TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘TBI Survivors’

SPEAK OUT! Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

Itty-Bitty GIant Steps for Blog

 

 

SPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.

If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at donnaodonnellfigurski@gmail.com.

If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your last name to be posted, please tell me in your email or Private Message.)

I hope we have millions of Itty-Bitty Giant Steps.

 

Lisa Parker

 

Lisa Parker (survivor) … I went to Al-Anon with my mom last night, and it was gr8!

FocusGroup-ridgetopvirtualsolutions

 

 

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(Photos compliments of contributor.)

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Survivors SPEAK OUT! . . . . . . Deb Brandon Ph.D., Author

Survivors SPEAK OUT! Deb Brandon Ph.D. and Author

presented by

Donna O’Donnell Figurski

 

Deb Brandon 1

Deb Brandon, Ph.D. Brain Injury Survivor Author of “But My Brain Had Other Ideas”

 

 

1. What is your name? (last name optional)

Deb Brandon

2. Where do you live? (city and/or state and/or country) Email (optional)

Pittsburgh, Pennsylvania, USA     deb@debbrandon.com

3. On what date did you have your brain injury? At what age?

March, August 2007     I was 47.

4. How did your brain injury occur?

Brain bleeds and subsequent brain surgeries

5. When did you (or someone) first realize you had a problem?

In the spring of 2006, I had some fleeting symptoms (dizziness, poor balance, vertigo, tingling in my arm). In September 2006, I mentioned them to my doctor at my annual check-up. She sent me for tests, including a brain MRI (magnetic resonance imaging). I was diagnosed with bleeds from cavernous angiomas (tangles of thin-walled blood vessels in my brain). The following spring (March 2007), I suffered from loss of hearing and experienced a seizure. That night, I came down with the worst headache you could imagine, which was when I realized I’d suffered another bleed (confirmed in the Emergency Room).

6. What kind of emergency treatment, if any, did you have?

I had a CT (computerized tomography) scan, which was followed by an MRI in the Emergency Room. I was then hospitalized for a couple of days, during which time they did routine tests.

7. Were you in a coma? If so, how long?

I was not in a coma.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

Deb Brandon Surgery

Deb Brandon, Ph.D. Brain Injury Survivor Author of “But My Brain Had Other Ideas”

After the acute bleeds in the spring of 2007, I underwent outpatient physical therapy to help me with my pathetic balance. After the two brain surgeries to remove the bleeders (the only known treatment for cavernous angiomas), I spent a week in inpatient rehab, at which time they worked on my balance, problems with my eyes [nystagmus (rapid, involuntary movements of the eye), double vision, and weakness of muscles in my left eye], and I had occupational therapy. At the end of that week, I suffered a seizure, which led to a third (emergency) brain surgery. I never underwent rehab after that, except for stuff I was doing at home (video games for the brain, exercise).

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

I have problems with balance, memory, attention span, sequential thinking, vocabulary access, and task initiation. I also suffer from vertigo, paranoia, debilitating fatigue (which exacerbates all the other symptoms), crippling headaches, sensory overload, seizures, anxiety, severe depression, and (occasional) suicidal ideation. There’s probably more, but I can’t remember right now. 🙂Droopy Flower

10. How has your life changed? Is it better? Is it worse?Life is hard

My life is harder, but much better.

I divorced my husband. My relationship with my daughter (13 at the time) suffered (although over the last couple of years, we’ve gotten closer), but my son (15 at the time) and I got closer. I am a professor at Carnegie Mellon University, and I went back to work full-time two years after the surgeries. I am a mathematician. Afraid to mess-up in the classroom, I stuck to teaching the lowest level classes we teach – calculus for the humanities students (which I came to love and now teach on a regular basis). But, several years later, I found that between fatigue and headaches, I had to cut back on my teaching load.

On the other hand, in addition to the losses I suffered, the “bloody brain” (as I refer to it) led to some wonderful gains. From a socially awkward mathematician, I became better able to connect with people and formed deeper bonds. I am much more outgoing. I now have a supportive and caring community around me. I became a much better teacher, and, whereas I liked teaching math in the past, now I am passionate about it. I also discovered a new passion – writing. To better understand my experience, I started writing an account, which later grew into a book (“But My Brain Had Other Ideas: A Memoir of Recovery from Brain Injury”) that I hope will reach as many people as possible to raise awareness of brain injury. From a journal writer, I became a published author of a book I am proud of. I figured out that I was a lesbian, a realization that filled a hole I hadn’t been aware existed.

