Peachy

July 12-12-12 Project Member

Transcript

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Marissa:  Welcome to the 12 Months, 12 Journeys, 12 Lessons podcast. This show features monthly a different health condition or cause. The goal of the show is to learn from and uplift our guest. My name is Marissa Christina from Abledis.com. I need you guys to know right now that I have a special place in my heart for health advocates, and today we have a dynamic one in our midst.

Peachy is an arthritis advocate, blogger, volunteer, wife, and mother, in her own words, to three crazy dogs. She graduated from college with honors, is on a path to a successful career and is married to her soul mate.

In addition to the many roles she plays, Peachy has been a volunteer since 2006 with the Arthritis Foundation, Denver Arthritis Walk, event co-chair on the Denver Arthritis Walk since 2009, and her devotion for volunteering has placed her on the  national level as the Arthritis Foundation’s social media chair.

Happy and humbled to welcome to the show, Peachy. Hello Peachy!

Peachy:  Hello! How are you?

Marissa:  I’m blessed. Thanks. This month’s 12-12-12 project is focused on arthritis. Peachy, before we jump into your specific type of arthritis, I think it’s important for you to take us back to school today because there are definitely some misconceptions that I had about arthritis before I started this project and I feel a little like Arthritis 101 is definitely in order. Can you share with us a general overview of what arthritis is?

Peachy:  Sure. Arthritis is the inflammation of joints. What that can go ahead and portray is a degenerative type of arthritis, which we’re mostly familiar with in terms of osteoarthritis where an athlete goes ahead and gets arthritis and the joint just becomes deteriorated and just disintegrates.

Then there’s autoimmune arthritis where the arthritis not only happens within the joints and inflammation within the joints, but it can also happen with the organs. Therefore, the organs are being destroyed within as well as the joints. That’s a basic Arthritis 101 overview of the two different types of arthritis there are out there for classification purposes.

Marissa:  Gotcha. So if we said anywhere from 200-300 joints in the body, could any joint be possibly affected by arthritis?

Peachy:  Yeah. It can be, actually. It can go ahead and affect your pinky toe all the way from your typical knee that you normally would associate it with to your shoulder – even something as serious as your jaw. You never really think of your jaw as a joint, but the bottom portion of your mouth – the jaw portion – is actually a joint because it’s connected into your skull. That actually can have arthritis. You can actually have arthritis in your jaw.

Marissa:  Wow. One thing I learned about arthritis – and I guess I can say this about several other medical conditions – is each person carries a pretty unique experience with the condition itself. Let’s just give common symptoms – general symptoms that an arthritis patient may possibly encounter.

Peachy:  An arthritis patient may encounter stiffness. They may encounter heat around the inflamed area. It’s kind of like a cut on the hand where you get a cut and all the capillaries rush to the cut to be able to bring the blood back to it; that way, it can heal.

Well, within arthritis, it can actually go ahead and do that, so all the blood is trying to flow to the joint to try and heal itself, except your immune system is attacking itself, so it doesn’t know which guys are the good guys and which guys are the bad guys.

So if it’s warm to the touch, it can also be very stiff, very painful as well as inflammation. It can also be swollen, too.

Marissa:  That leads us into the question about treatment options, then. Can arthritis be cured or is it not a curable condition at this time?

Peachy:  At this point in time, there is no cure for arthritis. That’s why I am passionately devoted to the Arthritis Foundation, because one of their missions is to go ahead and ultimately find a cure for arthritis and its related diseases. I’m hoping one day to actually see a cure in my lifetime, which would be fantastic. But at this point in time, there is no cure.

There are medications that research from the Arthritis Foundation has actually been able to develop and advance. That’s another reason why I devote my time to this amazing cause. Not only am I bettering my options and ideas out there for a potential cure; it’s also leading to the next best medication out there.

Marissa:  That’s fantastic. So right now since there is not a cure at this current moment, everything for medication is system management? Is that really the goal of treatments right now?

Peachy:  Yeah. It’s symptom management and pain management. You’re trying to limit the amount of pain and damage that it’s actually causing to the joint and to actually allow the joint to move. There’s been research and studies out there proving that all types of arthritis can and mostly do benefit from any type of movement and exercise, which is another main mission of the Arthritis Foundation – increase movement within your daily activity.

