My Struggle with Anxiety

While meeting with my weekly support group for chronic illnesses, I have realized that all group members struggle with anxiety and stress to some degree. We all have a disease that is ultimately uncontrollable. We can manage our illnesses with medications, diet and surgeries, however they have no cure. My theory is that when people cannot control a major part of their lives, they resort to the control of everything else in their lives resulting in stress and anxiety when life cannot be controlled how they wish.

When I write this it seems a bit extreme. But I think it is completely true for many, many people - some more severe than others.

I believe that anxiety is stemmed from many other issues as well. But since I have an autoimmune disease, this is the type of anxiety I can relate to.

I have always been an organized and clean person. But the emotional stress I feel when things in my life are not organized or clean has increased as I have grown into my 20's and was diagnosed with Crohn's disease. I can see stress in all parts of my life, and it is an issue I am well aware of and working on.

My husband does not let my anxiety of certain life issues slide. These issues are addressed and talked about. I am so thankful that he is not fearful to confront me when I am "stressing" too much. Because of him, I have become more aware of an issue in my life that I desperately do not want to control but let go of and give to God.

I want to be a woman who is willing to try new things with no fear. I want to have a spirit that embraces failure as "okay" at times. I want to capture those stressful thoughts and and let the God of the Universe hold them for me. I want to be a mother who lets her children fail and most of all teach them to get back up. I hope to be the kind of mother who gives the safety and health of her husband and children over to Jesus each night.

I worry about money, when we are so blessed. I worry about losing my husband and dog, when I should spend my time being thankful for having them in my life. I worry about my health, when I know it could be so much worse. I stress about doing things the right way, when sometimes there is no "right way." There is only God's way.

Anxiety in nature in selfish, because all you are focused on is your needs, your plans, YOU. I do not want to be this type of person. I want to focus on the needs of others and be open to new and different plans.

Although some medications do help at times, I also believe there are natural ways to help deal with stress.

According to the Anxiety and Depression Association of America, these coping strategies listed below should help:

Daily exercise
Eating a well-balanced meal with energy boosting snacks
Learning when to take a time out by having a massage, listening to music, doing yoga etc
Getting enough sleep
Limiting alcohol and caffeine - these can aggravate anxiety and trigger panic attacks. eek, didn't know that!
Accept that you cannot control everything - the hardest one!
Maintain a positive attitude and welcome humor
Getting involved in the community
Talk to someone, a friend, family member, support group or counselor

I certainly plan to slowly incorporate these into my life. But I must remember that if I fail, it is OKAY! No reason to stress when things do not go as planned! :) (easier said than done)

My Bathroom Pass

In my wallet, I carry around a "Bathroom Pass"- or at least that is what I call it. It is a laminated official card made by the Foundation of Clinical Research for Inflammatory Bowel Disease that helps patients to be able to use a restroom anywhere, at any time and fast, whether it is a public restroom or not. I have read some articles and heard some opinions that this is not needed. Some may think this is over the top or silly. It certainly is not.

People with inflammatory bowel disease really cannot hold it long or not at all. If I do not get to restroom fast when I need one I feel as if i'm very close to having an accident and it makes me dizzy and nauseous. Thankfully, I have not had an accident since my diagnoses, but I always make sure I am close to a bathroom, especially when I am flaring.

Last weekend, I almost had to pull out this bad boy. I kind of wanted to, it makes me feel more in control of my disease. I was shopping around in Anthropology (love that store!) in Tulsa, and all of a sudden I did not feel good. I had to go-now. I urgently searched a worker and asked where the bathroom was. She said it was only for employees. I asked her where the closest restroom was, and she she that it was way across the parking lot at a Starbucks on the other side of the shopping center. I told her I have Crohn's disease, and need to use their restroom immediately. Thankfully, the worker quickly grabbed her manager and they escorted me to the toilet. I know it is not always this easy in retail stores though.

I am thankful for sympathetic retail workers and my card to back me up to prove my condition. Sadly, Oklahoma is not a state that has passed the Restroom Access Act, also known as "Ally's Law."

"This advocacy movement is named for Ally Bain, who has Crohn’s disease, a type of inflammatory bowel disease (IBD). Several years ago, as a young teenager, Ally had an accident in a store after her request to use the employee restroom was refused, despite her explaining repeatedly that she had an urgent medical need. After that humiliating experience, Ally successfully worked with legislators in her then-home state of Illinois to enact a law to address similar situations in 2005. Since then, with continued public advocacy by Ally and others, similar laws have been enacted in twelve other states: Colorado, Connecticut, Kentucky, Massachusetts, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Washington State and Wisconsin. As these are individual state laws, they each vary in certain details, but most say that a “retail establishment” must give a person with an “eligible medical condition” access to an employee restroom if there is no public restroom immediately available, there are at least three employees (in one case, two) working at the time, and the facility itself or its location will not pose a safety hazard to the person or security risk to the business (www.ibsimpact.wordpress.com)."


