As you may recall, I took a break from blogging because I was blogging for the Arthritis Foundation Indianapolis chapter as a representative for the Indianapolis Arthritis Walk. I am truly dedicated to the event and the cause–and now chair of the event.
A Lot of Trials and Errors…Is GF/DF the Answer? July 25, 2011
Fibro Girl Kate Gets Engaged! What is it like to commit to a life with someone with fibro? April 25, 2011
I know, I know…it’s been months since I’ve been here. I’ve been busy working with the Arthritis Foundation.
Today, AF published a post that is an interview with my delightful fiance, Brian. You can read it here: http://afindiana.blogspot.com/2011/04/my-loved-one-has-arthritis.html.
However, I had to trim it down a little bit for the post. Since I get to do what I want on this site, I’m posting the entire ‘interview’ so you can see the more personal comments made. Happy Reading! Kate
Do you remember on our first date when I told you I had fibromyalgia? What did you think when I told you? What expectations/thoughts did you have as a result of that in our early dating time?
I remember the night clearly and remember the exact moment. We were just past the NCAA Hall of Champions on one of the bridges over the Downtown Canal. We were still on our way out and you brought up the subject that you had fibro. I recall asking a lot of questions. At the time I had heard of fibromyalgia, but did not know the specifics of the condition so I just started asking questions and listened a lot.
It was evident to me that you had the condition under control and you were very proactive in not letting it control your life. The fact that you had volunteered for several fibro studies told me that you were interested in not letting your condition define you. If anything it showed me that your ambition matched my own and you were going to live and enjoy your life regardless of fibro.
Now, was I scared a little? Of course, and I think I even brought that up to you that night. But it occurred to me that if I was scared about it, then how must you feel in broaching the subject on a first date?
We both talked about what we wanted out of life and where we were going in the future. Surprise, surprise… we wanted a lot of the same things. My only expectation was that I wanted you to be honest with me about fibro and you totally were from the beginning.
Now that we are planning the rest of our lives together, and I’ve been diagnosed with two more arthritic conditions, what do you worry about?
Honestly, now that I’ve been with you for nearly a year I have much less worry. We’ve had some great conversations and it’s my belief that your dogged determination will win out over any diagnosed condition. To put it in straight talk, I’ve envisioned you saying, “Arthritis and fibro be damned, I’ve got stuff to do. So give me another option, Doctor, or I’ll find one myself.” It’s that determined attitude that keeps any past worries I ever had at bay.
Not to say that you won’t want or need to hold my hand for support now and again, but I feel like we draw strength from each other and will ultimately find a way to do everything we want to do in life including having a family, finishing school, traveling, and whatever else suits our fancy.
Let’s talk about the practical side of chronic conditions. Can you describe for the readers, from your perspective, the ways that you see me taking care of myself and the things you do to help me?
Sure! I see you taking a lot of different approaches to the various conditions you deal with daily. Obviously, there are medications, but you know the medications forwards and backwards enough to be able to discuss with your doctor about dosage and how different doses may help in the event of a flare-up. You trust your doctors, but don’t rely on them to be the only authority in the room. In this way, and your doctors know this, you challenge them to know more because they know you’re going to ask the question and may already have the answer. And you’re not afraid to fire them if they give up. On my side I have a list of your meds just in case. I’m no expert, but I have the information should I need it!
I also see you making an effort to stay active with regular walks as well as getting a yoga session as often as your schedule allows. You are also willing to try new things like the TENS Unit, massage, physical therapy, or the new pain patches.
You have the same mentality when it comes to your diet. You eat good food. Not to say that you don’t indulge, but more often than not you make choices that will benefit your conditions and then find a way to make them darn tasty! I’m also open to trying new foods and recipes, so we can be healthy together.
Finally, you get the rest that your body needs to do what you need to do. Again, not to say you sacrifice or are always in bed by 9 pm, but you know what it takes and endeavor to give your body what it needs.
I see that you are preparing yourself to have so many options that something is going to work or a combination of things are going to work when things flare-up.
