I wrote a post a while back about Lhermitte-duclos Disease robbing me of my confidence. Confidence in work, life, etc. But, thanks to Physical Therapy and to the P.T. (who is really awesome, BTW), I’m seeing continued progress and dare I say I’m gaining some confidence? Progress is scary for me though! I don’t know how to embrace this, if that makes sense.
Being around the P.T. raises my confidence, because he’s very adept in his people skills. :) He says the right things to make me want to try my very hardest. That’s the sign of a great medical professional, don’t you know. At today’s appointment, he and I saw so much more progress in my balance. He said something to me like, “Did you take a shot of awesome sauce before you came?” or something funny like that. LOL. It was really neat because I think he and I both could see the changes in me. The balance exercises are getting a “tad” easier…I wonder if that means P.T. will have to start making them harder? :) I almost started to cry again at the appointment today. When I think about where I was 4 years ago, and where I am now, I get overwhelmed.
Here is the kicker though: Why is it with change comes fear? Why can’t I embrace change with all the faith in the world? Why can’t I be joyous and free instead of feeling dread waiting for the other shoe to drop? This is GOOD change, for Pete’s sake. Is it because I’ll never be out of the woods with these Rare Diseases? I’ll never be able to breathe a sigh of relief? I just have to take my small victories as they come, I’m sure. And, this progress with my balance is FOR SURE a huge victory, not even a small one. I always leave the office sweaty, wanting to do more, and yet sad it’s almost over. Is that weird?
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.
You know, it really has. My confidence in who I am, what I once was capable of doing, what I am capable of doing today. Especially along the lines of employment. I have experience working as a substitute teacher, which is a good thing that I can fall back on, and I can kind of “fake it till I make it” there. But I don’t feel like a good employee anymore, if that makes sense. I’m no longer an employee who can give 110% every day because I never know what each day will bring, and I especially don’t know what these brain tumors have in store for my future. I never thought so much about my future until these bloody brain tumors.
This morning during my therapy session I spoke a lot about this. My abilities as an employee, needing accommodations, my memory deficits, etc. This afternoon at my physical therapy appointment, I asked the PT about my progress because I have been quite worried that I haven’t made any progress during these previous appointments. (The PT talks a lot about this, and while I don’t quite fully understand it, when he explains things to me it’s a little less muddy) – and he works me hard. Really hard. My brain is mush by the time the hour is up! But the glory goes to this PT, really. He makes me want to do better; to work harder; to get stronger. THAT is the sign of an amazing Physical Therapist and I am really glad I got assigned to him.
But then this happened: I have made some small progress (that can be documented)! When I did one of the timed sets of exercises today I have progressed from 0 seconds to 7 seconds! Can you believe that?! Now, this may not bode well for Social Security Disability, but I’m not thinking about that today. I am thinking about how far I have come in physical therapy and how thankful I am! I got a bit teary eyed, too. I was so scared that I was not going to make any progress at all.
I haven’t cried brain surgery tears in quite a while. I don’t know what the PT thought of me crying over 7 seconds, but it was such a big, freaking deal to me! I felt a little bit of my confidence come back today.
It was cool. :)
4 years ago today I had to have a 2nd craniotomy to fix the CSF leak coming out of my incision in the back of my head. I still can’t believe I had one brain surgery let alone two. In about a week’s time.
It’s unbelievable to me how much my life has changed since then. And not in a good way. Struggle and pain within my body (since surgeries); financial loss and hardship; fear of the unknown of what the future holds for me…just to name a few things. The dark cloud is depressive today.
I hate it.