Sunday, January 24, 2016

Tale of An Inner Child

Trevor here, with our first blog post of the year. This one is going to be so exciting to share with you. Brenda has been busy with several different projects, some of which are continuing. She has really found what makes her happy. She has always been a kid at heart and that is why our theme of an 'Inner Child' was chosen for this tale.

Brenda has loved "Our Gang" or "The Little Rascals", since she was a young girl. She remembers one Sunday afternoon, during a storm that they had something on TV, she had never seen before. Her mother started to tell her about these little episodes or shorts that these talented children made. She has been hooked ever since. They were even on right after school each afternoon and Brenda would run home, (back in the day, when she could run) so that the TV would be warmed up in time to watch. I guess you had to actually wait for the TV to warm up, as it was a Setchell Carlson with a combination radio. You had to even walk up to it, to turn it on. No remotes in those days.

So this was usually thirty minutes of enjoyment for Brenda to watch. Some of the episodes were so long, that they would get cut off before they would finish. It was years later when VCRs were out on the market where you played a VHS, that she finally got to see these episodes in their entirety. She started collecting episodes by recording them. She has over 120 episodes in that mode. The year when the remake of "The Little Rascals" was released, Cabin Fever made them available for purchase on VHS. Brenda had so much fun as they went on vacation to Kansas that year and starting in Nebraska, she started buying and collecting the various episodes on VHS.

She now had a nice collection on VHS. Now that she has graduated to DVDs, she is well on her way to getting that collection built up as well. She has close to ninety episodes. She was even able to get the full length movie they made: General Spanky that was just released on DVD. Her mother and Brenda watched that movie so many times on VHS, that the tape started to unravel. The last time she almost didn't get it out of the VCR, so she figured she better not try to watch it again. Imagine how thrilled she was, when she saw it was going to be released on DVD. She ordered it the day she saw it was coming out. Her 'Inner Child' was alive once again.

She also has numerous collectables of "The Little Rascals", a plate, several photos from cards, that she has framed and even the Jello Pudding Pops little figurines of Spanky, Alfalfa, Buckwheat, Darla and Pete the Pup, who was a Pit Bull, for those of you who were not aware of that little trivia.

Brenda also has a book: "The Little Rascals": The Life and Times of Our Gang by Leonard Maltin and Richard W. Bann, describing each episode in depth. It's a great resource for all things: "The Little Rascals." BOL

Brenda was given a pixie doll by her family doctor, when she was in the hospital, during the fourth grade with bronchial pneumonia and measles. She still has it sitting in her living room. When her doctor turned ninety years-old, her mother and Brenda sent him a birthday card. Brenda's mother said, "You be sure and mention that you still have that doll." Brenda was planning to. That is where her mother and her always thought alike on so many things. He died shortly after. He had that awful Alzheimer's Disease. What a kind thing to do for a little girl, who was so sick. She tells me that she had a fever of 103°. That reminds me of a song. Any Foreigner fans here? BOL

Brenda had a wonderful experience a couple of weeks ago. She was involved with a professional photo shoot. She had no idea what would happen during this shoot and that good old Trevor here, would be included with some of the shots. They didn't choose any with me, but it was fun to be included. The photographers enjoyed getting to know me. BOL

This was for a project: MyStory with HealthCentral, where Brenda shared her RA Story and then to augment the text of her story, they recorded her voice and a little sound bite was created. The photos are smashing and they really tell the whole story. I was so proud of her that day and she had the time of her life.

They even went to the capitol grounds and out by the river. Her greatest joy was being able to hold her framed photo of her book cover, showing that she was a contributor to the Grief Diaries: Loss of Health book project. We would like to share this with our readers.

Here is the link to that wonderful finished package:

Brenda is now working on several other projects, but writing is one of her greatest joys. It makes her feel like that child again, who got to watch "The Little Rascals" after school.

We hope you have enjoyed this tale. Brenda and I have been wanting to do this for a long time, but we had to wait until the time was right. Brenda is a big believer in timing.

This is Trevor, leaving you with a little bone. May your 'Inner Child' never grow up.

Friday, October 16, 2015

A Tale of Fitting In

Trevor here again, with another tale to share with you. Brenda will once again be sharing from her heart. She has a lot to get off of her chest and writing is the best way, to gradually peel off all these layers of self-doubt, feeling excluded and just not fitting in period. Something she knows is overrated. I will now let her share.