Below is a photo of my pass:

So, I sure hope any of you who work retail out there or own a business will always let someone with a medical condition use your restroom. Even if you feel more comfortable escorting them and waiting outside the door, we don't care! We just need a toilet. :)

Let's Talk Money

Since it is the beginning of a new year, health insurance went up, more money is being taken out of everyone’s paychecks due to taxes, and prescriptions had to be re-ordered for me-of course those prices went up as well.

Money. Living costs money. Money can be a blessing and stressful all at the same time.

It is said that money is one of the main causes of conflict in marriage and reason for divorce. Divorce is not an option for us, but it definitely can and has been a source of tension at times.

It takes a while to figure out how we both want to spend out money, budget and how we handle the unexpected financial issues. We may disagree sometimes. We work it out. It’s definitely been hard for me, because I like to control where my money goes. But my money is not just mine now, it is ours and God’s.

I am a lover of budgeting. I love to keep a budget spreadsheet, and I LOVE to stick to it. But we all know that rarely happens that you stick to it to precisely, because life happens and things come up. I try to plan for the unexpected, but I just can’t.

I had no idea 2 of my main prescriptions I take for my Crohn’s disease would go up from 40 dollars a month to 70 dollars a month.  You wouldn’t think 60 dollars a month extra would make a difference, but with all other prescriptions I pay for a month plus doctor’s appointments, it just adds up. And I don’t like it.

Thankfully, I spoke with my doctor’s office about the increase, and they are going to give me samples each month for one drug as long as they can. They agreed to do this, because the plan is that sometime this year I will try to get off this drug since I have been on Cimzia (the shot) for a while now. I shouldn’t need to be on both, but it can take a while to wean my system off drugs it has been on for a long time. 

I love to save money-especially with medical expenses. Although my health is important, we are young, and I want to spend our money on other things.

Sometimes I feel guilty for spending money on my medical expenses-because I have more medical expenses than most my age and more than Isaac. So, I feel bad for a certain amount of our budget going towards my medical expenses. I know I shouldn’t, because we do not want me to be sick. It is just something I am working on. I have to remind myself that my health is worth it.

Speaking of expenses, our sweet little morkie Izzy is having a stubborn baby tooth pulled next week. She is nearly 2 years old, and her last little baby tooth is jammed in there with her adult tooth and it will not fall out on its own. This can create tooth decay and health problems for our babydoll. So, it must be pulled. Of course, this will cost us 250 dollars. So, high maintenance she is. J

Unrealistic Expectations

Well, we made it through our first married Christmas together. It was the busiest holiday season I have ever had since I am married and have in-laws now. It was different, but good different. Marriage brings loads of change - some changes you expect and some you don't think of and some that are complete surprises.

We manged to fit our Christmas traditions and visiting family into 4 days. It really worked out pretty well, except Christmas day was very busy. We went to 3 family homes on Christmas day, and it just about wore me out. It was worth it for one day to see all the people we got to spend time with though. Today, the day after Christmas, Isaac and I recovered from the holiday extravaganza by literally laying on the couch watching the TV show "Heroes" for 7 hours! Days of rest are a necessity in this house. :)

During the Christmas holidays, we got into a little tiff and somehow got to talking about some of my unrealistic expectations that I have brought into marriage. I thought I was prepared; I thought I had faced all of what I thought were my unrealistic expectations before the "I do's." Why do these realizations always come about during tiffs? :) Probably because I realize how wrong I am.

When we got married, I assumed and expected that my husband should always take out the trash, which he does a lot of the time! Nevertheless, it was still an expectation. I think since I always saw my dad take the trash out growing up, I assumed taking the trash out was a man thing to do. But that is not true, I can totally walk to the side of the house and put trash in the dumpster, which I do sometimes haha. Most of the time I tie the trash bag up and set it on the porch hoping Isaac will see his gift I left for him to take care of ;)

A big unrealistic expectation that I had going into marriage was that our spiritual life should be nearly perfect for some reason and look like how I envisioned a youth pastors marriage. I envisioned praying and talking about God all day everyday. We do pray together and we do talk about our relationships with God. I am realizing that our spiritual life is something that will probably be up and down and constantly growing as we grown together-just life our personal relationships with God. It's not always perfect. We both try to strive to keep God at the center by trusting him and loving each other like he loves us.

I also realized that every marriage has a different spiritual life. Isaac said there is no perfect template for every couple. There is no template for what kind of church you should go to, how you should pray together or how you should serve God as a married couple.

Lastly, when I was first diagnosed with Crohns disease I expected that my husband should understand everything about my illness just because he is my husband. My husband is a person too. He is not perfect. He has a right to have questions, doubts and a hard time dealing with my Crohns just has much as I do.