On my side of things, I support you as much as I can and don’t become a barrier myself. If you need extra sleep, then I keep quiet so you can rest. If you need an easy weekend, then I don’t complain that I wanted to go out. There will be plenty of weekends to go out in the future!
I also help out on the exercise component by going on walks and helping us stay active. Since I am a long distance runner, I can at least begin to understand the muscular pain and tightness that comes with fibromyalgia. We have a roller that we both use on sore muscles and we even relax and let the other person “roll” the other’s leg muscles. I really enjoy these sessions because we get to chat for a good hour without interruption…except when one of our pets wants attention and will not be ignored! How many couples just sit next to each other and talk for an hour plus straight without any TV, Computer, Blackberry, iPhone, iPod, Facebook, Twitter or Xbox?
The most important thing as a partner/spouse/significant other is to try and understand what your loved one is going thru every minute of every day and not be a barrier to them yourself.
Your last sentence really stood out to me. You really have been amazingly supportive. What other words of advice do you have for people who have a significant other who is surviving arthritic conditions?
Besides not being a barrier or burden to the person who has arthritis…I know I said that already, but I thought it was worth saying again. My advice is, “Read up!” or “Get knowledgable!” Go online, talk to YOUR doctor, find some information and be informed. The arthritis we are talking about is NOT the same that Grandpa had at the age of 80. This is NOT just “the aches and pains of getting older.” It’s a chronic medical condition.
However, while you’re getting informed about this chronic condition DO NOT become the “know it all,” trying to tell your loved one the best way to treat their arthritis. This isn’t the time to “tell the doctor how it is” because you read a couple articles online…or 10 articles online for that matter.
The information you find is so you can be prepared for what comes next, and be understanding of what your loved one is going through. As a guy, we sometimes want to try and fix the problem instead of just being there for support. This isn’t the time. Go fix a lamp instead and take out the garbage while you’re at it. Just be informed about arthritis so you know what’s going on and can be supportive.
Ha! I know you meant to be funny, but I can’t tell you how much I appreciate that you take out the trash! Let’s chat about the Arthritis Foundation for a minute. We’ve attended Bone Bash. You volunteered with me at Jingle Bell Run (and ran it!), and now you’re working with me for the Arthritis Walk in June. Why do you think it’s important for families to attend these events?
From a personal perspective, it’s important because I’m not the only person on this planet and I could be diagnosed with arthritis tomorrow. I’d hate to decide that something was important AFTER I needed help for my own cause. In three words, “pay it forward.”
On another note, it’s events like Bone Bash, The Arthritis Walk, and the Jingle Bell Run that raise money for arthritis research. Because of that research, aspirin is no longer the primary treatment for arthritis. If we can raise a little money and be able to manage arthritis, I say we raise a little more and see if we can make arthritis even less than a minor inconvenience.
Finally, you’re my family. If this is important to you, then my place is beside you or where ever you need me to be, whether it’s running a 5K, dressing up in a Bone Bash costume, handing out fliers or tweeting to my friends. I’m there for you because that’s what family members do for each other. You’d do the same for me. (Insert Friends theme song here.)
I’m pretty certain I’m the luckiest girl in the world to have you by my side. Any other comments or thoughts for our readers?
Only one more thing to add. On the worst day when your loved one who has arthritis is their most irritable, you’ve lost all patience and you want to hang it all just remember that you don’t have arthritis for the rest of your life. And if you do have arthritis as well then thank your lucky stars that you have someone who understands what you’re going through every minute of every day.
Priorities and Life with Fibro February 16, 2011
I know it seems like it’s been a million years since my last blog post. Life has been tremendously good: a wonderful holiday season, a great vacation, a fantastic relationship, new teaching opportunities, continuing on my PhD, great new projects at work, and lots of good times just enjoying life. I’ve had a few health stumbles…more work on the bursitis in my hips, some sort of new issue with IBS, and new stomach upset, but things are improving.
As you know, when you have fibro, your energy is very precious. There’s never enough to go around. Every week, I see posting to my blog on my to-do list, but it keeps getting shoved back for something else. Every week I feel a little guilty when this happens, especially since I think about things to share with you every day.
