Tuesday, June 14, 2016

Melissa Swanson Interview: An Advocate’s Journey Cont’d


Advocate - Melissa Swanson




In part one of my interview, Melissa Swanson: A Rite of Passage with Fibromyalgia, we learned how Fibro Warriors ~ Living Life came to be.  Now we will explore how she became a leader, an advocate, a writer, a certified fibromyalgia coach, and author. 





Celeste: What have you done to promote awareness of fibromyalgia? 

Melissa: I am a co-leader of an in-person fibromyalgia support group and an online support group, Fibro Warriors Facebook page. Our group now has over 18,000+ likes.

I began writing for FibroModem's emag, Living Well with Fibromyalgia, March 2013.

In 2014, I attended the Leader Against Pain Action Network training program in Salt Lake City, sponsored by the National Fibromyalgia & Chronic Pain Association (NFMCPA) and began volunteering as an advocate.

In the past two years, I secured a proclamation from Wisconsin Governor, Scott Walker, declaring May 12th National Fibromyalgia Awareness Day. I wrote for the NFMCPA's newsletter Advocate Voice and worked as a volunteer at the TAP conference sponsored by the NFMCPA in Washington, D.C. And, I helped host NFMCPA’s first annual Together Walk

In June 2015, I was hired as a contributing writer at ProHealth.com.

Last summer, my daughter and I traveled to Boston so I could Interview former New England Patriots NFL player, Dominique Easley and his 16 year old sister, Destinee, who has fibromyalgia. We attended the kids training camp orchestrated by Easley and several of his teammates to raise funds for fibromyalgia research. Finding balance between work and play, my daughter and I went whale watching, toured Salem, and waded in the ocean. As daughter and mother, we learned and shared together because of this unique experience.

Celeste: How have you expanded your support role?

Melissa: I love to teach others how to help themselves, so I attended the International Fibromyalgia Coaching Institute and became a Certified Fibromyalgia Advisor. I wrote about my experience in a ProHealth article, Everyone needs a Coach in their corner.

Celeste: What can others do to help support and encourage their friends and family?

Melissa: This is a message to friends and families. If you know someone who has a chronic pain illness, don't assume the person feels good because they don't look bad. Fibromyalgia, and some of its sidekicks, is invisible. When you ask how your friend feels, validate what they tell you; otherwise, she/he may feel you have become desensitized to what we experience. What we need to hear is that you believe us.

Don't give up on us! Just because we have turned down your last 5 invitations, it doesn't mean we don't want to spend time with you. For instance, I have one non-fibromite friend who has learned I can't go to coffee at 9 a.m. She knows I probably won't say yes to a long day of shopping. Instead, we may meet at 10:00 for coffee or we arrange to sit in the sun and chat.

A great way to support your chronic pain friend or family member is to share your life struggles or concerns, and be willing to share what you need for support too. When you do this, we feel needed and you understand why it is important to have mutual support, such as listening when we tell you about fibromyalgia and advances that are important to us. It is mutual sharing and caring that helps a good relationship become great.

Remember, asking small favors such as, can you turn off the light downstairs, drop off a book, or cook a favorite meal can be stressful depending on the circumstances surrounding the moment. The hallmark of fibromyalgia is its unpredictability. One day, one hour, we may be perfectly able to do an errand, but in the next moment, we are not. And, please don’t ask why, because we don’t know the answer. We are not faking it, and when we feel you don’t remember our character is the same, it chips away at our independence.

Lastly, don't be surprised if you text your friend and she/he does’t need any help. We still have good days, even great days, depending on how we are coping in the moment. What’s important is that you took the time to ask and make the offer.

Celeste: What is in your future?

Melissa: My first children's book is to be published this summer.

CelesteHere is a brief introduction to Ravyn's Doll: How to explain fibromyalgia to your child. 



All the kids in class made paper dolls to show how someone they love is hurt or is sick. When it's Ravyn's turn, she shows a paper doll of her mom — and she looks perfectly fine!  Ravyn tells  her classmates that even though her mom looks healthy, she’s not! Her mom suffers from an invisible illness called fibromyalgia and its evil sidekicks.



 "Ravyn’s Doll helps children understand an invisible, 
chronic illness and explain it to others." 
~Jan Chambers, 
President of the National Fibromyalgia and Chronic Pain Association

I am so excited about this book. It is truly different from anything else available, and it is needed. I am honored to have the opportunity to give a review, which you can read when the book is published. Please join me in wishing Melissa great success as a soon to be published author. Congrats, my friend and thank you!


