Brain Tumor Issues Again!

feelbadAddendum: I am re-posting this for BrainTumorThursday. We are not going to be home for me to participate tomorrow, but I was hoping someone might have a clue as to what could be going on with me. It has been almost a week and I feel no better at all. Can’t get a doctor on the phone till tomorrow. I have since started retaining fluid all over my body. I do not eat salt, but I currently am carrying around over 10 extra pounds than I was a week ago. It happened over night. My wrists are even swollen.

I’m a little terrified at the moment. I feel extremely tired, my eyes have not wanted to focus most of the day, my balance has been non-existent today and getting up just to the bathroom is difficult.

Of course things like this always happen over a weekend when there is not a doctor to be found or on the beginning day of the biggest holiday weekend of the year. I prefer to actually speak to a doctor that actually knows me.

When my eyes act up, I cannot shake the fear of losing my eyesight. I have resigned myself to the fact that my wheelchair will replace my legs as my mode of transportation eventually.

If that is God’s plan, I’ll live my life the best I can and learn to love the “New Me”. I work on my eyes daily, but it doesn’t appear to help like it used to. Again, if this is part of the “New Me”, I’ll figure out my independence and take one day at a time.

Nativity Scene

I love Christmas, I refuse to get sick!

sleeping santaHopefully, my body is still telling me I need more rest. Getting out of the house for anything for the next week will not only be stressful, getting home quickly will be impossible and the holidays brings the crazy out in some people. You just never know what might happen. Since I appear not to have caught up with myself, yet….maybe I should do a little more than just kick my feet up in my favorite chair!

exercise2I need to get my exercise routine started again in the morning. If I have the exercise1strength tomorrow, I’ll work that into our day. Keeping my body strong appears to keep my energy level up. If Barry is up to it, I’ll drag him to gym. It will not hurt either of us. Maybe trying to exercise will make me feel better, than attempting to rest. Not sure if the gym will be open tomorrow. If so, hopefully the “Rowdy Roosters” will still be in the hen-house. Sharing the gym with them can be a challenge.

Round 3

Hummmmmm…….new problem. I do not eat salt. I do not have any salt in my house. I am careful with my diet. Yet, I have the ankles and calves of an old women. My hands are swollen, so is my stomach. I now, officially feel sick. Going to doctor tomorrow.

They kill me, telling me to go to the ER. I do not feel ER sick. I’d hate to take up a bed in the ER when someone might actually need it. 

I am so confused over this. First time I’ve had a new problem with no obvious cause. I hate this!

Wish me luck!

Okay, I’m not feeling my best, but I have a horrible urge to get out tomorrow and Shop! What is wrong with me? One hour on my feet fighting after Christmas sale shoppers and I hope to make it home. Am I nuts?

First thing I plan on doing is checking with the doctor about a few things in the morning. I still feel exhausted, my legs are swollen and painful with fluid, I’ve had no salt…….this has to be medication related or my colon is flared back up. 

So good people out there, say a little prayer for me, throw a few angels my way and just flat-out keep your fingers crossed that I have no trouble and do not end up at a doctor’s office. Have a good day everyone! 

Rewind

How do you summarize such a year in one little post. This has been a year packed full of adventure and heart ache, but a year stacked and packed full of wonderful memories.

If I ramble, please forgive me. I have a lot to say, and not sure where to start, I believe I’ll take it one month at a time. Just to see how it turns out.

December 29, 2011 Barry was determined he could drive. I had an appointment in Lawrenceville that could not be rescheduled, but I would be unable to drive home. So, we turned down offers from people to drive us over and I got in the car with Barry behind the wheel. He had to see for himself that he still had a little healing to do.

Biggest mistake of my life. First time I have ever wanted to kiss the ground when getting out of the car. Once I checked in, I called to ask my sister for help getting home. After a lecture on being stupid, she came to our rescue. I would have driven home doped up, before letting the love of my life drive again.

January: was our transition month and I was thrilled to have him home. Barry was discharged from the rehab center on December 28, 2011. We were adjusting and adapting our lives to accommodate his needs around the house.

