Fibro Warrior Wednesday – Cassie

This week’s Fibro Warrior interview is with Cassie Baxter from College Station, Texas. She was diagnosed with Fibromyalgia in March of 2008, when she was just 25. Keep reading to get to know her better.

What lead up to your diagnosis (symptoms, dr visits, etc)?
I had very few symptoms prior to the diagnosis, at least that’s what I thought at the time. Now that I look back on it, I see that there were symptoms there. I was always the person who would get sick and then would stay sick for weeks longer than I was supposed to. My parents were worried about me after having 2 tough deliveries with my kiddos. My Mom said I looked tired all the time. Dad said I looked weak. My hair was falling out and I weighed just over 100 lbs. on my 5’4″ frame. I was definitely stressed. But who isn’t when they work full time and have two babies at home? Then in February of 2008, I got really sick with flu like symptoms. When I came out of the high fever induced haze, and thought I should be feeling better, but of course I wasn’t, my hubby said I needed to go to the doctor. The doc said my tests results showed that I have Lupus. He referred me to a Rheumatologist. That doctor said I had Fibro. Within only a couple of short weeks after that diagnosis I was nearly incapacitated. I couldn’t get up and down my stairs at home, I couldn’t get dressed or shower without falling apart in pain. It was a horrible existence in the beginning. The doctors now speculate that the two very tough c-section deliveries with the kids could have caused enough trauma to trigger the Fibro.

Were you working at the time?
Yes. I had been the primary provider in our household for some time. I had been working a corporate job and as luck would have it, I had been laid-off just a couple of months before my diagnosis. However, I had immediately started my own company doing the same thing that I did when I worked corporate. So even though I no longer had to answer to a supervisor, I really couldn’t afford to be sick.

What was your family life like?
My husband and I had been married for nearly 4 years prior to my diagnosis. Our kids were 2 and 3 years old. We had just purchased our first house the year before. And we had already made 2 cross-country moves because of my corporate job. We had really gone through a lot in the short time that we had been married. But nothing seemed to have been as surprising or stressful as dealing with this diagnosis.
[Tweet “nothing has been as surprising or stressful as dealing with chronic illness @fibronaturally”]

How did your family initially handle your illness?
My husband was awesome. I’m not sure that I could have asked for a better partner in this. We both had no idea what Fibro was. There was definitely a learning curve to it. But after I lost my ability to walk or get out of bed, he was right there to get me through it. He would carry me to the bathroom, shower me, dress me, carry me down the stairs. He began helping me more and more with running my new business. He weathered all the ups and downs like a Champ! When the doctors put me on over 13 different drugs and 3 different hormones, I turned into a zombie. He would stay up at night and watch over me just to make sure I kept breathing. He was really worried about my well-being. I really cannot say enough about this wonderful man in my life.

The other main supporters in my life have been my Mother-In-Law and my Father. They both live near us. My Mother-In-Law is semi-retired so she has had more time to be around to help with the kids. She also helped me move beyond the traditional medicinal approach to fighting Fibro and introduced me to some holistic and alternative healthcare options such as diet changes, vitamins, supplements, yoga, etc. She has kept up with all the new research out there and has been one of my biggest supporters through it all.

My Father has been a good shoulder to cry on and a wonderful ear to talk to. in 2010, he suggested that I try a new clinic in Dallas (a 3 hr drive) which specialized in Fibro. He was a sweetheart for offering to watch the kids when I went up there with my mother-in-law and he even helped pay for the trips! My Dad has always been the one in my corner who sticks up for me and really cheers me on. I can always count on him to have my best interests at heart. Another positive influence in my life!

I can say that I’m really lucky that all my family members have been so supportive. The ones close by and the ones far away. Not one of them has given me a hard time about the illness or my approach to treating it. I am truly blessed to have such wonderful people in my life that I can call family.
[Tweet “I’ve been really lucky that my family has been so supportive @fibronaturally”]

How has your family/ work situation changed since Fibromyalgia entered your life?
I definitely do not have the must-do-everything mentality that I used to have. I don’t sweat the small stuff anymore. My house is a mess 90% of the time. That would drive me crazy before. Now I don’t really care. My kids have grown up knowing that Mommy can only do so much. And some things Mommy will never do. They’ve accepted that now. Sometimes that’s hard for me because there is so much I still want to do, but I just have to pace myself to get things done or admit to myself that I just can’t do it anymore.

