Stream Of Consciousness Sat. Sept. 29th

Who Was I Kidding?
I’m mad. I’m mad at my body, I’m mad at the way I’ve been let down, and I’m mad that I’ve lost my freedom, once again. What am I talking about?
Singing
For those who don’t know, I used to sing in a women’s barbershop chorus as well as in a quartet. I love to sing but I haven’t done it since 2007. Recently, I heard about an opportunity to join a group called the South Island Care Choir, made up of Doctors, Nurses, other Health Care practitioners and Patient Partners from Patient Voices Network, the group I volunteer with. I immediately jumped in and said YES!! I would love to join this group, not even thinking how unrealistic this might be for me healthwise.
Well, I’ve just made the unfortunate realization that it’s not going to be feasible for me to do this, and I am totally pissed. The main reason why I won’t be able to sing? My stupid left foot and it’s stupid Haglund’s Deformity that we’ve just confirmed. I literally can’t walk on this foot for more than 10 minutes without being in agony, let alone stand on it for 90 minutes to sing. I would have to walk to the bus stop there and back to where we would rehearse, and I am NOT paying the $50 it would cost for a taxi each way. Even using my walker or my crutches wouldn’t make a big difference…I would still have to be on my feet to sing properly and I just can’t manage it right not. Plus, the only way that this Haglund’s Deformity can be managed is with surgery. I’ve already tried the other measures to treat it…ice, elevation, anti-inflammatories, rest…everything.
I am so mad at myself for getting my hopes up and then realizing that this just isn’t going to work. I wanted so badly to be able to sing again because I miss it so much…the camaraderie of being in a group environment, creating harmony together, performing for people…just everything.  Singing in the past brought me so much joy…I really wanted to re-create those feelings again. Unfortunately, if I’m totally honest with myself, I would end up being in too much pain and too tired to really enjoy myself and now is just not a good time to do this.
I’m going to send a note to the director and ask if it’s okay to put this off until the Spring and then perhaps re-join at that time. Hopefully my foot will be dealt with by then and I’ll be recovered from surgery and no longer in pain. My regular pain I can manage, but if I can’t stand on my own two feet with just my cane, then there’s no sense in pretending. I don’t want special accommodations, I just want to be like everyone else on the risers; a regular singer.
From my Sweet Adeline Barbershop days – the link below is my quartet Quintessence singing Marshmallow World. It’s from the Christmas CD “Jingle Belles” that my chorus Rhythm Of The Rockies put out, I believe in 2004. This was when I was living in Calgary where I was a founding member of the chorus.
In 2005, Quintessence competed in Sweet Adelines Region 26 (the All Canadian Region!) composed of choruses and quartets in BC, Alberta and Saskatchewan. Every year there would be Regional Competitions held to pick winners to go to International Competitions. Out of 16 Quartets, we placed 10th overall in the competition and we won Novice Quartet of the Year which was a real honour – the best of all the new quartets!! One of my favourite memories was when we entered the theatre after coming off stage, people were applauding as they did for all the competitors, and the reigning Quartet Champions stood and applauded for us – again, as they did for each quartet, but it made me feel so special, like our quartet was so amazing. I’ve never forgotten that feeling, something likely so insignificant to them, but has had a lasting impact on me all these years later.
And that was another reason I wanted to sing. I wanted to be able to influence other singers who maybe were in a choir for the first time. I wanted to be able to encourage and inspire someone who was trying something new for the very first time. But no…my stoopid body refuses to cooperate and so once again, that freedom to do what I want when I want is gone.
Anyway, I hope you enjoy our version of Marshmallow World. I realize it’s not Christmas yet, but the weather is changing and some people Edmonton have already had snow so it’s not totally inappropriate either.
Marshmallow World
And as for me, like I said, I guess I’ll revisit singing in the Spring and see how things are at that point. Hopefully I’ll be in a better place physically to be able to sing without pain and I’ll enjoy the experience even more.
there is always hope

