Update…..

 

For those of you that have followed my post the past few weeks, you know I haven’t been feeling well. We got an explanation today that we truly were not expecting.

In 25 years of experience as a nurse, I never pictured being on this end of a conversation. Apparently, I am in the early stages of kidney failure.

I have been the person consoling someone, when they get bad news, but I have never been the person needing the consoling. It was not a pleasant seat to be in.

We are hoping they have caught it in time and that something can be done. 

Please keep us in your thoughts and prayers. This has really bummed us out, we’re trying to stay positive.

Thank you all for letting me ramble!

Letting things go…..

Can anyone out there tell me how to do this?

The bible says to give it to God and not to worry.

There are certain things in life that are radically difficult to just put aside and not worry about.

  • Friends, eh, you learn who your true friends are when times get tough.
  • Family will always be family, no matter how much worry they cause, they are family. You love them anyway.
  • A brain tumor diagnosis, a stroke, cancer diagnosis, any life threatening illness that could lead to a major life change…

How do you not worry about things like that?

I do my best to give things to God, but I feel like I struggle daily with this issue. I pray and ask the Lord to strengthen my will and give me the knowledge I need to be able to understand how and be able to turn things totally over to him.

Hopefully the stronger my faith and knowledge about Christ and the bible, will help me find the peace I feel like I am looking for. My support system worries as much as I do.

God, help Barry and I figure out how to give it all over to you. We are your students……

Why?

When I first had brain surgery, my family and friends were incredibly supportive, until I started getting better and it was becoming obvious that I was disabled.

Most of my family has been behind me through everything. Others have had trouble dealing with the “New Me”.  I had trouble dealing with it for a while. I think I cried for 2 years at some part after the surgery.

Slowly, one by one “so-called friends” quit calling. My family changed slower. Mom, God bless her, still looks at me today as if it will be the last time she ever sees me. We have had a few rough moments, but she is still hanging in there with me.

Another relative has chosen to act like I don’t exist. I wish I could figure out how to settle this with them, but nothing seems to work. They claim there attitude toward me has not changed, when it so obviously has.

They do not call like they used too, when I call they act annoyed and are extremely short on the phone, When we are around each other, they are snappy and act annoyed when they cannot understand my voice, something I cannot help.

I am just at a loss. Everyone else is absolutely wonderful, and to my knowledge, other than have brain surgery, I’ve done nothing.

I know I am not the one with the problem and I pray for them regularly. Am I asking for the right things when I pray? Am I praying correctly? Should I approach this person and talk it out or pray with them?

What is it that makes people do this? I’m still me. The old me is in this body screaming to get out. I hate the way I am. But I can’t do anything about it. I just do not know.

To my family that has been fabulous, THANK YOU! I love all of you, dearly! Even the one having trouble. We are family. To my husband, my love, my soul-mate, DOUBLE THANK YOU WITH KISSES ON TOP! I would not be here if it weren’t for you!!!!!!

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!

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

What would you think?

Today, I had a second echocardiogram to make sure nothing is going on with my ticker. At one point in life, I wondered if my heart was the only good body part I have, then it starts going haywire. I started passing out, staying more dizzy than usual daily, and feeling like I have a flock of butterflies in my chest.  Then my legs and ankles start swelling out of the blue. Along with that came shortness of breath. Sooooooooo, off to the cardiologist. He ordered blood work and the echo. Now comes the waiting phase, again….

During the echo today, the technician states “what in the world is that?”, as she circles whatever she saw. She quickly changes the subject and attempts  to get my mind off what she said. As I was leaving, she repeatedly told me that I’ll hear from the office soon and to call by the end of the week if I haven’t.

I cannot get what she said out of my head. What did she see? I’ll go nuts before they call. I’m learning to hate time again. God grant me the strength and wisdom not to worry and the wisdom to handle it appropriately.