If you’ve been keeping up with my blog, you know that I volunteer for the Indiana chapter of the Arthritis Foundation. I’ve been involved with three local events: Arthritis Walk, Jingle Bell Run, and Bone Bash. It’s very important to me to give to my community, especially to others like me that may be suffering. And, who doesn’t want a cure for all of our conditions? I made the difficult decision to focus only on the Arthritis Walk. I am the event vice chair and will be the chair next year. I’m dedicating much of my extra time to this and feel very passionate about it.
One of our goals is to create a great new blog to keep the community engaged. I’m thrilled to do it, but as you can imagine, that means less time for this blog. So, I’m going to continue my hiatus for awhile to focus on the new blog. I’m not sure when I’ll be back to this one, but it will happen eventually. I hope you’ll follow us at http://afindiana.blogspot.com/2011/02/welcome-to-afindiana-blog.html. I may try to cross post some things since I know many of my readers are out of state. If that’s you, I highly encourage you to get involved with your local chapter.
All of you are in my thoughts!
Fibro and Financial Health…Can You Have Both? December 14, 2010
Last night, I had what my co-worker calls a ‘true Kate moment,’ meaning a situation somehow onlyI can find myself in. A few months ago, my ever-so-helpful brother in law noticed my radiator had a crack in it while he was doing some other work on my car. I’ve known for some time now that I needed to find $200 to fix it, but it just hasn’t happened yet.
Now that it’s cold in Indiana, my car constantly steams from under the hood and I can’t get to work without having to stop and let it cool down, nor can I run the heat. After sitting for two hours in my steaming crap car in the cold because of an accident, I finally got home, hurting and stiff. The garage door wouldn’t open because of the snow packed in. I kicked it with my numb feet until it finally let loose. I jumped out of the car to take a look at the steam and somehow hit the lock button. I realized it instantly. My car was locked, running, with my keys and purse inside.
To save money, I cancelled my landline years ago. Fortunately, my social networking obsessed Honey is usually fairly easy to reach via Facebook. I attempted to chat with him and my sister with my stiff fingers. I needed a locksmith asap. Of course, I use a work back up laptop because I don’t have the money to buy a nice computer. In the process of attempting to chat, I had to reboot twice. It’s a back up for a reason.
Three hours, $100, and a very odd meeting that involved a lot of screaming in Russian later, my car was turned off, cell phone back in hand, and purse in the house. The whole thing made me cry. Here I am, 33 years old, working two successful and professional jobs, not living extravegantly, driving a crappy car, and $100 just completely broke my budget for the rest of the month. I had a complete melt down.
Why am I living on the brink of financial disaster? Because even though I have great health insurance with low monthly payments and a pre-tax medical savings account, I’ve spent almost $5,000 out of pocket this year trying to keep myself healthy and well. That’s about $416 a month. That’s a car payment plus some. I know I’m lucky, so many people with chronic conditions have it much worse than I do.
I’ve been doing so much work on the physical, emotional, and spiritual sides of fibro and arthritis. But you know what we really need to add to the tripod of well-living? Finances. I knew how much I was spending, but it was put into perspective last night. I often joke to my dog and cat (I swear they can understand me) and say, “You are the reason we can’t have nice things!” It’s not them, it’s fibro.
I don’t want to get into politics of the health reform debate and what insurance should and shouldn’t cover…that’s not why I’m writing this blog today. I’m writing because we need be aware of how the financial sacrifice effects our physical, emotional, and spiritual sides. I was so tense last night as I debated if I should or should not spend the money on a supplement that I think is really helping me but is a little expensive. I felt doubly punished by the universe. My pain was through the roof the more emotional I got.
I wish I had a pot of money to give everyone dealing with chronic pain so they didn’t have to cope with this on top of everything else. But I don’t. And we all wonder if it’s ever going to get easier to pay for the things we need. My doctor’s answer is probably not. It feels more than bleak.
