Tag Archives: Lhermitte-Duclos Disease

I Wanna Run Away!

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Please, someone tell me when it is okay to run away. I’m not sure how much more I can take before I crack. 

I live the “Life of Riley“. Honestly, I not sure what that means. Was it a TV show? Radio show? Cartoon? I’m going to look it up. The situations I’ve heard it used in usually involved someone having it made; not in need of anything; someone spoiled rotten. All of the above, at times, can describe my life.

I live in a beautiful home with the perfect husband and family pets. We have one boxer and one fish. One step-son that keeps his distance.

My husband and I are raising my mother. It can be a challenge at times. But we make it.

We are far from well off or rich, but we are comfy. A lot of people today can’t say that. It really hurts Barry and I to see others struggle. We help when we can, but keeping up with medical bills will eat you alive. 

Since 2009, Barry and I have run from doctor to doctor trying to figure my illness out. It is starting to feel like a waste of time. Every time I see a physician, something else is wrong.

Is this a never-ending battle? Is all the running around doing a bit of good? I guess I’m a little tired of being sick. I feel like my life is falling apart and I’m not sure what to do.

That doctor, last week, really threw me for a loop. Just uttering those 2 little words has my head in the toilet.

It was like the day the doctor told me about the brain tumor. “Oh by the way, you have a brain tumor.” That is how he told me. He added a few other things to it, but that was enough to shatter my world. My head was in a spin then, and it is spinning like a top now.

I’m not going to do anything stupid. God has kept me around for s reason. I have too much life left to live to do anything stupid, I’m just trying to write this down to see if it will shake me out of this funk.

I should be sleeping . Big birthday party tomorrow. Going to be a long day, I need my rest. Barry is snoring in the chair next to me as I type. Maggie is snoring on the couch. Maybe I should follow suit and go to sleep. Maybe I’ll feel better in the morning. 

Hope everyone has a good weekend. I’m trying to turn mine around. Be sweet!

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My New Least Favorite Words on Earth: Incidental Findings

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Dr. M, my now urologist, seems like a very good doctor with a great personality/bedside manner. My appointment today went great. The kidney ultrasound is good, with one little issue to follow. Otherwise Dr. M. says my kidney’s are beautiful. Awwww, how sweet. They better be! About the only organ I have left that functions correctly.

What gets me about Cowdens Syndrome is the unknown. Today, I’m told I actually have an organ that is functioning properly, but we need to watch this “one” little spot. We want to make sure it isn’t something forming that shouldn’t be where it is. So, my roller coaster of doctors continues.

On top of the little spot that needs watching on the right kidney. It appears there is an incidental finding on my liver. He would  like to schedule an MRI, to get a better look. So, more tests, more waiting and more unknowns.

I feel like I am fussing about what is going on in my body. I truly believe that Jesus died to save us from our sins. I believe that the Good Lord has a plan for us and we shouldn’t question that plan. My life is in his hands and I am not exactly how to hand my troubles over to the Lord and not worry.

After my appointment today, I wasn’t what I would call questioning things, but I was so frustrated with the news that it brought me to tears. When I got to a private place, I asked the Lord for the grace and strength I need to make it through all of this news. My fears eased.

It is just so incredibly hard to deal with all of this. Today, I felt like the robot from “Lost in Space“.Turning in circles, arms flopping, thinking, “fix me Will Robinson, fix me!” If it were only that easy.

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Quiet time

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It appears that someone has seen fit to give Barry and I a reprieve from running around like chickens with their heads cut off. We have managed  to carry out a few things around the house. Feels good.

Mom experienced a health issue and has been in the hospital all week. She is OK, but had to be admitted for a while.

The rat race begins again Monday morning with an MRI of my chest, leading to an evaluation later that day by a urologist.

I’m filling out the paperwork for the Cowden Syndrome Study and working on arranging a date for my family to get their trusting done. Mom being admitted through a loop in those plans.

My brother-in-law lost his mother, taking them out-of-town for a week. She had been sick for a while and the Good Lord called her home. She is no longer in pain and she is in a better place. I haven’t lost a parent yet, but helped Barry when he lost his mom. All around a difficult situation. Our prayers and concerns go out to Dennis and his family. We love them each and everyone, dearly.

So after several bumps in the road, maybe we can get the scheduling done for testing. I do not to mean to seem like I’m making light of their loss, I’m not. Under normal circumstances, I would have been in Idaho with them.

Knee Business! Happy Dance!!!!! woooohooo……

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I love seeing a doctor and leaving with a smile on my face. With my fall, I  did not cause any permanent damage, because there isn’t any cartilage there to tear.

She has an idea to try before talking about major surgery, so we’ll give that a shot and talk new knee when we have to. I’m game. I’ll rather get an injection under the patella, than go under the knife.

