Saturday, April 30, 2016

A Tale of Isolation

Hi, it's Trevor once again, bringing you another tale. We have really tried to share one a month and so far this year, it has happened.

This time is going to be about something that Brenda struggles with and that is isolation. When you live with a chronic illness or in Brenda's case, more than one challenge, it can be especially hard for some to understand.

Brenda wants to be social and have fun. There are some things that limit her activities. One is the fact that she struggles with benign positional vertigo (BPV) attacks, of which she never knows when one may occur. She hasn't been in an airplane in over five years, as her last experience is when the plane started to take off, her head began to feel funny and she became very sick. It was so bad that they wanted her to go to the ER, but Brenda fought it and rested. It gets better after she has had a chance to rest. Not everyone gets this and it is tiring for her to have to explain it over and over.

She would love to travel, but has come to the conclusion, that it probably is not in the cards to get into anymore airplanes. If only they could figure out what causes these attacks. It is very distressing for Brenda, because the medication that she takes can cause her to become irregular. She has tried going to a balance clinic, but she could not complete the tests, because she became so sick.

Not being able to get together with others, because of this, is hard for Brenda. She feels isolated, as it is. I am here, but that simply is not enough. You need people in your life to survive. She lives alone and that is something that has not been a choice, at this stage in her life. She simply has not met that one person or companion, that she could do activities with, or even go out for coffee or a drink.

Brenda tries so hard to remain positive and that seems to put some people off. It's on them. I encourage her to keep doing what does. She is helping more people, than she realizes. She has received messages asking for advice, so she knows, that others depend on her.

Brenda has limited energy, because of the fact that she lives with rheumatoid arthritis (RA) and is a brain tumor survivor. She has a lot she has to get through every day. She fights and I am so proud of how she continues to walk to and from work. She enjoys it so much.

She just completed another 5k walk the other evening. She even managed to break her record and did it in 50 minutes. That might not seem like a lot to you, but to her, this is one way to kick RA's butt and it is very satisfying for Brenda, to do so.

What we want to bring out in this tale, is even though it looks like Brenda has it all together, make no mistake, that she does become lonely at times. She is trying so hard to get involved and meet others, even if it is only online or a monthly conference call. It is interacting and that means so much to her.

She doesn't feel like she fits in with the chronic illness group, as they are always doing their own thing, and feels excluded.

She advocates for so many, but who really has her back? We are not trying to play the woe is me card here, by any means. We are being honest here with some heavy feelings. That is something that Brenda has experienced, since her brain surgery. Her feelings or emotions are much sharper. It's a brain thing and only those of you who have gone through this, would truly understand.

Even in the brain tumor community she feels isolated at times. Her procedure was not as long and as serious as some of her other fellow brain tumor survivors. She dislikes comparing, because after all, aren't we all on the same team or side?  I would certainly think so.

Tomorrow, starts the month of Arthritis and Brain Tumor Awareness. There are going to be a lot of campaigns out there for walks, contacting our legislators, which is all great. She will do her level best to participate in what she can handle.

Brenda feels like she has to do so much by herself, because no one around here, gets what she struggles with every day. She is thankful for social media and the friends she has made. She would like to be able to make some friends in the real world too, that she could lean on for support.

We are going to leave this time, with a question. How could you help someone, so that they don't feel so isolated, when dealing with a chronic illness? Brenda would really appreciate knowing, how you feel about this.

This is Trevor, barking off. BOL



Saturday, March 26, 2016

Tale of Struggling

Hi, it's Trevor here again, sharing another tale. This time is going to be a bit different. Brenda has been going through some real rough or in my world, ruff challenges, BOL as of late.

Brenda is just recovering from yet another bout of shingles. This makes her fourth time. If you are not aware what shingles are, here is a little information for you. If you had chickenpox as a child, as Brenda did, the shingles virus is already inside of you. It lies dormant for years and usually when you become an adult, 1 in 3 persons, will be attacked by this virus. As we have shared with you before, her first time was the worst. She now knows what to watch for. It still doesn't make it any easier to deal with.

