How Vanity Saved Me

A note from the author-This is my personal story and though these medication may work wonders for some they had very negative side effects for me. Also, I am not a doctor, or a medical professional I am just sharing my experience.

How Vanity May Have Saved Me

and

Are your Meds Making You Sicker?

My sister was about to marry her high school sweetheart, I had done everything I could to lose the fifty pounds I had gained since I had been put on Lyrica and Gabapentin for my Complex Regional Pain Syndrome. Six weeks prior to her wedding I had spent in complete bed rest and to be honest I almost didn’t go, but I dearly love my sister, and I wouldn’t miss it for the world no matter how sick I was. Turns out I was really, really sick. It was four years since my diagnosis, the first year I started out on just Gabapentin, right away I was put on 2400 milligrams, by year two it had stopped helping pain and it was reduced some and 300 milligrams of Lyrica was added among other meds. You see, chronic pain patients often take other meds to combat the side effects of the meds they are taking. I knew I had a lot of the negative side effects from Lyrica and Gabapentin, I just didn’t realize how bad it was, all of the side effect sneak up on you very slowly like a thief in the night the steal the most precious jewels of your life. Here’s what I didn’t realize.

  • I was sleeping 16-18 hours a day
  • I was too exhausted most days to even get dressed
  • My personality had changed, I hardly ever smiled or laughed anymore, I had become Debbie Downer.
  • I was in a very, very dark place, I didn’t care if I lived or died-I will say-because of my religious beliefs and the love of my family I wasn’t suicidal, but I had pretty much stopped caring, and It was all because of the hold the meds had on me.
  • I couldn’t think clearly or remember things.
  • I had to stop driving, I wasn’t safe on the roads.
  • I couldn’t eat right, I would often throw-up.
  • I was constantly bloated.
  • My hands, arms and legs and feet were extremely swollen making my pain much worse. This was another slow effect that I didn’t realize.
  • Really couldn’t learn anything new-a recent study by Stanford medicine show that both meds cause brain damage, they are currently unsure if it is permanent, my hope is that class action cases will follow.  I haven’t regained full mental clarity.
  • I was having hot flashes and then cold flashes.
  • Extreme weight gain

I survived the wedding embarrassed to still be carrying around all 50 pounds, but determined to do something about it, I saw how bad I looked on everyone’s face, not that they were body shaming me, it was more of what they didn’t say that said it all. But, I was in so much pain, and felt so miserable there wasn’t much I could do, as soon as the ceremony was over I went to sleep. I truly believe my body was completely toxic, Lyrica builds up in your system from day one of taking it, and will eventually just stop working.

That week, when I returned home, I demanded to be taken off of Lyrica and Gabapentin. I had no idea what I would go through. I would soon begin the worst two months of my entire life!!! Pure Hell. I later learned that detoxing from Lyrica is equal to detoxing from Heroin. They sell Lyrica as a non-narcotic drug, I can honestly say it is worst than any narcotic you could ever imagine taking!!! My doctor gave me 50 milligram starter packs to taper down every three days. Here’s what I went through every three days:

  • Nausea
  • Vomiting
  • Fevers/chills
  • muscle spasms
  • insomnia
  • Breathing difficulty

Every time you drop down the dosage withdraw starts over, I was also informed that it is often a good idea to check into rehab, because this type of detox can be dangerous. I was very blessed to have grown family members by my side the entire time and people making sure I stayed hydrated and eating crackers. For two entire months.