Conclusion

I did this interview because I wanted you to know more about Melissa. When she first asked if I could help as a mentor, I had no idea how rewarding that would become for me.

Not everyone has the same talents, and what a blessing that is. If you are an advocate in waiting, don’t dawdle; reach out the way Melissa did. You have something to share and it’s important that we keep the torch lit.

“Everyone has been made for some particular work,
and the desire for that work has been put in every heart.”
~Rumi

I am so proud of Melissa’s achievements, but most of all, I am proud of the example she sets for her daughter on overcoming obstacles, turning them into triumphs. This is a lesson we can all learn and carry with us throughout life.  

You can subscribe to Melissa’s blog, Fibro Warriors ~ Living Life, to receive current news and information on giveaways.





Besides being a staunch advocate and a National Fibromyalgia and Chronic Pain Association Leader Against Pain Melissa is a Chronic Illness Blogger and contributing writer at Prohealth. You can connect with her on Facebook and Twitter.



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"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.


All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Saturday, June 4, 2016

Melissa Swanson: A Rite of Passage with Fibromyalgia


The spring months bring with them a plethora of advocacy opportunities for chronic illness awareness. In my blog, May Awareness: Sharing Our Spoons, you can see the number of disorders recognized, and June is awareness month for migraine. I bring this to your attention as an introduction to a very important interview. My friend, Melissa Swanson, fellow writer, and advocate who lives with fibromyalgia, migraine, and what she calls the “evil sidekicks” of fibromyalgia speaks with me about her experience as an advocate and shares great examples of how diversion and helping others has become her flagship for survival.


Celeste: How did you become an advocate?

Melissa: My journey with fibromyalgia officially began in 2009, although I had several of the underlying symptoms for 20 years prior to my diagnosis.  I spent most of my free time searching internet websites and Facebook (FB), hoping to get tips from those living with fibromyalgia and what I call its “evil sidekicks”. What I found was discouraging. I thought my future would consist of a wheelchair, spending most of my time in bed, and giving up all activities with our daughter. What I wanted--and needed--were words of encouragement and hope.

I became friends with a fibromite, and endearing term we use to describe those who are part of the fibromyalgia community. Laura and I were both struggling with the negativity surrounding fibromyalgia and felt a need for positive behavior reinforcement and reputable medical information. At the time, I was already blogging about my personal journey. Laura convinced me that other's would want to know they were not alone and on September 16th, 2012, the Fibro Warriors ~ Living Life Facebook page was born. It has since blossomed into a support group that strive to help others understand what it means to “LIVE LIFE” with fibromyalgia.

As it continued to grow, so did I. I started contacting experts in the chronic pain community, reaching out to them for help in promoting accurate information. That’s when the dragonfly was born.


Dragonflies have always amazed me. They start to grow in water and then move into the air and fly. They have to adapt to their changing environment. In many cultures, the dragonfly symbolizes the change necessary for reaching your full potential. I strive to live my life like a dragonfly.


Celeste: How has this enriched your life?

Melissa: I have the opportunity to meet and collaborate with incredible people. I have friends around the country that have become family. I value the time I spend with my daughter doing "normal" mom-daughter activities, and I have found ways to enhance the quality of my life by what I do.

Celeste: How has your advocacy helped to divert your attention?

Melissa: I have a perfect example. I am a co-leader of a support group that meets Saturday's from 10 a.m - 12 noon in Golden Valley, MN. I was asked to run the April meeting. I was prepared for the meeting but when Friday arrived, I began to dread getting up early to make the Saturday morning commute, one hour each way. That morning I was exhausted and in pain, but the minute I arrived at the meeting I was filled with an adrenaline rush. The excitement of seeing other members, the discussions that ensued, and the gratitude others expressed made it all worth it. The good feeling lasted even after my hour drive home and my hour nap.   

I have found that when I am researching, writing, creating a picture, texting a friend in need, working with a new client or a project with the NFMCPA, I am focused on helping others. All these things divert my attention from the pain, depression, and loneliness that comes with chronic pain illnesses.

Celeste: How does living with a chronic pain disorder improve your self-worth?

Melissa: That answer requires me to do some self-reflection. I have written poems and mini-stories since I was in high school. In my senior year in high school, I was on the yearbook committee and my 25-year reunion story was used. Only my closest friends knew it was me that wrote it. I did not have the self-confidence to share my work, because I was afraid of what people would think. Like most of us, I was terrified to give speeches in high school or college. But now that I am an advocate, I focus on the message instead of what others think. I now have strength and confidence to speak out for millions of others facing the same problems. I find a sense of worth by being supportive of others who contact me. I have learned that by sharing my stories, others know they are not alone.  At our last support group meeting, I ran a short session of laughter yoga.  It is possibly the most ridiculous thing I have ever done, but I felt none of the usual anxieties because I knew that everyone there, despite their apprehension in participating, would have ten minutes to escape their worries through diversion and mood elevation.