Thanks again Trevor, for that wonderful introduction. As a bit of background, I came from a family of 5 girls. I am the youngest and have always felt, like I never quite measured up. I was the sickly child who struggled in school, almost having to repeat the 4th grade, because of so many days missed. I ended up with bronchial pneumonia and landed in the hospital and broke out with the measles. The only thing that saved me from not having to repeat that grade, was the fact that by some miracle, I was able to keep up with all of my homework. I had a really great teacher that year, who made learning so much fun. She was actually the one that picked up on my reading comprehension problem and made sure that I got the extra help that I needed. At the time, I was not happy that I had to go to another room to do what I thought were odd things, but I was a child and didn't understand that this was actually a way of helping me with my reading skills. To this day, I love to read and I have that wonderful teacher to thank for her caring enough about me, to get me to that learning skills room, that I hated so much in the beginning. I also had to go to summer school, because I struggled with math. Years later, I ended up working in the Accounting Department at the clinic where I am employed for nine years. I was told that I did a good job and I learned much from that experience. I also feel that I am really good when it comes to managing my finances. Again, thanks for that summer school and the flash cards, books that my parents purchased, so I could practice. I disliked it at the time, but in the long run, it was good for me.

So, I have always felt like an outsider and I also could sense when someone else was struggling. Call it a sixth sense, if you will. I didn't realize that I did this, but was told years later by a fellow student, that I had stood up for him. He was shy and I could understand a bit of what that was like, as I was shy too. You may find that hard to believe, but I was.

My activities in school consisted of music, as I loved to sing. I took voice lessons to help develop my first soprano voice. It ended up being a terrible experience and in my senior year of high school, I quit, as I did not want my parents to waste their money. I was no longer enjoying them, as I had the previous years. I don't read notes, but I have a good ear. The teacher was trying to teach me to read notes and I just became so frustrated and it seemed like I was never good enough. It got so bad, that for at least a year, I would not sing in public.

I finally just started performing again, mainly in church settings. I did solos mostly, but I was also in the choir. When I was diagnosed with RA, it became real difficult to stand for long periods of time, but I did, because I loved singing. RA was not going to take away what I loved. Eventually I did have to quit choir, but I did a solo now and again. As time went on this church thought that they had to have only the professionals sing on Sunday, so even when I would offer to sing and was told that I would, it became less. I finally did my last solo and that has pretty much been it for singing in churches or for that matter, even attending a church. Since my brain surgery, it has become impossible to even entertain the idea of attending church. I went to a funeral once after and almost had to walk out, as the organ was really getting on my nerves. As I mentioned in my previous blog, loud noises or high pitches, almost send me to the ceiling. If I am home, I have the luxury of turning down the TV. Someone actually suggested that I wear earplugs to church. Not going to happen.

I really don't sing much for anyone, except in the shower or if I am listening to music. Music has always been an escape for me, when things were just too much to handle at times. I really believe that my RA was kicking up for years before diagnosis. I remember being so fatigued in high school and having terrible leg pain at times. Of course, you think it is growing pains.

I almost ended up dropping out of college, because it was really hard for me. I was in the clerical/keypunch program. It was a hard program to get placed and I found it even a harder challenge to complete, but I did. Not with the best grades. I had to drop my accounting class and go back to beginning, which I should have done in the first place, but my advisor was just sure I could handle it. I even tried a tutor. Here I was in college and did not feel like I fit in, just like when I was in high school or even further back in grade school.

I did graduate but I did not go through the ceremony, as I still had to complete summer school, as I was a credit short, because my advisor failed to let me on that little detail. I still find that in most situations, I am left out of the loop. I am just going to jump ahead here. I felt you needed some background, so you got a sense of where this was going.

I have always had to work very hard for what I wanted. I have lived on my own, since I was 21 years old. Got my first apartment and had to move out of that one, because the clinic where I was employed at the time was building a new clinic, right where I was living. Again, they didn't bother to tell me. Out of the loop again.

This fitting in business is overrated, as far as I am concerned. I have always marched to the beat of my own drum and I do things, my own way and what works for me. I know that can clash with some, but as I have gotten older and even a little bit wiser, I just don't let that bother me.

I do a lot of things alone. Spending holidays is probably the worst for me. I did that even before my parents both passed away. I would spend the early part of the day with them and then I would have to spend the rest of the day alone, as they were invited to one of my sister's for the rest of the day. You see, I was not invited. Yes, I was even excluded when it came to family. I have no contact with her, as it has been almost 8 years, since I have seen her. It was her choice, but for years I agonized about what had I done? Later it eventually happened to all of us. I just came to the conclusion, that it was her problem, not mine.