My question is this? Is the off label use of Gabapentin and Lyrica really the best first line of dense for Complex Regional Pain Syndrome? I often watch the commercials and feel like they are so deceptive when I see people doing yoga and riding bikes for a drug that just makes you want to curl up in a ball and sleep, or worse? Why is it the number one drug used to treat most chronic pain? How many people are we loosing in the RSD/ CRSP community to these meds. I truly believe they are mislabeled by the FDA, and should come with stronger warnings than any narcotic, I also think that before prescribing this type of medication the doctors should talk with patients about what the detox could possibly be like. My other question is are the side effects of these drugs possible being thought to be symptoms of CRPS when in fact, it is caused by the drug, as I was detoxing, my pain in some way became less and less. We don’t keep accurate numbers about the loss of life to CRPS so we don’t know for sure if the medication could be killing people? I know it is a huge accusation, but I know if I had of continued I don’t know if I would still be alive, something in my system was really off, and even my doctor was confused. Once I stopped the Lyrica and Gabapentin, the problems stopped. It’s food for thought, I don’t want to lose anymore of my Pain Pals and that is why I feel it’s important to share this information and my own experience. Did vanity save my life? Maybe, I like to think of it more like God’s amazing grace, set the light bulb off in my head that something was horribly wrong and because I am a very sad to say human- person He used a weakness to make me aware-vanity!! May God bless all my friends suffering with pain!

Written by Jenny Peery

The Gift of the Journey

I have been gone for a while, I had to make major changes which I will share eventually. No one likes to deal with chronic illness, it isn’t fun, it’s like having a toothache that never goes away. What I would like to talk about is the upside, because yes there is an upside. For me, it’s been four years, for the most part I know what I am dealing with-I have come to terms with my monster-I know what days he will show up, and usually when he will be at his worst, mine feeds on weather changes, stress, doing too much, and making poor lifestyle decisions. In some ways you can keep the monster tame, making better food choices, eating really clean, not necessarily organic, I mean not eating processed, or fast food, sugars, fats, or salts (the good stuff). I can’t always control stress, although those around me try to protect me from it, my common reaction is pain and vomiting, yeah it’s not very fun!

Here’s the upside, it’s knowing how to really enjoy the upside. To really live in the moment on the good days. To feel the wind on your face, to sit outside and enjoy the sun, to laugh. These sound like really basic things but think about all the things that we think we need to do and have that don’t really matter, when your world becomes smaller you learn what does matter. You learn to enjoy the simple things. To listen to the words and the notes of a song, to read your favorite book again, to really sit down and pray for someone, or listen to a friends problems or needs.

We live in a crazy world where people don’t connect, I have met the most amazing strong, fabulous people that I would have met had I been healthy, this has been a blessing to me. They have taught me to find peace and strength, to not give up, to find hope, to fight even when it hurts, and to believe that someday there may be a cure, and even if there isn’t- life is still amazing! Most of all, to never, ever give up! Enjoy the journey!

A Broken System!

If you live in California-I strongly recommend not getting injured on the job! This is my experience and I know others may have extremely different experiences. In 2013, when Workers Compensations Laws changed insurance companies saw the loop holes in the new laws that clearly only benefit the Insurance Companies. This in no way is any reflection upon my employer, as he is a very just, and honest man, clearly he has no idea how I have been treated. The result of  the laws in California has given them the ability to deny anything and then it is  sent to an independent medical reviewer, these reviewers  are completely nameless and without any of their credentials, this means any MD could be making life changing decisions on my treatment. So basically, a plastic surgeon  could be deciding what treatments I receive without being any sort of expert on my condition, and gets to be nameless and faceless. Is this fair? I think not? Yet the injured worker goes without justice, my lawyer says it’s a broken system. So I worked hard for twenty-five years, and due to no fault of my own developed tendonitis, and then had the unfortunate pleasure of a nerve being destroyed during a cortisone shot-triggering Complex Regional Pain Syndrome. When the pain is really bad, I often vomit. Two out of three days,  I am often bedridden, I have stopped driving, and something as simple as a bath is exhausting. Their doctor labeled me as 39 percent disabled, the truth is I am more like 80 percent disabled. Complex Regional Pain Syndrome on the McGill pain scale rates higher than childbirth, limb amputation, and cancer. Imagine going without treatment or relief, sometimes it is so bad I just rock back and forth. I don’t want sympathy, but I do want relief.