Along with this we were in the process of tri-weekly outpatient rehab at a local center. It was nice to find a good center close to home, since I was doing the driving. I do better at short distances.

Coordinating outpatient rehab and follow-up appointments was quite a task. I believe Barry and I are ending this year more organized than we ever have been.

Spending so much time together, Barry and I started getting reacquainted and honestly getting to know each other better than we did before his stroke. He is more open and relaxed since the stroke, he has also lost his filter. I never know what to expect out of his mouth when he opens it. It is really refreshing at times and always good for a laugh.

One of our nephews did not understand that Uncle Barry was sick, even though he looked the same. Barry had a little talk with him and let him know that their wrestling sessions had to be over for a while. He is such a smart little guy and watching him grow into such a sweet little young man is a pleasure. This nephew is Barry’s first nephew from day one.

His brother went everywhere with Barry and I when we were dating. Everyone thought he was our child. It was wonderful!

Since I was unable to have children, watching my sisters kids grow-up and being part of their lives has been a joy. They will never understand what that has meant to me.

February: lead into more rehab and more appointments. For a while, rehab and doctor’s appointments were the only thing on our social calendar.

This was an extremely hard month, we had to make the horrible decision to close our business. To date, I don’t know if it was harder to tell the residents or their families. Some of the residents took it hard, one got mad and lashed out, but apologized later. The others said they understood, but were not happy. The state people attempted to encourage us to stay open if at all possible.

It was not in the cards. Barry and I just could not do it alone anymore and we could not afford to pay good help to run the business. It honestly felt like a weight had been lifted from my shoulders. Now I could focus on Barry and I, instead of the two of us plus the residents. I had forgotten what it felt like to relax.

March: lead into the permanent close of RoseWillow Cottage. With the last resident settled in a new home, we officially locked our doors for the first time and attempted to figure out how to live in the rest of our house.

We had the pleasure of watching my baby sister receive her degree at graduation. I was so proud, she worked so hard. Although the economy is not helping her find an open position. Hopefully, she’ll find something with the new school year. She is a middle school math teacher. 

Barry’s rehab had been decreased to twice weekly, with hopes to soon be discharged. He was progressing marvelously. No one could believe he had been through the massive ordeal he had. God truly had a hand in his recovery. It is the only way to explain it.

April: Lead into Barry’s discharge from rehab and I took over as drill sergeant making him exercise and do his memory drills. He has been in management for 20 some odd years and does not like being told what to do. Trust me!

I got my nice, new purple wheelchair that is easier to handle than the old one. That thing weighed a ton!

In April, God led Barry and I to our church home, Victory Baptist Church. We felt at home the minute we walked through the door.  A friend of ours has been inviting us for years, but we always used the business as an excuse.

A few of our residents wanted to attend church when they first moved in, but as their condition worsened, they started refusing to go.

Barry and I also celebrated our 8th wedding anniversary quietly at home. After the stroke, Barry had difficulty with crowds for a while. We slowly got out in public to give him time to adapt.

May/June: these months found our schedules calming down for a bit. Barry had a birthday in June, he was really anxious, but survived without a hitch. In June, my mother asked if she could move back in.

She did not feel safe where she was, so she was packing her bags coming back to our house. Of course, we could not tell her no. Barry and I agreed, we couldn’t have her in her current living situation. We discussed a date and got ready for mom to be in the house again. We sat mom and my sisters down and laid out a few ground rules. Needless to say, they did not last long.

July: Mom moved in and a new iron was added to the flame of confusion. We had a few trying moments, but I learned to lock the door and keep mom on her side of the house. Best money we ever spent, the lock on our side of the laundry room. We even have a do not disturb sign on her side of the door. It is working great, at least for now.

August: started off great, then about midway into the month, I fell backwards down the steps in our garage. Stitches in my left elbow and a mild concussion.

I hate hospitals when I’m the patient. I did not realize how the hospital ER would affect my sweety, but the combo of me being injured and being in the hospital had him on the edge of panic. As usual, the hospital was slow as Christmas! I was so relieved to get him out of there, 5 hours later.