For those of you who have your family members, count yourself fortunate, because it can all change in an instant. I found out about a family member dying in the paper. I kid you not. I had people contacting me, asking me what happened. Imagine, how you would feel? Once again, left out and still to this day, do not know the exact details.

I also mentioned in my last blog post, that I lost friends, because they could not accept my new normal. That is on them, but it doesn't make me feel any less lonely at times. I have tried to reach out to people in the chronic illness community. I have found that quite challenging. I am the type of person who tries to stay positive, as that is my way of coping with RA and all the other things that I must continue to face.

I feel like I am left out of the loop so much of the time. I give my whole heart and soul to anything that is put before me. I just would appreciate the same consideration. It doesn't seem like too much to ask. Also, if I am questioning something because I don't understand or grasp it, please do not assume, that I am angry. I am just trying to understand the situation. It takes me longer, as I do struggle with comprehension once again. History really does repeat itself in strange ways.

I was so happy to be included in a new project recently. I look forward to working and connecting with some new friends. It has been my dream to develop a small network of friends, from which we can encourage one another. I have no one locally, who truly understands my living with RA or being a BT survivor. That is where social media has been a real help for me. I'm not however, on Twitter and that is not going to change. I know for myself, it would probably be too frustrating for me. I know my limits and what my brain can take in. That is all part of self care. You do what works for you.

I've had to make some things happen and that is okay. I was very glad to have the clinic share my essay, but I had to take steps to make sure that happened. I have my own method of how I approach advocacy. Having grown up in a small area, I personally like that connection you make, and then you share your story.

I've had a lot of struggles to work through, but every day I fight to make a difference. I know I may never be a part of an elite group, but I will always remember where I came from. So fitting in, again I say is overrated. My mother always told me, "Do what is best for you." Sage advice to end this tale.

Sunday, October 11, 2015

A Cathartic Tale

Hi, it's Trevor and I am going to be introducing this tale, which Brenda will go on to tell, in her own words. A lot has been going on in Brenda's life and there are some events and experiences, that she will be sharing. Some of what she will be sharing is very difficult, but as the word cathartic means, as an adjective, "Open expression of emotions." That is what you will see here folks. After she has written this, I hope you will still have her back. I know the people who do. This blog post is actually coming out of a recent broadcast of Brain Tumor Talk: Worldwide Radio Show. It was time to finally bring this all out in the open. Frontal Lobe Syndrome is a real thing and can be really scary, when you have no idea what is going on. With that, I will let Brenda share from her heart.

Thank you, Trevor. As some of you know, I had a meningioma brain tumor removed on September 8, 2008. The location was the right frontal lobe, and this is my reason, for finally bringing some events out in the open. I know that some of you will be able to relate and even feel a sigh of relief, that you are not the only one going through this. I hope that is true. For some, it is going to be very hard for you to read some of this, as you have not been through this type of trauma. Yes, having had brain surgery is trauma. The right frontal lobe is considered the high functioning level or 'White House' of the brain it is very important. Having had a brain tumor to this location, can cause someone to cry or become angry, more easily. I had this experience about a month after I had had my craniotomy and it scared me to death. I had just finished seeing my neurosurgeon for my first post-op visit and was being sent for another CT. When they were trying to inject the dye, something they were having difficulty with, I burst into tears. The tech felt so bad and thought she was hurting me. That is not why I was crying. I started sobbing and I realized at the very moment, that this whole experience of having had a brain tumor removed, had finally hit me. She handed me a box of tissues, and I just kept crying.

Another thing, I didn't even realize that I had actually had a brain tumor, as it was only referred to as a mass, tumor or meningioma, so imagine my confusion, when I finally came to that realization. That is another thing about this new normal and yes, that is what I call it. I get confused very easily. I sometimes get details mixed up and it has caused, some people to get annoyed with me. That is why when something is explained to me, it takes me a little bit longer to grasp it. Hence, that is why I refer to this as trauma or an injury to my brain. We refer to this in the brain tumor community as... "Brain Surgery = Brain Injury" I believe it to be true.