Marissa:  That is good, folks. A little Arthritis 101. Take me back to the first symptoms, Peachy. What is it that you started feeling back in the day that alarmed you that something was up?

Peachy:  I started experiencing pains when I was at the age of 14. I had back problems and my doctors told me that it was due to the overweight that I was carrying in my backpack from all the school books. And since not studying wasn’t an option, I had to make other arrangements. I actually ended up taking my books, what I would need for each class, and stop off at my locker between each class. That way, I could offload the heavyset.

Then at the age of 16, my ankle became so inflamed that I went to the emergency room and they couldn’t find anything that was wrong with my actual ankle. It swelled up to the size of a baseball and I couldn’t walk on it for a couple of weeks. Gradually, it decreased in pain but I was seeing a podiatrist and an orthopedic surgeon.

As I was about ready to go into surgery, we were prepping and discussing about it, I got drastically sick and lost 20 pounds in about two-and-a-half weeks and this really concerned my doctor, so we discussed what the options were. She took a full blood panel and that’s when she found the arthritis marker for my particular arthritis, which doesn’t necessarily mean that I had arthritis at that time. A rheumatologist needed to see me, but it was an indication of the next step that I needed to take.

Marissa:  Wow. So that was 16 years old?

Peachy:  Yes.

Marissa:  So here you are with this initial shock. Please, for the listener, say the pronunciation of your particular arthritis.

Peachy:  The type of arthritis that I have is Ankylosing Spondylitis. It’s a disease that affects primarily your back and is an autoimmune arthritis, so there is no cure. If it’s not managed and controlled, it can attack not only my joints, but also my organs. But I’m lucky to say that my condition has been managed and I have actually stopped the progression of Ankylosing Spondylitis, often known as AS.

Marissa:  AS – we’ll go with that for the duration.

Peachy:  That’s fine. It is quite a mouthful.

Marissa:  Let’s break it back down to the initial shock period. Now you’re 16 and you’ve been given the diagnosis of AS. Now take me back. You’re there in the doctor’s office. What was that initial shock like for you? Were you a little confused? Take me through that process.

Peachy:  I was confused, but also relieved in a way, because at one point I thought I was going crazy in my head because nobody was believing me of how much pain that I was in and that this was more than just a heavy backpack, and my ribs hurt because breathing hurt so bad that I took electrical tape and taped my ribs together because it hurt so bad or that I couldn’t walk because my ankle was so inflamed that they put me in this big old boot to be able to try and help me walk and control how swollen it was, and that they thought I was lying because they thought I tripped or fell and didn’t want to admit the truth of what actually happened when really, nothing happened. Absolutely nothing happened to cause this situation.

So when I got the diagnosis, I was really confused because you don’t hear the name Ankylosing Spondylitis as a condition that you normally hear. Then I was also confused because of arthritis. I was 16 and thought arthritis only affected older adults and that’s what happens when you get older. You get arthritis when you get older.

So it was not only a relief, but also a confusing time of such a learning curve that I had to do to actually understand what this disease was and try and fix it to where I can manage it as soon as possible.

Marissa:  So here we are at 16, a complex diagnosis. Was your family super supportive during this time? Did you have family around you?

Peachy:  I wouldn’t have been able to make the decisions that I was able to make without my family. My family was very supportive of me. I went into the rheumatologist’s office my first appointment, my mother was there with me and I told him I want to be able to have a normal life as much as possible. I want to be able to run and jump and hopscotch and do jumping jacks and play with my friends and hula hoop and do all those things that you normally could take for granted.

I want to be able to walk up the stairs by the time I’m the age of 30. I want to be able to wash myself in the shower by the time I’m the age of 40 and I wouldn’t have to make the decision of “Am I going to take a shower today or am I not?” because I’m in too much pain. I told them I want my normal life. I deserve my normal life, I’m only 16.

We decided to come up with a course of plan that was right for me. My family was behind me 100% knowing that this is the way that I want it to go. We had an aggressive treatment for me. To this day, I’m very thankful that I actually spoke up and told them what I wanted and how I wanted it, because I don’t think I’d be in the same place as I am today had they not listened to me that first meeting.

