Fibro Warrior – Angie Williams

This week we are getting to know Angie Williams from Castle Rock, CO. I met Angie through Facebook and she agreed to share her story.

Tell us a little about yourself:
I am married to an amazing man-Dean. He is my biggest supporter and the love of my life! I have an incredible daughter (29) an awesome son (28) and his wife, a beautiful step-daughter (26), and her 2 month old son (my first grandchild!!), and a remarkable daughter (13)! I have two cats, Patches and Abby, and one dog, Kody. Patches is 20+years old and I watched her being born – she is a great support to me. Abbey is a sweet tabby. Kody is Dean’s faithful friend. We used to have five chickens but recently got rid of them. I have worked in the finance department of the municipal government where I live for 10 years. Although there are days when I don’t think I can even go to work, I do truly love my job and if anything it gives me a distraction from my pain.

If I live in fear of what tomorrow will bring, then I am not living. #spoonielife Share on X
When were you diagnosed? How old were you at the time?
I was diagnosed about 8 months ago. I am 54 years old. After years of trying to figure out what was wrong with me to no avail, reading everything I could about Fibromyalgia, my husband and I decided I should try going to a rheumatologist and see if this might lead to an answer. I was administered the standard trigger point test, and of the 18 trigger points they test to determine if you have Fibromyalgia – I tested positive on all 18! Unfortunately I felt I knew more about Fibromyalgia than the rheumatologist did and so again I was left hanging…

What lead up to your diagnosis?
After years of continual, relentless, constant pain; no sleep; unclear thinking; lack of energy-total exhaustion; trying everything offered to help and feeling like nobody believed me and being treated like a drug addict, I was to the point of giving up. My husband would not let me though, so he researched and then researched some more and kept finding things to try – he wouldn’t give up on me. We also decided to have me go to a rheumatologist. Even though a lot of the things my husband was having me try were helping quite a bit -things were still consistently getting worse and life was getting pretty hard for me still. We hadn’t quite discovered the exact science that would work for me.

I had cervical fusion about 10 years ago. Then I had fusion at L5/S1 about 5 years ago. I’d had extreme neck and back pain for a long time. Even after the surgeries the pain just never went away. I went from being a normal, healthy working woman/mother to a woman constantly in pain. I had new pain in my neck and continued having pain and numbness down my left leg and into my foot. I tried every drug imaginable to help, injections too. I have had 2 nerve ablations in my neck and still no relief. I was given so many different medications – none really helped and some had extremely scary side effects. I didn’t want to be on all these medications that most often made me feel even worse!

Things continued deteriorating-the pain was relentless, I was lucky if I got 2 hour of sleep at night, no energy, brain fog was setting in, I never felt rested. I didn’t want to do anything. I had to work, so I would crawl out of bed each day in so much pain and feeling like I was 100 years old, go to work and then would come home, eat dinner and go to bed. I was miserable.

What was your life like at the time?
I was shutting off from my husband, from my family, and from life. My youngest daughter was missing a mom – I was always in too much pain or too tired to interact with her and it killed me!

I am the worker in our family and my husband, who is retired, is the stay at home dad taking care of our daughter, the home, etc. and me. So I had to go to work.

I would wake up feeling like I was 100 years old: achy, stiff, headache, unclear thinking, exhausted! – I was lucky if I had gotten 2 hours of sleep! I would go to work each day, I could not let my family down any more than I already was! I would come home, eat dinner and go to bed. I had no life and it was killing the people I love as they watched me be completely miserable day after day. I was put on Lyrica (which did help a bit, but put 20+ pounds on me in a matter of weeks!), I was also given a nasty muscle relaxer, and pain pills. Nothing was lasting and I still was not sleeping. My pain continued.

How did your family initially handle your illness?
Again, I am so fortunate in that my husband does everything he can to help me. Without him, I don’t think I could have continued. My oldest children are out of the home, so they did not see my day-to-day struggles-I’m not sure they really understand the whole thing of Fibromyalgia and how deeply it was affecting me – I tried to put on a good face. My youngest daughter was very gracious and not demanding of me. She knew I just needed to rest and didn’t expect a lot from me – but this just killed me because I wanted to spend as much time with her as I could and be there for her! It is hard for other people to understand what you go through, especially when the illness itself is hard to understand. How do I explain things to them, when I don’t even understand myself. But my husband has always supported me through anything I have gone through – he is my biggest fan. He never gives up on me and for that I am very lucky.