But, you know what I’m going to tell my brother in law when he asks why it took me so long to finally fix the radiator? I picked me over my car. I picked being able to live and experience life. I picked loving myself enough to take care of my needs so that I was whole before taking care of my car, my pets, and my friends and family. I picked having faith that eventually, my needs would be taken care of, even if it wasn’t on my car’s timeline.
It still sucks that I can’t have a shiny new car that doesn’t look like it’s on fire or nicer clothes or the funds to by my family the gifts I really want to buy them. But, health is more important. I’ll get my car fixed, I’ll continue shopping at Marshall’s instead of Ann Taylor, and I’ll bake up some goodies to supplement the okay gifts I’ve purchased. I’ll rest with these decisions knowing I finally made the priority me.
Updates: Jingle Bell Run Indianapolis
This past weekend was the Indy Jingle Bell Run. I was the volunteer coordinator for the event and the Honey volunteered with me and ran. It’s always such a fun event…and very festive! It was heart warming to see all of the support for those with arthritis and related conditions.
Connecting Spirit and Fibro December 8, 2010
As part of the Natural Fibromyalgia Relief project, I have been given the gift of working with one of Lotus Life Solutions’ therapists, Marilyn Shaw. I’ve been blogging about my experiences with the company and their philosophy of working with the physical, emotional, and spiritual components of fibro treatment. Dr. Mayfield was kind enough to let me select a therapist for some complimentary sessions. I’m so happy I connected with Marilyn. She was a treat to work with–so kind, helpful, and open to discussing anything! I could write a book on all of the things I learned from her, but today, I want to focus on one specific lesson I learned.
I chose Marilyn because she specializes in spirituality. I admit, this isn’t a place I’ve done a lot of work when it comes to fibro. I’d consider myself ‘spritual, but not religious’, declaring myself a Methodist, though I tend to relate more to Buddist and Hindu teachings. I use yoga as a spiritual practice as well as physical, but I’ve not done a very good job of keeping up with that aspect of it. This seemed like a great opportunity to refocus some thinking and actions. Throughout our three sessions, we discussed a lot of personal issues and struggles I deal with regularly: grief from the miscarriages, anxiety about the future, healing early life experiences, the constant coping with chronic illness, and learning to trust myself and others.
Marilyn, a fibromite herself, showed me how closely related fibro is to the emotional and spiritual pieces of my life. She was able to connect a few childhood experiences with the start of fibro and how the trend continued throughout my life. Besides one or two specific instances, I never stopped to think how my emotional journey has impacted my body. I knew that connection existed, but taking the time to put the timelines together was eye opening.
We discussed coping with fibro pain through breath (or life force) and using it as a call to evaluate what’s happening in my life, scanning for issues, stresses, emotions, axieties, and areas of distrust. I think we have a tendency to disconnect from fibro. When something starts to hurt or we start in on a flare up, we immediately reach for whatever tool we have to solve the pain–medications, bed rest, heat, etc. We want to solve the pain and move on with our lives. We get frustrated that fibro is stopping us from doing something that we wanted or needed to do.
While we need to take care of our physical needs, I appreciate that this could be the signal that it’s time to scan the other parts of our lives. If we connect our whole selves with the signals fibro is sending us, we have an opportunity to live our entire lives better. As Marilyn stated, this can bring up a lot of ‘poo poo’ that we would rather forget. Sure, I’d rather forget a lot of bad experiences. But if I do, I’m not learning, I’m not growing, and I’m not using the gifts that I have been given (even if I didn’t want them at the time!) because of these experiences. We need to appreciate our life journeys, the good and the bad.
I am no longer looking at pain as just pain. The pain is there for a reason: it’s your body and soul announcing that it’s time for you to pay attention to you. In a way, we’re lucky to recieve this signal so obviously. How many people go throughout their lives living on the surface level because they don’t get the reminders to dig a little deeper, find more meaning, and appreciate all life’s gifts?
My new strategy is when I start to reach for the Tylenol is to also reach for my journal. Sure, I’m going to have some ‘poo poo’ to sort through, things will come up that I don’t really want to take the time to deal with, and sometimes pain will be there just because I have a chronic condition. But, by taking a few minutes to answer this signal, I am taking the time to nourish my body AND spirit.
