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!!!!!!

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.

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!

A Day of Reflection

 

 

Today has been busy, but when I got to where I could relax, I did a lot of thinking. It isn’t often that I have myself, much less make time for reflection. 

Mom and I spent the afternoon at the ladies Christmas party at church. I participated in the While Elephant Game for the first time ever. That is actually incredibly amusing. We had the best time, but I have to admit I’m feeling a little guilty. The Pastor’s wife stole my first gift from me, so when I had an opportunity, I took it back. It was so pretty…….

For a physically disabled woman, I have a lot on my plate. Together Barry and I deal with way to many issues for any sane human being, much less two people with our health issues. Barry is still recovery from a stroke and has not been declared stable yet. I, of course, continue to deal with the remnants of a brain tumor, the complications which developed from the partial removal of my gangliocytoma and the further/future effects, that the genetic disease, I have to deal with as they come up over the rest of my life.

I ask doctors about my life expectancy, and no one can answer my question. With the possible serious health problems, that can arise, from Cowden’s Disease my life is literally in God’s hands. I always said I enjoyed holding positions that made every day different. It kept the job interesting. I never dreamed my job philosophy would role over into my life. 

My experience as a nurse has definitely made managing my aging mother’s care, helping my husband cope with his health issues and with my health issues. Coping is a huge part of dealing and accepting a serious illness.  

I wouldn’t call my coping skills good, but they have gotten me this far, of course that is with a little pharmacological assistance from my multitude of physicians. I dealt with my emotions, illnesses and life in general, after brain surgery before needing help. Ironically enough, it was the new Chipmunks movie that was my undoing. While at the theater with my sister and nephews, I started blubbering at a sweet moment involving Theodore, and couldn’t stop crying. I continue to avoid extremely mushy moments or overly gross moments on television or at the movies. I’ll be a crying mess for hours.

I try to stay busy. Barry and I have found a church home that we enjoy. We stay busy there, with whatever they will let us do. I try to stay active. When I left rehab, they told me to keep moving. That one statement has helped me through more tough times than you will ever know. When I feel bad, I add a little time to my exercise for the day. Improving my strength keeps my body more stable and it functions better. My stamina for, daily life,  is better when my exercise regimen is weekly. Otherwise, one small trip out of the house will have me in bed the remainder of the day and pooped for the next 3-4 days.

One thing I have learned, is to listen to my body. I never did this before. I let little aches and pains go by without attention. My primary care physician told me, 10 years ago, she thought I had a brain tumor and ordered a CAT Scan. I thought she was nuts and didn’t go. 10 years later, here I sit. Having lived through a nightmare that came close to taking my life.

Barry went totally out of his comfort zone with our new puppy dog for me. He had German Shepherds for years. I grew-up with Boxer Bulldogs. We picked out the sweetest, white-footed Boxer with the classic Boxer wag. She is simply gorgeous and incredibly smart. She loves Barry, actually waits by the door for him to get home. It is so sweet. She has stopped me from burning the house down a few times. When I’m home alone, she follows me everywhere. I think she actually knows when my bad days are. She has actually gotten in my lap and refused to move on really bad days. She even checks on my mother. She is a sweetheart.

I learned a long time ago that God isn’t finished with me yet. He’ll show me his plan as he is ready. For all I know, I’m in the middle of His plan as I type. Not my place to question, just live my life through Him. If I had followed through with my PCP ten years ago, I would not have met Barry and be where I am today. I love my new life with Barry and wouldn’t change a thing. We are enjoying rediscovering our Christian life together, as well as falling in love all over again. How often do you get to fall in love with your soul-mate all over again?

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.

Brain Tumor Support Group

 

The first Thursday of every month is good for our spirits, and has truly helped Barry in finding the “New” him. The fellowship with people, who are dealing with more than any one person should ever have to. It is a great relief to not feel alone in this battle we are trekking through.

The staff that run the group are kind, loving and compassionate. They do a fabulous job to keep us informed on new research and news out there about research. They plan very informative programs for us on everything from sex to legal issues. They have focused on Holiday Stress the last few meetings, very helpful.

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