Tag Archives: Lhermitte-Duclos Disease

Things I can’t do anything about

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Sticking with the roller coaster theme, I guess it is time for another ride. Life appears to slow down and let you relax and then you remember or life smacks you with something else you have no control over:

1. having a brain tumor

2. having a rare genetic disorder that wrecks havoc on your body daily.

2. what is going to happen next.

3. your social life involves more medical professionals than actual friends.

4. With Cowden’s Syndrome, you never know what body part will go nuts next.

5. what doctors do with the list of medication they take from you at every visit. Do they ever look at it?

5. What reaction to the new medication the doctor puts you on

6. which doctor’s office your reaction to medicine will land you in

7. where you’ll end up after having a test to determine the cause of a new issue

8. what will come out of your husbands mouth at any time

9. what your mother will lose next

10. when your family will realize you are still inside a body that does not function properly

11. when your mother will stop looking at you as if it is the last time she’ll see you

12. whether your eyes will function properly when you wake up

This list could go on and on, these are just the ones that have frustrated me, beyond my limits, lately. I’m hoping the tides turn soon.

What next….

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Life gets calm, but busy……then my heart heads into the haywire department again. I have too much going on for this to start happening now. It’s Christmastime, I wanna enjoy it, but we are getting ready to head to the cardiologist. My life is a never ending roller coaster that doesn’t want to let me off………

Good News, Good News….I am cancer free…..

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I hate to post great news when a good friend is feeling low about her news……I’m just thrilled to finally have something good about my health. I’ve been quiet about my health issues lately, due to feeling like crapola, I am feeling much better (especially today). But I cannot hold my happiness in any longer.

I received my colonoscopy results, as well as had a mammogram with an immediate report today. Although there are things follow-up needs to be done on, I AM CANCER FREE¡!!!!!!!!!!!!!!!!!!!!

I totally understand that the rest of my life is going to be follow-up and preventative care. I have learned I can live with that. My worries are gone for the moment, though. I am cancer-free………

Thanks to everyone for the prayers and support. Most o all,  thanks to the good Lord above. THANK YOU!!!!

Time

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******This is a re-blog. I felt it was appropriate to post it again, cuz that old dislike is the word ‘Time’ is coming out again. I have something go wrong and I feel like crap-ola. All the doctor’s office can say is give it time, they will come in. I truly do not like being in this position. One thing has changed since I wrote this, I have been reminded that I am not supposed to worry about things. I need to put it in God’s hands, he is in control. So much has gone on since 2009, I had kinda forgotten that huge fact. I am actually beginning to feel more at ease about my illness. I do not like getting worse, but I have to remember, I’m just getting closer to him. Honestly, being able to give a little of this worry up is wonderful! I’m loving the peace!*****************************************

I learned to hate that word several years ago. When you are healing after anything to do with the brain, everyone’s favorite thing to say is ” Time, just give it time.”. I do not know about anyone else, but both Barry and I can be a tad impatient. Time is a word impatient people can’t stand.

I have to admit that I enjoyed paying Barry back with a few time comments. You have to undestand my husband’s quirky sense of humor. I know he thouroughly enjoyed telling me “Give it time.”. He smiled and giggled a little too much after saying it. I turned it around and now use it on him just a little. I tried to hide my snickering.

Ok, well down to the news I need to share. My visit to neuro-oncologist was quite informative. He gave us more information than we have ever received from other doctors. He confirmed that I do have Cowden’s Syndrome. With my medical history, he doesn’t feel the blood test is neceessary. He is scheduling an MRI of the brain and a full body PET Scan. He says he hopes they are both negative, but to be prepared for the possibility. Said it could be as simple as the thyroid cancer not being totally removed or something else manifesting in the neurological symptoms that have been poppng up. Here we go again with that word, TIME! Barry and I are praying and giving it to God. If it’s meant to be……….