Marissa:  I just want to say to the listeners, that’s an advocate. Advocate for yourself. It’s super important. If you did an aggressive plan from a young age – I’m assuming part of the plan is definitely medication – where are you at today? Normally on the show we mention words like medication cocktail or a cocktail, so what is your current prescription cocktail?

Peachy:  My prescription cocktail – I am on a medical infusion. It’s a biologic medication that I receive intravenously, so through IV. It’s called Remicade and I’ve been on that for 11-12 years now and it has been working fantastically. Through the aggressive trial period, I went through many medications from oral to injectables to steroids to anything that you can imagine to where I am today. It was kind of a treacherous road to be able to find the medication that was able to work for me, but I’m glad that I did find it and I’m glad that I’ve been honest about it and have explained it to my doctors.

Not only am I on Remicade, I’m also on a medication called Restasis. It’s for my eyes. It’s to go ahead and keep the inflammation down in my eyes and keep the dryness at a bay. You might have seen the commercials for dry eye, producing enough tears. The medication, Remicade, that I’m on can create dry eyes and I live in a very dry climate,  so they don’t exactly help the situation. So I’m on that medication.

I’m also on Nasonex to help with my sinus infections. That’s one of the side effects for Remicade. As you can tell, this biologic medication is a very serious medication. When I receive it, it’s taken very cautiously and very proactively in terms of watching me.

I’m also on a bunch of supplements and vitamins. The medication, Remicade, depletes my immune system, so I had a very low immune system. Remicade blocked out the entire immune system completely so I started from scratch and slowly over the years had been able to build up my immune system where I can be in public areas and not be afraid of getting sick. The supplements are about 20 pills a day. It’s not exactly a lot of fun, but it keeps me healthy.

Marissa:  That’s important, definitely. Speaking of infusions, I think we should break that down a little bit because when I’m thinking infusion, you can’t give the shot to yourself; you have to go to a center.

Peachy:  Yeah. I go into an infusion center and it takes about two hours to receive this medication, so it’s through IV. It’s in liquid form and I receive it through my vein in a needle – that’s a lot of fun – in a tube. I sit there and receive this medication. This medication is as dangerous, or just about as much, as chemotherapy, so the precautions that they take for are very high.

The infusion center that I go to is very clean, very protective. Each medication they develop the medication, put it inside the IV bag right in front of me so that I know exactly what medication is going in in front of me. They review it with me, they make sure that I am who I am, they check the charts multiple times. They not only check my weight, height, blood pressure and all of those, and temperature, before I receive the medication. But they check my blood pressure and temperature halfway through the medication and then afterwards as well to make sure that there’s nothing been going on.

Like I’ve said, I’ve been doing this for about 12 years now. This coming month will be my 90th infusion that I’ve had in my life over the course of 12 years.

Marissa:  90th in your mid-20s, right?

Peachy:  Yes, I’m 28.

Marissa:  Good grief. Okay, let’s talk about this because there is something positive that you’re doing. Over on your blog you started something called Infusion Outfit Inspiration and I thought it was a pretty fantastic idea. Talk about what that is and how anyone can join in, or even I can join in, when I go to my appointments.

Peachy:  Infusion Outfit Inspiration started when I looked at my closet one day and absolutely hated it. I was reading a bunch of fashion blogs out there that I really have taken a liking to, to try and help me look at my closet a more positive way and inspire myself to dress with more with what I have instead of going out and buying what I think I need.

Since infusions are scary and nerve-wracking and you have to sit there for such a long period of time, I’ve gotten questions over the years of what do I wear? What do I bring? How cold am I going to be? Can I bring somebody with me? Those types of questions.

So I created Infusion Outfit Inspiration to try and inspire people who attend these types of infusions or doctor’s appointments to know that even if this is the only time you get outside of your house that this could be an opportunity where you can feel your best through what you’re wearing and taking trends that I’ve enjoyed watching and would like to go ahead and wear at my own infusion appointments. Sometimes I am actually wearing as similar outfit or sometimes I’m putting something that I really would like to wear one day within this.

