Ohmy, what is wrong with me!

I’ve just about had it.

Where do I sign up for a full body transplant? If they were doing those, I’d be the first one in line. I’d even keep my screwed up brain if my body would act right or should I be looking for the brain transplant line? That might be just the fix I need!

Something is going on and I cannot figure it out. I feel okay, not sick…..my energy level is just in the toilet. I think it is about to the point of being in the septic tank. I just cannot shake it.

As a nurse, I have told tons of people to listen to their bodies, they will usually tell you what they need. But what does my body need? It is telling me to do nothing but sleep.

Since the brain surgery, I’ve had a little trouble telling when I’m sick or getting sick. It’s hard to explain, but I have gone to the doctor feeling fine, for a check up or something to find out I have a raging fever. Usually ends up being bronchitis or a sinus infection.

The only issue I have had lately was a medication side effect. They took me off the medicine and the problem is going away.  If I get to feeling bad, I’ll get Barry to take me to the ER, but I hate the thought of that dreadful place.  

I have no headache, my neck is sore, but it is from the brain tumor pressing into nerves. I’ve been keeping up with all my check-ups and I take all of my medication as prescribed. I’ll just stay hydrated and take it easy through the holiday.

Although I do need to open the cookie factory for a while tomorrow. I may have to find a couple of recruits that will work cheap. There are two others around here that can be quite handy. I’ll stop rambling now. Going back to sleep. Night all!

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!

Wow, I feel so honored….

cwlebrate

Recently, I received nominations for three seperate awards. I’d like to thank those who nominated me, you guys are wonderful……. I enjoy writing and appreciate your encouragement. I am mulling over what I need to do for each award and will have it posted soon. I wanna get it right and feeling as I do at the moment, I think taking my time is the best choice. I don’t want to sound like a numb skull.

ballons

My Most Favorite Christmases

SnowmanI have two favorites, so please bear with me…….

The first has to be last year. Barry suffered a massive stroke two weeks before Christmas last year. We were told he might not make it, but he did.

It was the happiest day of my life, when I got to take him from the rehab center, for a day pass to celebrate Christmas with our family.  It was also the hardest thing I have ever done when I had to take him back to the rehab center on Christmas Eve. We had a lovely holiday with the family. 

He pulled through with flying colors and actually shocked a lot of people being able to walk out of that hospital with me. 

This year, Christmas Day is going to be the two of us and a lot of quiet. I might take him out to try his Christmas present out. I’m hoping it will spark his interest in a hobby for his retirement. Our family gathering is 2 days after Christmas. We plan to open the cookie factory up for a few days. We have a few treats to make. 

My next favorite Christmas, involves my nephew, Jonathan. When he was four years old, it was my job to occupy his time so his mom and dad could finalize plans with the big guy.

It was Christmas Eve and he wanted to ice skate, so off we headed to the Mall of Georgia. Their skating rink was in the back of the mall and not a long drive. Good for Aunt Jill in Christmas Eve traffic.

After he skated for a few hours, we headed into the mall. We went to see Santa and walked around looking at decorations. When I got the all clear to head home, Jonny and I headed to the van.

About two miles from the mall, our van broke down. I managed to get to the parking lot of a convenience store and called for help. It was going to be close to an hour before, Santa’s helpers could arrive. 

Jonny and I got a cup of cocoa and prepared for our wait together. We sat in the van listening to the radio singing Christmas carols. (He’d never admit any of this happened now that he is 14), as the windows fogged up, we drew on them with our fingers. The van looked like Christmas wrap before we were finished.

The radio gave it’s reports of Santa sightings in the area. It was the sweetest thing to watch the sheer, childhood innocence on his face with every report. The closer the radio said Santa was getting, the more excited he got. We were having so much fun, my dad scared us both knocking on the window when he arrived.

I was disappointed our time was over, but it was back to reality……

The “New” Barry strikes again

Barry’s office has a family day every year before their holiday starts. They have Santa for the kids, everyone brings snack foods and a little work gets done. What the employees love more than anything, is they get to leave early….hit the stores, have lunch or whatever else you may want to do.It is very nice.

Well, this year on the drive to the office, we had”New Barry” moment that was hilarious. The poor lady in the car next tons did not know what to think. We were at a red-light when an SUV pulled up next to us. The SUV was decorated with an elf hat on the grill and ears sticking out the back windows. (Just for you info, we have had a drastic weather change, it is icy cold and windy) Barry signaled for her to roll her window down, when she did, he asked, “Are your ears cold?” She did not say a word, but got a funny look on her face. The light had changed, so we drove on. I’m not sure we wanted to hang around to hear her response. 

Last time I was with anyone doing such, I had picked a tipsy friend up and she would not keep her window closed at red lights. She asked every car we stopped by if they had anything gray she could poop on. Of course, referencing Grey Poupon Mustard. It was funny, but distracting when you are trying to drive. But, oh, what a ride home…

Cookie Factory Closed for the night……

 

 

This afternoon, after our infamous shopping trip, Barry and I opened our Holiday candy/cookie factory.

Today’s focus was cookies for Barry’s office party tomorrow. We made 8 dozen sugar cookies, put them on cooling trays and when they were ready, dipped them in chocolate and peanut butter dip, laid everything out on wax paper to cool and waited. When everything was cool enough, we put them in gift bags and closed shop for the night, This only took 5 hours. 

Before the 27th, we have more cookies to bake and cherries to dip in chocolate. I used to soak the cherries in spiced rum before dipping them, but pop doesn’t need the rum anymore. We might peanuts clusters this year, but maybe not. We are both tired and do not need to push ourselves too far.

Our great-niece has made a request for two different types of cookies. We have combined the chocolate and peanut butter to make C-cookies. Named after our sweet little great-niece. She wanted M&M cookies and then changed it to peanut-butter cookies. Is it not the cutest thing to have a child ask for cookies for Christmas? She is absolutely adorable.

Her little brother will probably be as sweet as her. He’s still the little bitty guy in the family for now, but Aunt Jill and Uncle Barry got him the coolest present. It’s loud and noisy. I can’t wait to see his sweet little face.

Good night everyone, the Cookie Shop is closed and baker number 2 is about join baker number one in sleep town! Sweet Dreams!

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!!!