Don't get me wrong - Isaac completely supports me and always has my back. He will go to doctor's appointments with me if I ask him to. But I have learned that if there is something specific I need when I don't feel good, I must communicate with him and be specific.  I must communicate things I learn about the disease. I cannot expect him to remember every little thing and every type of drug I take or have taken. It is easier for me to remember things, because it is happening to my body. Not his. I cannot expect anyone to understand exactly everything about Crohns, except maybe someone with Crohns. I must be patient with him and everyone else. I know he is trying his best. He has done very well with learning my diet. And my diet is no easy task. :)

I hope this post helps young newly weds or young couples who are on the verge of marriage to think about their expectations they have as well. Dig deep and don't be afraid to talk about them. Don't be afraid of tiffs! Get into them and be realistic with how you envision your married life together.

About 3 weeks ago, I stopped taking one of my drugs that I have been on for about a year and a half - Entocort. Entocort is a small dose of steroids. It does not have the same effect as Prednisone - which is the strong stuff. My doctor wanted me to try going off of it since I have been on Cimzia for nearly 4 months now.

I'm not sure if it is related, but ever since the weekend I went off of the drug I have been having bleeding, diarrhea, nausea, intestinal stomach and back pain about every other day. It hasn't last for long on those days, maybe a couple hours each time. It hasn't woken me up during the night, which is good. The symptoms are still very painful, make me feel like I have the stomach flu or something, and  disrupt plans during the days. We couldn't make it to the Christmas Eve service at church with my family, because I was stuck on the toilet  and curled up in a ball on the couch for about an hour and a half.

I have a GI doctors appointment tomorrow, so we will see what she says. I know I will get to remission at some point, I just don't know when.

Dear Ellen: My Letter to Ellen Degeneres

Dear Ellen,

My husband and I were married on June 15, 2012. After 7 months of some stressful planning, it was the day I had always dreamed of and everything was absolutely beautiful from the flowers to the cake to the ceremony. I loved that day.

I had also been looking forward to a week long vacation in Riviera Maya, Mexico to relax and have some romantic time with my new husband. I bought new swim suits, a big floppy straw hat and new lingerie. J

Unfortunately, our plans of de-stressing on the beach for the week did not happen.

On our second day into the trip, we went snorkeling that morning. When we were swimming back to the boat to get in and go back to shore, my husband was climbing the metal collapsible ladder and his finger got caught in the hinge of the ladder. The water was choppy and the ladder closed on his finger suddenly and cut off part of his right index finger!

I was already in the boat, and I looked behind me to see him floating in blood and looking like he was about to pass out. I could see bone sticking out and wasn’t sure what had happened exactly, but I knew it was not good. The boat people were not helpful-no first aid kit and all they handed him was a tissue. A tissue!

We had to climb onto an ER jet boat that took us back to land. After about an hour, we were taken by bus to a nearby Mexican hospital. We stayed 2 days in that little hospital. And let me tell you, it was not like American hospitals!

No one spoke English, it was not super clean, there was construction going on inside the building, and I had no idea what was going on! They would give him drugs and not ask us or tell me what they were giving him. He had surgery to take a skin graft to cover the bone, and they kept him awake during the procedure!

At one point, I remember hearing him scream through the hospital and I had no idea where he was. It was terrible. I couldn’t get a hold of our families, because my phone would not work in Mexico, and there was no phone there they would let me use. I did figure out how to use texting through the hospital’s wifi.

With the help of a translator we had for a little bit, we found out that Isaac had lost the top one third of his right index finger and the bone to his first joint. In the surgery, they tried to cover the tip of his finger with a skin graft from his middle finger and the back of his ear.

The rest of the week was spent managing his pain. He was in a lot of pain and did not sleep a lot. I was hoping that by the time we made it back to the resort, I could at least get a day on the beach. But nope! 

When we finally got back, it poured the entire time. So, for the remainder of our honeymoon, we were stuck inside watching TV and Isaac not feeling well.

Never were we so happy to get back home to Oklahoma to our little one bedroom apartment. But the stress had only just begun.

A few days later, Isaac had to have reconstructive surgery on his finger in Oklahoma, because his skin graft had failed. The hand surgeon in OKC repaired nerves in his finger, and he gave him more length and a fingertip by taking fat and more skin grafts from all over his hand.

It took months to recover, and he still is not completely able to fully use his finger yet. We do not know how long it will take.

For me, this was way more stressful than planning a wedding and one of the most stressful events so far in my life. Because of the stress from the week, it sent me into a Crohn’s disease flare up. I was diagnosed with Crohn’s disease about a year and a half ago. I have yet to reach remission, but major stress events are not helpful at all.