They can really get on your nerves, so has a lot of other things with Brenda lately. She has been isolating herself, except to go to her job or other errands that may have to be attended to. She really has had less energy, since this all occurred. It's hard enough living with rheumatoid arthritis (RA) and also the other challenges, she has to deal with. There were actually others who were not aware, that she has been dealing with this. Brenda is not one to go around and tell every person, whenever she has a problem. She keeps a lot to herself and I encourage her, by having her tell me what she is dealing with, so we can share it here, with our readers. If it can help someone else, that is all that matters.

When you deal with something like shingles, anything can get on your nerves. Take living with chronic diseases for instance. All this talk about people putting notes on people's windshields who use a handicap hang tag in their car, just because they happen to think they don't need it. How would they even know for certain? Not all disabilities are noticeable. Brenda's handicap hang tag is for life, as her doctor at the time, felt that is what she needed. She only uses it when she needs it and no, it is not used just so they can have a convenient parking place.

So the next time you get that look from someone who doesn't think you need this kind of help, take a good look at them. Are they perhaps wearing glasses or even a hearing aid device? All of these things are for the sole purpose of helping out someone with a challenge. Brenda wears glasses and has since the first grade. She knows people who wear hearing aids and wouldn't have the audacity to even question, if they needed them or not. What is the difference? We all struggle in one way or another.

Some of what we struggle with, is not shown from the outside. Even behind our smiles, there is sadness.

If Brenda were to have go back to using her cane again, she would. She wore an air cast for six weeks, back in 2011 and not one person gave her grief. Yes, she was teased at the nursing home and called Hopalong Cassidy, but it was all in fun.

We realize that there are some individuals out there, that take advantage of the system and get these handicap hang tags only for convenience. There are those who pass off their dogs as Therapy and Service Dogs, also, but that is another story. You get, where I am digging here though? BOL

There are circumstances that are troubling to Brenda. One is when someone uses a handicap hang tag, when the person who it was issued to was not in the car. It has happened. Brenda and her mother had an experience one time, where they forgot to hang the tag up and lo and behold, there was a ticket on the windshield when they came out of the store. Brenda felt terrible and would of course pay the fine, no questions asked. Her mother did end up calling and explained that her daughter had a handicap hang tag issued to her. Want to know the proof folks? There is a number that is assigned on each hang tag, which identifies that it was legit. She did not end up having to pay the fine, which was a relief and also a lesson learned. We know you can get these hang tags off of the Internet, but all they display is a symbol of a wheelchair and the word Handicap. Anyone can get those. Brenda had to fill out an application form and have it signed by her physician. Funny thing about these cards, you used to have to pay for them, which turned out, there being a Class Action Suit and she was actually reimbursed, for almost double of what she had originally paid. She now gets them free, as they should be.

Think of any assisting device, there are many. Towel bars, chairs or anything to help you get around safely in your home. Brenda uses a chair in the shower, as she can no longer get into a tub, without assistance. She lives alone, so it is one of those things, you learn to adjust to. Is someone going to come into her living space and tell her that she does not need this chair? No!

It is estimated that 300,000 children in the United States, live with some form of arthritis. There are over 100 kinds, so it is hard to diagnose at times. Many of these children are in wheelchairs, have to uses braces and go through more than a child should ever have to endure. One thing they do not need, is your judgment. Many children are bullied, not teased. We live in a different world today. It is heartbreaking, to hear all of the stories, that these children have to go through. Some of these children are taken out of schools and homeschooled. Imagine the burden on the parents, to not only have to care for their child, but to have to be responsible for their education, because some made it impossible for their children to attend public schools. She has read and heard of stories where the teachers treat these children, as if they are faking. It makes Brenda's blood boil. Brenda dealt with an injury in third grade, where she tore some ligaments in her left knee. She was encouraged to help her strengthen it, by participating on walking on a plank. At the time, Brenda did not like this, but she has realized after all of these years, they were there to help. Never in her wildest dreams, did she think that she would be diagnosed with RA at the age of 31. She was told that she would probably develop arthritis in that knee, when she became older. It's been giving her problems again, since this whole saga of shingles. You see, she would could not take her biologic while there was any sort of an outbreak, so her RA has taken off with a vengeance.

We appreciate all the kind words and messages received, during this difficult time. Brenda is going to need some time to heal. She is not feeling very social right now, so please we ask, that you do not take it personal.