Medication Frustration

It’s a frustrating thing when the medications you’ve come to rely on suddenly decide to stop working. Pain meds no longer manage your pain, and brain meds no longer manage your brain. It’s no fun to find yourself in this situation, but for People with Chronic Pain (PwCP), it happens all the time.
Drugs
There are only 3 medications that are specifically prescribed for Fibromyalgia: Lyrica, Savella and Cymbalta. Lyrica, in particular, is known for weight gain as a side effect and when I first started taking it, years back, I gained 30lbs in 2 months time. I’m a short girl (5’2″) but I have a large frame, so I didn’t want to gain anything…I’m already stocky. I told my doctor that I couldn’t handle being so heavy (I think I went up to 160lbs), so she took me off the Lyrica and put me on the Cymbalta instead. I lost some of the weight and for a long time, seemed stable at 140lbs which I was okay with. I was still working out at the time and had a muscular body thanks to my trainer and her torture sessions every week (hi Terrianne…love you!).
Fast forward 10 years and I’m still on the Cymbalta, but I don’t think it’s as effective as it used to be. The problem is, science hasn’t kept up and there is nothing newer to try. Even though I continue to take my daily doses on schedule, I find that I develop brain zaps in between and my Fibro pain seems to have increased over the years as well. Part of it might just be from ageing, and part might be from my Osteoarthritis getting worse as well. I’ve also noticed that since I had my right hip replaced and I developed this Haglund’s Deformity in my left foot, my legs are constantly achier than they’ve ever been. I’ve always put that down to walking with a different gait, but I wonder if that’s my Fibro flaring up as well.
The other medication that has been difficult to regulate is what I take for my Bipolar Disorder. I was on Seroquel for a couple of years with good success, until I started having auditory hallucinations. I would be hearing music where other people heard nothing. It took a long time before we determined it was my medication causing the problem, including a visit to a Psychiatrist to determine that I didn’t have Schizophrenia. Once we realized the Seroquel was the problem, we switched to a new drug called Abilify. That worked great for the first several months, providing me with energy that I hadn’t had before and a whole fresh outlook on life.
Unfortunately, it also brought some side effects like shaking hands and trembling tongue and brain zaps – those internal lightening-fast buzzes in the head. We cut the dosage in half and then in half again, but to lose the side effects meant to lose the benefits as well. I see my doctor again soon and I think we’re going to have to try something new. The problem is, everything new is in the same general category as what I’m currently taking, so not sure what type of success we’ll have.
Speaking of seeing my doctor, I have to say that my new doctor is lovely. Dr Penny Wilson is from Australia and is in Canada for a year at least (with the promise that if she decides to go back to Australia at the end of the year, my care will be taken over by another doctor in the practice so I won’t be left stranded). She prefers to be called Penny rather than Dr and she’s simply delightful to talk to. She’s matter of fact and down to earth, and genuinely wants to see me as healthy as possible, so on my last visit there, to get the results of blood work and to get a prescription refill on my opioid medication, she decided she wanted me to book another appointment asap for what she called a Complex Care Review. As she said, “if anyone is complex, it’s you”. How true!
Basically, this appointment will be a chance to sit down for 30 minutes to go through EVERYTHING that I’m experiencing healthwise so we can triage what’s important, what can wait, what Dr Winston, my Pain Doctor, is dealing with, and what needs to be sent off to other doctors. For instance, I’ve had ongoing pelvic pain, likely due to a build-up of scar tissue/adhesions from several previous abdominal surgeries. I do know that when I had each of my ovaries removed, there was scar tissue attaching my bladder to my bowel. When I move certain ways, it feels like my insides are ripping apart, like velcro being torn open and it’s crazy painful. This is something I haven’t dealt with yet, because there have been too many other things wrong with my body. Penny will likely refer me to either the Gynocologist or to a General Surgeon to have a laparoscopic procedure done to see if they can remove some of the adhesions so that pain can be eliminated. Yes, a surgical procedure will cause more adhesions, but if they can get rid of 90% and have only 10% more grow, then those are good odds for me.
It feels weird to be looking forward to a Dr appointment, but I think this will be one of the most beneficial ones I’ve had in ages. I’m also taking in all my medications, so we can do a review and see if there’s anything I can stop or any dosage changes I need to incorporate. Yes, Penny is very thorough and for that, I’m very grateful. I have a feeling that when the appointment on the 27th is over, I’ll no longer have medication frustrations. What an answer to prayer!!
there is always hope!
 
 
 
 

A Little Bit More Joy

This past summer, I wrote a post called That Which Brings Me Joy in which I talked about my hummingbirds and provided a list of things to do which could bring some joy into your life.
My hummingbirds continue to bring me much happiness. I bought a different feeder for them which the wasps that plagued me can’t get into, and I also bought a wasp trap which I’ve baited with a double concentrate of sugar water. The birds are happy, the wasps not so much, but there aren’t as many of them now with the weather cooling off as we head into fall.
I wanted to continue my list of things that might bring happiness into your lives, so here goes. I hope there are no repeats!!

  1. Write a thank-you note to yourself (on your best stationery, of course).
  2. Venture outside for a five-minute walk.
  3. Indulge in a delicious piece of chocolate (or a fresh colourful smoothie).
  4. Find a piece of jewelry you haven’t worn in a while – feels just like vintage shopping!
  5. Pick fresh flowers or send yourself a little bouquet of favourite flowers.
  6. Visit a funny blog, watch a movie, or spend time with someone who makes you laugh.
  7. Find serenity at a favourite local spot (ex. a park, a lake, a coffee shop, a little nook in your house or office).
  8. Bake a favourite treat with a family member or friend — or bake alone and surprise someone special with yummy treats.
  9. Discover an uplifting and fun song – something new.
  10. Slow down and enjoy a long brunch.
  11. Try a new fitness class.
  12. Indulge in watching tv or reading a magazine – guilt free!
  13. Declare a vacation day – write it BIG on your calendar so you get to anticipate this upcoming personal time (a vacation day can fall on the weekend).
  14. Do a good deed — help someone else find joy.
  15. Treat yourself to a favourite cup of coffee or tea – enjoy the flavours and activate your senses.
  16. Be goofy! Dance around your room to your favorite music.
  17. Explore the inspirational and joyful blog, Kind Over Matter.
  18. Get rid of two items in your physical environment that make you feel negative.
  19. Bite into a piece of fresh fruit.
  20. Wear a color that makes you feel confident and joyful!
  21. Write down three things that you are grateful for.
  22. Call a supportive friend – or reconnect with someone you haven’t spoken to in a while.
  23. Start a book that you’ve been meaning to read.
  24. Browse books at your local bookstore.
  25. Learn something new (ex. a new hobby or craft).
  26. Write a thoughtful comment on a personal blog you read (comments mean the world to me – hint hint!).
  27. Create a list of 10 things you love about your significant other – surprise him/her with the list.
  28. Write a hope note and leave it for someone to find.
  29. Connect with your fellow tweeters. Send a tweet with a joyful message.
  30. Create a list of 10 things that make you happy – your own personal “joy” list.

I hope you enjoy this list and make good use of it. If you have other ideas or suggestions, leave them in the comments. Thanks, and remember…
There is always hope

