A View of Life

Jan. 24, 2017
It is with tears and sorrow that I share this follow-up interview relating to our friend, Heidi Marie Sheets, who is no longer with us physically but remains in our hearts. It is also with pride and admiration for her teenage daughter, Jenna Sheets, the author of this interview, for her remarkable courage and transparency, amidst overwhelming grief and loss. Jenna is a strong advocate for awareness of RSD/CRPS. Please keep Jenna and her family in your thoughts and prayers.
 
  1. How have things changed with you and your family since the initial interview 4 years ago?

For me personally I underwent an intense clinical depression.  I was quite unmotivated and in denial for a long time.  When my father finally got me a therapist that caused me to address my feelings, it had the opposite effect and I attempted to commit suicide.  When that did not work, I went through various addictions to pain and food.  I did end up gaining weight but have lost some since.  I have only recently felt like I have a handle on my mental stability.  My friends are very supportive but I don’t always feel as if I get that support at home, as I am just expected to succeed and do the right thing.  At this point in my life, however, I can talk about my mother without crying.  It is very difficult to remember her sometimes, however.  My twin brother says little things about her sometimes, as do I, but I do not believe her death affected anyone as much as it did me.

 

  1. How are you handling things?

Like I said, I underwent an intense depression and addiction and saw a therapist.  After my mother’s death I did not do much to participate in life.  Once I could not deny her death, I began doing many activities to keep my mind off of things and continue to put my heart into everything I do and use all of the time I have every day in order to get better at living my life.

 

  1. Have you grown through this?

I was independent before, but now I am much more so.  I have a job and am trying to get my license as well as put money away.  I have realized that I am my best chance of succeeding in life and doing what I love.  I felt very alone missing my mother, and still do at times.  She was my favorite person in the world.  But I had to make do with being alone, and I grew more independent from that.

 

  1. If you had to pick one positive thing that came from this, what would it be?  For example, bonding or unity within the family.

I have always viewed life as a fragile thing and knew that many people close to me would likely die before me.  I have always been taught, and learned to understand, these things. I suppose, before, I never really understood the value of life as I do now. It is easy to ignore pain until you experience it personally, or someone close to you does.  My mother suffered through a lot of her life emotionally and I never really understood what she felt, I just did everything I could to make her feel better.  I better understand life, and the way it works, now from suffering myself.

 

  1. What would you like the public to know about RSD/CRPS (the syndrome/disorder) - or life with RSD/CRPS?

People will never take notice to the true horrors of it because not enough people have it.  But RSD is not a forgiving disease.  My mom used to say having RSD was like being on fire and stabbed where she was affected.  The wind picking up could give her a rush of pain, as she was already so sensitive.  A person’s ignorance and the touch of her shoulder would cause her to whimper in pain.  No matter how strong the person, seeing people walk by, never knowing what you’re going through, being called a drug addict for needing medication, having family and friends not understand, being alone and in pain - all of these factors contribute to the decline of an RSD patient.  One thing I believe the public needs to know about this disease for sure is that many people, doctors especially, will say “RSD is not a fatal disease”.  The catastrophically high suicide rate begs to differ.  There is no cure, and no hope for a disease like RSD.

 

  1. And what is one thing you would most want your mom to know?

I spent the better part of my childhood, from when I could walk and talk, cleaning and cooking and helping out my mother as much as I could, but I still felt utterly useless.  I could not get a job and help with the bills. I could not always be there for her.  I couldn’t say “I love you” all the time, because I was growing up and too proud to say it.  I could not cry in front of her.  I could not show emotion, because I believed it was my job to take care of her.  I could not drive the car or walk to school when she was in pain in the morning.  I could not help getting stressed and yelling once in awhile.  I could not always understand what my mother was going through.  I could not be happy all the time, and let her be more happy from that.  I have done many bad things in my life since she passed away, and I apologize to you, Mom, for never doing more for you or myself.  I attempted suicide a little less than a year ago, and I know it was selfish.  I am sorry and will do better for you, Mom.  I am trying and just wish I could have done more.