Again, the good Lord has watched over me and showed me flipping out about this is not always the answer. My Faith gets stronger daily. It is really hard not to stress over your health, when you have so many things to stress over. Barry and I are learning to let God take the lead on health issues. The better we get at it, we are honestly feeling less stress over things.

It has gotten to the point that I actually leave my cane or walker in the car, because I don’t want to feel like a little old woman or have anyone laughing at me. Pure silliness. I’m learning to leave my pride in the car, not my walker.

I just got a new walker. Barry says he’ll pimp it out for me if I want him to. A few things might be cute, but I wouldn’t want him to go overboard. The kids will love it! 

I got permission to get my exercise program going again. I’m hoping to start in the morning. I’ve missed the gym.

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Dealing with the after Effects of Falling

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???????????????????????????????????????To date, I have avoided “major injury” falling. Although, there is an indention of my head in the living room; I have ruined a box of pictures and found myself stuck, without help, in the middle of a box of shattered glass and a broken picture frames; I have gone head over heels when I fell in the recliner; I’ve fallen from the top step in the garage backwards flat on my back; and I only have 2-3 throw rugs left in the house because I trip on them, causing twisted knees, sore elbows and shoulders. We have done our best to fall proof the house, but it still happens. I’ll find out tomorrow. At this point, the injuries have been a mild concussion; torn meniscus in my left knee; stitches in my left elbow; and whatever the doctor says I have done to my left knee this time.  The radiologist the performed the MRI, told me my left knee is bone on bone. It will be interesting to see what the doctor has to say. If a new knee is worth it, should I do it? All these questions, I’ll have to wait for answers.

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Our 200th post, There is a link to the page, but I also put the post below to avoid confusion

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 Click the link for our 200th post:

https://gegebearbear.wordpress.com/200th-post-can-you-believe-it/

The 200th post is below, but I’m gonna leave the page up too. I have removed any mention of a certain person who shall remain nameless. Enough said.

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We thought this post required something special. I find it difficult to believe we’ve been blogging since September 8, 2012! We have been on a journey since that date, but we are holding on strong and closer than ever.

This blog wasn’t our idea, but we have thoroughly enjoyed compiling information for post together. It truly has been therapeutic for both of us. Who would have thought that a counselor, specializing in neurological issues, would know what they were talking about? Maybe that was what we were paying them for? At least our insurance was…..

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We have done so well. Blogging has brought new friends into our lives and seen a few leave. The good seeds continue to take root as the friendships flourish. Others are like annual flowers, they are incredible at first then the heat of the sun fades their colors. Then you pull the annuals and throw them out to put new color in your garden. It is a shame all flowers and friendships cannot be timeless.  Enough said on the matter.

Barry and I continue to enjoy each blogger we have met on WordPress and stay sorrowful over those that did not work out. We have met some incredible people, who have taught us both a lot. Papazilla actually got me to debate a topic in writing, which is something I avoid like. I do not speak well, so there are certain things I do not freely take part in.

I have a rare genetic disorder. I felt so alone dealing with my illness at times, then my friends and family remind me I am not alone. The internet is an amazing tool to use to connect with people you may not meet normally. Barry is wonderful and my best choice to discuss my disease with. Thanks to everyone for being wonderful!

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BrainTumorThursday on Twitter has become a weekly part of my life. When I can take part, I do. When I can’t, I make sure one of my posts, about a brain tumor issue, is on the page. There is such a huge need for funding for research. Brain Tumors kill too many people yearly. I’m including a link to a national foundation for when you would like more information.

Twitter link:

http://paper.li/TumorWarrior/1343039984

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http://www.abta.org/about-us/

http://www.sbtf.org/home.html

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Two groups of hardworking people working to stop the pain of brain tumors. Please check them out. Barry and I take part regularly in the SBTF run/walk to raise money in Atlanta. We enjoy the get together. We also take part in a monthly support group for brain tumor patients. Very helpful group, when figuring life out after a brain tumor.

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http://www.emoryhealthcare.org

I’m including the website for the support group below, check them out. Very enjoyable group.

http://www.neurosurgery.emory.edu/BTSG/index.htm

Tons of extremely hardworking people, check them out!

Check out #BrainTumorThursday on Twitter. Just do a search. Do not forget the hash tag.

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Other health issues in constant need of funding are mini-strokes and strokes. As a nurse, I know what to look for and what they look like when occurring. Many people have health issues happen today and are clueless. They have no idea what is happening or whether to consider it an emergency or not. It is truly sad in my eyes that we are not more educated about our bodies and how we should respond to them when they scream at you,

 ‘HEY, I NEED ATTENTION!’