the suicide poem

TRIGGER WARNING – I AM TALKING ABOUT SUICIDE
I have a poem I want to share because I wanted to reflect on the growing number of suicides that are happening in the Chronic Pain world. People with Chronic Pain (PwCP) are not getting adequate treatment and are suffering desperately, leading many to take illicit drugs off the street, which can lead to drug overdoses, or to just outright commit suicide, because their pain has become too much for them to manage.
Marijuana is becoming legal on October 17th in Canada and medicinal marijuana has been available for some time. There are several states in the US where cannabis is legal as well. Many patients find that this is a great treatment for their pain, but for those that don’t even have this option, what is left for them? Inadequate treatment plans, mismanagement of their conditions and a crackdown on necessary treatment with opioid medications because of fears of addiction. It is medically impossible to become addicted to an opioid when you’re body actually needs it. Addiction happens when you no longer NEED the drug, but you continue taking it because your body develops a craving for it.
Data indicates that from the approximately 36,000 suicides that happen in America every year, 10-15% of those are from PwCP*. That’s a powerful statistic and one that really caught my eye.
If you are living with Chronic Pain or know someone who is, and are having a hard time coping, please don’t keep it to yourself. Ask for help. Let someone know you are struggling. There is NO SHAME in admitting you are having dark thoughts or in a depressive state. I have gone through depression and so has my husband. Because of my Bipolar Disorder, I have to be on medication 24/7 or I will disappear into Manic/Depressive cycles that cause great despair in my life. The manic phases are sheer chaos and the depressive phases are dark and very scary and I have come very close to not wanting to live in those moments. It’s only because I have a great husband and a great doctor that I am still here, alive and kicking and cheering on the people like me, who live with chronic illness and mental illness and are doing life every day and surviving.
TRIGGER WARNING – this poem is about suicide
It’s hard to continue to fight and stay strong
It’s scary in dark places, where you linger so long
It’s cold and its brutal and you’ve given up hope
When you find yourself at the end of the rope
Too many times, you have been to this place
Too many times, with the tears on your face
Begging for mercy, all the words that you’ve said
And this time you’ll be using the gun at your head
You’re too tired to listen to the love all around
The words smash together til they make no more sound
It all has no meaning to you anymore
As the drugs take effect while you crash to the floor
How can I reach you, to show that I care?
How can I save you, how do I dare?
I’ll risk our whole friendship to do the right thing
While you stand on the bridge and go for a fling
In hindsight, it seems like your problems were small
You just couldn’t see it, so big was the wall
The gap that you’ve left can never be filled
The sorrow I feel will never be stilled
And those left behind will be mourning in pain
If only we had time just to talk to you again
We’d try harder to reach you, to bring back the light
We’d do everything different, we’d not stop the fight
Until we had you back safely, on this side of grave
Oh the things we would do, if you we could save.
There is always hope

*http://www.lynnwebstermd.com/suicide-and-chronic-pain/

Feelings…Nothing More Than Feelings

I’ve been wrestling with my emotions lately and wasn’t sure if I was even going to post about them. I’ve gone from feeling quite happy about how things are going in my life to outright despair over situations I have no control over. Because I am a Christ Follower, I do pray, but there are so many times I wish I could do more for the people in my life that are suffering. It’s especially hard when my own life is going so well.
Physically, I am doing better than I have been in a really long time. My Fibromyalgia pain has been well controlled lately, without any major flare-ups, my right knee has been doing well since the Synvisc injection finally kicked in, and although the Botox didn’t work for my Trigeminal Neuralgia (I had several flare-ups after it was done), I haven’t had a major problem in the last two months. The only real problem I’m having right now is with my left foot, and what I thought was a problem with my Achilles Tendon. Overall though, my energy has been good and since my dose of Abilify was cut in half, the shaking hands and the tongue tremors and brain zaps seem to have eased up as well. My Bipolar Disorder has been well controlled and other than the fact my insomnia continues to cause major problems and I still average 2-3 hours of sleep at night, overall, I can’t really complain. I feel about as good physically as I have in the last few years and this is a real blessing.
What does have me troubled is that I have several friends who are going through really difficult times right now. One has a daughter in her 20’s with cancer, one has a young daughter with digestive issues and one has a husband with cancer. It’s hard to be so close to people emotionally and yet not able to do anything for them to help them in these battles. So, I’ve done the only thing I know how to do. I’ve sent them each a cow.
A cow named Courage.
Let me explain. I love cows…I always have. I collect them…stuff ones and china ones and figurines and you name it. I have a small collection now, but once upon a time, I had over 400 cow-related items. Now I just keep it to the figurines and stuffies, and Christmas tree ornaments. Courage the Cow was born when my very dear friend Kevin was diagnosed with Lymphoma several years ago. I sent him a stuffed cow from my personal collection to help him through his battle and now Kevin is cancer free. When I heard about my friends and the battles they were going through, I thought that perhaps a Courage Cow of their own might be a good idea. So, that’s what I’ve done. I have taken stuffed cows from my personal collection and sent them on, with a note indicating that Courage is especially talented at eating cancer cells.
Courage also brings great comfort to young children with tummy troubles – that is another speciality of his. I’ve boxed up each of these cows and sent them off and so far, two people have received theirs. The young lady with cancer has had many cuddles with her Courage Cow and has said she already feels better. She will be undergoing a third Chemotherapy treatment soon. My small friend with the digestive problems loves her Courage Cow and wouldn’t put him down. She even made room on her bed for him and apparently that was QUITE the big deal as she’s very particular about who sleeps with her. She will be going to Boston Children’s Hospital in October for a complete digestive workup to see why her bowels don’t work properly and why eating is such a problem for her. She’s 5 years old and has had problems all her young life, so hopefully, Courage will be a comfort for her. As for the final recipient, I’m waiting to hear if Courage has been delivered yet or not…I expect any day now. He discovered he had Stage 4 prostate cancer out of the blue after having no previous symptoms at all.
I’m very thankful that despite my chronic illnesses, I’m healthy in the sense that I need no ongoing treatments such as chemo, or IViG, etc. Sure, I live with ongoing daily pain and I take a bunch of medications to manage my conditions, but overall, I’m healthy for a “sick” person. I just hope and pray it stays like that. I know that I have some surgeries in my future to expect, as my left hip needs to be replaced, and a possible surgery on my left foot where I thought my Achilles Tendon was injured. Instead, it turns out I have something else, called a Haglund’s Deformity. I’ll be seeing an Orthopedic Surgeon in the near future to discuss that further. Still, I can’t complain healthwise (well, I could, but no one would listen!). I know too many people who have things far worse than me. And for them, I listen, encourage and send out cows. And I try to remind them that even in the worst of times…
There is always hope
ps: As a reminder, if anyone is interested in taking the course 31 Days of Expressive Writing for Chronic Pain and Illness that I recently completed, I have become an Affiliate and will earn a small commission if you purchase the course through this link.
The price for this course is only $39.00. There are other courses available through Esther’s site, including What Really Helps People With Chronic Pain for only $99.00, and Pacing For Chronic Pain, priced at just $69.00. To sign up for these courses, please make sure you use my Referral Number 19f3aa. Thanks very much…if you do sign up, I hope you find the course as helpful as I did.
 