It takes me forever to recover from falls. Here it is 4 months later and my left elbow still gives me fits. The rest of August and into September, Barry and I didn’t do much traveling. Barry was adapting well and adjusting to the new him.

September: my energy level stayed in the toilet for most of the month. I was tickled to figure out the problem was not only the fall. They discovered I had an infection in my colon. This of course lead us back to the doctor with with their favorite words, tests, and you need to see another doctor.

At the same time, my neurologist decided he wasn’t sure what else to do for me and referred me to a neuro-oncologist, with experience in my brain tumor.

The new doctor added Cowden’s Syndrome to my collection of diagnoses and ordered more tests. The tests turned out to be good. They lead us into figuring out a few of the difficulties I was experiencing. I was tickled they found no cancer. But I was off to more doctors to treat what he did find.

October/November: both months were kinda packed with doctors visits, procedures, and more doctor’s visits. We were settling in at church really well. Enjoying getting to know everyone. I grew up going to church, but in the six months at Victory; I learned more about the bible than I ever have. After being picked on for weeks, I survived another birthday in November.

December is here and we are still holding on. Barry is getting stronger by the week. He has decided to retire. I’m getting used to the idea of him being home all the time. We spent the first few weeks of the month catching up on the things, we missed out on last year. December 11th came and went without us even realizing it was here.

I’m sitting here, next to the love of my life, as I type this. I am overcome by joy that we have had this time together and look forward to the many, many more adventures in store for us. I almost lost him last year and l don’t want to think about where I’d be today if that had happened.

We are living one day at a time and loving every minute!

Holiday Shoppers! Ohmy!

santa borderI am usually shocked by the behavior of people without disabilities, but today I decided that no one cares about anyone else any longer. This is a time of giving, love and cheer. Barry and I got far more than that while shopping for essentials today. We only went out for things we had to have! Into the pit of craziness we went.

I’m still not feeling my best, but it was a day that shopping would have been easier with one of the motorized carts. The carts were not sitting all over the store, dead were in with the other carts, dead and not even plugged in. The people using the carts couldn’t even be bothered to turn them off and plug them in to charge. But we have to help each other. The employees working couldn’t take the time to have the dead carts around the store taken out of the way and put up to charge. They would probably be the first to complain if they needed one.

These carts are kindly made available at certain stores, so that people with disabilities can get out and do things for themselves, keeping a sense of normalcy.  I have gone to the store, when I really was not up to it and all of the carts would have dead batteries or be out of service. Kinda burst your bubble. Grab a push cart and do your best yo get around the store.

Today, a lady in a motorized cart wanted to see something on a display, that she couldn’t get to. I was standing off my cart looking at an item on the top shelf when this lady decided she would try to get her cart between mine and the display. She bumped my cart, which knocked into me and I fell into a rack of clothes. She didn’t even apologize, she just rode off. Then as we were leaving, a disabled man pretty much tried to sit in the seat of the cart with me and when I did get up, he was taking off with our groceries before we got them out of the basket. On top of everything else, an elderly lady had already asked if she could have the cart. I told him that and with her standing behind him, he got on that cart and rode off. He did not even look back.

I was just shocked. I apologized to the lady and got out of there. 

Whatever happened to “Love thy Neighbor”?

People used to be kind and treat each other with a littlte respect. Has respect been taken out of the dictionary? I must have missed that.

 I was unable to have children. After I see the way some kids act, if they were mine, I’m not sure whether or not they’d be able to sit down for months or be grounded for life. I know what my momma would have done to us. It would have involved a weeping willow tree and picking out which branch we wanted her to use.

Barry and I were both exhausted leaving that crazy place. I just don’t get people anymore………….

Happy Holidays, everyone!!!

Brain Tumor Issues Again!

I’ve been blessed with the fact that issues caused by my brain tumor are constant and tolerable on a daily basis. I suppose that is a good way to put it, but they do have those days when they act like an angry toddler not getting his/her way. Well the toddler has been a little rascal for over a week now.