 

  1. In what ways do you advocate for awareness of RSD/CRPS?

I have done multiple school papers including RSD, try and keep myself up to date with everything going on with the illness, and wear an orange ribbon around on RSD awareness month.  This upcoming year I am going to decorate my locker at school with ribbons and awareness symbols.

 

  1. Is there anything you would like to add that wasn’t asked?

To anyone with RSD, I know it is hard.  I am sure that sometimes it feels like life isn’t worth it and that you want to throw it all away.  If this is not true for you and you have a good coping mechanism, I am very happy for you.  If it is true, however, just know that even if people don’t understand, find people that do. Talk to them about it.  And know that your friends and family and anyone affiliated with RSD would be devastated if you gave your life away.  There are people that understand your pain.  



I give permission for this to be shared in book form, on social media and/or the internet.  Anything else is also fine.
 
 
*The original interview by Jenna's mother, Heidi Marie Sheets, can be found at http://intheblinkofaneyebook.blogspot.com/2013/02/rsd-interview-28-with-heidi-marie-sheets.html
 
 
Nov. 7, 2016

MAKE FOLKS AWARE

Color the world orange
And make folks aware
Of the painful disorder
That all of us share.
Color the world orange
And help us unite,
As strength in numbers
Will help win our fight.
Each warrior fights hard
But joined, side by side,
We're bigger and better
As more strength is supplied.
As we reach the public
With stories galore,
The number of treatments
Is bound to soar.
Then before we know it,
A cure will arise.
An answer to prayer,
An end to our cries.

Copyright Mary Jane Gonzales

 

Oct. 12, 2016

This series of interviews is a follow-up to the e-book Sharing The Pain: The RSD Interviews, which was published in 2013 and is available at Barnes & Noble.

 

 

1. Have you received any new diagnoses since the initial interview?

 

No new diagnoses.

 

2. Has your situation gotten better or worse?

 

Calmare Therapy (2 times 6 to 8 weeks) has brought my pain level down significantly (from 8-10 to 2-3). I also see a therapist two times a week, do meditation, use a CPAP machine, do energy work such as Reiki and EFT for my mental and emotional health. Additionally, I do music therapy to motivate and relax me. Plus, intensive PT when Workers’ Comp. approves it. The latter is done in my doctor’s office to stop the swelling, redness and neuropathy.

 

3. How are you handling things?

 

I think I'm handling things very well.

 

The pain is lower, which allows me to be more creative and more focused. Not being on mental health medications helps, also, for my depression and anxiety.

 

I'm learning to turn the negative of the pain into a positive, and  use my limitations for good, by helping others.

 

4. Have you grown through this - or are you stuck?

 

I have grown through this RSD CRPS experience. I have discovered new qualities and talents and have put them to good use. I'm definitely not stuck and I now help other people get unstuck by helping them meet their fullest potential.

 

5. In what ways do you advocate for awareness?

 

I advocate through the great JGF Organization, which is now the Chronic Pain hub for health and wellness. Also, on my radio station through the RSD and You show.

 

JGF Organization is the biggest, most positive family on the internet (for 8 years and counting) with a huge base of about 300,000 people worldwide. WIRN Internet Radio has done 700+ shows with 200,000+ listeners. My goal is to help at least one person a day with chronic pain. JGF Foundation Inc. is our 501c3, raising money for certain causes that are close to my heart, which include: helping RSD CRPS patients worldwide with the cost of  treatments, medical bills, etc. We are doing numerous fundraisers for the non-profit; such as: online book auction, Bravelet, Pink Zebra, and various other ways to donate to our foundation.

 

We also have JGF Enterprises LLC, which is the business end of JGF, recognized by the state of NY. Every year in November we do an event called OrangePalooza for RSD CRPS Awareness, with shows (a November to Remember), events, videos, information, etc.

 

6. What more would you like to add?

 

I think I said it all.

 

*Do you give permission for this to be shared in a blog, a FB post, or a book, etc.?

 

Yes, you have permission.