A Comedy Of Frustrations

I have just been through the very painful experience of having a computer crash and losing all my data. My backup system failed and I estimated that I lost 2 years worth of work and files, including photos that I can’t replace and documents that I have been working on for quite some time.
I try to “write ahead” when it comes to posts for the blog, so I’ve probably lost about 10 posts as well. I usually write in Mac’s program Pages, and then transfer them over to WordPress afterwards, mostly because I have more editing options in Pages. I don’t know if I’ll do that in the future. And because of the brain fog that goes along with having Fibromyalgia, I can’t remember most of the contents of them, so can’t just recreate them again. Frustrating doesn’t even begin to explain how I feel right now.
The whole thing started when I realized I had accidentally deleted a folder into the trash, and that I had emptied the trash. I went online and found instructions for retrieving said folder. Now, I use a MacBook Pro, so sometimes these tasks are a lot easier than when you use a Windows-based computer. I also was still in a drugged up mode after having had a dental procedure done the day before. These two things should not go hand in hand, but I thought I could at least follow the instructions without too much difficulty since I knew I had a backup. I managed to get to my Disk Utilities section of the computer but as I attempted to retrieve the folder from the trash, it would appear that I wiped out my entire hard drive instead.
It was the drugs. I think I probably had a moment or two where I drifted off to sleep and did some other stuff that I shouldn’t have done. All I know is that I had no folder and no hard drive in less than a minute. Wisely, I turned off the computer, panicked appropriately, and had my husband call a computer guy when he got home, so we could take it in and have it repaired. I wasn’t too worried, as I knew the computer could have the OS installed again, and I had the backup files at home.
So, that’s what happened. Off went my little MacBook Pro on Saturday morning, we had a busy weekend going for a motorcycle ride, then heading to Vancouver on Sunday for a short visit with our daughter Ashley and to meet her boyfriend David for the first time. It was a long wet trip so we had to take the truck, but both times on the ferry, I was able to stand outside and enjoy the view…including a gorgeous rainbow on the return. Then on Monday, I had a dreaded dentist appointment, but Ray was able to pick up my computer for me…with the hard drive freshly reinstalled. They weren’t able to retrieve any of my files for me so I knew I’d be busy getting everything put back.
And then the pain and frustration hit. My back up drive wasn’t working. Despite diligent use, the last backup information captured was in June of 2016. I lost 2 years worth of everything. Documents, photos, files, information – you name it, I lost it. I was absolutely devastated. Some stuff was totally irrelevant but some stuff was hard to swallow that it was gone. I have no idea why the drive didn’t work – it’s a simple external drive and I swap out my hard drive to the external drive once a month. It always appeared to be reading the documents fine but apparently, that wasn’t the case. I also didn’t have Apple’s built-in Time Machine turned on in the past, so I’ve made sure that’s on now. All in all, everything I can do to back up my computer is now in place, along with a monthly calendar reminder to back up to the external drive and to check it to make sure it works!!!
Folks, check your computers and make sure you’ve backed up your data!! Use my experience as a lesson and don’t let this happen to you.
I’m back up and running now but it’s definitely been a frustrating week. I hope you never have to go through this experience yourselves. I certainly have everything set up properly to prevent it from happening again. And on I blog.
There is always hope!
 

Guest Post – Mary Gutierrez

I am pleased to share a post by a Guest Blogger today by the name of Mary Gutierrez
Mary just published the following article and I thought it was important enough to feature here:

Mental Health Advocates Share How To Prevent Suicide in 60 Seconds

What would you say if you had 60 seconds to talk a stranger out of taking his or her life?

Image from Pixabay

I was flipping through my new SoulPancake book when this question jumped off the page.

What would you say if you had 60 seconds to talk a stranger out of taking his or her life?

I froze and my mind went blank. This can happen in my lifetime and I didn’t know what I would say.

So for this National Suicide Awareness Week, I’ve asked some mental health advocates to answer this question.

I hope you will never need the suggested responses and tips below. But if it happens, may they help you save a life.