I’ll be incorporating more of what I learned in future blog posts. To be honest, our sessions brought so much to the forefront of my mind, I’m still thinking, figuring out how to apply this new information, and allowing myself some time for everything to sink in. Emotional and spiritual work is hard work! I’m actually being patient enough with myself to work through some things because I know how valuable this is to living a full and meaningful life.
In other news:
My poll on cold-care: The responses are all over the board! If you want to see specific results, go to my post on Germ Warfare and you can click on a button with each question to see the results. It seems about half of us are using cold medications while half of us are using more natural solutions. Nose irrigation and using a humidifier ranked very high. I was able to get through my cold with a humidifier, peppermint oil at my bed side to open up my nasal passages, and some Tylenol to help with the aches.
Natural Fibromyalgia Relief Supplements: I have been on the supplements for about three and a half weeks now, which is how long Dr. Mayfield said it would take to feel a difference. I don’t know that I’m feeling a difference yet, but I’m so overwhelmed and stressed with year-end projects that I’m not sure I could feel anything but tired right now. I think I’ll have a better update next week.
Probiotics: Well, here’s a different type of ‘poo poo’… My IBS hasn’t been this under control in years. Those of you who have IBS know how amazing it is to have a regular week! I’m not sure if some of the improvements have to do with diet and the other supplements, but research and my doctor seem to think probiotics have been the strongest element in the improvement.
Diet/Nutrition Project: Geez, starting a new diet during the holiday season is about the hardest thing you could do to yourself! This is a work in progress. I’ll have more info on this in January.
I hope you’re having a wonderful week–and finding joy every day!
Germ Warfare and Fibro November 30, 2010
I had a lovely Thanksgiving holiday. Great meals, wonderful time spent with friends and family, fantastic shopping, even some much needed downtime. It was lovely…until Sunday mid-morning. The tell tale nose itch started, quickly followed by a little pressure in my chest. Yep, I was given the gift of a cold.
I have been crazy about washing my hands this season. I work with a lot of people, including kids, and I always seem to pick up colds easily.
But, I couldn’t resist playing with my nephew. He usually isn’t as interested in me as his sister, and when he was willing to snuggle and play, I just couldn’t resist! But, all of the handwashing didn’t do a thing when he coughed. Directly into my mouth. I tried to hold my breath, but I knew I had been ambushed.
The Honey was also infected. His immediate response? Drugs and orange juice. He’s already in better shape. As for me, I feel my body slipping into full blown cold mode. Tender points are starting to hurt, I’m not sleeping, and my stomach hurts.
As usual, I went online to search for some ideas on how to escape or shorten the cold cycle. Every article said the same thing: cold medications and fibro don’t mix well; colds will throw you into a flare up; and the great news that people with fibro are more inclined to get colds, and more severely at that. Treatment options? Go natural–nose irrigation, humidifier, Vicks, and a lot of laying on the couch under an electric blanket.
What?! I guess I knew that. I do get a lot of colds and they seem much more severe than what my friends and family get. I figured I was just a big baby about it. And, I also read that cold-like symptoms are a common symptom of fibro. This blows (pun intended).
So, Readers, it’s time to pool our experiences and resources and come up with some strategies to help all of us during this cold season. I don’t know about you, but I have too much I’d rather do than lay on the couch miserable.
Below, are several polls for us to collect our thoughts. Vote away and I’ll report the results next week! Don’t hesitate to comment on this blog post with your ideas, I’ll add them to next week’s post as well.
Here’s to some Kleenex free days ahead…
Natural Fibromyalgia Relief Project
I’m still taking the supplements. No change to report at this time, probably because I wouldn’t notice anything because of this cold! I did have a second session with Marilyn Shaw. We had a great conversation about some experiences in early childhood that may have set the stage for fibro. I’ll be speaking with her again this week and posting a blog about my total experience soon.