Deb Brandon Book, But My Brain Had Other Ideas

“But My Brain Had Other Ideas”

I’m more aware and self-aware. I’m a more authentic version of myself, more me. I’m more comfortable in my own skin. I am a better person. I’m more empathetic – more willing to reach out to anyone who could use a shoulder or a hand. I’m a much better listener.

I feel that the gains far outweigh the losses. I wouldn’t want to repeat the experience, but I don’t regret it. It brought me to where I am now.

11. What do you miss the most from your pre-brain-injury life?

I miss my daughter’s uncomplicated love, though we are heading for a closeness. I miss being able to multitask and being more productive. I miss having no issues with sensory overload, seizures (though those are mostly under control now), and horrific headaches. I really and truly don’t miss them, though. I like my life now much better than my past life.

12. What do you enjoy most in your post-brain-injury life?

(See my answer to question 10.) I enjoy my environment, teaching, deeper connections with people, forming and reforming new connections, and writing. I also travel a lot (much more than I used to) – both inside the US and abroad – despite the fatigue it causes. I refuse to give in too much to the bloody brain. I want to LIVE.

13. What do you like least about your brain injury?

I don’t like my fears of repeat bleeds (from my remaining angiomas) and subsequent surgeries, anxiety, and depression.

14. Has anything helped you to accept your brain injury?

My life is fuller now – my relationships, my closest friends, i.e., our interactions no longer revolve around the bloody brain. My depression and seizures are pretty much under control.

15. Has your injury affected your home life and relationships and, if so, how?

Because of issues with fatigue, in many ways I live like a hermit. I very rarely have a friend over, and I rarely attend social occasions. I often have to hide in my bedroom to avoid sensory overload. As a result, my casual relationships are more virtual much of the time. My closer friends understand, and, if we do get together, we choose quieter settings. They know that, when fatigue strikes, I have to leave (or they have to leave). A couple of close friends are always there for me. My bonds with those friends are very strong – stronger than they were before. (See above for more details.)Fatigue

16. Has your social life been altered or changed and, if so, how?

Though I have firmer connections with people, my social life is fairly minimal because of issues with fatigue. I have to pick and choose. However, I make more of an effort to accept invitations – mostly by past and current students. I have no interest in socializing with colleagues. Most don’t really understand my issues. And life is too short.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

A good friend, Joyce, is very important to me. She helps me clean, cook, and do laundry. She also provides better judgment – for example, insisting I rest when I’m falling off my feet or making sure I have everything when I travel. When I wasn’t allowed to drive, she acted as my chauffeur. When she goes away, I flounder after a month – I’m too tired to work and maintain a normal household.

18. What are your plans? What do you expect/hope to be doing ten years from now?

Even after the reduction in my teaching load, working is rough, though I enjoy it very much and love the challenge. In the distant future, I expect to spend time writing and (public) speaking about brain injury.

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

  1. There is one issue that took me a few months to understand and a few years to effectively address it. Even now, I sometimes slip-up. I have trouble dealing with high volumes of incoming data, whether sensory, emotional, or cognitive.

When it comes to sensory input (noise, crowds, bright colors), I try to avoid difficult situations (parties, sports events). Also, if I find a focus, an anchor (which can be the voice or touch of a person I trust), I regain my faculties. Unfortunately, that’s not always possible.

Emotional stuff is tougher. My damaged filters have mended to a large degree. I manage, but ultimately, you feel what you feel.

Cognitive input (when reading and listening): I have learnt to chunk it down – for example, work to absorb one line at a time. This has been useful in my teaching. When students have trouble with word problems, I show them how to address each chunk separately, and only then do I ask them to connect the dots and fill in the gaps to solve the problem as a whole.

Until I learned how to manage overload, I often ended up having a meltdown.

  1. Another issue that I didn’t identify as a symptom of brain injury for the longest time was task initiation. Though the end-result is the same, task-initiation difficulties are very different from procrastination. They feel different. Before my neuropsychologist explained it to me, I assumed I was managing life inadequately.

I explain it as follows: When you’ve just finished a long and involved project, it feels impossible to start the next project. In the case of brain-injury-related task initiation, there is nothing obvious that seems to be the reason behind it. It can strike randomly, and it can last anywhere from days to years. But, once you get started on the task, life is good, and you’re off and running, as if there never was a problem.

