pause and wonder why that is? I had friends before diagnosis, or at least I thought I did. Where are they now? Have I honestly pushed them away? I am always mindful of the things I now disclose to certain people, and even if others do bring up questions about my health I usually limit my responses (although it does depend on certain circumstances). So, that leaves me the questions: Did I bring this isolation upon myself? Or did those once around me leave because my life became too hard for them to continue to share it with me?
Have you heard of the BRCA gene? Have you heard of the medical decisions Angelina Jolie made a few years ago? If you’re on Twitter, I can tell you there is quite a lot of discussion about BRCA and hereditary breast cancer. However, there isn’t much about PTEN mutations, and I want to change that. Granted, PTEN is rare and doesn’t occur as often, but it’s just as serious. I carry a “faulty” PTEN gene, which also increases my risk for breast cancer, not to mention many others.
I am very excited to share this from My Gene Counsel and I hope you will take a look at this link.
I am really thankful that a few more people have reached out and shared their Rare Disease story with me. I am so blessed to have this blog and to be able to share my story with others! Heather agreed to do a Guest Post for my blog and I’m so excited to introduce her to you. Besides our name, she and I have a lot of other things in common too! Most notably Lhermitte-duclos Disease: it’s very rare for me to connect with others who have LDD. If you would like to contact her on you can do so here. Please meet Heather!
I was born with a large head which was the beginning of my medical drama. I had multiple surgeries during my school age years to remove benign tumors. When I was in 10th grade I started getting headaches and double vision. It took the doctors a couple of weeks to figure out what was going on but eventually I was diagnosed with a brain tumor. I had brain surgery within the week. The doctors could not remove all of it because it was wrapped around my brainstem. The preliminary pathology report was brain cancer. After a week we got the final pathology report which was L’Hermitte Duclos. I was also told that I probably had Cowdens Syndrome because of all my surgeries and the fact that I had a large head. My world changed in a big way. I went from having no problems in school to having a learning disability. No one could tell that anything was wrong with me unless I got overly tired or stressed which unfortunately happens a lot in High School. I needed a second brain surgery when I was in College because the headaches and double vision returned. The doctors removed what they could and I continue to get follow up MRI’s. Thankfully things have been stable now for almost 18 years!!!
Two years ago I was diagnosed with breast cancer. I found out after the fact that I was at an increased risk for breast cancer due to the Cowden’s. I was asked if I wanted to undergo genetic testing during this time. I was told that I met all the signs and symptoms for Cowden’s Syndrome but they could tell me officially if I had it. At first I did not see the point in paying a lot of money to find out that I officially have Cowden’s. I ended up getting tested because my sister had just gotten married and wanted to know if she had it. It was easier for them if I got tested first to see where the mutation was. So last year I officially was diagnosed with Cowden’s Syndrome. I had to have a hysterectomy 4 months ago because of complications from the breast cancer and having Cowden’s. Currently, I am dealing with cognitive side effects from having two concussions two months apart. The doctors tell me that my case is different from most people because I have had two brain surgeries too.
Having CS and LDD is not fun as all of you know but I am doing the best that I can. I try to take one day at a time and do the best that I can with what I have. My mantra is “In life, you can only play the cards you were dealt.” I get tired of always having something wrong with me so I tend to push through things so I can continue to do the things I enjoy. I may have a rare genetic mutation and a complicated medical history but it is not going to define who I am.