Fear Instead Of Trust


Hello Luvs,

Sorry I’ve been quiet for a little while. I recently went to get new hearing aids. I was so excited to get new ones after 10 + years with my old Rextons. I was awaiting new insurance after my husband retired.

I went to see the audiologist & afterwards she asked if I’d be willing to see the nurse practitioner. I agreed, & afterwards they told me that I needed a CT scan because my hearing had declined so much more on the right side. They set up an appointment with their ENT Dr., the day after we returned from visiting our daughter, son in law & grand babies. I was a bit curious as to WHY they were telling me to come the day after I got home? I would be in pain and exhausted. But it never entered my mind what I would find out next!

So, when we were in Texas, I got an email message telling me that my CT results were available in the hospital’s portal. I know there’s a disclaimer stating that “you can find out things about the gender of your baby, HIV or other illnesses, even cancer”. In other words, do not look if you don’t want to know until you’re sitting with a Doctor.

But I’ve been through a car accident, deafness, multiple chronic pain illnesses & approximately 9 surgeries just since that accident. I can handle it, right? It can’t be bad if they already put it in the portal…can it?

It’s not bad…. it’s worse than that. I’ve never been so terrified in my entire life! I don’t even know how to verbalize my fear this time. There’s no way around it. I can’t go over or under it. I am being forced to go through it. I’ve been diagnosed with a Cholesteatoma. If you see the #cholestatoma or #cholesteatomasucks on Instagram, it looks like a horror movie. I’m not kidding! It’s really terrifying and people get these horrible skull base surgeries. Facial nerves, worsening deafness and brains are involved.

I found out that I have to have my hair shaved on the right side above my ear. My mastoid bone is affected; as are the 3 bones needed for any hearing. My skull will be drilled and after a 3-4+ hour surgery and more pain on top of my full body RSD/CRPS & other high pain illnesses; it has a 50% chance of coming back!

Anyways, I’ll write another post after I process what will happen tomorrow morning 6-10-19. I’m seeing a skull base/neuro/ear surgeon at 8:30 am tomorrow/Monday morning. I’ll get my questions answered, I hope? Will he be kind and compassionate? Will he help my post-op pain?

I saw my pain Dr. this past Thursday. I also saw my GP this week. The GP was so kind and first time ever, she gave me a hug. My pain Dr has turned from Dr Jekyll to Mr. Hyde over the past year. I’ve never failed a drug test or run out of meds early! I’ve never done anything wrong, yet he’s treated me less than human now for months! Before he’d even accept me as a new patient; he ordered me to stop taking my “quick acting” pain medication. It was something I’d been taking for 13 years (*my former Dr. of 12 years had prescribed it, but then one day he just vanished. That’s when I was forced to find a new Dr.).

In July 2018; he told me he was stopping my long acting pain medication… “that day”! No tapering just stopping it! I did not cry or get upset but I asked “why”? He told me “it’s illegal now and if I help you, I won’t be able to help all of those other people “!

I got him to listen a tiny bit because I reminded him of my stroke and heart attack in the past. He decided to give me one more month. He then said in a nasty tone that he was doing that “to get me psychologically ready”! Really?? It has zero to do with my psychological status and everything to do with high impact chronic pain. Of course he “covered himself” by offering me a different, long acting medication that I cannot take because of issues with Gastroparesis & not being able to metabolize a long acting oral medication. My GI Dr wrote him a letter & told him just that! The pain doctor just said, “This is bullshit! His medical license isn’t any better than mine! If he wants you to have that pain medication, let him prescribe it”! Well, of course He’s a GI doctor and he can’t!

I had my other physicians telling me that “it was unethical for my pain Dr to taper me so quickly!” They said it should have been 10% lowered at a time! But nobody was there to save me and I had to accept it and try my best to move on & keep going. I did it myself when I was told to get off of the quick acting medication. My body physically did not feel well for awhile but I never once craved it or wanted it in my mind- not ever! Then I got off of that long acting medication and once again, I did it myself! You’d think my pain Dr would respect me just a little. But instead, he’s treated me in a demeaning, disrespectful manner ever since last year in March of 2018.