Here’s What They Shared

  1. “The pain you are feeling must feel overwhelming but If you live another day I will show you that life can be better than what you are living.” — Saaim Ali
  2. “I can’t promise you it gets better. I won’t tell you sunny platitudes or promise you rainbows.
    What I will do is ask you stay, because you’ll never know what’s ahead if you don’t.
    I will do my best to help you look for the rainbows and walk in the rain with you until you can, because I’ve been there, too.” — 
    Selena Marie Wilson
  3. “What you’re considering doing is a permanent solution to a temporary problem. Whatever it is — I promise to help you to resolve it — but we can’t do that if you’re dead.” — Kathy Reagan Young
  4. “ I have been where you are. I know it feels like there is no other way out, but there is hope. People care, I care. Take my hand, I will walk with you through this. Your loved one will be lost without you. One step at a time, one minute at a time. We can do this together. You are not alone.” — Crystal Fretz
  5. “I’ve been there, and I just want you to know that even though it doesn’t seem like it right now, at this very moment, there is hope. You are loved. If you can’t think of a single person who loves you, know that God loves you. I love you because you are a beautiful creation of God. I’ll go with you to find help. I’ll stay with you until you feel safe. You are not alone.” (coupled with questions about the person and things they like/dislike, points we may have in common, and non-threatening body language — adopt the same gestures they use, sit and or stand in the same posture — mirror them so that they can feel the empathy and love). — Anita Ojeda
  6. “There’s a whole bright, beautiful world that needs your spirit in it. It feels dark, lonely, and hopeless right now, but it’s not. There’s help for you, there are people who care about you, and you are so, so much more valuable than you realize. Let’s talk about what resources are available and which one you think will work for you, and I’ll help you make the call if you want. You’re not alone. I’m here to help you. It will get better.” — Olivia Sod
  7. “Trust me I understand how you feel, I’ve been there myself. But hang in there. Sometimes it doesn’t make any sense, but just hang on. Hang on. Hang onto life.” — Sheryl
  8. “A lot of times, people who commit suicide believe the people in their lives would be better off without them, so I’d tell them they wouldn’t and I know. My brother committed suicide and it was the worst thing I have ever experienced. I’d tell them there would be way more people than they realized that would be impacted by this choice and there were more people that cared about them and wanted to help than they realized.” — Rosanne
  9. “As worthless and hopeless and terrible and dark as you feel, this isn’t the end of your story. You can have light and hope and worth and joy. Don’t make a permanent choice that will affect your family and friends long after you’re gone. They need you, whether you think they do or not. You need them, too. Cling to the life God’s given you, even if you have to hold on by your fingernails and it feels too hard. This isn’t the end of your story.” — Anna Huckabee
  10. “Keep them talking basically. When it came down to it and my friend threatened to jump off a multi-storey car park, I told him that if needed I was going to rugby tackle him and sit on him until the police arrived and could restrain him properly (they were already on the way anyway). Probably not the most official way to deal with it but while doing it, it kept him focused on me and talking to me rather than the other things that were going on. My friend has since been diagnosed with a version of Bipolar rather than depression. Unfortunately, it took a number of years to get past the diagnosis of depression or stress.” — Hannah
  11. “What can I do to help you? (And I would start to tell them about my mother and ex-boyfriend and how they took their own life and that it’s okay to ask for help.) Everyone needs some kind of help throughout life. Just let me try to help you.”  Chasa Fulkerson
  12. “The pain you feel right now? If you allow it to end your life, the same pain will attack your family and closest friends because they will miss you. After you are gone, the pain will be allowed to grow bigger and bigger! Let’s fight this together now and end the pain, but keep your life. You DON’T want to suffer through all this darkness for nothing, do you? Because on the other side of this darkness, this grief, this pain is something worth living for joy and hope. Let’s find some of that for you! I have a list of great resources!” — Chris Moss
  13. “Listen, I’ve been there too. Right where you are. 10 years ago. So much can change in the next year for you. Don’t convince yourself that there’s no hope. That’s a lie from the pit. You have a gift and worth and value, and the devil is trying to keep you from giving it to the world. God cares about you and loves you, and has plans for you for a purpose and good. It doesn’t matter what you’ve been through or done, there is hope for a happy and joyful life! Come with me. Please let me tell you my story.” — Abby Karbon
  14. “This may be hard to hear right now but you are worth so much, just by being the only you in the world. You will be making a decision that you can not take back while going through emotions that will very well pass, even if it takes a little work. You are not alone, even if you feel like it. There are millions of people who feel just like you. Talk to me. I’m here to listen. I’ll never shut you down. You can trust me. I know what it’s like to feel like the world would be better off without you. Don’t listen to those negative thoughts. You are worthy and you will get through this.” — Cortney Kaczmarek
  15. “You are needed. You are necessary. You are loved.” — Barbara Moore
  16. “That life will be good again soon and that it’s an illness causing all the pain. They can get better and they can enjoy life once more they just need some help.” — Hazel Jackson
  17. “Hey there, I know you don’t know me but I’m here and I care. Please just come, talk to me, let’s get a coffee and restart. You won’t be able to take this back. I get it but I also just want to know your story, I don’t want this to be an end to our conversation. All the things you are feeling must be overwhelming so let’s just calm down and breathe. We can talk when you’re ready.” — Emerson
  18. “Being on the other end of it, I was told ‘it’s not worth it. This will pass and I will stay by your side and be there always.’ And that person to this day is still always by my side making sure I’m okay. And this was a few years ago. — Hailey Giambelluca
  19. “You are loved. You are taking an easy way out, but what about the ones that love you? What about the ones that fight for/with you? We would be slowly dying inside if you were not here!” — Angel
  20. “I can’t tell you what to do but I see you and I care. You’ll leave a hole in the universe that no one else can fill. This world is more meaningful with you in it. Please sit with me and tell me where it hurts. I’m listening.” — Emma Frances
  21. “There is help out there. This solution you are considering is permanent. There is no coming back. You may feel you’ve tried everything, but there are specialists that can ease your suffering. There are many options available to you, and I will help you each step of the way. The symptom of suicidal ideation leads you to believe there’s no other hope. I can attest as someone who’s been in your shoes there is. And I’m glad I didn’t make that permanent choice. So please come with me and we can find help right now.” — Ben Barrett
  22. “Give me your hand. Come closer. *if okay I’d give them a hug* I truly do understand this feels like the only way — I’ve had the same thoughts and experienced it with a loved one. I’m not going to tell you the usual things …the things you know. Just, remember that there is hope. I’ll come with you. I’ll help however I can, even if it’s just to listen…I will not judge you for your experience is yours and must be heard. Give me your hand.” — Eleanor Catalina Stevens
  23. “Up close it’s hard to see a way out or the greater plan, but everything always works out in the end. So many people find times in their lives hard, but keep going and when you look back, you will see that it was all part of a greater plan.” — Laura P
  24. “Let’s get you help! Who knows, you can overcome your depression and help others who are struggling, one thing is certain we need people who understand us, come with me, we’ll get you help, we’ll keep trying until you find a therapist you are satisfied with.” (this is just a note that I will help him/her get the help they need even though I don’t know them and they don’t know me). — Jazz Williams
  25. “Things do get better. There are brighter days ahead but you have to stay here to see them. The world needs what you have.” — Wrae Sanders
  26. “It’s okay to not be okay. And it gets better. Just stay. Use your voice to breathe life into a conversation that must be had. You are worth more than making a permanent decision based on a temporary emotion or thought. You are loved, and you can rise up once again.” — Maria Thomas
  27. “You matter. You have people who care for you and will miss you. Your death will not relieve anyone else of a burden or make someone else’s life easier. Hold my hand. I am here for you and the journey ahead. It will get better.” — Teresa Colón
  28. “Choosing to live, even though you are in deep pain, is courageous. That choice will help you take a step out of the darkness and into the light. That choice will prove to the world that you are stronger than your pain. That choice will prove to your pain that you are ready to fight back. That choice will begin your path to the help and support you need. I am here, talking to you, which proves to you that I care. I want to help you. And I will lead you to another person who will help you. And that person will lead you to another person who will help you. And another. And another. That path of people will be there for you as long as you need them. That path of people who care about you will lead you to safety, kindness, strength, and love. Take my hand right now, and let me help you start that path toward love.” — Kate Johnston
  29. “Life is full of challenges, but that’s what teaches us to appreciate the good stuff. Today might be a challenge, but we’ll figure out a way to make tomorrow better. You matter in this world, and you are loved.” — Christalle Bodiford
  30. “Think of those who love you and how it will destroy them to see you go my friend come with me to a better life.” — Robin Tomlin
  31. “I would say that this is a very permanent decision for a temporary problem and ask them to talk to me, no matter how long it takes until they realize that someone cares. I would also tell them that there is always hope, that things can get better and that I will support them in getting the help they need to find their happy again.” — Pamela Jessen
  32. “The Universe Thought You Were A Good Idea! So Hold On Tight And Stay, The Sun Is Coming For You! You Are Loved And You Are Needed In This World!” — Kristal @ The Fibromyalgia Pain Chronicles
  33. “I know you think this is the only way to make the pain end. I don’t think you want to die. I think you’re just tired of living I’ve been there. I UNDERSTAND. I think you want to end the pain and suffering. I understand. But, don’t make a lifetime decision on today’s emotions. Emotions are fleeting. You might feel worthless. I bet you think you’re a burden or nobody will notice you’re gone. I would. I noticed one of my best friends every day is gone. I will be here for you. Keep talking to me. I will talk to you as long as you need to talk. I will be here for as long if you need me to be. We will get you through this together. The world needs your story to continue. You are destined for greatness.” — Jamie
  34. “I would answer that ‘Hi this is Roger’ and if they said ‘I want to kill myself’ I would ask why and let them answer — then depending on what they said and how they said it — I would either ask them a few more questions or engage in a conversation letting them know that I was there and would listen and that I wanted to help — then let God be the Guiding Force while letting them know that I cared and they were precious and worthwhile.” — Roger Potter

