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………
Tag Archives: brain tumors
Flashback
There are a few things that I have to do to ensure I function properly during the day.
1. Get my rest. Most important.
2. Do my exercises daily.
3. Drink plenty of fluids. To flush my system.
Number one tends to be the most important of all, due to the fact that my body goes haywire without it. If I am tired, my eyes do not work correctly; I have trouble walking; I’m grumpy and a bit hard to live with. Last night proved my point. Thanksgiving really did me in.
On the drive home last night, I experienced an extremely unpleasant side effect, from the craniotomy, that I haven’t had to deal with since May 2009. I was a passenger in the front seat of the van, watching the Christmas lights go by that people have managed to get up already.
Suddenly the car in front of us appeared to drive onto the sidewalk and up a telephone pole. I then realized that every car in front of us was doing the same thing. I told Barry what was happening and he suggested laying my head back and closing my eyes for a few minutes. His suggestion worked, after a 10 minute power nap, my eyes were able to focus and I got back to enjoying the scenery.
Double vision is not a fun to deal with, but I have to admit, seeing the cars go bonkers and driving up the sidewalks was a bit amusing. Remembering wearing an eye patch for 6 months, brought me quickly back to reality. That was NOT fun to deal with. An eye patch adds absolutely nothing for the way you look, unless you are Jonny Depp.
Although the holiday season is upon us, I have to make myself listen to my body. I do not like backtracking. I think I’ll increase my eye exercises a bit to ward off any weakness popping up. I will not give my eyesight up willingly. If it is meant to go, I’ll deal with it. Otherwise, I’ll be fighting it every step of the way!!!
Zombie land or Medication Haze? Where am I?
I haven’t felt right all week and then it hit me, it has to be the new drug I’m on. There is that period of adjustment you go through, when the drug is getting in your system and making things all crazy inside. The next day is usually a little better. Not this time, I have felt like the “walking dead” for a week now. My head feels all spacey, I do not respond to anything quickly, and it is like my emotions have disappeared, and I am living life in “slow-motion”. Really strange feeling. I called the doctor and there answer was, “give it time, your body will adjust”. It seems like my favorite word “TIME”, is creeping back into my life slowly.
I have always been incredibly sensitive to medications. I do not partake in alcohol consumption and I have never touched an illegal drug. Tylenol makes me sleepy and I turn into a comedian when drinking, so I avoid both. Just like peanuts, I’m allergic. The other is just not legal! I am a good southern girl, I have to keep my reputation clean.
So, my plan is to give the haze a few more daze……If the fog does not clear, I’ll call the doc……..
I feel like I need to write, but not sure what to say….I promise not to ramble….
Birthday was totally awesome. As usual my husband is a total nut, but he made the day memorable…..I never cared much for birthdays, but they seem to be more important lately. I felt all giddy inside, silly……but I did.
They (meaning one of my good doctors) have messed with my medications again, trying to improve my short term memory. The first drug threw me into an arrhythmia that had me in the ER. Found out it was an interaction with another drug causing the problem. Apparently doctors do not always check the meds you are on before prescribing drugs that do not play together well in your body. It hasn’t totally straightened out yet, but is better. I am not sure why I feel the way I do, but it has to be related to change in medication. I am afraid I’ll ramble, let me just do this later…..
God lead me to a special person….
In my heart, I truly believe that God brought Chug Heather (as my hubby calls her) into my life. He calls her that because of her coloscopy post where she talked about, “Just chug it”.
I was doing a random search on brain tumors when I found the website “brain tumor buddies”. On the page, I found the link to Brain Tumor Thursdays, with the latest post by a lady named Heather. Even bigger coincidence, she had the same problem tumor I had, a nasty thing called a gangliocytoma. Along with this lovely tumor comes a diagnosis of Cowden’s Syndrome (an extremely rare genetic disorder).
Don’t get me wrong, all of my doctor’s, nurses and the other staff I have dealt with have been wonderful, but finding Heather was such a thrill. I could actually finally talk to someone who understands. I had this enormous feeling of relief knowing I wasn’t alone in LDD and Cowden’s Syndrome nightmare. It was truly wonderful when I discovered she would talk to me. The internet is a wonderful tool. Heather and I would never have met if not for the web. I’m on the East Coast, she is on the west coast. The closest I have ever gotten to the west coast is Nevada.
Heather picked the perfect name for her blog, HopeforHeather. Heather brought hope back into my life. She has encouraged me to hang in there, she helped me organize my blog and taught me a few things about WordPress. She is also helping me with another project I’m working on. I think all I have done for her is confusion.
This post describes why I feel God lead me to her. I prayed for answers and someone to talk to that could understand and I discover this west young woman with a huge heart.
Thank you, Heather, you have truly been a Godsend. I hope you are having a bless week. Knowing you are out there, makes each of my days a little brighter. Barry says hello and thank you for taking some pressure off him.
Good News, Good News….I am cancer free…..
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!!!!
Did you know Waffle House has it’s own trash service?
OK, I posted a couple of Barry’s wacky moments. It is only fair I add a few of mine. Along with my left-sided vision being effected, my distance vision likes to play tricks on me.
A friend and I were riding down a local 2-lane highway, about 6 cars ahead of us was a garbage truck. It clearly had a big sign across the back, in bright yellow and black. At that distance, I would have sworn it said ‘Waffle House’. I made this statement, “Oh look, Waffle House has their own garbage company. That’s a new one.” The friend I was with laughed so hard, I thought she would wet herself. As we drew closer, the truck was clearly marked “CAUTION” in nice big, bright letters. Boy did I feel nutty….
I guess at any age your eyes can play tricks on you, brain tumor or not….
Shopping Trip and realistic photos……
Ok……I need to explain a few things…..I, Jill, can no longer see well to the left. looking forward, I’m fine, I have to physically turn to see to the left. Barry’s stroke affected his left side, so he has minimal trouble with his vision on the left.
Soooooooooo….let me tell you about a few crazy shopping trips……..I, Jill was browsing a rack at Ross when I felt like a woman near me was getting a little pushy and getting very close. With my balance issues, I enjoy my personal space. When I turned to the left, thinking I’ll just go to the other side and let her have it, I realized the pushy lady was a photo on the end-cap. Boy, did I feel silly!
Barry will not usually tell me about this kind of thing, but he had a similar experience at Walgreen’s. When changing aisles, he passed a life-size cardboard Taylor Swift and said “Excuse me, ma’am!” and stepped out-of-the-way. As he was passing the figure, he realized it wasn’t real. He looked around to see if any one had witnessed his faux paux, then went on his way.
Time
******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……….
Alone at last……..
Barry, do not take this the wrong way. You will be totally wrong. I love you more everyday!
I have the house to myself for the first time in over 5 years. Barry is at work, working hard and loving it. Mom is at the gym. The puppydog and I are chillin’ on the sofa. Resting. Peace and quiet, and not knowing how to handle it. I probably wouldn’t know what to do with myself if I could move. I hurt so bad, even getting off the sofa causes pain. Maybe someone is tellng me to take a nap.
With Barry’s stroke and my bain tumor, it got to a point that we could no longer keep our business open. Until the business closed, I had someone home with me around the clock.It was hard to get privacy in the bathroom.
Mom moved into the usiness end of the house. She has a way of rubbing me the wrong way, but we need to work it out. Barry has trouble with crowds, noise and chatter. He is having a little trouble adjusting to her presence, but he is getting there. Since the stroke, Barry has had difficulty deaing with crowds and chatter. Om is sweet as she can be, but she can be a chatterbox.
Two Rights Attempting To Make A Left! 
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