  1. A sometimes-effective strategy is as follows: When you identify a problematic task, put it on a daily task list (which has no more than two items; otherwise you’ll become overwhelmed and freeze). Then block off time for each of the two tasks on your calendar.

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

I found that neurosurgeons consider brain surgery a success, i.e., if you’re not dead or in a coma, life is good. Neurologists only seem to care about the physical symptoms (balance, vertigo, seizures, headaches).

neurologistOnly neuropsychologists seem to care about the invisible side of your disability. I found my neuropsychologist very helpful. He labeled issues I didn’t understand (task initiation, sensory overload) and suggested coping mechanisms and compensation techniques – extremely useful information that improved my life, both practically and psychologically.

I did not have the opportunity to undergo rehab/therapy (physical, speech, etc.) after my third surgery. I did everything myself. I played brain-games on the computer, went for walks (later hikes), and exercised every day. I’m sure I would have healed faster and more effectively with professional help. I didn’t have the wherewithal to fight for it myself, nor did I have anyone to fight for me.

Deb Brandon 2

Deb Brandon, Ph.D.

There is no full recovery from severe brain injury. There are always residual deficits that are exacerbated by fatigue. Pace yourselves carefully. Rest, rest, rest. But, don’t forget to live as fully as you can. Push yourselves as much as you can, but be aware of your limitations. Often it is a fine balance.

It’s an amazing journey of discovery and rediscovery.

Carpe diem within your limitations.

Life is good.

 

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Survivors SPEAK OUT! . . . Jason Westhoff

Survivors SPEAK OUT!   Jason Westhoff

presented

by

Donna O’Donnell Figurski

 

Jason Westhoff IMG_9574

Jason Westhoff – Brain Injury Survivor

1. What is your name? (last name optional)

Jason Westhoff

2. Where do you live? (city and/or state and/or country) Email (optional)

Phoenix, Arizona, USA     jrwesthoff1@gmail.com

3. On what date did you have your brain injury? At what age?

March 11, 2012     Age 29

4. How did your brain injury occur?

I was assaulted after leaving a club in Peoria, Illinois.

5. When did you (or someone) first realize you had a problem?

I realized I had a problem around eight months after the assault. I was in the Emergency Room and honestly realized I had lost all control. I had no clue how to go about regaining that control and made many wrong attempts over the next five years.

6. What kind of emergency treatment, if any, did you have?

Hospital thI was knocked unconscious from the assault, and I was transported by ambulance to the hospital. The medical staff noticed the swelling, and, as a result, I was taken into emergency surgery. I had a craniotomy to relieve the swelling.

7. Were you in a coma? If so, how long?

After the emergency surgery, I was placed in an induced coma for approximately three weeks. I had another two surgeries during this time.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I had approximately three weeks of inpatient rehab before I was discharged. Afterwards, I continued physical, occupational, and speech therapies on a twice-weekly basis for approximately three months before I returned to school. At this time, I knew something was different, but I did not understand the battles I was fighting.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

After my TBI (traumatic brain injury), I was a completely different person. It took me years to realize the extent of my injury. My balance and normal body functions were the easiest to check and the most obvious. The major changes, which I am still trying to adjust to daily, are my personality and perception during normal life-events. My injury has placed strains on every previous relationship I had and the new ones I have developed. I honestly feel like two completely different people. I still have the same general personality, but my ability to adjust to unplanned change is the ability most affected. I have a problem with the skill of adjusting in the moment.

10. How has your life changed? Is it better? Is it worse?Better Worse

My life has been extreme on both sides. It seems as if everything is extremely better or extremely worse on a rotating cycle. I am thankful on the whole because of the strength I have found to deal will all issues that have occurred. I am still working every day on my recovery, but I know, through this fire, I will become a better human being.

11. What do you miss the most from your pre-brain-injury life?

I miss my intellect and communication skills. It always feels as if I’m grasping for, but never quite reaching my projected goal.

12. What do you enjoy most in your post-brain-injury life?

I enjoy the communities I never knew about and the social interaction within the “brain-injury-support community”. There is a bond, which I have never quite been able to explain to others, of just knowing how something feels.