Celeste : How do you feel writing a blog has helped you?

Melissa: I feel blogging about my experiences and my personal truths provides a platform from within. As a person who was self-conscious about sharing, I now find it liberating. ChronicPainDisorders.com and Healthline have both named Fibro Warriors ~ Living Life as one of the "Best Fibromyalgia Blogs".

I am honored that Healthline said this about my blog:  “This Blog has just about everything you need to read on the pain and exhaustion brought on by the illness. Look for treatments, must-reads, facts, and more. This married, full-time working mom is a true warrior against the debilitation's of fibro.”

To Be Continued


I know how difficult it is to hold our attention and I want you to hear all about Melissa’s journey, so we will pick up where we left off in "Melissa Swanson Interview: An Advocates Journey" where Melissa continues to share her role as advocate, writer, and the road she now travels.


You can subscribe to Melissa's  blog, Fibro Warriors ~ Living Life, to receive current news and information on giveaways.


Besides being a staunch advocate and a National Fibromyalgia and Chronic Pain Association Leader Against Pain Melissa is a Chronic Illness Blogger and contributing writer at Prohealth. You can connect with her on Facebook and Twitter.


Stay tuned!



~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.


All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  


Thursday, June 2, 2016

Hiding in the Shadow of Migraine


"Hiding my migraines on the set may have been my toughest challenge as an actor. There were times when the pain from migraine headaches was so severe that I literally had to crawl across my dressing room floor. But I couldn't let anyone know. If they thought I might slow production, I figured that would end my career."
~Morgan Fairchild

"I can't tell you how many shows I've done with full-blown migraine headaches."
~Jonathan Taylor Thomas

"This is a soul under perpetual migraine attack."
~Richard Schickel

Despite all the evidence that migraine is a neurobiological disease, we still feel the stigma of migraine.

Having lived with migraine for 50 years, I have seen advances. Gone are the days of seeking emergency care to get a shot of a narcotic, so I could hopefully ride out the attack, but even that resulted in a miserable narcotic hangover headache. It's a sad commentary, when misery is the better scenario. Unless you have migraine disease, you simply cannot understand what that means. It is so much more than a bad headache. It will cause sane people to do crazy things.

"I didn't feel physically sick. But mentally. My mind was twisting in so many ways. (...) We once saw a documentary on migraines. One of the men interviewed used to fall on his knees and bang his head against the floor, over and over during attacks. This diverted the pain from deep inside his brain, where he couldn't reach it, to a pain outside that he had control over." 
― Jay Asher

A few years ago, while on respite in the Rockies, I suffered a horrible attack. I awoke at 4 a.m. (What I have come to term migraine reveille). Nothing helped and I spent that night in unbelievable pain, vomiting and having diarrhea. None of the tools in my kit worked. It was refractory.

As with nearly all my migraines, my right eyelid was drooping, and my right eye was crossed. My entire scalp was numb and tender, so I couldn’t hold my hair to keep it out of the way. On the second morning, I knew I needed help. So my husband contacted the ranger and we made our way to urgent care in a nearby town. It was a pain filled and anxious journey, because I had to leave the security of my commode.

On arrival, despite looking ragged, rugged, and severely ill and having symptoms that could suggest I was having a stroke—I heard the comments. “This one SAYS she has a migraine”. It wasn’t until after I told them I needed an Imitrex injection and supportive care that they established eye contact. That’s when I was wheeled to a gurney. My blood pressure was through the roof despite severe dehydration (and a lifetime of combating low blood pressure). I was decompensating, my body’s fight or flight response was in full gear, I knew it, and they knew it. Now they were yelling for the doctor as they put me on a cardiac monitor. Urgent care began; IVs with electrolytes were started; I got my Imitrex injection and something IV for vomiting. I also got a muscle relaxant, because cervical neck disease, myofascial pain syndrome, and occipital neuralgia are among some of my triggers. All effects of a refractory migraine need to be considered to break the cycle. When my symptoms improved, and my vital signs stabilized, I had something to say.