In the mail the other day, I received the latest list of non-covered services, my doctors office told me I would get better care if I was on Medi-Caid. I have worked my entire life and never asked for a handout from anyone, I enjoyed my job, and my life, and my career. If I was healed tomorrow, I would gladly return to work-I miss my old life. My doctor had asked for pretty standard treatments for someone with Complex Regional Pain Syndrome-nerve blocks, standard meds- Lyrica, muscle relaxers for spasms, low level pain killers, and Ketamine infusion therapy, Ketamine lotion- all were denied. Not one single thing covered. So what am supposed to do? Stop taking all my meds? Accept the fact that not only do I have to live with pain, but now I have to do it without medication? Curl up and die? There is no cure, but isn’t it some sort of human right to be able to live with a lower pain level  and receive standard care? Did Jerry Brown even read what he was signing?  I am not one of those people that abused the system in the past, why am I being denied care??? Is there anyone who is able to take the pain of CRPS without medications, or treatment? Not one single item was covered! Nothing.

The other thing that makes my blood boil is most of the facts about my past treatment were incorrect, saying I had had treatments that they had consistently denied, things I never had done. So, whoever reviewed my records did a poor job of keeping the facts straight, holy cow-call me on the phone!!! Is it fair I have no say in this? Other things I do pay for out of my own pocket like chiropractic care, Epsom salts, essential oils. Often I am forced to use my husbands insurance, which I am thankful for. Even my seasoned lawyer couldn’t fight these laws. Every time I open a new letter full of denials I have a flare from the stress it creates.

Another fact that blows my mind is that my insurance carrier is a major, national name brand who talks about how great they treat people. They advertise at the Super Bowl, during all prime time television, and talk about how much they care. It is really sickening, they have their little red and white signs everywhere!!! Lies, it is all lies!!! It would be nice if even a fraction of that money went towards my treatment, instead of big budget advertising!

The fact is the Workers Compensation insurance companies, and the State of California have blood on their hands. I am certain others have given up due to their lack of care, and the struggle of fighting a broken system. So, we treat those that have worked hard the worst, and deny them care leaving them to live in hellish pain! Why bother having insurance if they deny coverage when needed. Where is the justice? Is this fair? I am not giving up without a fight, but this kind of fight only makes my pain worse, and I am tired. I would love to hear others experiences. I can’t sit back quietly anymore, what more can they take from me?

The Mouse that roared,

Jenny Peery

Chicks and Other Signs of Spring!

There is something so marvelous, and hopeful about spring! As I sit here with a box of twenty-one baby chicks, I am reminded that life renews itself, and Winter doesn’t last forever. Like most of my friends in the chronic pain community, I had a tough winter-so I am not really sad to say good-bye to it’s storms, or clouds!

Little did I know when I picked up the chicks from the feed store, how much work they would require. I soon learned, I lost one the second day, and felt devastated. A quick google search told me how to care for the couple of chicks that were starting to give up. As I held their frail little bodies, barely hanging on. I began to do all I could to avoid loosing another chick. This scenario reminded me of two things. What our families do for those of us who can’t always care for ourselves, how they go above and beyond to keep our pain low, and our spirits high. I am very blessed to have a husband, and children that care for me, even on the dark days of winter, they help me hang on. And how at even my worst moments, Christ still cares for me.

As I sat feeding a very weak chick yogurt, while it flung the yogurt everywhere, and pooped on me. I was reminded of how our Heavenly Father cares for those of us who are weak and weary, and doesn’t give up on us, even when we can’t eat solid food. How often we must seem like that baby chick to Him. How painful it must be to Him when he looses a soul, far worse than I felt loosing a chick- I am certain. It is mind blowing to think of how much he loves and cares for us, imagine giving your own child up to be crucified on the cross, a thought that most of us can’t even imagine. Yet, that is what Christ did for his church, He died on a cross.

I love all the pomp and circumstance of Easter! The pretty dresses and hats, the spring flowers, and even marshmellow eggs. They all remind me that winter has passed, and that spring is here!