13. What do you like least about your brain injury?

Medicine side-effects!Medicine bottle 7Ta6Ezr8c

14. Has anything helped you to accept your brain injury?

Time. It has been extremely difficult to adjust and accept my brain injury.

15. Has your injury affected your home life and relationships and, if so, how?

Yes. It has been hard to be a successful father without the resources desired. Relationships in general have been a struggle because I don’t completely understand myself at all times. There is a constant unbalance in my life since the injury.

16. Has your social life been altered or changed and, if so, how?

Yes. I had struggles – extreme struggles – in my social life, primarily involving drugs and alcohol. Alcohol was a bigger problem than the drugs. I often get so stressed and/or anxious I want to drown my thoughts away. It is very easy just to give up at times.

Jason Westhoff Sheria & Darryl Eubanks

Jason Westhoff – Brain Injury Survivor with Parents, Sheria & Darryl Eubanks

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

My parents have been my main caregivers, my mother in particular for emotional support, which is where it has been needed most. It took me 2-3 years to start to comprehend the stress involved in being a caregiver, until I really tried to manage Jayla (my daughter) by myself for an extended period of time.

18. What are your plans? What do you expect/hope to be doing ten years from now?

My plans as of this moment are just trying to get my medications set and lowering my mental-fatigue issues. My focus is primarily on understanding my new mind and body so I then have the ability to make the proper adjustments. I love it here in Arizona! By the time I do my radio interview with Donna, I will have been in Arizona for fourteen months. I am currently looking forward to doing more work in the brain-injury community.

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Listen! Listen! Listen! I am one of the worst listeners. I have proved this point time and time again. I would suggest to swallow your pride and let people help you.Ear_clip_art-1

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

My best advice to give to any survivor is to never stop growing. Don’t become content with your situation. We can always improve!

 

If you would like to be a part of the SPEAK OUT! project, please go to TBI SPEAK OUT! Survivors Interview Questionnaire for a copy of the questions and the release form.

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As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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Brain Injury Resources . . . . . “After Brain Injury: Telling Your Story, A Journaling Workbook”

After Brain Injury: Telling Your Story, A Journaling Workbook

by

Barbara Stahura, C.J.F. and Susan B. Schuster, M.A., CCC-SLP

presented by
Donna O’Donnell Figurski

After Brain Injury Telling Your StoryThis workbook by Barbara Stahura and Susan B. Schuster guides survivors of brain injury and blast injury through the powerful healing experience of telling their own stories with simple journaling techniques.

By writing short journal entries, survivors explore the challenges, losses, changes, emotions, adjustments, stresses, and milestones as they rebuild their lives.

Journaling after brain injury helps written and verbal communication skills and provides cognitive retraining for following instruction. It helps promote self awareness as well as recognition of strengths and difficulties after brain injury.

Susan B. Schuster

Susan B. Schuster, M.A., CCC-SLP Author of “After Brain Injury: Telling Your Story – A Journaling Workbook”

It is a tool for planning for the future and discussions with family members. Journaling can be done individually, in a group or with assistance from caregivers or family.

Barbara Stahura, C.J.F. Author of “After Brain Injury: Telling Your Story – A Journaling Workbook”

 

 

 

 

 

 

 

 

 

 

To locate additional books pertaining to brain injury, please check out Lash & Associates Publishing/Training Inc.

 

(Clip Art compliments of Bing.)

As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

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Survivors SPEAK OUT! Jordan Emerson

Survivors SPEAK OUT!  Jordan Emerson

presented by

Donna O’Donnell Figurski

jordan-emerson-2

Jordan Emerson – Brain Injury Survivor – Race Car Driver

1. What is your name? (last name optional)

Jordan Emerson

2. Where do you live? (city and/or state and/or country) Email (optional)

Windham, Maine, USA

3. On what date did you have your brain injury? At what age?

I had my brain injury at 13 years young.

4. How did your brain injury occur?dan Emerson

Jordan Emerson - Brain Injury Survivor - Race Car Driver

Jordan Emerson – Brain Injury Survivor – Race Car Driver

I was driving a fully-safety-equipped racecar.

5. When did you (or someone) first realize you had a problem?

When I was unconscious

6. What kind of emergency treatment, if any, did you have?

I was given a trach. I had emergency procedures for a cracked left hip, brain stem, seizures, a crushed left arm, paralyzed vocal chords, and paralyzed stomach.