Having been a board certified emergency RN; I knew their judgmental attitude was inappropriate, and as a past legal nurse consultant, I can say, their behavior was neglectful. I said some of the following at the time, some I included in my letter to the administrator, but I think you will get the gist. I told them:

·        It’s important to understand migraine.
·        Establish eye contact with your patient.
·        Take a good history and do a physical exam, including neuro checks.
·        Sick people seek drugs too, and you should be compassionate when you hear the word migraine, not make judgmental statements.
·        I am acutely aware that addicts say they have migraine to get narcotics.
·        Not all migraineurs respond to abortive medications and patients look to you for treatment.
·        As urgent/emergent care providers, you should know what is in your arsenal to help the migraineur.
·        Because a migraineur asks for a narcotic, it does not mean they are an addict. It could mean a narcotic is the only thing they have been offered in the past, there could be a variety of other reasons, but you won’t know without that history.  
·        How you respond could mean the difference between helping and contributing to stress, including suicide. It has happened.
·        Even though I will not start the HIPPA complaint process, you violated my rights to privacy by discussing my case where others could hear.

In a teachable moment, I emerged from the shadows of migraine.


Many migraineurs live in the shadow of their disease, do you?




You can help raise awareness by participating in the American Headache and Migraine Association’s social media campaign. Teri Robert, founder of the AHMA has done the work for us. Learn how to get started, here.





~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.


All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Wednesday, May 25, 2016

Update: S.483 Ensuring Patient Access and National Pain Strategy


It’s hard to believe that it has been a year since I first made a call to action on S.483

A lot has happened since then. The act was signed into law by President Obama on April 19, 2016. That’s right, just last month. In March, the CDC opioid Guidelines went through despite outrage regarding the lack of transparency and biased, non-evidence based reports on opioids that led to the development of the guidelines. The National Pain Strategy (NPS), which was drafted to the Federal Registry last year, was also released in March after a long and concerted effort by many engaged individuals and stakeholders, but not without incident. A comment was added on the NIH Interagency Coordinating Committee website, the HHS committee that drafted the guidelines, suggesting the CDC Opioid Guidelines would help implement the strategy, despite no such reference in the original NPS draft.

The National Pain Strategy

The Pain Action Alliance to Implement a National Strategy is an initiative formed by the Center for Practical Bioethics. My friend, Myra Christopher, contributed to the development of the Institute of Medicine Report on Relieving Pain in America. She and many others knew as a result of that report a strategy was needed to address the problems identified having to do with access to medications and treatments, discrimination in pain care, and the stigma associated with chronic pain. Along  with other stakeholders Myra participated in helping draft the National Pain Strategy (NPS).  Myra and PAINS are now calling on President Obama to see that actions are taken to make the necessary funds available to carry out the plan. The letter is riveting and I hope you will read it. Here is an excerpt.

1.       Immediately direct the Office of the Assistant Secretary for Health at the U.S. Department of Health and Human Services to develop and, before the end of 2016, initiate a plan across all federal agencies to restore balance between federal efforts to reduce drug abuse and efforts to reduce the burden of pain in order to establish parity between these two critical public health issues…
2.      Designate a specific agency to be responsible for implementation of the National Pain Strategy Report and establish an independent work group, including people living with both chronic pain and opioid abuse disorder and/or family members, primary care providers and specialists who treat chronic pain, behavioral health experts, complementary care providers, third party payers, patient advocacy groups, and bioethicists to…
3.      Direct CMS to establish chronic pain care as an essential health benefit as quickly as possible and to adequately fund:
a.      Comprehensive chronic pain care provided in primary care medical homes and inter-disciplinary, comprehensive pain clinics,
b.      Evidence-based complementary therapies, including yoga, massage therapy, acupuncture, chiropractic and osteopathic manipulation (those therapies specifically listed in the DOD pain report), and
c.      Abuse deterrent opioid formulations.

Can S.483 Work to Support Patients Who Have Been Abandoned?

As a result of the CDC guidelines and reports that the DEA is charging full force, I have received many emails and messages regarding patients being forced to taper off their opioids or stop them completely. Of particular interest is what is happening to patients in Buffalo, New York, but it is only one example of what is happening across the nation. Because I have been overwhelmed and I donate my time to advocacy, I felt the need to provide patients with some guidelines that will hopefully help them make a case to take to their attorney general. Ensuring Patient Access and Effective Drug Enforcement Act of 2015,  S.483, also protects patients and gives you the right to make sure it is enforced for everyone, including those of us who live with chronic pain. But, you will need evidence that you have been harmed. You can find out what that entails on my website, here.