 

Thanks,

 

Joseph Aquilino

 

Sep. 24, 2016

This series of interviews is a follow-up to the e-book Sharing The Pain: The RSD Interviews, which was published in 2013 and is available at Barnes & Noble.

 

1. Have you received any new diagnoses since the initial interview?

Ciarabel is in remission, but it's not a true remission. She's off all prescription meds and isn't having regular doctor visits, but she still lives with daily nerve pain.

They classified her as being in remission, but she's a special case. Basically, her body was able to reduce pain levels, like she is on prescription meds, without taking them. With most kids, remission means no more pain, but her normal level of pain is still living at a 3-5 on the pain scale. She has flares several times a month still, where her pain levels get to a 7 or higher on the pain scale and even in "remission" her disease has spread. I was told her best prognosis was to have flares for the rest of her life and not a true relapse.

 

2. Has your situation gotten better or worse?

Her situation is better, but since the last interview her disease has spread. Even after going into remission, the disease has spread from her upper body into both feet. She ends up in a wheel chair at least once a year.

3. How are you handling things?
Ciarabel: I'm doing good. It's my life and I'm making it the best.  


4. Have you grown through this - or are you stuck? In either case, explain how.
She's definitely grown. She was scared and lost when she was first diagnosed. Now, she's found her strength and voice and can advocate for herself without me there.

5. In what ways do you advocate for awareness?
 Ciarabel: I talk about my disease and try to explain it to my friends. 
Mom (Christina): We hand out pamphlets yearly to her school teachers, so they can better understand her disease.

6. What more would you like to add? 
Ciarabel: I'm tired of living with this disease, but it's helped me work harder for things, like being able to play the French horn!
Mom (Christina): She's grown so much from the scared eight year old into the brave twelve year old. She lost her innocence from this disease but gained bravery, compassion, and determination. She takes nothing for granted and we live each day to make sure she has the best life possible. There is heartache when she can't do things her friends can do, and tears when she ends up in a wheelchair unable to walk, or in a sling unable to use her arm, but the victories are greater and sweeter.

*Do you give permission for this to be shared in a blog, a FB post, or a book, etc.?

Yes, we do.

 

Ciarabel and Christina McSwain

 

Sep. 16, 2016

 

This series of interviews is a follow-up to the e-book Sharing The Pain: The RSD Interviews, which was published in 2013 and is available at Barnes & Noble.

 

 

1. Have you received any new diagnoses since the initial interview?

 

My CRPS has spread to the orofacial area since I had oral surgery in September 2013. I had my entire tooth structure removed, after waiting a solid year for the surgery. Previously, I had been told by the medical and dental school in my state (via postal mail) that I “did not have a diagnosis requiring treatment in an academic medical setting." Since I was not a resident of the county they were located in, they were unable to help, as their policy was to ‘decrease the long wait for **** County residents’. Without receiving treatment, every tooth in my mouth abscessed, on top of having RSD. I felt like I was going completely mad, at times. I am grateful for my faith, having rededicated my life to God on Christmas Day of 2012. I realized that I had been following a mortal, and doing it at my own expense, when it did not appear that person was too invested in making their own life look acceptable. I read somewhere “Those angry with you for speaking the truth are busy living a lie.”  That was also when I began showing myself some compassion and respect. A friend and his crew in law enforcement gave me Harry Potter - Part 6, each autographing the inside cover, one writing “Respect yourself.”

 

 As a complication of the oral surgery, RSD/CRPS progressed to the point that few providers in the state of Nebraska want to take on a patient like me, even at the university level system. I know there are likely additional problems and, medically, it does not provide me with a good or hopeful outlook.  However, with God, there is always hope; even when it is something better that lies in my future, like being with the Lord.

 

 I did recently locate a provider in my state who is willing to see me and do something to help, after hearing my story, even though he does not accept my insurance. It is a true relief after a year of calling (in 2012-13) the same list of people (five pages), all of whom told me, “There is nothing I can do, I am not qualified.” This offers me hope, even if all he does is provide my primary care with some kind of compass in treatment.