Your Turn

How about you? What would you say if you had 60 seconds to talk a stranger out of taking his or her life? Let us know in the comments below.


If you liked this post, you might also like the Spoonie Secrets series. It’s a safe space for people with chronic illness where they can share their deepest and darkest secrets anonymously. Check out the first issue here.

https://medium.com/@mary_gutierrez/mental-health-advocates-share-how-to-prevent-suicide-in-60-seconds-94ac2f0c97ce
What a powerful post, Mary!!! Thank you for allowing me to share it on my blog. As I always say:
There Is Always Hope.

If Wishes Were Horses

My daughter Ashley is a groom to thoroughbred racehorses at the Hastings Park racetrack in Vancouver, BC.  She has been doing this for over 23 years now, since she was a teenager and loves every minute she spends in the barn with every horse she interacts with. She grooms the horses in her care, takes them out to the paddock on race days, and picks them up again after the race to walk them and cool them down before preparing them for the night. She’s never once not picked up a horse after a race. Until Friday, August. 24th.
The horse she groomed that night was Ceder Chines, a beautiful Bay gelding. It was the 4th race with a field of 6 and everyone got off to a good start. Cedar Chines was running in 3rd place as they were coming off the far turn and heading towards the backstretch when he suddenly stumbled in distress. The jockey, David Lopez quickly pulled him up and out of the race and held him steady until the horse could be taken by wagon off the track – it appeared that a knee injury had occurred and Ashley was unable to walk her horse off the track that night. X-rays were done and it showed that the knee was literally shattered. After discussion with the owners and trainer, Cedar Chines was humanely put down the next morning, as there was no way to recover from such a devastating injury.
Ashley was inconsolable. She’s never lost a horse before and even though these aren’t horses she owns, she treats every horse she grooms like they belong to her. She loves them all with the deepest love in her heart and gives 100% of her best self to them when she’s taking care of them. The thing was, she couldn’t just give in to her grief, as she still had another horse to prepare for the paddock for the ninth race. Can you imagine what that’s like, knowing one horse you love has broken down and yet still having to send another horse out on the track to race. All you want them to do is come home safe – at that point, you don’t even care if they win.
Living with chronic pain is similar in a lot of ways to horse racing. Waking up every day is a gamble as you don’t know what the day is going to bring. You can start out feeling pretty good, and then all of a sudden “wham!”…you’re in the middle of a Fibromyalgia flare-up, or suddenly it’s a Migraine starting, or your Trigeminal Neuralgia triggers, or your MS relapses. You simply have no way of knowing when any of these events are going to happen. Or, maybe you wake up feeling kinda crummy, but as the day goes by, you start to feel better as you take care of yourself. With the proper grooming – a good breakfast, a shower that doesn’t hurt for a change, clothing that feels good on the skin, a walk that doesn’t exhaust you – and suddenly, you’re feeling like a winner!!
At the end of the day, you just want to come home safe. Whether you ‘re still working while living with Chronic Pain, or you’ve had to give up work and other activities, the ultimate goal is to live as pain-free as possible. You resort to your comfort measures  and other tricks like meditation music to help bring down stress levels, you do what you can to get a good sleep and you just hope and pray you wake up in the morning feeling good. Less pain, refreshed and ready to face the world, like a champion racehorse might feel.
And like a racehorse needs a good groom to take care of them, we have our support systems too. Sometimes it’s a spouse, sometimes it’s a hired caregiver – whoever it is, we depend on them for a little or a lot of our care. If a groom is sloppy with a horse, for example, not wrapping the ankle bandages properly, then the horse has no chance of winning. If we or our caregivers aren’t doing the right things for our health (proper nutrition, exercise, etc), then we have no chance of improving in the larger sense with our pain management.
I wish that it was easier to live with Chronic Pain. I wish I could wake up, eat some breakfast and go for a walk and all would be well, but it’s just not that easy. Life as a race horse sounds much easier in many ways, but when you see how fragile the ending can be, you realize that the horses have it just as tough as we do. I think I’ll stick to being human, and deal with my issues one day at a time, just as I always have.
There is always hope.