The thing that has hurt the most on this journey is that some people who had been friends, for years and I use the word had, because they are no longer a part of my life, because they simply could not accept my new normal. I was actually told in a room full of brain tumor survivors, by someone who I had stood by for years, that I had an ugly personality. They went on to say that I used to be so happy go lucky. Mind you, my mother was in a nursing home dying and I was sporting an air cast, because I had a torn tendon in my right ankle. I also got very sick during our flight and was very disorientated after. So excuse me, if I wasn't all happy at that moment. This was supposed to be a fun weekend for me, to be able to be with other brain tumor survivors, but instead it ended up being a horrible experience. I wanted to just get out of my chair and leave the room, but since it was a meet and greet, I just got up and went to mingle at another table. Of course I have changed, but I really didn't realize that until I started to take notes of what my life was like, one year prior to having this brain tumor discovered. My father was losing his battle with Alzheimer's and I was not handling life very well at all. I was in my doctor's office and they took my blood pressure and it was sky high, which was very concerning to my doctor and I burst into tears. Something I do not do in public very often. I started to talk to my nurse and told her this had been happening. It was decided that I needed to start on something that would help. Let's just say, that it took away all of my ability to feel. I didn't shed one tear at my father's funeral. I am sure some thought, that I just didn't care. I was that numb. I eventually got off of the medication after six months, because too many things were going wrong. My neurologist told me if I stopped taking the medication, I would start to feel bad again, but he also told me that having a head CT that day, would probably not be in my best interest. Look where that got me? That was one year prior to having this brain tumor discovered.

My head pain just keep getting worse the next year. Yes, I had had a prior head trauma and never did anything about it. I would not recommend this to anyone. I asked for a CT and I was told that if they find nothing, we would be done. This statement still angers me, but I have to tell you that I did finally make peace with the doctor who said it. I forgave him, but I will never forget it. There is a big difference.

As you know they found something on that CT, which I was sure they would, just not a brain tumor, which was confirmed by a MRI.

One of the biggest things that has occurred on this journey is the fact that I feel more deeply or have more empathy. It can be a blessing or a curse. If I see someone I care about being wronged, I will step in and do something about it. I have been told that I have always been that way. I know that it has even become much more of a stronger emotion.

I have also been told that I am negative and nothing is ever good enough for me. Again, the person who made this statement is out of my life as well. I also sat and cried with this person many times, for all the things they went through. I had to listen to the same thing over and over again, because they thought they had to tell everyone, they came in contact with. It became very wearing and this was before my BT diagnosis. I also have lived with RA for over twenty-four years, so I was dealing with a lot already. I even had to tell them once early on in my diagnosis, that I was the only one who would decide who to tell, as I was still trying to get used to living with RA, Clearly, that just went over their head, because the excuse was that it could help someone else. I wanted to get myself on some kind of path of semblance, before I could even think of helping someone else.

I face a lot of things alone. It's just easier that way. I have reached out to a few people, who I can trust, but for a long time, I had serious trust issues. I had thought that I finally found someone, who I could confide in, only to find out that they were telling all of my issues to others. That is not cool.

I know we all have problems, but it seems like it is okay for everyone else to vent and when I did or even do now, some will jump down my throat. That makes for not wanting to share with anyone.

Yesterday, was probably one the worst days of my life. The day before was not that great either. I have been facing isolation and exclusion. It seems to happen, when I want to be a part of something.

I work very hard at trying to fit in. I don't seem to very much in the chronic illness community. I am the one who is still on their first biologic and has not failed any others. I did however, fail many medicines prior to that. It took me almost 10 years to find the right medicine to help. The damage has already been done to my hands. My first 10 years of living with RA was pure HELL at times and all this time, I was walking around with a brain tumor.

When my sister passed away, my father dying of Alzheimers, my high blood pressure, my short temper, all the while not knowing that I was walking around with a brain tumor.

One of the first visits I had with my new PCP after I had had my brain tumor removed. He asked me if I was depressed? I said no, but that I can cry for no reason. He told me that was perfectly normal and eventually even got me off of my blood pressure medication, because he believes the BT had been the cause. It made sense, because I had had a lot of nose bleeds as well prior, that I found out after, could actually be a sign of a brain tumor. I said could.

I am very aware of my frontal lobe syndrome issues. It just hurts when I put my whole heart and soul into something and it gets ignored or barely even gets a mention. I work hard and as a result of having had this brain tumor and also living with RA, I have very little energy at times. I do manage to work full time and I am very proud of that.

I still deal with constant nausea and motion issues. Yesterday, was one of those days. I spend a good part of it in bed and turned all the phones off. I didn't have a vertigo attack, for which I was thankful, but it was still a rough day. It's on those days, that I just want to stay away from people, because anything I say or do, will probably end up not being good.

I get real disorientated very easily, as my sense of direction is pretty much toast since having had brain surgery. If you talk too fast or loud during a conversation, it can easily get on my nerves. High pitched noises almost send me to the ceiling. I feel much more and I am not going to apologize for that, ever!