I told my pain doctor that I’m going to have to have this really scary skull surgery soon. That I’m seeing a neuro/skull base/ear surgeon. He was so cold, uncaring & horrible that I truly cannot believe he’s a physician! He told me that I shouldn’t behave like I’m “too afraid” or the surgeon may refuse to take my case! That’s insane if you ask me! What high impact chronic pain patient, headed for hair shaving, painful head surgery wouldn’t be afraid? I’m literally frozen with fear inside! But I’m strong, resilient and I’ve been a survivor through childhood abuse, horrible teen years with my kids, abusive marriages and a catastrophic car accident. Since the car accident, there have been 9 surgeries, 2 pacemakers and several metal screws and implants embedded into my body.

I can do this! Right? Can I do this? Do I have a choice? What did I do that’s so terrible in my life? I have tried my best to be a good person & to help others. I’ve been a Chemo-angel since 2005. I’ve written countless letters, made numerous videos and I’ve met with & spoken to legislators regarding this fake opioid crisis! This horrible and torturous pain crisis that’s killing innocent people everywhere.

Now comes the big question, what happens with my post-op pain care? My pain Dr told me if he was my anesthesiologist, he wouldn’t give after care post-op meds because of “risk for complications”! Gosh… I’ll bet if it was his skull being drilled, he’d be asking for some pain relief medication? He acted like I was getting a hangnail removed! Anyone else who I’ve told, says “oh my goodness, that sounds scary!”

So, my friends, here we are on the eve prior to the appointment when I’ll get all of my questions answered, I hope! What do I ask? How do I ask it? Will I be judged? Will I be too complicated and will he “run”? Will he really not help me just because I’m afraid? I’m not acting out hysterically. I’m not crying in front of the Drs. But I’m deeply scared and I’m having horror flick, bloody, stabbing nightmares! I don’t even know the surgery date as if this post. But I’m pretty sure I’ll know by the time most of you read this.

I promise to let you know when it will happen. If anything happens to me, please don’t forget me, OK? I love so many of you. I’ve seen so many of my friends in pain pass away over the past few years…it’s sad and I miss them a lot (Connie, Cyndi “Maw”, Theresa, Gwen Barbara, and Dawn Anderson most recently).

I’m not being morbid, I promise I’m just afraid. I feel less strong as I get older now. I’m 57 years old and was just looking forward to enjoying retirement with my soul-mate; my husband. He retired last June and we’ve had one thing after another come up. I’d really like to take a breath and enjoy some period of time in my life, for a change. We have 4 darling grandchildren. I just want to hug them, love them and enjoy them as much as possible. Will I ever get to do that now?

Oh…. & last but not least, I told my father about this upcoming surgery. I told him that “I wanted my mom more than ever right now” (she died in 2002). He told me that through her cancer etc., there were many times she “needed things“(he was telling me that I wasn’t there for her)! Well, I’ll just share with you all that I tried prior to my catastrophic car accident, to be there for her. I showed up at the hospital even after being told “she didn’t want me there”. I got there and I was told to leave. I was the only person allowed by the nurses, to sit with her in PRE-Op for 2 hours. We had 2 hours of alone time and it was once in my life that we got along & she wanted me around, it seemed? It was very nice, actually. But then the entire duration of the surgery, I was bullied, mocked, disrespected and literally treated like scum under a sink, by my Aunt, my 2 brothers and my dad.

Please pray for me so that I can be strong like I used to be and like I usually am. I need strength and . I’m terribly frightened tonight as my fate lies in the hands of a stranger that I will meet in 7 hours or so. I have heard & seen many horror stories of pain patients like me, being denied proper post-Op pain management. That fear is probably my biggest fear of all, or in the top 3!

Oh yes, I almost forgot to tell you what my Pain Doc said before I left his office on Thursday. He told me he was “OK with me getting the 3 days of post operative pain control from the surgeon”. He told me to “not accept the post-op meds if they just give me Tylenol with codeine, because that would be like a baby aspirin for me”!