I started some research about what type of diet is best for fibro, arthritis, IBS, and kidney stone prevention. Here’s what I know so far: if you combine all the website tables into one, we would not be allowed to eat anything except organic carrots and could only drink sterile water! Um, no thanks. In other words, no one agrees on what the best/worst foods are for any of these conditions. I’m still hard at work on this and hope to have better information soon!
I did start on a probiotic supplement 10 days ago, after receiving doctor approval. I have to say, I have notice a BIG decrease in IBS symptoms. Yay!
Wishing you a healthy week ahead!
It’s Time To Try Defying Fibro November 23, 2010
Something has changed within me
Something is not the same
I’m through with playing by the rules
Of someone else’s game
Too late for second-guessing
Too late to go back to sleep
It’s time to trust my instincts
Close my eyes: and leap!
It’s time to try
I think I’ll try
And you can’t pull me down!
—Defying Gravity from Wicked
So, a cheesy way to start my blog post this week. But, I have good reason, I promise!
I woke up Saturday with this song stuck in my head. By 8:30 am, I was screaming this song (I really don’t sing) in my house, frightening my dog and cat, and hoping I wasn’t freaking out my neighbor. While I do regularly dream about showtunes (bet you did know I was this weird!), I somehow felt a connection to the lyrics beyond that I just like the song and show.
Something HAD changed within me, something wasn’t the same. I woke up feeling…darn good. Empowered. Triumphant. Determined. The more I shouted the song, the better I felt.
It’s funny, fibro tends to give us a set of ‘rules’ to live by. You must sleep more than the average bear. You have to eat only these items or IBS will flare. You’ve got a long list of medications that must be taken at the right times or you won’t be able to move. You have to find the energy and time to make it to a long list of doctor appointments. It’s a big world filled with no’s and limitations.
But, how many of us set up our own rules that we don’t really need? Because an exercise hurt two years ago, we rule it out permanently. We once heard that a supplement was nothing more than snake oil, so we avoid all of them. Once, a specific vegetable made us feel kind of sick, so now we don’t eat anything from that family. I know I’ve done it many times. Afraid to make pain worse, we keep contributing to the list of no’s.
But, what happens if we say ‘yes’? Do we risk worsening our conditions? Eh, maybe. But, what if we open up to the possiblity that what’s right for us might be something we used to rule out? What if that’s the key to a better life?
I said ‘yes’ a lot last week to things that were previously off the table. As you know, I’ve been trying out the Natural Fibro Relief supplements and counseling sessions. I was previously saying no to supplements, as my doctor didn’t even mention it. It took some time for me to say yes to the project because I had it in my head that supplements wouldn’t work or were snake oil. I also had it in my head that I really didn’t need counseling on my spiritual life because I felt it was good enough. And, I really didn’t want to hear that my diet needed help because I didn’t want to let go of what I felt I had some control over. I also didn’t want to admit that I thought I was having issues with candida.
But, I said yes.
And that’s what led me to singing at the top of my lungs. It’s too soon to tell if the supplements are really helping. I’ve only had one session with Marilyn Shaw (though excellent!). My friend that was going to help me with diet has too much going on to help right now, but I found myself immediately looking for another alternative. Those specifics don’t matter.
What matters is that I’m not letting fibro be the boss of me. I am opening up to new chapters of my life with living well with fibro. I’m breaking rules of this game–my own included. I am allowing myself to be open to all the possibilities, not just the possiblities within boundaries that I’ve built because of one time experiences or a negative thought I’ve heard somewhere along the journey.
I’m changing, as is my condition of fibro. Instead of constantly fighting, we’re getting on the same page. We’re improving together. It takes looking at every aspect of wellness and an openness to change to find our paths. Will we get off the same page at some point, sure. But, I am committed to always searching, always exploring how I can have the best relationship I can with my body, fibro included.
So, I challenge you to look at what you’re saying no to. Do you have good reason to say no? What will you try today? You can bet that in the next week, I’ll be doing the same.
By the way, did you see my guest post on Natural Fibro Relief’s Blog? I answer questions about what fibro has brought into my life, changes since diagnosis, and what I hope to offer readers.
Have a beautiful holiday weekend!