I care about others and want to make a difference. I need to be allowed to do it in my own way. What may be easy and a snap to you, takes me more time to figure out, as some of my comprehension skills have been affected. I did however, become creative and writing has become a big part of that. I haven't been doing so much lately, but I believe that is going to change.

All I ask is that you give me a little understanding. I am doing the best I can. I cannot help that this happened to me, but I am trying to turn it into a positive. Hope, is what I cling to every day. Without it, I think I would have given up long ago.

I don't have family members close by, so I really have to face all of this alone at times. Holidays are not easy by any means. I want to thank those of you, who have allowed me to vent and share my heart with you, this year. I only hope in the future, that I can do something for you.

This was very difficult to write, but I hope it will give you a sense and know, that frontal lobe syndrome is real. I am still Brenda, just different, when it comes to coping skills.

Saturday, April 25, 2015

Tale of a Certain Age

Hi, it's Trevor and we realize, this is our first blog post of the year. Brenda and I have been busy, with life in general. She has had some great things happen and also a few medical challenges.

We will touch on some highs and lows, before we get to our tale. Brenda was asked to be a guest on Rick Franzo's radio show, Brain Tumor Talk: Worldwide Radio Show back in February. She had the time of her life and Trevor here, got quite the mention. She had an opportunity to not only share her brain tumor journey, but was also allowed to share about her living with rheumatoid arthritis (RA) and her work with CreakyJoints and Christine's Kids, where I am their MASCOT. The reason she was allowed to share both, is because her creativity: writing, having me as part of her life, was a result of her having her brain tumor removed. It changed her life.

On to her medical challenges. Her teeth once again have been giving her problems and the result was 2 extractions, one of which was a recent root canal. It has been determined that root canals will no longer be a part of Brenda's life, as there just seems to be something about living with inflammatory arthritis and the pain that is not worth keeping teeth, that have and could again become abscessed and infected.

On with our tale. Brenda turned 55, on January 9th. Age has never been a problem for her. In fact, her new tag line has been: 55 and Fabulous. She does not look her age and she is told that all of the time. The problem she has been experiencing is how some who are younger, can sometimes make you feel like you don't know as much. Let me tell you folks, with age comes WISDOM and maybe a few gray hairs, which again does not bother Brenda. She had a conversation with a very wise person who told her that having gray hairs was a sign of WISDOM. They should know, as their hair is white, just like her Mom's was. It seems that this trend is also becoming a fashion statement. Brenda is just happy, that hers is natural. BOL This blog is also the result of conversations, that she had this week, with 2 very special ladies, that she admires very much.

Brenda works in many different capacities. She has a full-time job, which she really enjoys. She has worked in the medical field for well over 30 years, so she is comfortable and has been told on countless occasions, that she is very knowledgeable by several on her medical team. That is one of the reasons she became a RA patient advocate, because of her background and now she was ready to go to the next level of speaking out. This has continued to evolve with CreakyJoints, as she also has joined 50 State Network and became a Regional Outreach Manager last year. She is also the editor of the Poet's Corner (& Artists too), where I also have been sharing my Barks of Gold. I have been told that I will be having a bigger part, as to help alleviate the load for Brenda. Always happy to do my doggone best, so I be sure and get my bones. BOL

Although Brenda enjoys doing this type of work very much, there seems to be a divide or a split in the chronic illness community. People approach living with their illnesses in different ways. Brenda has read your various blogs and how you choose to deal and now, we are going to share our perspective, on how we approach it.

Brenda has had countless setbacks happen. The loss of family members, The reason she does all of this, is because of a promise she made to her Mom while she was dying, to live her life and grab what she wants. She had no idea what that meant. She really thought her Mom's death would destroy her and it very well easily could have. She was fortunate enough after several months, around the holidays of that year, to see an opportunity to get involved with something, as simple as sending in a photo of your hand. She was so excited to be a part of something, that may seem of little or no significance to you, but it meant the world to her. She was contributing.

When asked last year, if she would like to become a Regional Outreach Manager for CreakyJoints, as she was also told, that it would be a great fit with the Poet's Corner, she jumped at the chance. She has enjoyed it, as this is right up her alley, being able to communicate to others, meaning those who live where she does. Most people she works with, are aware of her RA and working in the medical field does have its advantages. As far as the technology, she has adapted well over the years. She works on the computer all day at work, scanning documents into patient's charts, as their clinic went electronic several years ago.