It’s a challenge for me and I do it every single time that I go in for my infusion, which I do about once a month, to try and inspire other young adults and even just older adults who are going through something that could be a treacherous time in their life when they don’t really feel good about themselves to inspire them to wear an extra piece of jewelry that they may not have thought of before they left the door. If they’re going to wear sweat pants, shoes and socks, and a t-shirt and walk outside their door to maybe me think about grabbing a watch just to add that one extra special touch to make yourself feel better because somebody gave you that watch. That watch may have some kind of significance. That’s the background behind Infusion Outfit Inspiration.

Marissa:  That is fantastic. Now I want to jump over to the word flare-up. I really hear this word in a lot of common autoimmune conditions. Is there such thing as an arthritis flare-up, and if so, what does really mean?

Peachy:  Yeah. There is a thing called an arthritis flare-up and it’s when you’re going to feel extreme amount of pain within your joint or area almost to the point where you can’t move or to the point where you can’t move at all.

There’s an extreme amount of frustration and difficulty with having a flare-up because it can just come on suddenly to where you’re in a middle of an activity and then, bam, you have this increased amount of pain to where you can’t move anymore. It’s a very frustrating situation because you have no control over it.

Marissa:  I’ve yet to find an article, a book, or even a website that doesn’t include the importance of movement and exercise with arthritis. Have you found exercise to be an important part of managing your symptoms?

Peachy:  A huge part, actually, to the point where I wasn’t feeling very good yesterday, I was in a pretty decent amount of pain because of the pain that I have been experiencing in my hip and my back and I was thinking about not going to one of my favorite activities called Zumba. I went ahead and debated with myself as I was on my way to the class and finally decided to go. I’m really glad that I ended up going because I felt much better afterwards.

My doctor told me at the age of 16 how important it was to exercise, to where if I don’t exercise my spine will fuse and my lung cavity will actually freeze, and therefore if I do breathe heavily, my lungs would end up actually being punctured by my ribs. That scared me at the age of 16 to where if I don’t try and walk around the block or move or do something productive, I feel miserable about myself.

I know that I’m not helping myself in any greater detail, so I take exercise as seriously as I would taking my vitamins. It is part of managing and maintaining this disease on an everyday level. It’s scheduled within my everyday calendar and it’s set to reminders and motivates me so that way in 20 years, even in five years, that I’m still actually able to do the things that I love because I’ve taken the one hour out of 24 hours to actually get off my butt and go and exercise.

Marissa:  This might be a tough question, but for you, what would you say is the worst thing living with arthritis?

Peachy:  Probably not a lot of people actually understand the disease and how serious it can be and how isolating it can be. It’s a very individual, invisible, isolating disease. Say that three times fast: individual, isolating, and invisible disease.

It’s really scary when you don’t want to talk about how you can’t move because you don’t want to show people that you can’t do something. You feel very isolated and alone because you feel like no one else there has arthritis, even though there are 50 million Americans in the United States who have arthritis, which is one in five.

It can become very upsetting when you feel like you don’t have anybody you can talk to about the pain or trying to talk to family members who have known you since you are diagnosed and they still don’t understand the pain level that you are at and they’re trying to compare it to a sprained ankle. That can be very hurtful to somebody who has arthritis because that person may not actually understand that, yeah, that may feel kind of like a sprained ankle except it could be 20 times worse and all over my body. Trying to explain that to somebody who doesn’t have the disease can be very frustrating too. As I said, it can be a very isolating, individual disease.

Marissa:  Is there anything that you’re doing beyond the standard arthritis treatment protocol that’s helping you, say, prayer or affirmations, biofeedback?

Peachy:  Yeah. I go ahead and do actually a gratitude journal. I just posted a link – an article about gratitude. The article stated this morning how you need to exercise your gratitude muscle just as much as you do any other muscle in your body.

I have a gratitude journal that I write in every single day to where I actually write down what I’m thankful for. It could be something as simple as getting out of bed this morning three minutes before I actually wanted to or being able to walk up and down the stairs twice more than I did yesterday or I am grateful for my cats. The end. It can be something as simple as that.