I do still have to work. My husband and I still run the same business. And we have been really successful at it. But with success often comes stress. He and I differ in that department. He stresses when the business slows down a little and I revel in it. I hate the busy times because the stress of managing it all kills me. My symptoms immediately become amplified when stress is involved. But, unfortunately that’s the nature of being a business owner. The trick is finding a way to minimize or alleviate that stress. That’s something I am still working on.
[Tweet “#Fibro has taught me not to sweat the small stuff @fibronaturally”]

What do you feel is the most challenging aspect of Fibro?
I think initially the most challenging part was learning about it, accepting it, and deciding on the path to take in living with it. I was in serious denial in the beginning. My type-A personality wanted to know the quickest way to beat it. In my mind, it was like cancer. How do we beat it? How fast can I get rid of it? It took a few years to realize that I will never “beat it”. It’s not cancer. It’s a life long illness. I had to find my path to living with Fibro. I had to accept that every day I will wake up and battle this illness. Some days I will win, but there may be days when I don’t. And that is okay. Once I finally found my path, everything became clear. It was exponentially easier.

Now I feel like I have grown so much as a person, and also as a Fibro patient. I know my symptoms really well. They rarely ever change. And I also know what triggers them (most of the time). And finally, I have figured out my own little tricks to alleviating those symptoms. But overall, I have just found that my mental and emotional outlook toward Fibro is what is most important. And was once the most challenging. If I remain positive about it, then nothing really seems like a challenge at all anymore. If I let myself feel beat down and lost, then that’s when it all falls apart.
[Tweet “The most challenging aspect of #FIbro was just accepting it @fibronaturally”]

What have you found your triggers to be? And what tricks have you found that alleviate them?
Over the years, I have found that my pain and fatigue symptoms are triggered by stress more than anything else. I know that sounds like a very simple response to a complex question, but it really can be broken down to just stress for me.

I experience a lot of mental stress at work. That stress quickly manifests into physical pain such as the sudden onset of a headache, or an overwhelming feeling of fatigue. So, I remind myself that first I must choose my battles. Some things are just not worth it for me to get frustrated over (its only a job). I try to focus on choosing positive reactions to things that can be potentially frustrating. How can I turn this situation around? How can I make this less stressful? (Note: This doesn’t always work, but I try.)

Another trigger is physical stress. I have found that there are only so many things my body can do now. I know that after about 4 hours of typing at my computer for my job I begin to feel sharp shooting pain in my hands and it continues up my arms, and sometimes my legs start to have painful spasms. I also know that physical stress can be the result of putting too many things on my to-do list in one day. Currently, like many Moms out there, I am juggling my regular work day with after school baseball activities for my son. My son has a baseball practice or game every day of the week. Every. Day. Adding those extra 3 hours a day at the ballpark to my already busy schedule can be that additional stress that does me in. If I choose to clean the kitchen or do laundry after a long work day and 3 hours at the ballpark, then I may end up in too much pain to function the next day. So I must acknowledge and accept that I now have limitations. And my life requires balance. As a result, I need to listen to my body more. When I’m doing more physical things like working in my yard, grocery shopping, or playing with the kids, I am always conscientious of my body’s reaction to that type of physical stress. Are my legs starting to get wobbly? If so, then its time for me to throw in the towel. I’m done. I need to stop right then.