Now to elaborate a bit on the divide that I mentioned above. Brenda approaches her living with RA with positivity and trying to make the best of things. I really want to go into her Sunshine Saturdays, but we will leave that for another post. Basically a day when Brenda sets aside to have a day of positivity and make the best out of any given situation. She has had 2 so far and they have been quite amazing.

I am really getting off course here, as I was explaining about this divide. This is where the age of experience comes in. No matter how long we have lived with our chronic illness, it is something that we probably will have to deal with lifelong, so why not try and make the best of it? Sure, Brenda has times when she is really feeling attacked by her body, but that is when you take the time to rest. She feels it is counterproductive to talk about it 24/7 and every time you meet with someone. There is a time and a place. Having grown up as Brenda did, in very modest circumstances, she realizes that there has to be a work around some things, to help make them easier. She didn't have the latest and greatest of things at her disposal. She tells me that if you wanted something bad enough, you had to work for it. You appreciated it more that way. That is why Brenda appreciates all that has been bestowed upon her, and that means even her illness. Yes, you heard that correctly. Living with RA and also her brain tumor journey have become blessings for her. I don't think if she hadn't had the experience of a brain tumor, this blog would not be in existence and neither would good old Trevor, here. BOL

Brenda has just as much to offer as anyone who is younger or thinks they have the world by the tail. Let me tell you this in all seriousness, respecting your elders or those who possess WISDOM, is one of the greatest things you can do. She remembers a man she knew years ago, that would say how much he enjoyed being around those who possess this type of WISDOM.

Brenda still enjoys going to rock concerts. She is going to one next month and is so excited. She recently got herself a DVD set of The Little Rascals, which she has been enjoying immensely. She hopes to always possess that INNER CHILD, but she also has been endowed with WISDOM, so don't count her out just yet.

Even though she does work with people that are younger than her on many projects and even her work, she does ultimately REPECT them.

Brenda has always been the type of person who is willing to learn new things, but she finds that she does not need to know everything. That is what makes us unique and why would we all want to be the same anyway? Would make for a pretty dull existence, now wouldn't it?

So for those of us that are of a CERTAIN AGE, bask in the WISDOM and enjoy your education and for those younger, learn from the former, as you one day will be there also.

That's it for this time. This is Trevor, The Tell Tale Dog, wishing you PEACE & UNDERSTANDING.

Sunday, December 21, 2014

A Tale of Helping Others

Trevor here, once again. It has been many months, since we last updated you. Much has been going on in Brenda's life. Some good and some, not so good. We want to bring out here, that even in the not so good things that have occurred, she was able to get through those, because of help from many kind people.

That is going to be the premise of this blog post, helping others.

Brenda went through, what we have referred to, as a year of medical challenges. It started out with a colonoscopy, where they found something not quite right, so they biopsied. Her surgeon, who is also a friend, just wanted to make sure they were not missing anything. He cared enough about Brenda, to take that extra step. We are happy to report that it turned out to be nothing serious, but being cautious is always a good thing particularly, because there is a family history.

Next was her saga with her teeth. We touched on this before in another blog, which you can check out. 'A Tale of 2 Teeth' She recently had a root canal, but again, she had someone who knew the urgency of this problem and it was taken care of promptly.

She did land in the ER with a sudden attack of benign positional vertigo (BPV), which scared her, because she didn't know what was going on. Her heart was racing, so they thought it was anxiety. Now, if you were going through something like this and had no idea what was going on, wouldn't  you be a bit anxious? I would bet my bones, that I would be. This problem has certainly become worse since her brain surgery, and it is just something that she needs to adjust to. She has been doing exercises to help move the crystals that move around in the inner ear, to help alleviate this problem. Sometimes it helps and other times, she just has to take something to get her through it.

She has recovered well from her basal cell carcinoma that she had removed from her right nose, along with a skin graft taken from her forehead. Again, this is all explained in a previous blog post, 'A Tale of a Nose,That Keeps Growing'. She goes back next month for a six month skin check, as her chances of developing another BCC have become higher now. Her dermatological surgeon was great and he couldn't be happier with the results, as is Brenda.