I try and aim for five a day and I write it down in my journal. Whenever I’m feeling lonely or depressed, I go and I look back at the things that I am grateful for. There hasn’t been a time where I haven’t gone back and looked at it and haven’t come back on a happier scale. Mentally I write and do a gratitude journal and it’s helped me out of so many slums and heartache.

For those who are more of the mobile app e-mail type people who want the electronic version instead of an actual journal and trying to keep track of it. My favorite website that I actually use on a daily basis is called HappyRambles.com.  It’s a free website. You give them your e-mail address and you can setup what time of day you want the e-mail to come to your inbox and the inbox asks you every single day “What are you grateful for today?” You can attach pictures, you can write a journal entry, you can just write bullet points, you can just write three words, you can do whatever you want. But the nice thing is you can go back on that website and figure out what you want, go back and relook at all those entries.

It’s completely private. It’s not one of these social media sites that it’s then published to the entire world. It’s a private website and I absolutely love it because every single night before I go to bed it comes in through my e-mail and I can just type it out real quick and not have to worry about my hand cramping because of my arthritis or trying to find my journal when I’m really tired. I can just find my phone and then flip it on and write what I’m grateful for.

I can keep a track list in my reminders or a little notepad of what I’ve been grateful for all day so I don’t have to try and think late, late at night when I’ve technically turned off my brain and have moved on. Then I can just copy and paste it straight onto the e-mail, which is really nice as well.

Marissa:  That’s great. Repeat the name of that website once again.

Peachy:  It’s HappyRambles.com.

Marissa:  Perfect. So guys, go ahead and check that out. I’m definitely going to check it out for sure. Peachy, I’m drawn to interview people for various reasons but I think what drew me to you was your dedication to awareness. Let’s talk about Peachy’s Pack. What is it and what are you trying to achieve?

Peachy:  Peachy’s Pack is my team name that I set up for the Arthritis Foundation Arthritis Walk that I was co-managing with. I decided to share with my blog readers about my team and what we do and hopefully encourage other people to set up their own team and start fundraising or to just get an idea of what it means to have a team, what a team can look like, and how easy it is to actually manage. That’s the idea behind Peachy’s Pack.

Marissa:  Can people currently contribute to Peachy’s Pack?

Peachy:  The walk season ended at the end of June, so I’m not quite sure if my walk manager has setup the 2013 walk season page yet. But once it is, I’ll let you know.

Marissa:  Okay, cool. That’s what we’ll do. We’ll put it up on the website into your bio page, on the 2012 project page for 2013 Peachy’s Pack.

Peachy:  Perfect.

Marissa:  Peachy, I’m all about life lessons. All about it. I believe that so many important lessons are revealed to us especially when we’re dealing with chronic illness, so that’s what I want to dive into right now. Is there a lesson or message that you want to share with the listeners?

Peachy:  Yeah. It’s part of my header on my blog and it actually dawned on me that this is the saying that if I was to walk away from anything that I would hope people would remember what I’ve been doing for the Arthritis Foundation and that would be “Be the change that you wish to see.” This came for me actually after watching a Glee episode when Kurt was trying to become the person he wanted to be. They went ahead and said this quote, “Be the change that you wish to see.” I paused the show and sat there and tears just started falling off my face.

My husband, known as Mr. P, asked me what was wrong and I said, “That’s it, that’s my saying.” That’s what I’ve been trying to do with arthritis, with my disease since the very beginning but they said it in one sentence. I’m trying to be the change that I wish to see. I wish there was a change in regards to arthritis. I wish there was a change and a cure for arthritis. I wish there was more people who actually understood about this disease and where people didn’t feel isolated and alone and felt freely to talk about it and not feel like people are going to discriminate against them, and make them feel alone. I’m trying to be the positive change in which I hope people who have arthritis can see. So, that’s my main life lesson that I’ve been trying to go after.

Marissa:  Peachy, thank you for being open to sharing with us your arthritis experience and teaching us about arthritis. I’m going to continue and I encourage the listeners to continue to follow Peachy and be inspired.

If you want to learn more about Peachy, please check out her blog PeachyPains.com. If you want to learn more about arthritis, please check out the Arthritis Foundation over at Arthritis.org.

Thank you and much love.

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