So tomorrow- Lord willing- as I sit in church Sunday morning and we celebrate that Christ rose from the dead. I am thankful for the lessons a crate full of chicks have taught me, that even at our worst and weakest moments our Christ loves and cares for us, and was willing to die on a cross to forgive us for our sins, and so we should also forgive those who have sinned against us.

Happy Spring! and most of all Happy Easter!

Written by Jenny Peery

Chronic Pain Patients Are Not Criminals

This is my response to the new laws in place concerning opioids.To whomever came up with these laws-why are you punishing chronic pain patients? I would like to see President Obama or the head of the FDA  or DEA spend an hour inside my body, I guarantee you they wouldn’t last an hour!!! I have a condition known as Complex Regional Pain Syndrome, a condition of the nervous systems, causing nerves to fire uncontrollably causing severe pain. CRPS on the McGill pain scale is ranked higher than amputation, higher than childbirth, and higher than most pain caused by cancer. Complex Regional Pain Syndrome is also known as the suicide disease, imagine reading that after just being diagnosed! Four years ago-I was a happy, working Mom. Thanks to chronic tendonitis-and a cortisone shot that damaged a nerve, I now spend most days on my bed or on the couch. On a good day, my pain is about a 5 to 6, a bad day I can reach a 10 plus. Within the first four years of being diagnosed with CRPS at least 60% percent of people will attempt suicide, and that is before these new laws. So not only do I have to deal with loss of income, Workers Compensation-which pays for nothing including standard Meds, Permanent Disability that is known to always deny the first time you submit, but now I have to be treated like a criminal because I am in pain!!! It is also a well known fact that most pain patients are extremely careful with there medications, and only take them when absolutely necessary. Now, on top of all these other stresses I am forced to pee in a cup- every month, find someone to pick up RX copies, and also find someone to drive me to the doctor every month. Not to mention having to pay for the urine test every month on a very limited income. I can’t help but wonder-ARE YOU TRYING TO FORCE CHRONIC PAIN PATIENTS TO KILL THEMSELVES?????? Without medications for pain there will be even higher rates of suicides! Is this so insurance companies don’t have to pay for a lifetime of treatments??? It should also be noted because I hate the fact that I need pain pills, that I am always trying other therapeutic options not covered by insurance, massage therapy, chiropractic care, and essential oils to mention a few. This is where all my extra money goes! Why aren’t we going after the real problems in our country-street drugs like heroine, and meth!! Chronic pain patients are not the ones standing on street corners selling drugs!! Also, we need faster approval through the FDA of other drugs and treatment that are shown to help CRPS like Ketamine for infusion therapy. I am a chronic pain patient, but I am not a criminal!! Thank you for making an already difficult life even harder!!!

The mouse that roars!

Written by Jenny Peery

Finding Simple Joys!

When you live in constant chronic pain it is important to still find things that make you happy, or create joy. I have always believed that it truly is the littlest things in life that create the biggest memories. In my journey as a pain warrior it really felt like the first couple of years were the toughest, then you start to regroup and refocus. Lately, I have been thinking of the tiny things that make me happy. When you aren’t used to living in such a small world, you sometimes forget to find little things that bring you comfort and joy. Take a hard look and find reasons to celebrate!

Here’s my list.