What do you feel is the most challenging aspect of Fibro?
Right now I think the most challenging thing for me is the fear – the fear that I don’t know what tomorrow brings. The fear that the bottom might fall out and I will be miserable again and lose all that I have gained lately. I still have pain, but due to the regime I am on now, I am in a better place with my pain levels, with sleeping, and a lot of the other symptoms are not rearing their ugly heads right now. Because of all of this I am better able to handle the pain. It is hard to accept that I will have pain the rest of my life, it is hard to wonder if tomorrow I will wake up and be completely miserable. It is hard to not know what area on my body will be in the next flare, or if what I do today will affect how I feel tomorrow. But if I live in fear then I am not living. If I live with hope, then I can make a difference to myself and to others.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have low adrenal function,  low thyroid,  gluten intolerance and also, having just gone through menopause, my estrogen and progesterone were basically non-existent. Dr. Murphree believes I probably have “Failed Back Syndrome” and might have pain in my back and neck the rest of my life, but hopefully we can control it to a minimum. I also have Glaucoma which affects my eyes. When I was at my worst, the blurry vision was intense, but that too has subsided for now. I do know that each day seems to bring on a different area of pain, or sensitivity and I never know to what extent or how long it will affect me.

What (if anything) have you found/ done that has improved your symptoms?
Everything my husband has be doing for me has been a huge help. My husband has always been my herbal doctor and throughout our years together I have been his guinea pig in trying different things to help me. He did his research and got me on different supplements that are crucial to those with Fibro. and his biggest achievement was getting me on something to help me sleep. He had me on most of the supplements that Dr. Murphree now has me on  – so he was right on in finding the best things to work for me. He found edible medical marijuana for me to take at night for sleep (I am fortunate to live in Colorado where this is legal).

I am always one to do my research too and began reading about my Fibromyalgia. I came across a chiropractor in Alabama – Dr. Murphree. He has been studying Fibromyalgia for about 20 years and seemed to have a protocol that went along with my line of thinking- natural supplements, healthy eating, healing the broken, identifying the inflammatory foods I was eating and getting me to sleep. Impressively, my husband had me on almost all of the supplements Dr. Murphree has recommended. I read his book, continued taking supplements, did all the tests he required from me and I have been working with him for about 2 months now. He identified me as being gluten intolerant, I hardly had any function in my adrenal gland and my thyroid was low as well-not to mention the amount of inflammation in my body! My life has dramatically changed in these few short months! Dr. Murphree has me on a six month plan and I am so excited to see what happens next.

I am now taking supplements to help heal the adrenal and thyroid glands and in the two and a half short months I have been taking these I am starting to feel better – imagine 6 months down the road! I have stopped eating gluten and feel so much better – I would never have imagined the difference it would make. I have been on an anti-inflammatory diet eating vegetables, some fruit and some protein and eliminating ALL SUGAR!! This too has helped tremendously (not to mention I have lost quite a bit of weight). Sugar was my best friend. I have had to grieve this loss of sugar that I was obsessed with and used emotionally to help me feel better when I was hurting (ha ha).

I am getting ready to get off of the Lyrica – but that will have to be done extremely slow. The side effects of going off this too fast are pretty scary! I have continued to walk about 2 miles at least 4-5 days a week. Even when I don’t feel like it, I walk and it really does help-both physically and emotionally. When I am in too much pain I may not walk as far, but I try to get out and walk some.

How open are you with friends & family about your illness & symptoms?
I think I have tried to be up front with them and let them know what I have and how it might affect me. I think communication helps me to deal with it and it also helps them to deal with me. The more they know about it, the less afraid they are and the better they understand if I say “No” to doing something. I am finding that the more I accept this illness, the better I am at taking care of myself, pacing myself, and saying no when I have to.

Do you blog about your illness? If so, what inspired you to do so?
I have always been interested in writing and have done some journaling throughout my life. Only recently have I started to come to better terms with all of this and felt the desire to share what I have gone through and what I continue going through each day, -so I have some ideas in the works to blog. I am finding that blogs offer a release in that I can share with others and listen to their stories etc. I learn new things and also that I am not alone. When I see blogs like Counting Spoons it inspires and motivates me to want to share my story, my courage, my strength with others -who knows maybe I will be able to start a blog about my journey. If I can give hope to just one person then that will be fulfilling.