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I’m so glad I was home with Barry when his stroke occurred. He’s an extremely healthy, highly intelligent man. He did not have a clue or remember anything past us getting out of bed that morning. If he had been home alone, he would not be with us at the moment. God is good and decided he wasn’t finished with Barry. He helped me get the right people on to Barry, then the doctors and hospitals took over. New technology saved Barry’s life. Emory University Hospital had Barry in the procedure room before I made it to the hospital. I thank the Good Lord above for guiding the doctors in the proper care Barry needed. Although, his stroke continued once the clot was out of the picture, Barry is alive and thriving.

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http://www.heart.org/HEARTORG/#mainContent

http://www.strokeassociation.org/STROKEORG/

http://www.stroke.org/site/PageNavigator/HOME

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Since starting our blog, our lives are finally calming down. My illness is settling into a routine of check-ups and Barry is getting stronger each day. Mom is even settling into our routine(Surprise, surprise)

Barry and I are about to embark on a new voyage in our lives. When he retires, we will have time to run around and do what we want. Travel; be lazy;  work in the yard; go to church; visit family; who knows, maybe we will see a movie at the theater…..I have a huge list of ideas, I just have to talk Barry into it. Barry will have a tough time adjusting to staying home. He has driven downtown(Atlanta) to work for over 30 years, sleeping past 6am is already a challenge for him on the weekends. After 9 years of marriage, I can say one thing about Barry L. Baynes. The sweet man despises change!

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If you do not know CPR, LEARN IT! You may need it some day!

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Round Four Finale

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MM900295156Biopsy results are NEGATIVE! NO cancer. They still want me to have an MRI, because they do not have a solution for the problem. But no cancer!!!!!!!Thank you, thank you, thank you!

Saw endocrinologist today about thyroid scan. It was clear, but there is a lymph node she wants to follow. Which means she wants to schedule a thyroid scan! I hate the thought of another thyroid scan. You have to put your system into hypothyroidism before the test.

Last time, they were out of the injection to do this for you and I had to quit taking my medication for 3 weeks before my body converted to hypothyroidism. I was so weak, I could not walk. I was having to use my wheelchair to get around everywhere.

But I’ll do what I need to do to make sure I stay cancer-free. I may not be happy, but I’ll do it. I’m hoping Thyrogen is available and taken care of in 2 days.

Get results of the MRI on my left knee, next Tuesday. I have the feeling surgery is around the corner. But again, I’ll do what I have to do to stay healthy.

I can’t wait to get back to my full exercise routine. I miss it! Gonna light a fire under Barry’s fanny to get him moving with me. We may even get Maggie in on it!

Well, I’m putting this tablet down for the time being. We have to run an errand. Round 5 starts next week, with God leading the way. I hate to think where I’d be without the good Lord guiding us through this mess. Still taking things one day at a time. Thanks for your comments and support.

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Monday Jitters

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Give, it to God, Jill.  Don’t let all of these crazy things worry you. Take one day at a time and one appointment at a time. That is all you can do, do not over think what is going on next week and let God work in your life. He is the one with the plan for your life. Let him work it. Be strong for yourself, Barry and you family. It is inside of you. Be strong. No matter what the outcome, be strong. She your strength in your actions. Barry needs to know you are OK and tough. Be strong for him. Be encouraging for Barry. He needs to see your strength.

Please forgive my nervous outbreak. A lot going on next week that I am not sure I’m prepared to deal with. But I’m in God’s hands and he’ll take care of me. I’m more worried about Barry than myself. Hospitals make him nervous, especially Emory, since the stroke. I’m sure it will all work out. Monday is the key. Just take it one day at a time. 

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Double Whammy…you have to love doctors!!!

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While at a checkup with the Allergist today, I received a phone call from the genetics counselor assigned to me. She had received the results of my genetics test. I apparently do have the rare genetic disorder all the doctors have been avoiding discussing with me. So I am one in 250,000 people in the United States blessed with this genetic nightmare.

Even though one sweet doctor had taken it upon himself to tell me that I could be considered diagnosed with the disease because of my medical history; I felt like a rock had been dropped in my lap. Reality smacked me in the face and now I had to discuss this with my family and get them to be tested. I hate being like this.

I would never wish this on my worst enemy, I certainly do not need to worry about my sisters, nieces and nephews having to deal with this. What about their children? This is just so much to deal with. I was coping fine, until I knew for sure. Now…I need to pray on this…

 

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Yearly Thyroid Ultasound: HAPPY DANCE!!!

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I got the all clear after my ultrasound today. They thought I had an active lymph node in my neck, but I have been given a clean bill of health any thyroid cancer or lymph node issues for the moment. A big thank you to the good Lord above and to everyone on here for the courage and support you bring out in me daily! THANK YOU!!!!!!   🙂 

HAPPY DANCE! HAPPY DANCE!