A couple weeks after we got back from the trip, I went into a flare and for months, I was sick. I lost weight, blood, many days of work and just plain did not feel good. I am still recovering from my flare, but I feel am on the uphill now. J Fingers crossed!

In the midst of all this, your show brought laughter to me an hour each day and helped me forget what was going on in my life. It reminds me that finding the funny things in life to laugh about even in the most stressful, not fun times can get you through it.

I record your show every day while I am at work, and I recorded your show during the week we were gone on our honeymoon. When we returned, it was so refreshing to be able to watch your show (even though they were summer reruns) and laugh!

So, thank you. Thank you for making people laugh once a day. Thank you for dancing. Thank you for not being afraid to be silly in front of millions of people. Thank you for scaring people. Thank you for your bad paid for photos, bad tattoos and your hidden camera pranks. Thank you for giving back and inspiring so many.

Sometimes I ask myself why we had to go through all this in the first 6 months of marriage. Why us? I know married couples go through hard times, but in the first 6 months?? These are supposed to be the happiest times. I do not know why, but I do not that we are closer as husband and wife than many other newlyweds. I do know that in sickness and in health, we will stand by each other’s side. And I do know how important it is to laugh in marriage and in life. J

My Crohn's Advocate Magazine Came in the Mail!

                                                 

My Crohn's Advocate Magazine came in the mail! Yay!

This magazine is sent out quarterly, and I look forward to it every time it comes in the mail. Why? Because I have a Journalism degree, and I love magazines. I also love this magazine, because it makes reading about an autoimmune disease fun and interesting.

The magazine has Q & A sessions with doctors across the country, interviews with others like me around the United States, and it always features a well-known person on the cover who has Crohn's disease as well. It's so nice to read about other people like me who use a toilet as much as I do. Their stories help me learn how to live with Crohns and how to have a sense of humor about a disease that can be really embarrassing at times.

Cynthia McFadden is on this month's cover, and I loved reading her story. She has had Crohns for nearly 4 decades! She has traveled for famous news stories all over the world. Although she says the traveling and working is a challenge, she has made it through and succeeded.

This is so encouraging to me, because traveling and being as busy as she is is scary to me. I believe it is do-able as long as I prepare myself and communicate with those around me that I may need help and support. Sometimes people need to be patient with me, because I might not always be on time or I might need to stop everything I'm doing to get to a restroom. And who knows how long i'll be in there.

I am still learning my limits, because while my body is fighting inflammation, I have to say "no" to things sometimes to get the rest that my body is asking for. I do not have the energy to do a whole lot sometimes. I am learning to listen to my body. When I am in a flare, I have to rest more than usual. It makes me extremely fatigued.

It's all a balance, and it is nice to see someone like Cynthia McFadden can accomplish so much while managing a tricky chronic illness.

For more information about Crohn's Advocate Magazine you can visit www.crohnsandme.com.

This web site has all sorts of information about Crohns, and you can sign up to receive the magazine in your mailbox too!

I hope others with autoimmune diseases have something like this magazine or good websites. It's so helpful to connect in a positive way.

Hope everyone is having a great month so far! I'm ready for Christmas break. I'll be off 11 days from work!! Woo hoo :) Me and Isaac's 6 month wedding anniversary is in 2 days. Crazy that we have been married 6 months. We spend that amount of time planning the wedding! It sure is different trying to plan our Christmas with both our families now that we are married. It is all going to work out well I think. It will just be busy. But it will be nice to spend time with our families.

I Joined a Support Group

Recently, I joined a support group for people who have a chronic illness through my company Chesapeake Energy.

I really work for a great company. We have three chaplains at Chesapeake who are super passionate about helping people. The woman chaplain started the support group, and I really love it. It is a small group of about 6 of us who all have some kind of chronic illness. The group is all women too, which makes it easier for us to open up and share with one another.

Even though we all have different illnesses, we can relate to each other to easily. Many of us take the same kind of drugs, and much of our illnesses are inflammation related. We are all living with the illness and work a 40 hour a week job too. It can be difficult to hold a fulltime job when you do not feel well more than the average person. A lot of people with our illnesses go on disability, and I hope I never get to that point. 

I can relate to these women in a way I cannot relate to anyone else. They get me. When they nod their heads when I am sharing, I know they really do get it.

We talk about relationships, doctors, working, family, holidays, diet, stress etc.

We encourage each other and vent to each other.

Sometimes things just suck, and we need to acknowledge that.

You might think sitting around talking about chronic illnesses might be depressing, but it is not. It all depends on the attitude you bring to the table. We are all women who want to succeed in life, work, have relationships and be more than our illness. Yes, sometimes we feel down, but we get back up.

Talking with each other from week to week is so encouraging for me. It helps me to see that I am not alone. I am not the only one battling health issues as a young woman. It is a struggle, but who doesn’t have a struggle in their life?