  • God’s word! Especially the book of Job. God allowed Job to suffer not because he was weak, but because he was strong in spirit and faith. This brings me a great deal of comfort, as I read it over and over, I find more reasons to celebrate, instead of feeling sorry for myself.
  • The ability to sometimes attend church. At times it is hard for me to make it, the pews are hard, getting normal clothes on, and fixing my hair is difficult. When I do make it-I am filled with joy, it gives me the ability to still grow, learn, and have contact with others. Most of all to glorify God.
  • My family, my husband and children bring me joy and happiness beyond measure!
  • My extended family, some which I have been able to build better relationships with since I have been ill. My Dad, my Step-Mom, my Mom, my sister, several sister and brother in-laws, my amazing nieces and nephews! I love them all, and all of them create joy in my life.
  • Friends, at times it is hard to meet-up in person, but social media has filled my life with friends-new and old. Friends make you smile, laugh, and sometimes end-up in new adventures. Cultivating friendships is fun and worth it!
  • My pets. They give me companionship, and entertainment. Pets bring smiles to your face even on the toughest days!
  • My favorite television shows. I am a huge Walking Dead fan, lets face it chronic pain stinks, but hey! We are not being chased by zombies-yet! and I can have pudding anytime I want! Thankfully we are not living in an apocalyptic type world!  I also love Downton Abbey-now that’s a hundred and eighty degree flip! But, the drama and the clothing take me away. Also, my other guilty pleasure-Finding Bigfoot-ssshhhhhh! Keep this one a secret because I don’t want others to know I am a closet Squatch fan, it would just be really cool if he turned out to be a undocumented species of Ape in North America.
  • Going to the movies! I love being semi-taken away, or at least somewhat taken away, into another world, or life! Movies can take your mind totally off of pain.
  • My favorite food-I have lots of favorites, but I love Guacamole!!! My daughter now makes the best.
  • My favorite Candy-See’s Scotchmellows! Yummmmmmmmy! Now that is pure delight. Okay, who doesn’t love See’s chocolate?
  • Warm socks-the type not made from manmade materials. I love a good pair of warm, soft socks! My feel are very unhappy at times because I have cold RSD-leaving limbs freezing, it makes you learn to appreciate being warm.
  • Coffee-no need for explanations-I am the Coffee Queen.

Those are just a few of my simple joys, I would love to hear some of yours. The key is to celebrate the small things that create joy. No matter how bad things are, there is always something to celebrate!

Blessings,

Jenny Peery

The Mask

If you are looking for me this week, I have become one with the couch. I haven’t left the house once. My pain seems to be calling all the shots. You see, getting ready to leave the house is starting to feel like putting on a costume, the costume to hide the pain. Two coats of make-up, my mask. The happy face I wear when I leave the house. Normal clothes, I don’t stay in pajamas all day, I usually switch to yoga pants and sweatshirts. When leaving the house, I try to put on normal clothes. I actually take the time to comb and fix my hair. The most painful and draining of all bathing. Lifting my always painful arm above my head to scrub my hair, blow drying (which I seldom attempt) is just too painful, curling, or putting my hair up-exhausting. If I went out in public on a pain filled day, no one would even question or dare to say-But you don’t look sick. Yay, throw a parade. I am a master of disguise, because I am very sick, or I should really say my body is riddled with chronic pain.

There are few things that I am able to do on a high pain day. Remember Freeze Tag? That’s what I try to do on high pain days, with movement comes pain, so I try to stay frozen. In one position, sometimes even breathing hurts. Here’s the problem, my brain still works, kind of. When it isn’t numb with pain pills, which I try to use one at my worst moments, which is lately happening everyday. My brain still wants to be challenged, it needs some social interaction. I watch lots of television. But, that isn’t enough. So it wanders. I try to pray for others I know who are struggling, I check my social media to find out who has needs. To see what is going on in the world. My hands quiver and tremble badly now, I still try to write a few notes to friends or interact on social media. On good days, I  visit with my dogs, I have to be careful because they don’t comprehend how much jumping on me hurts. I try to go out and gather the morning eggs, checking on the chickens, and petting the goats. Just a trip outside will exhaust me.  That’s it for me, then I need to come back in and lay down on the couch. Funny, it’s as if I am doing something laying on the couch, instead of being in bed. But, it makes me feel as if I am participating in life.

Cooking doesn’t happen on high pain days, in fact usually eating doesn’t happen either. When the pain is peaking, I tend to vomit, or feel like vomiting. If I do make food, I wouldn’t really call it cooking, it is more like dumping stuff in a crock pot. I can’t stand for a long time, so actual cooking is next to impossible. My family eats lots of take-out.

This is just a small glimpse into my day, the point I was making is don’t take everyone at face value, what is an easy task for some, is extremely difficult for others. If I don’t look sick, it’s thanks to my mask.