I also have learned to say “No”. My daily planner can only take so many appointments. I cannot do it all. It will only stress me out and increase my pain level. I am not afraid to say “No”. And in correlation with that idea, I am also very vocal with my family about my needs and limitations. I am not afraid to say to my hubby, “Ok. This is totally throwing off my Chi!” This of course makes my kids laugh at me. But, seriously. I need balance and I am vocal about when my life is not in balance. The idea is to bring that awareness to those around me so we can work on it together. And finally, I take a daily dose of an all natural anti-inflammatory called Curamin (which is essentially Turmeric) in preparation for a long day. I found that if I keep up with taking my vitamins in the morning, and especially remember to take that anti-inflammatory supplement, then I’m helping my body to fight off those aches, pains and fatigue later in the day.
[Tweet “#Fibro has taught me that it’s important to learn to say no. @fibronaturally”]
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have Lupus. I haven’t had a flare for a couple of months now. It tends to take a back seat to the Fibro. But when I do have a flare, it’s usually swollen and painful joints, rashes on my face, my hair falls out and my nails become brittle. Occasionally I have intense kidney pain, too. But, thankfully it doesn’t happen all that often and I don’t feel the need to take medication for it at this point.

Prior to being diagnosed with Fibro, I learned that I had ADD. And I also learned while in college that I am Hypoglycemic. Both of which don’t seem to have much to do with Fibro. But, now I have found that my ADD meds really help get me out of the Fibro Fog. So that’s a bonus! I usually only take my ADD meds when I have lots of work going on and really need to focus. In my job, mistakes cannot be made. So, Fibro Fog isn’t really an option for me. Thankfully the ADD med is one of two prescription drugs I have and I only use it as needed.

Learning that I am Hypoglycemic really forced me to make better decisions about my diet and routine. I used to go all day without eating and then feel horrible by 5pm. I could never seem to figure out why I felt dizzy and light-headed. Now, I know why that is. I really make an effort to take all my other conditions into consideration throughout the day.

What (if anything) have you found/ done that has improved your symptoms?
Now that I no longer depend on numerous prescription drugs for relief (I only have 2 Rx drugs now that I take as needed), I have really taken a multi-faceted approach to fighting Fibro.

First, I started out by changing my diet. I went from eating whatever I wanted to actually making good decisions about my food intake. I became a vegetarian. I read the books “Forks Over Knives” and “The China Study” by T. Colin Campbell, M.D. I started asking vegetarians and vegans that I know about their choices in food and how it had impacted their lives. I thought I may try this diet for a while and see what happens. It couldn’t hurt, right? I had just weaned myself off all 13 drugs and 3 hormones. So I was feeling pretty miserable. But within about 3-5 days of being a vegetarian I was immediately starting to feel better. I had more energy, I was sleeping better. I think my body had begun to detox and was finally getting the nutrients that it needed.

Second, I began taking A LOT of vitamins and supplements. The doctors at the Fibro clinic in Dallas had loaded me up on all the vitamins and minerals I was deficient in. I think I took more vitamins/supplements in a day than I ever did with the Rx drugs! But, it seemed to make a difference. In no time, I was able to be a lot more active than I had been during the previous 2 years.

Third, I slept a lot. I slept as much as I could. And I really didn’t get mad at myself if I slept more than I thought I should. I was learning to listen to my body. If it was tired, then I wasn’t going to keep pushing it. But, on the flip side, I didn’t let myself get too lazy either.

I got moving again. I am not an exerciser. You will never see me at a Mud Run, or doing CrossFit. But I will stretch my muscles daily. I used to make my daily exercise a walk to the mailbox and back. Anything, no matter how small, is better than nothing at all.

I completely overhauled my personal hygiene/cosmetics supplies. I found that if I give my body only the stuff it needs to become stronger and healthier, then I am helping it to fight the Fibro symptoms and removing anything which could hurt my body further. So, I stopped using anything with potential toxins in it. So, all my body products (shampoo, soaps, face wash, toothpaste, etc.) are pthalate free, paraben free, free of petroleum products, dyes, sulfates, etc.