In 2013, I had a full pectoral rebuild and new pacemaker. My cardiologist was wonderful to me! Things are so different now! Im feeling like the powers that be, the government just want persons like me to be gone and out of the way. But I’m still a human being. I want to live. I want to travel even a little. I want to be a grandmother.

I promise to write a quick post as soon as I process and know what’s happening & when the surgery will be.

Thank you in advance, for any and all prayers, positive thoughts & energy sent my way.

As I await my upcoming appointment I would love to be able to sleep. But when I’m really afraid, my GI tract takes over. It’s as though I’m on “auto pilot”. I get overwhelming stomach nausea and flu-like symptoms. THATS how fearful I am feeling. I’ve tried to control it but it’s a combination of PTSD, Dysautonomia & a highly over active “fight or flight response’.

In conclusion, I have a final request: Now is NOT the time to tell me a horror stories regarding any of your past head, skull or brain surgeries. When I recover, I promise…..then I will be glad to listen, help and share etc. Also, it’s such a shame in these days of crazy & draconian policies, that we all have fear instead of trust in the entire “system”.

Sending you love and light!

The Nightmares of Pain Refugees


Hello Luvs,

I was deeply touched by 2 stories that I’m about to share with you! I’d like to personally say “thank you” to Sheri Owen & Maria Higgenbothem. They are the 1st and then the 2nd chronic pain patients in the video below. I want to thank them for their bravery and their candidness.

Sheri had a level-7, spinal fusion and did not receive any pain care in the hospital after her surgery; outside of the normal regimen that she’s been on for years at home.

Secondly, we have Maria Higinbotham, who went on “Nightly news with Lester Holt and Kate Snow. What’s happening to the Chronic Pain community is torturous and wrong! It’s inhumane and I would’ve never thought this would be happening in the United States of America in 2019. It’s almost like the old practice of eugenics. As if they want us to be gone? So that we’re not a burden on society anymore? This is so morally wrong! Please go to http://www.Videoyourpain.com.

Share your pain story with our legislators, politicians, government, doctors, and pharmacists. Let’s share these painful stories with the world and command that this torture be stopped!

I’ve put the two videos together for your convenience and to CC for the Deaf and Hard of Hearing communities/audiences.

Also, I’d like to add that there are several advocates & groups who trying so hard to do all that they can to help the pain community! I thank you all from the bottom of my heart.

Here’s the link to the original “Nightly News” piece on NBC. (Lastly, there are two news media outlets that are listening to us. Fox News and NBC now have their ears and attention turned to the pain community. Let’s tell them everything that’s happening. Talk to Lester Holt, Kate Snow at NBC & Greg Gutfeld at Fox News. Go to Twitter and find them by putting their name in the search bar. Talk to them! Tell everyone you’re story of under treated and/or untreated pain. They are now listening and we need their help and their voices!

I’d like to say a special “thank you” to David Weiland for posting the video in CIAAG Facebook group.

Here’s the Link to the Facebook Page for “Nightly News” with Lester- NBC Holt

This is the “Chronic Illness & Awareness Advocacy Group (CIAAG) and Non-Profit .org 501(c)(3), Founded & run by Lauren DeLuca & Jayne Flanders: Here’s the link to “CIAAG” Chronic illness awareness and advocacy group on Facebook

Here is the online link to the CIAAG website at www.ciaag.net

Here also are the links to listen to Dr Kline, MD, at Jonelle Elgaway’s Show on Conspiracies Against Wellness Network (CAW): You Tube page for CAW

Here are the links to the C-50 states group page run by Valorie Hawk: Link to Coalition of State Leaders Group C-50

Please everyone try your best to come together and let’s fix this problem! Because it’s a huge problem, a national emergency and a humanitarian crisis.