 “There's a difference between interest and commitment. 
When you're interested in doing something, you do it only when it's convenient. 
When you're committed to something, you accept no excuses; only results.”
~Kenneth Blanchard


Additional Reading:
Gosy & Associates to reopen under new supervision. Bridge the gap solution within 75 days, really?


~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Wednesday, May 11, 2016

A Year of Fibro: Musings, Writings, and Opinions


A Gift from Shari-In My EVFM Support Group
Being a published author five times,  I know great joy and diversion from my own pain. I truly enjoy what I do. 

Writing for ProHealth and Health Central  is a great opportunity to learn  from the enlightening comments you take the time to share.

We make great strides learning to cope with the effects of body-wide pain, non-refreshing sleep, problems putting thoughts and concepts together, and exhausted body systems. (If you are struggling to find balance, please pick up one of our books). 



As I count my spoons, I remember my fellow warriors who also live with invisible illness and pain. As my dear colleague, Dr. Robert Bennett and his team say,  “A careful clinical evaluation is always required in order to identify any condition that could fully account for the patient’s symptoms and/or contribute to the severity of the symptoms.”  It would be overwhelming to include all my articles, but you can find them on my website now. Following are articles through last May on fibromyalgia and common overlapping conditions.  Please take your time, favorite this link and revisit it when you have a particular question and please share what you learn with others in the comments where the articles are posted, that’s how we all learn.

In healing and hope, Celeste






Some of you may know I am having cataract surgery on the 12th. It’s important to me to have better vision so I can continue what I love to do. This blog was prepared in advance to raise awareness for FIBROMYALGIA AWARENESS DAY. I hope you will help me spread the word by sharing this list of fibro related articles.







~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  


Friday, May 6, 2016

Dear Legislators-Stop S.2758 - PROP Act of 2016



An article written by Pat Anson, editor at Pain Network News, PROP Leads New Effort to Silence Pain Patients, prompted me to respond in my comments, and take it a step further by letting my legislators know how I feel. Once posted on my blog, this letter will also be tweeted out to various individuals and shared on my various social media accounts. I hope you will do the same.

You can find contact information, including how to contact your senator, representative, and others on my website at the bottom of the "Advocacy Template Letter".



April, 2016

RE:
H.R.4499
S.2758 - PROP Act of 2016
A bill to amend title XVIII of the Social Security Act to remove consideration of certain pain-related issues from calculations under the Medicare hospital value-based purchasing  program, and for other purposes; to the Committee on Finance.


As an RN who worked her entire career in the hospital setting, writing policies and procedures for staff development and working closely with hospital standards, the Joint Commission, and the American Society of Hospital and Education and Training (ASHET), this Act is deplorable. Surgical pain is clearly not the only pain that needs to be addressed in the hospital setting, though controlling pain improves healing and patient outcome in surgical patients, gets them moving, and prevents things like pneumonia. Pancreatitis, the affects of systemic rheumatologic events, kidney stones, broken bones, burns, and even heart attack are among the hospital patient population requiring pain care.

How would you feel if you were given morphine during a heart attack, which we know improves cardiac output, and you were not reassessed? What if your daughter develops post partum pancreatitis and suffers needlessly? What if you have a kidney stone and you are left to pace the ER with no relief? What happens if a patient’s pain creates an ugly primal instinct that puts hospital staff at risk? You MUST pay attention, because that is exactly what will happen. Hospital policies and procedures are based on what their governing bodies (i.e. CMS and JCAHO) suggest and find important. When outcome is the goal, patients are less likely to be readmitted. There is a very good reason that hospital pain care should be assessed by the patient. Patient suffering to boost PROP, Phoenix House, profit margins is inhumane.

Please support the efforts of Lemeneh Tefera, MD, Centers for Medicare & Medicaid Services and stop the lunacy created by the PROP Act of 2016, S.2758.


Sincerely, Celeste Cooper

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Resources of interest:

S.2758 - PROP Act of 2016
04/07/2016   Read twice and referred to the Committee on Finance.
Type of Action: Introduction and Referral
Action By: Senate

H.R.4499 - PROP Act of 2016
Sponsor: Rep. Mooney, Alexander X.  [R-WV-2] (Introduced 02/09/2016)
Committees:  House - Ways and Means
Latest Action: 02/11/2016 Referred to the Subcommittee on Health.  (All Actions)

Measurement of the Patient Experience Clarifying Facts, Myths, and Approaches ONLINE FIRST
Lemeneh Tefera, MD, MSc1; William G. Lehrman, PhD2; Patrick Conway, MD, MSc3

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Celeste's Website

Celeste's Website
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