And Finally, I gave myself a break. Mentally. I stopped judging myself. I stopped beating myself up for not being the person that I used to be. Honestly, now I barely remember the person I was before. This is who I am now. I am that person who has a life long illness but is not letting it take over. I am not letting it win. I may not be perfect, but I am okay with that now. My husband reminds me that not everyone is strong enough to wake up every day knowing that they will not only be fighting a horrible illness, but they also will work all day, and raise two small kids…and do it with a smile. I feel good now knowing that I CAN do this. And if I can, I know other people can, too.
[Tweet “Stop beating yourself up for not being the person that you used to be. via @fibronaturally”]

How open are you with friends & family about your illness & symptoms?
It’s not a topic of conversation that comes up often. Most people around me know that I have Fibro, but don’t really see the symptoms. I’m really good at hiding them most of the time. Or, if I don’t feel I can hide them then I just don’t hang out with anyone. I don’t really like being around people when my symptoms are obvious. I would rather just stay home. So when I do see my family and friends, I don’t look sick and they rarely think to ask about it.

I have had some teasing about being a vegetarian by a couple of family members. Once, one distant family member that I rarely see was rather rude about it. But, I just let that stuff roll off me. The ones who act that way usually haven’t done any research on dietary changes for illnesses, so what they say I can’t take too seriously. And I did have a friend’s husband once make fun of my Fibro, as if I was making it up or something. That was hurtful, but I again chose to just let it go. I cannot afford to let those types of people get me down. It won’t help me and isn’t worth my energy. I choose to instead focus my energy on those people who are positive influences in my life and forgive those who are not.

Do you blog about your illness? If so, what inspired you to do so?
I started blogging about Fibro because I wanted to reach out to others with Fibro. I had been surfing the web and found that there were so many Fibro folks out there who were suffering and the more time I spent reading these stories and talking to folks on forums and social media the more I felt I could reach out through a blog. I think that now that I have found my path for dealing with this illness, and I have made my peace with it, I am in a place where I can reach out to others and make those connections and hopefully help make a difference for someone else.

What is the best advice you’ve received regarding Fibromyalgia?
I think the best advice to give anyone battling a chronic illness is to keep their head up. Stay Strong. Be gentle and forgiving to yourself. Once I understood that my mental and emotional health were just as important as my physical health, I became more mindful of the way I treated myself. I had to change my outlook from anger and depression to one of gratitude and peace. I started to applaud myself for accomplishing even the smallest of tasks. I reminded myself that I am strong. I can do this. It made all the difference in the world.
[Tweet “Be gentle and forgiving of yourself. via @Fibronaturally”]

What was the worst advice that you followed?
My second visit to a Rheumatologist in San Antonio, Texas ended with the doctor telling me that any attempt to see the specialists for Fibro in Dallas was folly. I had been doing my research since he had diagnosed me just a few weeks prior and had seen promising stories of wellness from this particular clinic in Dallas (the Fibromyalgia and Fatigue Center). He said that he could not approve of those “quacks” and it would be a waste of my time and money. I followed his advice and didn’t go to the Dallas clinic for the next 2 years. I am glad I finally did go. If I hadn’t, I don’t think I would still be alive today. I’m pretty sure that I would have died from a Rx drug overdose by now if I had stuck with that doctor. The good people at the Fibro clinic in Dallas helped me get off the Rx drugs and find a balanced and healthy way to fight Fibro.

What is your favorite way to cope with your life as a Spoonie?
Laughter and lots of soaking in Epsom Salt baths! I find that being distracted with a good book, TV show or movie really helps me forget about my pains. Laughing a lot keeps my spirits up. I’m so glad I have my kids to make me laugh!

What is one thing you’ve learned about yourself since your diagnosis?
I’ve learned that I am much stronger than I thought. If someone had told me 10 years ago that I would spend the rest of my life in pain from the crown of my head to the tips of my toes, I would have said “No way. I could never live like that.” And here I am. I am living with it. I haven’t given up. I’ve stayed strong for my family. For my kids. Who knew that I could be this strong? I certainly didn’t. But I am so glad that I am. Maybe that will give others hope to stay strong, too.

Now that you’ve read her story, check out Cassie’s blog, Fight Fibro Naturally. You should also follow her on Facebook and Twitter.