Here are two more links to a couple of great videos about #1: several pain patients stories of torture: The Link to “Fight for Our Lives”, a short Video that I made regarding this opioid hysteria & untreated pain crisis and #2 is a video about Suboxone. Link to my video, ”Pain, Politics & Suboxone” (It’s a good drug if you’re an addict but has a very low analgesic effect on chronic pain. Not a good choice for persons living with chronic pain illnesses)

Thank you for reading and please share!

ASL Learner Mistakes


Hello Luvs,

Here’s a short video that is about some of the most common mistakes that people who are learning ASL- American Sign Language make. I hope you enjoy!

ASL Learner Mistakes https://youtu.be/CHRkPKa5iRU via @YouTube #asl #americansignlanguage #asllearningmistakes #aslmistakes #deafculture #deafcommunity #hh #hoh

Part of Two Worlds


Hello Luvs,

Many of my “regular” readers may remember that I am “Hard of hearing”. Hearing people usually use the term “hearing impaired”. We prefer to be called “Hard of hearing”. Mostly because we don’t feel that we are broken or “impaired”. Technically it means that Im not totally deaf. I can hear various pitches, frequencies and sounds. With my hearing aids in, I can hear a bit more of the letters and words in normal conversation. But add in background noise and people who mumble or talk very fast. Next, add the situation of trying to “listen” to several people at once, in a crowded room or restaurant? Lastly, there are those with facial hair all around their mouth and lips. They are the group for me, who have the most frustrating lips to read! Then again, it’s not really like “reading”. Because it’s more like piecing together bits and pieces then trying to “fill in the missing pieces”.

In case you’re not familiar with my hearing loss journey; I’ll recap just a little bit for you. When I was a child, I had recurring ear infections. During those times, I could often be found literally rocking my body back & forth, while curled up in the fetal position. My memories start as young as age 4 or 5. It was always pure hell while I was living with horrible ear infections. When I complained to my parents about the excruciating 😖 throbbing Pain in my ear (or ears), my mother would always say same thing. She’d tell me “Once your eardrum ruptures, the pressure will go away and you will feel better!” Well, I did feel better, but each time that happened it caused scar tissue to form in my ear drums. It also caused mild hearing loss as I was growing up. I remember asking the teachers if I could sit closer to the board to try and hear them better. Therefore my audiologist (in 2002) & ENT Dr. felt that I’ve had mild hearing loss since I was a child. I had tubes put in my ears when I was about 9 years old. They were surgically placed multiple times and for several years.

Later in 2002, I was a passenger in a car driven by my husband. We were just driving along through a green light when we were hit by a car running through a red light. It was considered a “catastrophic accident”. I acquired a TBI (traumatic brain injury) and had multiple injuries and 9 surgeries. I went to brain injury rehab for 3 years & had 9 years of PT/OT, balance therapy and speech therapy. I acquired a pacemaker, glasses with prisms (for lowered vision), 2 screws in my left shoulder and 2 hearing aids. I also got a wheelchair, a seated wheeled walker, a motorized scooter, loft strand crutches, a cane and several other helping aides for activities of daily living.

I won’t bore you with all of the chronic pain illnesses that came out of that accident. That’s not what this post is all about. But I also acquired a bi-lateral sensory neural moderate/severe hearing loss in both of my ears L>R. Along with the many medical issues, I also acquired lower vision. I saw a Neuro-Othamoligist, who put prisms in my glasses to try and correct some of it. The prisms really bothered me. Today I just have a very strong prescription for eye glasses. Everything has a bit of a halo effect.

It’s ironic and very awesome that prior to that MVA (motor vehicle accident), I had been an ASL Interpreter. I worked at a Deaf preschool and then I interpreted for a school district. In the end, I was a medical Interpreter at a University hospital. I even did volunteer work doing medical interpreting for Deaf/Blind at free medical screening events. I had gone through a 4 year SLS/Interpreting program and finished with a 3.8 gpa.

Back in the 1980’s when I went to college, I practically lived at the dorms with my 16 Deaf friends. We watched CC “General Hospital” daily at 3:00 pm. We even tried to schedule our classes around it! It was a social hour. I’d been learning ASL since age 11 & even “tested out” of the first fingerspelling class.