 

 2. Has your situation gotten better or worse?

 

This depends on your perspective. If you are referring to the RSD or the Gastroparesis, things are far worse. In the past year, I spent six months on TPN. It was hard on my liver but, even so, I managed to find that the rest of me did feel better. My current GI is at a loss on what to do in terms of management. I will admit it doesn’t feel useful to sit in bed day after day in excruciating pain. Orofacial RSD/CRPS offers a new dimension in pain.  And it does tax the rest of my body.

 

I also realized that I deserved better. With respect to my family of origin, I have put an end to the hurtful and destructive relationship with two people who are supposed to love and guide you unconditionally.

 

 Spiritually, I think right now, things have gotten better.  I am incredibly proud of my son who has four beautiful children. In spite of his own father’s limited participation, my son has managed to find his compass towards being a wonderful father, husband, and provider for his own wife and children.

 

Regardless of a “diagnosis”, I know that whether referring to RSD, Gastroparesis or any other disease, I am more than that. I am not a disease or diagnosis, just a person who struggles to live with this stuff. When I went to nursing school, they taught us that people were not their diagnosis. I was taught it was never acceptable to see someone, for example, as “the asthmatic in Room 5, the diabetic in Room 6, or the bipolar in Room 9.” And, with respect to the latter, that anyone who came through the doors of our ER wanting to kill themselves, to die, etc, was to be considered as critically ill as the person who came in with an acute heart attack.

 

3. How are you handling things?

 

Each day can be a struggle, even keeping a positive attitude. Those are the days I find myself in prayer and holding on, as I put it, “by a thin thread.” One thing I know this makes me is human. This disease can cause PTSD, which I already have. A while ago, I got a “refresher” in EMDR, which is the treatment of choice for PTSD. Much of the time, it makes PTSD worse. I have to take things one day at a time, or one minute at a time, and accept what I cannot change.

 

Often doctors, though they mean well, want to stick you on an antidepressant, saying the depression is normal, the grief you feel towards lost function, the increased disability, etc, is normal. However, for me, those mental health medications do not help. They make things worse, as does seeing a therapist to relive the frustrations of living with this, or the bad memories and aggravations prior to diagnosis. And sometimes we all have traumatic experiences in that setting, as a result.

 

4. Have you grown through this - or are you stuck? In either case, explain how.

 

I certainly hope I’ve grown through this.  It is not our challenges that define us. They serve as a guide  that helps us find our strengths. When that happens, I believe we are no longer a victim, but a survivor, which in my book is far preferable than “living the disease.” The challenges also serve as learning experiences. Even when you make mistakes, you learn from them, accept responsibility, live with the consequences by owning up to it, making sure it does not happen again. As a nursing student, there was a sign in the practice lab, which read “Tell me, and I may forget. Show me, and I may remember. Involve me, and I will understand.”

 

5. In what ways do you advocate for awareness?

 

I advocate to providers for them to learn about this. I ask them to put themselves in my shoes, and be forced to have to do things, such as take photographs of their body in order to simply be believed. I ask them how they would feel if what they got every time was “Liar, faker, drug-addict, drug-seeker, malingerer, psycho, psychotic, neurotic. And I ask them if they have been asked some of the questions that I have along the way. Those are questions that I won’t repeat, as my experience has differed. Then I ask them how they’d feel about laying in bed, day in and day out, with pain that I rate on a scale of “Owie” to “Shoot me”; not with a number. And would they want a tube feeding in order to do so?

 

6. What more would you like to add?

 

First, I want to thank God for carrying me and the weight of living with this the whole way, even when I was not aware of His presence as much as I could have been. I want to thank Him for helping me see that I was not following Him, but worrying more about judgment by a mortal before I worried about God’s view on how I was living. I am grateful to friends who provided the support, the encouragement, and (in some ways) guidance along the way that kept my compass pointed in the right direction.

 

*Do you give permission for this to be shared in a blog, a FB post, or a book, etc.?

 

Of course!

 

A. J. Johnson