Not only is my heart acting like a fool, I feel like my face and top of my head is attempting to learn the tango. A few months after my craniotomy, I developed a facial tic which grew into making every muscle from my shoulders up, twitch uncontrollably. The neurosurgeon said he could operate and make me worse or I could try medication management. We chose medication management. I have been through a battery of medication that actually gave me some relief, others made me close to crazy or mean as a snake.

I finally got on a regimen of drugs that actually made life easier, then they sent me for a Botox referral. Botox helped my neck muscles, but it did not do much for my vocal chords. At one point my vocal chords were twitching over 200 times a minute. I could barely talk, but I missed singing more than anything. My voice disappeared for 3 months, instead of getting stronger. It was amazing to be able to sleep on my stomach for the first time in 2 years. I honestly did not realize I couldn’t turn my neck to the side. It was great!

Off to the Otolaryngologist(spelling?). He does the Botox in my neck and vocal chords. Friday afternoon, I get the pleasure of Botox injection into the roof of my mouth for palatel myoclonus (spelling?). Apparently, this might not only fix my twitching palate, it might fix the ear trouble I have experienced since surgery. We’ll see.

I truly am not looking forward to it, but the Botox has helped in the past. Otherwise, I’m headed back to let my neurosurgeon make me worse……I’m not ready to cave-in yet

The case of the “unknown pants”…………

pYou have to understand, we live in a house where three people with memory issues reside. Maggie, the dog, has a best memory in the house. I cannot figure this one out. Just wish we could figure this one out.

When arriving home from church, yesterday, I discovered a strange pair of pants lying over a dining room chair. They were a medium gray pair with a white pinstripe. We had no visitors to match these pants and we could not discern how they came to be in our dining room. All of the doors were locked, all windows closed tight, and Maggie did not appear to have had a mid-morning snack. Yet, here they are and how did they get in the house?

Barry denies knowing anything about the pants, other than they did not belong to him. The pants were not meant for a tall man, Barry is six-foot tall. These pants are meant for a munchkin. To my knowledge, there have been no munchkins in the house. Is Maggie throwing neighborhood parties when we aren’t home? She does open the doors by herself when she really wants in a room, or out. I’m writing this and haven’t got a clue where they came from.

Mom says she is not positive, but she doesn’t remember any visitors leaving without their pants. Mom is probably the culprit. She does minor alterations for people. But swears she knows nothing. 

In a house full of people with memory issues, what do you do when something like this happens? Just another example of the mysteries of the human brain. How else can you explain this?

Christmas Programs everywhere……

Snowman2

The holidays are here and they are hitting like a runaway locomotive. Barry and I missed everything last year, he was in rehab after his stroke. We wanted to get in on as many programs as we could this year.

December 1, will strolled through Loganville Baptist Church’s version of “Journey to Bethlehem”. They did a wonderful job.

December 2, we got to see our great niece, in her churches kid’s Christmas program. We learned she is quite a little entertainer and loves a microphone. Absolutely adorable 3 year old.

December 6, we went to another nephew’s band concert. I was amazed by the change in music or a better way to put it is, the way the band put together their performance. Absolutely amazing.

December 7, we will helping set up for our church’s Christmas program. Barry and I have been on a treasure hunt the last few weeks for this program. It is exciting watching it come together.

December 8, we will be attending a Christmas Play with my oldest sister’s church and some of our family.

December 9, will be the program at our church, with a possible encore the following Sunday morning.

December 15 is the Christmas Party for the ladies group at our church. Mom and I are responsible for decorating a table. Busy making plans for that.

On a yet to be determined date and time, our family will be celebrating the holiday! Along with a few more stops on the Christmas Express, but Barry and I will survive…….God will get us through it all, after all…it is His season!Snowman

Things I can’t do anything about

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, part 2……..

 

Well, echo scheduled for next week. Had blood work drawn at office. Hopefully, all is well, my heart just doesn’t like what my neurologist is doing to my body. My body doesn’t like taking a bunch of pills, I always manage some form of adverse reaction to medication changes. Life goes on, time will tell (and the tests too, of course). One day at a time, the only way to go….It’s in God’s hands