The Deaf community accepted me and they were kind to me. At that time I went to Deaf bowling every Thursday with DAD club. I had a Deaf boyfriend whose sister was a cheerleader at MSD & we went to all of the football games and even the homecoming dance! Me and my group of college friends, who happened to be Deaf, used to go out dancing on Friday nights. One time my friends & I were on our way to a dance club and we got pulled over for a slight bit of speeding. We were all packed in the back of a mini van signing with each other. One of my friends told me to “talk to the officer”. I was terrified and I told him “No way! I’m afraid! Since I’m with you guys, I don’t want to talk to him either!” We all laughed as the officer just let us go with a handwritten warning on a piece of paper. That was a fun and I felt included.

Just to back track a little, I started learning ASL at age 11. My best friend & I babysat for a Deaf family who lived next door to her. The parents and 6 children were Deaf. The children went to the Lutheran School for Deaf at that time! They included me in many Deaf social activities and I learned the language & received my sign name from them. First we played games and I learned colors, numbers, family signs, days of week and more!

I’ve always felt accepted by the Deaf community. I always respected the language, ASL. How ironic then, that I lost a moderate-severe percentage of my hearing & was already prepared with the tools I needed!

I’ve lost touch with some of my old friends from DAD (Deaf Association of Detroit). But I still have a some close friends from the past, who are Deaf. I still feel a part of the community. I’d like to become even more involved again! But living with several high pain chronic illnesses makes it difficult to get out due to persistent pain.

I’ve found my own ways to reconnect and to feel not so “in-between” two worlds. I get to teach ASL vocabulary with the Deaf Socials on their Instagram and Facebook pages. I love & look forward to each new vocabulary list they give to me for teaching! I truly enjoy doing that and doing song covers to ASL on my Youtube channel: My YouTube channel at: ASLSuzyQ . I also post to my Instagram A link to my ASL Instagram and Twitter A link to my ASL Twitter with the same name. I do this for fun and as a volunteer and advocate for Deaf Awareness.

Lastly, I used to love being a part of two ASL performance groups during the 80’s, when I lived in Arizona & worked at a Deaf preschool. One group was called “Silent Impressions productions”. We performed in choreography and ASL to broadway show tunes and in costumes! We put in shows at ASU and it was so much fun! The other group to which I belonged, was called “Silent Praise”. We performed Christian songs while others did lyrical dances. We did that at the ASU Neumann center. It was such a fun time in my life. My friends and I also interpreted for our church community at St. Theresa’s Catholic Church in Scottsdale, AZ.

After reminiscing in this post, I feel so grateful that I had already been involved with the Deaf community & had many years of experience with ASL, before I became Hard of Hearing. As ironic as it seems, it’s not all that crazy. I had a mild hearing loss and then it worsened due to the TBI.

I mostly seem to write about chronic pain illnesses. I’ve been writing about the rights of chronic pain patients to have access to much needed opioid pain medications. We need these medications because without them, people like me wouldn’t even be able to do the small amount of activities that we try to do. I was forcibly tapered from my long acting pain meds after doing pretty well on them for almost 14 years! Now I sit in my recliner for approximately16 hours daily. I try to get up, put I make up and do some online activities every few days. But my life is not the same with so much less help for the pain.

Although I still want to continue advocating in that area, I’m doing more & more advocating for Deaf awareness, inclusion and preservation of ASL. I thought I’d put my hearing loss story and ASL history here in my blog too. I’ve written a few posts about Deafness and trying to live in “two worlds”. But I’ve never explained the details of how I became who I am today. I’m a survivor of long time childhood abuse, domestic violence and then a catastrophic car accident. I’m not a “victim” but I am a “fighter and a survivor”! Don’t ever give up!!