This is Trevor, until next time, barking off. BOL


Saturday, February 20, 2016

Tale of Manners

Hi, it's Trevor here on National Love Your Pet Day, sharing another tale with you. This time, we are going to explore manners. What are they exactly? In a nutshell, please and thank you, being the pivotal ones. We want to share, that there is a lot more than meets the eye, when it comes to manners.

Brenda wants to bring out that how we conduct ourselves is as important, than what we tell others. Actions speak louder than words.

Brenda has encountered some situations that are distressing at best. We know that sometimes, we are never going to receive that thank you, for something we did. In the case of an all expense paid weekend, I would have certainly got down on all four paws and thanked her. BOL

Brenda realizes that ship has sailed or sunk, however you want to look at it. She has chosen to move forward. We do want to share though, that you are never too old to possess manners.

When Brenda was a child and she would receive a gift from her maternal grandfather and aunts, she was prompted to sit down and write a thank-you note. That is what you did. Don't you write thank-you notes for graduations, weddings, or baby showers? Why should anything else be different?

Please and thank you, are two of the most important ways of showing your appreciation. Using please will work a lot better with the other party involved, rather than being demanding. I love the reference that we are going to use from our friend Christine Schwab about being a "Gentle Bulldog." That means that you approach what you want or need with kindness and not anger.

Brenda recently went through that with her insurance company. She will no longer be able to have her biologic dispensed at the same pharmacy that she has used for years. She wasn't even sure she wanted to share with them, because she felt so bad. You see, they have been so good to Brenda. She is glad though that she did. They even tried to go to bat for her, and they will continue to. She has a good relationship with them and she kept her cool, while she was explaining what a huge hardship this is going to be, to have to walk several more blocks each month, to pick up her biologic.

As our readers know who follow this blog, Brenda has lived with Rheumatoid Arthritis (RA) for almost twenty-five years. Shouldn't you be making things easier for those who struggle with walking at times, not harder? She shared this also as a patient advocate for 50 State Network with one of the people she works with. She is truly frustrated. There again, she remained the "Gentle Bulldog."

We kind of like this reference, because Brenda's father was often referred to as a bulldog and that he would not give up on something. Brenda is like that in a lot of ways. I think that is what keeps her from giving up so easily and fighting for her rights.

She recently took a company to task online and we are happy to report, that the claim was ruled in her favor. Again, she remained the "Gentle Bulldog." Being a dog myself, I think that reference is pawsome. BOL

Brenda walks to and from work many days. She has made friends with a cyclist who always yells "Good Morning and have a great day!" Brenda always tells him to be careful, as some of those days the roads were quite icy. She didn't see him so much this week, as maybe their schedules were different, as Brenda had to allow more time to walk with her ice treads.

She had an experience coming back from walking to her bank this week. She made it there in one piece, but she was quite shaken by the time she arrived, as it was so icy. What was she thinking? She started out toward walking back to her place of employment, and this nice lady offered her a ride. She didn't hesitate, because she was in an area that was safe and it wasn't that far. She had a nice conversation with this lady and turns out, that she knew her husband. When she dropped her off, Brenda turned to her and said, "Thank you and Bless You." She was amazed how well this all turned out. She got her business done and also ended up meeting this nice lady.

Brenda realizes that even in advocacy that we all need to work together. She takes nothing for granted and if someone does something for her, she thanks them for it. That is what you do.

If she has a conflict with someone or needs to get something ironed out, she prefers to have a conversation with that person, to try to get things worked out. It is very hard to work with someone, when you feel that you or your ideas are not valued. Sometimes it can be a misunderstanding or that something needed a bit more of an explanation.

You see, Brenda is also a brain tumor survivor, and sometimes gets details mixed up. It also takes her longer to grasp certain things. Please be patient. Notice I said, please. BOL

I am so proud of Brenda. She has been writing a lot lately and really enjoys it. I try and do my part by sharing my tales here and giving her a break. BOL

I have been her storyteller and helper for over five years. How can that be possible? I enjoy putting these tales together and we make a great team. I am one lucky dog and she is so good to me.

This is my way of thanking her for all that she does, by trying my hardest to share with all of you, that Brenda is only human.

So the next time somebody does something nice for you, don't forget to thank them and while you are at it, give them a big smile.

This is Trevor, saying please be kind and thank you, for letting us indulge you, with this tale.

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: http://www.healthcentral.com/storytelling/mystory/entry/569901122f896b617bf08a60


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 ...so 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.