Brenda continues to live with rheumatoid arthritis (RA), but that doesn't seem to slow her down much, as she manages to keep busy helping others. Now, on to our tale. Brenda became a Regional Outreach Manager this year with CreakyJoints. (just love that name, BOL) What this consists of is, brainstorming together with others to develop ways to reach out and make it inviting for others to want to join CreakyJoints and get involved with research, etc. Brenda has been doing her part with talking with people right in her own backyard and trying to come up with ways to be able to share materials and also promoting the Poet's Corner (& Artists Too), where she is the editor. I help out there also, with my Barks of Gold. BOL

She also has been working on Seth's 50 State Network, where the focus is on advocacy. She just wants to be there to help others out, who may be shy about sharing their story. You see, Brenda has done this and as she tells me, it can be so empowering to tell your own story.

Brenda has always wanted to help others. She never has asked for anything in return. I am going to though. Brenda is going through a difficult time right now. It has been a tough year, as you can see from all that she has gone through. As I said though, she had a lot of help to get her through it. She has a great health care team. She also needs friends. It's hard to be isolated and feel so alone. Brenda has done so much for others. At times, her help was not needed or appreciated. That's just how life is, but that doesn't mean she will give up.

This time of year especially is difficult. She has no family that is near by. She has been keeping in touch with her sisters, but they are far away. Christmas will be spent alone, as the past several years have been. This is just a reality. Brenda will however, plan to make a day for herself on Christmas Eve, by going to the mall, as she had done the past several years.

She has also helped out others by giving to various charities. There are some great ones out there. Do your research. Helping others, does really help yourself. It makes you feel good, that you are doing something for those less fortunate than you. This time of season, should be about giving and helping others, not getting. I think, we lose sight of that.

We want to wish all of our readers, a very Merry Christmas and a great New Year to come!

This is Trevor, The Tell Tale Dog, leaving you with this, BE A HELPER!!

Friday, August 22, 2014

A Tale of a Nose, That Keeps Growing

Hello, it's Trevor, The Tell Tale Dog, to share another story of Brenda's life.
In fact, this is actually going to be 3 stories, surrounding the same subject,
her nose.

Brenda had the great pleasure of taking an online writing course that CreakyJoints
(I love that name) offered, taught by author, Lynn Lauber last summer. Here is an
excerpt from that story. This will be in my own words. I hope good old Trevor
here, can do it justice. BOL

Brenda's Mom, had told her this story many times. It seems while she was in the
nursery, the nurses would just stare at her nose, because it was turned up a tiny
bit and thought it was the cutest thing.

Her Mom always thought that her nose was her best feature, and when her deviated
septum was discovered years later, she was afraid of what might happen, to as she
put it "her beautiful nose." It was just a nose to Brenda that apparently got in the
way of a door, when she was in grade school and ended up breaking her glasses
in half. Apparently, she grew some excess cartilage, and that is why she ended
up with a deviated septum.

It was starting to cause sinus issues and bad headaches. The surgery was a success
and all an inside job, so her beautiful nose was still intact. She just sometimes has
problems getting glasses to fit properly because of the excess, that they took from
the bridge of her nose. As for the sinus issues, they came back in full force when
she was prescribed Methotrexate for her RA. Even though she no longer takes it,
her sinus issues remain, as that was confirmed by an ENT specialist. He did say
however, that whoever did her nose surgery did a nice job because it was so nice
and clean.

One thing her plastic surgeon said to her that could happen and it did, was a
perforated septum, which is hard to avoid. He said it would look like someone
who had snorted cocaine. She has 2 holes inside her nasal cavity, that she didn't
realize were there, until it was pointed out by another ENT specialist. You can't
see them unless you look real close into a mirror.

Several months ago, when she went to her PCP, she mentioned that she had this
lesion on the right side of her nose, that just wasn't healing. Brenda knew deep
down, that this was probably a type of skin cancer. She remembers in school
being told that if you ever develop a sore and it doesn't heal over time, it
probably is cancer. She had this for over a year, just thinking at first, that it
was just a deep pimple, and just needed to come to a head and would go
away. That was not the case here. It would bleed at times and was hard to
stop and it looked ugly. So when her PCP said, it looked like basal cell,
which is the most common kind of skin cancer and the most treatable,
she was not surprised.

She was sent to a dermatologist, initially for a shave biopsy, where the result
came back as a basal cell carcinoma. She was then referred to a dermatologist
who specializes in the MOHS procedure, where they take a layer of skin and
then look under the microscope, to see if they got all of the cancer. If not, this
is repeated again, until this is accomplished.

Brenda had the procedure done on August 21st and thankfully, they got all of
the cancer, with just removal of the first layer. She did have to wait about an
hour for the result.