I have a Facebook page at: Link to my ASLSUZYQ Facebook page

I have a Facebook group called “ASLExpress” at:Link to join Facebook group ASL Express

Lastly, I have an ASL group for allowing people to post ASL covers in a safe place, called “ASL Song” at: Link to ASL Song Facebook group

“Silent Impressions Productions” & I’m 2nd left
Me Interpreting at church before MVA
Me Interpreting a Song in “Silent Praise@ group

Me working at Deaf preschool
I was in newspaper when I taught elementary kids

My hearing aids

So You Think I Can Hear?


 

This is a quote from a dear friend of mine who is profoundly Deaf and he is a Professor of ASL at a University in Utah….with that being said….

This is a great blog post by someone on Tumblr, to whom I Subscribe. This is about what it’s like to live with hearing loss (*like I do and many others)..but still try to be functioning in both the Deaf/Hard of Hearing & Hearing worlds. Please feel free to visit & Subscribe to me on: Instagram, Facebook, Tiktok, Twitter & most of all YouTube At: ASLSuzyQ (the SC that I use most is: jewelrymkr)

that-kinda-deaf-girl.tumblr.com/post/152136758229/so-you-think-i-can-hear

I am also on Tiktok at: ASLSuzyQ

Overcomer


Hello Luvs,

I’ve decided to share this here with you. It took all I had, to do this song (3 1/2 minutes). I’m being quickly tapered from my LA/ER pain medication.*I had been a medical & educational Interpreter for the Deaf before my car accident in 2002. I have been through a lot as have

Many of you! This song and ASL (American Sign Language) mean so much to me. This song is called “Overcomer” by Mandisa. I think whether you know ASL or not, this song will give you chills. It does me!

https://youtu.be/R-fxeK1yXFo

American Sign Language


Hello Luvs,

Do you know that I suffered a TBI in a car accident in 2002? Did you know that I also had a CVA/Stroke in 2006? Because of these injuries, I have vision problems and hearing loss. I . had to wear prisms in my glasses for years and I have to use drops in my eyes daily or else I will go blind. The top layers of my eyes are a mess and this makes it difficult to see clearly at all, even with contacts and/or glasses. I also have 2 hearing aids to try and help with the hearing loss, which is moderate in my right ear and severe in my left ear. I am so lucky that I already knew and know ASL before the accident happened. I used to be an Interpreter for the Deaf at a University hospital and I worked at a school district as an Interpreter too.  My hearing is getting a bit worse as the years go by and I will be getting new hearing aids in the Fall of 2018. I’m not sad because I have been a part of a rich culture, the Deaf community, since age 11.  That is when I babysat for 6 Deaf children.  Then I went to college, a 4 year Interpreting program. ASL has always been a treasured part of my life. But how ironic that as an adult, a car accident has made it an even more important and treasured part of my life.

I truly want to get the non-profits that help people with pain, to become more accessible to the Hard of Hearing and Deaf community. I hope that I can make a difference because there must be many more persons like me, who live with daily chronic pain and who have vision and/or hearing loss. If you are reading this and you are part of a non-profit or an organization that helps people living with chronic pain, please think about it? Let me start a program for you? Let me help do something to make these pain organizations become more accessible. Thank you so much for reading my blog and for taking the time to look at the songs that I’ve done in ASL.

So, I just finished doing one of my favorite songs of all time, in ASL *(American Sign Language). The lyrics in this song makes me think about my one and only, soul-mate; my husband Craig. He is the only person who has ever truly shown me love and respect unconditionally. I love him with my whole heart and soul. I hope you enjoy this song and the others, performed in ASL. Please, if you enjoy it, click “like” and then “Subscribe” to my Youtube channel at ASLSuzyQ- My YouTube channel for ASL

Instead of just posting one ASL song here for you, I thought I would give you a few other newer song covers that I’ve recently done in ASL. I have posted the links for “A Thousand Years” by Christina Perri, “Fireworks” by Katy Perry, “Pulse” (its the song made for tribute to the Florida nightclub shooting in 2016 where many were killed and most were LGBTQ commmunity.), “Hello My Name Is” by Matthew West and “Where Is The Love?” By the Blackeyed Peas. Thank you for watching…

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