Product Review – 31 Days of Expressive Writing for Chronic Illness and Pain

I recently had the opportunity to take part in a course called 31 Days of Expressive Writing for Chronic Illness and Pain by Esther Smith at who runs the Life In Slow Motion blog. This course normally retails for $39.00, but was provided to me for free in exchange for my review which follows below.
I loved it!
The course is designed with several chapters, each one giving you the opportunity to journal about various aspects regarding pain. It starts out with Your Story and asks the first question:

What are the biggest challenges you have faced over the past months and years of living with chronic illness/pain?

You are given time to journal the answer and then asked a series of further questions to help you dig deeper into the answers you’ve provided. Other chapters include:

  • Grief – you are asked to journal about the 5 stages of grief
  • Faith – How has your faith changed over the years?
  • Relationships – You have several journal options to choose from here
  • Strength, Joy & Hope – a running log of 4 different categories over a week

Finally, you set your Goals for the future by journalling through the various prompts that are provided and then setting SMART Goals for the future.
This course can be done quickly, but I highly recommend you take the time to move at a slower and more thoughtful pace. This is an opportunity to really dig deep into the soul to find answers buried deep. This is your personal journal that you are welcome to share, or to be kept private, so be your authentic self when you write and don’t hold back.
For me, this course really helped clarify how I look at my chronic pain and the words I’ve used to describe it in the past. The course was a challenge at times, but a good one in that the prompts make you go deep. Because the writing is just for you, there is a basic honesty that is drawn out knowing that no one else is going to read it unless you choose to share it. You can’t lie to yourself so you might as well put that raw truth down on paper. It provides a sense of ownership when you see the words in front of you.
The course was well laid out, easy to understand and while it does draw some content from Scripture, I think it would appeal to both a secular audience as well as a Christian audience.
I highly recommend this course for anyone who lives with chronic pain and is trying to find a way to express themselves and what they are feeling in a more clear and concise manner. By finding my voice, I felt like I was better able to manage my pain, so Esther, thank you so much for helping me find the words I was looking for.
If you are interested in taking this course, I have recently become an Affiliate and will earn a small commission if you purchase the course through this link.
The price, as mentioned at the beginning of the post is $39.00. There are other courses available through this site, including What Really Helps People With Chronic Pain for only $99.00, and Pacing For Chronic Pain, priced at just $69.00. To sign up for these courses, please make sure you use my Referral Number 19f3aa
I am delighted to endorse these three courses for anyone living with Chronic Pain. The information has been thoroughly researched and collated by Esther Smith, who has an MA in Professional Counseling and a certificate in Biblical Counseling through the Christian Counseling and Educational Foundation. She is licensed as a clinical counselor in the state of Maryland, and provides a variety  of resources for people impacted by chronic pain.
Reviewed with honesty and full disclosure on September 4th, 2018.
Pamela Jessen
There Is Always Hope
cc: Esther Smith, Life in Slow Motion
 

How Are You Doing?

Hi, how are you? 
How are you doing?
How are you feeling these days?
Oh boy…do you ever get those loaded questions? I do and as much as I appreciate that people care and want to know how I am, I also wonder if these are “polite” questions, or do these people genuinely want to know how I am. It’s so hard to know how to answer. So, generally, I respond with, “I’m doing okay thanks”. 
But what if I told the truth? 
The truth is, I’m struggling right now. I’m struggling physically with pain and exhaustion and I’m struggling with my blogging and I’m struggling with feeling lonely and housebound, but I’m pretty sure no one really wants to hear about all that when they ask me how I’m doing so I don’t tell them. 
But I’m going to tell you.
I’m averaging about 2-3 hours of sleep a night right now. I manage about 45-60 minutes at a time and then I wake up. I feel like I’ve slept for hours, but I look at the clock and barely any time has passed at all. I’ve always struggled with insomnia and I’m going to be trying some new meditation music, but it’s frustrating to not be able to get decent rest. It doesn’t allow my body to heal, which contributes to my overall pain. As I type this, I can feel my hands and legs and feet throbbing with pain. It’s almost like a drumbeat – thump THUMP thump thump, thump THUMP thump thump, thump THUMP thump thump, over and over again. My legs muscles feel tight and almost crampy and my fingers and toes feel swollen. My back is tight and tense and I can also feel the tension in my jaw and neck. My vision is blurry and I can feel the spot just under my cheekbone where my Trigeminal Neuralgia flares up – it’s gently pulsing, almost like it’s teasing me.
Now, I don’t tell you this to ask for sympathy. It’s just stating the facts. The same as I’m struggling right now to come up with various subject matter to blog about. With two blogs on the go now, I’m working at how to monetize one of them, and keep this one for posting on. I’m taking some courses about how to make money blogging and I’ve signed up to review a couple of courses as well. In the midst of that, I’m also taking a general writing course, plus I’ve applied for a new volunteer position – another committee that I’d like to be a part of. I’ll be back to work on one of my current committee assignments soon, which I’ll write about, but it still leaves me struggling with core subjects to blog about. It’s not for a lack of writing prompts, that’s for sure. Generally, what happens is I get an idea in the wee hours of the morning and then I write like crazy and bang out a post in about 30 minutes. It happens when I write poetry too. It just comes to me, I don’t plan it. When I wrote Wistful Thinking, I literally had the idea and the concept and completed poem done in 10 minutes. 
The other issue is that I’m housebound for the most part. It’s because I don’t do enough to get out and about, because of pain and exhaustion (and because I’m busy blogging). Well, no more excuses for that. I just bought a new walker/rollator to get me out moving again. She’s a pretty silver/blue Xpresso and I’ve named her Bluebird:

Isn’t she lovely!!  So much nicer than my old one, as there are no exposed cables, the basket is deeper, the seat is thicker and so is the backrest, and the wheels are designed to go over gravel and other rough surfaces. The handle area is large and smooth and she rolls beautifully, plus it’s still a one-handed close…I just pull up on the handle in the middle of the seat and voila! she folds sideways, so easy to transport when needed on the bus!!  Hopefully, this will be the incentive to get me out and about more often…there is a gorgeous lake just 15 minutes from my house with a perfect walking path around it and I’m making it my goal to get down there at least once a week.
I also plan on getting back in the pool, and Bluebird will be great for walking to the bus and back. I’ll be speaking with my new doctor in the next week about taking an Aqua Therapy course at our local Pool and Fitness Centre. It’s a specialized one-on-one program for People with Chronic Pain, working with a registered Kinesiologist to help with rehabilitation in the pool, so it’s easy on the joints and muscles. By getting my doctor’s approval, there’s a good chance I can have the costs paid by my Long Term Disability provider. I’m excited about it and even though I have to take a bus to get there, it’s only a 20-minute ride. I’m sure there’s parking available for Bluebird as I’m not the only one who takes these types of classes.
I’ve also been trying to be more physical at home, and not just sitting in my recliner all day (although it is rather molded to my butt shape). I’ve been doing wall push-ups and bicep curls and was trying to do squats as well, but those became too painful for my knees and ankles. I’m going to start doing planks to see if those work and maybe some gentle lunges with no bouncing. Everything hurts my joints so much, but I need to become more flexible. I think my Achilles Tendon is ultimately going to need surgery as it’s responded to nothing else we’ve tried – no physio, no stretching, no taping. I’m not sure what else is left, but I see Dr Winston soon, my Physiatrist and we’ll talk about options. It’s slowing me down and affecting how I walk and causing my left hip to have even more pain than necessary, which is going to increase the time before needing a hip replacement on that side as well. I’ve also developed some painful Neuropathy in the left foot, on the top and into the big toe, that might be related to my Type 2 Diabetes, so more to talk to my new doctor about. This just came on in the last few days, while on the motorcycle trip. 
Mentally, I’m worried because I think I’m going to have to come off the drug I take for my Bipolar Disorder and it’s the med that has given me all the energy I’ve had lately, Abilify. It’s causing me some major side effects; brain zaps, tongue trembling, handshaking, vision blurring and an uncomfortable amount of weight gain. I’m only 5’2″ tall, so any weight gain over 145lbs is too much and I’m up to 160lbs. It’s the brain zaps that are the worst though…I can actually feel them…they’re like an electric shock in the brain, but in high speed, and you can both feel them and hear them – a lightning bolt that goes right through the head from one side to the other. If I had to describe them based on something we physically have, I’d say it’s like one of those electronic fly killers that buzzes when it kills a fly…same sound, that bzz-zap!
Screen Shot 2018-08-25 at 12.54.36 PM
Annoying!!!
There are good things happening in my life though. Ever since we bought our new motorcycle, I’ve been able to get out for more and longer rides with my husband Ray, which is a real treat for me. Our new bike is a 2007 Yamaha Venture and more of a cruiser than the sports bike we had before, a Kawasaki Concours.
IMGP7984
The Venture is super comfortable for me and I’ve been able to go for longer rides each time we’ve been out, including a very recent Grand Adventure! Ray and I took the bike and went to Mt. Vernon, Washington to visit an online friend of mine named Maura so I could hang out with her and binge watch the second season of This Is Us, a tv show that I started watching on Netflix, but is no longer being carried there. Maura is a huge fan as well, so I spent 2 days with her watching the show while Ray went off exploring on the bike, then we hung out with her and her hubby Paul for dinner the first night (and with their daughter Anna – their son Matthew was out), and on the second night, we took them out for dinner at a local pub. On Saturday morning, Ray and I left at 5am to head for home, taking the I-5 freeway to the Blaine border crossing and then the Tsawwassen ferry home to get back to our cat Dorie at just after 9am.
Altogether, I’d say I spent 2 hours in the saddle but every second was great!! I know I can go for longer now and be comfortable. I can get on and off the bike easily, and it just feels good to ride. As an added bonus, I have a new leather jacket and gloves! Ray bought them for me on Saturday, August 25th here at a leather shop close to home. I really wanted pink, but decided this black jacket was too sexy to pass up! It has just enough detail on it to make it look sharp without being tacky. The leather is buttery soft with black stitching up the sides on the back, and on the back of the arms from the wrists to the elbows. Ray will have to put a new snap in at the wrists to make them tighter (I have short arms and tiny wrists) but it fits beautifully everywhere else and I’m delighted to have it. I also bought proper bike gloves – I got gauntlets, the kind that goes over the jacket sleeves to protect me from bees flying into my sleeves, etc. 

Here are a few pictures. I’ve also included a picture of yours truly with my hubby Ray, as we were coming home from our trip. It was taken on the ferry from Tsawwassen, BC to Victoria.
I’m still keeping busy with my volunteer work and have applied to sit on a new committee for Island Health’s Laboratory Services Quality Council. I access Lab Services every three months for blood work, so thought it might be fitting to be a part of their quality control council. I’m also waiting to hear back on a couple of other opportunities I had my name in for so it could be an exciting fall!
So there you have it…a bit more about me and what’s been going on in my life and how I’ve been truthfully feeling.  The next time someone asks you “how are you doing”, how will you answer them? With a short predictable answer? Or will you tell the truth? 
There is always hope