The next step is to repair or reconstruct the area, that the MOHS procedure was
performed on. There was no way they could take any skin from her nose, as
she has small nostrils and it would be difficult to breathe. There were several
options and all of this was explained to Brenda. Those discussed were around
her cheek, and behind her ear. None of these sounded appealing to Brenda. They
discussed her skin tone and wanting to match as closely as they could, so it was
decided mutually, to take from her forehead, as this was a pretty good match,
with regard to skin tone, pores, etc.

Of course this will not be a 100% match, so the surgeon suggested, she use
some type of cosmetic concealer.

She ended up with about 7 stitches and she has to cleanse the wound area
twice a day, as well as change a dental roll, in her right nostril daily.

She is doing pretty well, with minimal pain, which she has pain pills on hand,
to use if needed. She has taken a couple and will for sure at bedtime. She
cannot lift, push or pull, anything greater than 10 pounds for 2 weeks. Only
bending with the knees. She has pretty much everything set up high, so she
doesn't have to be concerned about bending over.

She had a wonderful dermatological surgeon, who explained every step in
great detail. They even shared a laugh or two, along the way.

This MOHS procedure has a 98% cure rate. You really cannot get much better
than that, can you?

This is Trevor, signing off, but before I do, we just want to thank everyone for
your prayers, phone calls, cards and positive thoughts, during this time. Brenda
is going to rest and regain her strength and go on, just like she always does. She
is getting geared up for her 6th Craniversary on September 8th. This blog is a
result of her becoming a brain tumor survivor in the first place, so she has a
lot to celebrate and look forward to.

Friday, May 30, 2014

A Tale of a Brain Tumor Warrior

Hey folks, it's Trevor here once again sharing another book review. This one is
going to be a lot of fun to do. This particular person's book has had a big impact
on so many people in the brain tumor community.

So without further ado, we have a surprise for a very special person. He happens
to think I rock and just for that, he certainly will get a dog bone, I mean a great
review. BOL

The book is titled, How Horseshoes Saved My Life: A tale of two brain tumors,
by Rick Franzo.  Brenda became friends with Rick through his group that he
started, Brain Tumor Talk. Wonderful title isn't it? Anyway, he had been working
on writing this book and asked Brenda if she would like to see a rough not (ruff)
draft? BOL I'm a dog, so ruff would make sense to me.

So she read it and couldn't put it down. She just knew this was going to be a great
book when it was published.

She has spoken with Rick on the phone several times and one time, he asked her
if should would be interested in sharing her story on his new radio program, that
he was starting? It was going to be called, Catch The Brain Wave, another great
title. Of course, Brenda said yes. He actually shared her story not too long ago
and even sent her the DVD to be able to listen to it on her computer. Now wasn't
that kind?

Okay, I know we got a little sidetracked here, but he also sent her the book with
an autograph inside. Brenda always tries to get autographs from authors of books,
if she can. She has quite a collection from others she has connected with on social

This book was pawtastic! Brenda was cheering and even crying as she read it. I
could see, as I was watching her very carefully.

Rick went through so much and truth be told, he shouldn't even be alive. It was
truly a miracle that he was playing horseshoes that day. I see where the luck comes
in, but I really don't believe in luck, but he was definitely at the right place that
particular day.

He had noticed that things were a little off, but you don't normally run to your
doctor for every little thing. I don't even like to run to the vet, for a normal visit.
Okay, back to our story. Anyway, he decided that he'd better go see what was
going on. Never in his wildest dreams, did he think, he would be diagnosed
with a brain tumor.

So he went through the shock and disbelief of all of that. He had a wonderful
supportive family and many friends, that was so beautifully illustrated by all
the kind acts that were accomplished.

We don't want to give the whole story away, but Rick did not come out of the
surgery as he had hoped and actually had to learn to walk again, which he did.

He is a fighter and he is now battling a second brain tumor. Just for point of
reference, he had the same type of brain tumor that Brenda had, a meningioma.
His had grown to critical mass. Sounds so scary, which it was and had he not
been playing horseshoes that day, he could have had a grand mal seizure or
even could have gone into a coma and died.

We are so happy that did not happen. Brenda has been so blessed by Rick's
friendship and how he has helped so many with advocating. He really is
quite the speaker. I got to listen to him on YouTube.

So you see, even though this was a very horrible thing that happened in a
brain tumor warrior's life, he turned it all around. He went through his times
with depression. I think we all would have. He was just showing his human
side and that makes you appreciate him even more.

I would like to offer my congratulations on a job well done and I personally
give this book FIVE BARKS!!!!!

We hope you have enjoyed this wonderful story of a brain tumor warrior, who
I would gladly share my dog bones with.