What is the best advice you’ve received about Fibromyalgia?
I think I have a couple:

• Listen to your body.
• Pace yourself – don’t overdo it.
• Don’t give up!
• Keep searching until you find what works

What was the worst advice that you followed?
Getting on all the drugs that doctors wanted me to try. Having the surgeries that probably didn’t need to be done. Don’t get me wrong, I think that there comes a time when we do have to take medications – I do myself, but I think doctors tend to over-medicate us and then act like we are drug addicts!! I think they do surgeries when they haven’t tried everything there is and I have suffered greatly from this.

Doctors over-medicate then act like we are drug addicts! Something's not right! Share on X

What is your favorite way to cope with your life as a spoonie?
Every day I am learning new ways to cope. I love to walk – I walk several days a week – even when I don’t feel like walking I walk. I am thankful I still can walk. It frees my mind and after 2 back surgeries it really does make my back feel better sometimes. There may come a day when I am unable to walk, so I walk while I still can and I walk for those who cannot.

I have also been creating here lately. This is my biggest stress coping mechanism. I have always loved to craft, but lately it has been with a vengeance! I have been feeling compelled to create and have been having so much fun doing it. I have some ideas in the works and am looking forward to bringing them to fruition as well.

My husband is again such a wonderful guy. He makes me laugh – everyday. He makes it his job to, not only take great care of me, but he makes sure I laugh as well. I am so lucky to have him in my world!

What is it that inspires you to keep going, despite your illness?
I have some pretty special people in my world. My husband for starters. And then there is my children – I want to be in their world as long as possible. Watching how their lives grow and the world they create is a gift that I want to be a part of for as long as I can. My youngest is 13 and she still needs a mom – there are lots of times I miss out on things or am in too much pain to do much, but I want to be there for her as much as I can. I am not a quitter – I want to live. I want to be in control of my illness not have it control me.

What is one thing you’ve learned about yourself since your diagnosis?
That I am stronger than I thought. That I have the power to control my illness – even in my darkest moments. I can choose to live with a chronic illness, or I can just choose life. I am in control. I know that I am misunderstood by lots of people, but I know the pain I go through and I don’t have to prove to them it is real anymore – I instead focus on taking care of me. I have also found out I have a lot of people who really love me and that touches the depths of my heart. I am also learning how to take care of me – I have spent my whole life taking care of others, and if I don’t take care of me first, I will have absolutely nothing to give anybody else. I am learning patience – with myself and when others don’t understand. I am figuring out what matters most in life and that is a lesson we all need to work at.

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?

• Having a chronic illness should not define who you are. Having a chronic illness should not control your life.
• Keep searching until you find answers or something that works. If that stops working, then search again. Listen to what others are doing – what works for them might work for you.
• Be willing. Be willing to try new things, be willing to make different choices, be willing to listen, be willing to make changes and be willing to be strong.
• Believe. Believe in yourself. Believe that there is hope. Believe that you are stronger than you think.
• Reach out. Investigate everything you can on what you have. Check out websites like this. Join blogs. Share your thoughts and share your journey too.
• You are not alone. There are so many of us that struggle each and every day so you are never alone.

Is there anything else you’d like the readers to know?
Don’t give up! Your attitude and your will are what will get you through things. You are not alone. There are people out there going through what you are, websites, blogs, social media, etc. Go to these, inform yourself – knowledge is power. I know that things may seem bad and they are, I know it feels like you have been robbed of a normal life and you have, but don’t give up! You are stronger than you know. You have the power to take control of your illness and not let it control you. Life is short, so try not to dwell on the negative things. Treasure the good, the small things, the many blessing that you do have. If one thing does not work, try something else. You have to fight – you have to be a warrior-you have to want to overcome! Don’t give up!

Please list any contact info you’d like to include (blog, twitter, email, FB, etc):

You can find Angie on Facebook  at Angela Yocum Williams,  or you can email her at ang.ahlene@gmail.com. She would love to hear from you so don’t hesitate to contact her.

Did you enjoy this interview? Would you like to share your own Fibro Warrior story? If so, please contact me for more info.