7. Were you in a coma? If so, how long?

Jordan Emerson - Brain Injury Survivor

Jordan Emerson – Brain Injury Survivor

Yes. Almost 3 months

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)?

I have occupational and physical therapies as an outpatient. I was also helped by a speech-language pathologist.

How long were you in rehab?

I’m still attending OT and PT as an outpatient.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

I still have awful trouble going to the bathroom. Being in crowded areas makes me tired. (It’s “overstimulation,” but instead of overstimulation, it feels like a “draining of my energy.”)

10. How has your life changed? Is it better? Is it worse?

My life is neither better nor worse. It’s just different.

11. What do you miss the most from your pre-brain-injury life?

I miss being able to run around outside with my dogs.

th-112. What do you enjoy most in your post-brain-injury life?

I like that everybody seems to offer to help more often.

13. What do you like least about your brain injury?

I dislike that I’ll be thinking so hard about something, and then, *poof* it’s gone.

14. Has anything helped you to accept your brain injury?

Talking with other survivors has helped.

15. Has your injury affected your home life and relationships and, if so, how?

Before I developed a filter, I said things to friends, and over time, those friends disappeared.

16. Has your social life been altered or changed and, if so, how?

Yes. I have lost friends.friends

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

My mom is my main caregiver. I’m thankful for her every day.

18. What are your plans? What do you expect/hope to be doing ten years from now?

I plan to be driving, living in my own apartment, married, etc.

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Hard work really does pay off.

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Jordan Emerson and Mom & Dad

Jordan Emerson – Brain Injury Survivor and Mom & Dad

I owe a lot of my journey to my loving parents – I couldn’t have done this without them. I ♡ them!
Please feel free to reach out to me (#Believe). I enjoy helping whenever I am able. Believe!

 

 

 

(Disclaimer: The views or opinions in this post are solely that of the interviewee.)

If you would like to be a part of the SPEAK OUT! project, please go to TBI SPEAK OUT! Survivors Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it with your friends. It’s easy! Click the “Share” buttons below.

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SPEAK OUT! . . . . . . . . . . . . . Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

presented by

Donna O’Donnell Figurski

Itty-Bitty GIant Steps for BlogSPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.

If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at neelyf@aol.com.

If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your last name to be posted, please tell me in your email or Private Message.)

I hope we have millions of Itty-Bitty Giant Steps.

 

Here is this week’s Itty-Bitty GIANT Steps

#2 Shaw, Jenny Niday Survivor 050116

Jenny Niday Shaw – Survivor

Jenny Niday Shaw (survivor)…I am happy after three years this April. SmilesI finally smiled again – I mean a real smile. It is the simple things, folks … the simple things.

 

Viera, Meg Survivor 051716

Meg Viera – Survivor

 

 

Meg Viera (survivor)…I just got my grades back from my last college semester. I’m usually on the Dean’s List, but I took a harder class this time. Dean's List

 

My mom said I probably wouldn’t get on the Dean’s List this semester. But, I got an A in the harder class (!) and a B+ in my other one. Here I come, Dean’s List – TBI and all!

YOU did it!

Congratulations to contributors!

As I say after each post:anim0014-1_e0-1

Please leave a comment by clicking the blue words “Leave a Comment” below this post.

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(Photo compliments of contributor.)

On The Air: . . . . . . . . . . . . . . Brain Injury Radio . . . . . . . . “Another Fork in the Road” with Jessica E. Taylor – Brain Injury Survivor & Author

On The Air: Brain Injury Radio “Another Fork in the Road”

with

Jessica E. Taylor – Brain Injury Survivor & Author

presented

by

Donna O’Donnell Figurski

images-1Jessica E. Taylor learned about brain injury the hard way when she fell down a flight of concrete stairs. That event changed her life forever. Jessica had to pick up the pieces and glue them back together. She details her life with brain injury in her book, “From Tragedy to Triumph: Journey Back from the Edge.”

03 Taylor, Jessica 1 copy

Jessica E. Taylor – Brain Injury Survivor & Author

She will share her story and tell of how she advocates for brain injury survivors now.

If you missed this show with Jessica E. Taylor on “Another Fork in the Road” on February 21st, 2016, don’t fret. You can listen to the archived show here. Click the link below.

See you “On the Air!”

On The Air: Brain Injury Radio “Another Fork in the Road” with Jessica Taylor – Brain Injury Survivor & Author

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

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