Living That Chronic Illness Life

August 2015

Well my friends, I think this is going to be as good as it gets. From what I've read, there is no magical cure for depression and anxiety. It's something you have to manage. Hmmmm...does that sounds familiar to you? Celiac disease. No cure; manage it with your diet. IBS. No cure but meds to take the pain away; you still have to manage all the lovely side effects. Gastroparesis. Definitely no cure; eat smaller meals to manage it. Gastritis. No cure; manage it by taking pills to reduce acid. Depression and anxiety; no cure but be observant to what makes you worse, take medication, and try a slew of natural remedies. Post-Traumatic Stress Disorder (PTSD). No cure; learn how to avoid your triggers for management. Notice a theme? I think sometimes we focus too much on getting rid of the problem. However, some things in life we can't just get rid of. Realizing that every single day I manage the symptoms of seven chronic illnesses, it's no wonder that I'm so exhausted in the evenings. I read in one of my "self-help books" about how much energy a person uses fighting illness. Managing chronic illness is exhausting. What gives me comfort is that my body is used to managing things that aren't right in my body. Recently, I've had very good days! I don't burst into tears over nothing, and I haven't been too anxious to leave my house. There are still "bad" moments though, especially at night. Is that any different from managing IBS? I've had good days where my digestion agrees with me and then bad days where I swear I can literally feel my colon clamping down. A huge blessing that has come from my health journey is my body's ability to cope and manage. That's why I love this quote so much:

 

I know I can survive anything. I've often given myself this pep talk before. I'll say to myself, 'if you've had your stomach cut open and your gall bladder removed, you can take this organic chemistry test.'

 

One thing I want to make clear is to never let what you manage control your life and who you are. I drug two containers of Miralax and extra prescription medicines across the ocean to England. Nothing is ever going to stand in my way. Not my health, my medicines, my restricted diet, or my past is going to keep me from pursuing my dreams and goals. This determination combined with the ability to survive anything is pure power, and it isn't just for me. No matter what you've been through or what's happened to you, you have the ability and skill to survive. Even if you don't feel like it, I can promise you it's there.

(or man!)

 

So embrace yourself! Even if it seems like nothing is going your way, your situation now is preparing you for the future. Life is going to take unexpected turns, but you will always have what you need to survive. Just stay positive. I could easily complain about how much I hate my life (which I do sometimes, when I'm having a bad day), but every day I have a choice to either stay inside and take pills or bring my pills with me because I'm managing these chronic illnesses and I'm still out there swinging. There came a time when I finally accepted my health journey. It look a long time, and there are still aspects of my health journey that I want to fight, but it's in the past and I've become a stronger person because of it. Eventually I will accept my mental health diagnosis as well, and I'll become accustomed to managing the symptoms, just like I've had to do in the past. The key is recognizing what you have to manage and coming up with ways to manage it.

 

All of what I just said is easier said than done. Some days I feel very overwhelmed with everything that I have to do to manage my chronic illnesses. Other days it's a breeze. It all goes back to managing. Not every day is going to be perfect or the same as the day before. I try to take one day at a time and not worry about tomorrow. I put my trust in God because I know He has a plan for me so huge that I can't even imagine it tonight. I know that God has planned every minute of every day, every tear, and every diagnosis. I know He is with me all the time and loves me very much. I know that God has a reason for why I live with seven chronic medical conditions and His reasoning will always work out for the good. This faith in God is what brings me peace about my health and the future. With God on my side, the ability to survive anything, and a huge dose of determination, I know the possibilities are endless.  

 







When The Meds Don't Work And You Have To Try Again

July 2015

Hi friends, family, and followers! I've been doing alright, maybe even a little bit better. I stopped taking my medicine for depression and anxiety and instead increased the low dose antidepressant I have been taking for IBS. I've had three very good days, which are like bright rays of sunshine. I've had lots of thoughts on my mind lately, and thought I would share them here.

 Self-help books are amazing. It's okay if you feel weird in the mental health section of the library and pray that you don't see anyone you know. I've checked out 10 books about depression, anxiety, and post traumatic stress disorder. My doctor has mentioned how he thinks talking with a therapist would help me. While there is absolutely nothing wrong with seeing a therapist, that route is not for me. I felt very empowered with my stack of books and notebook that I take notes in. When I'm having a rough day, reading these books isn't a good idea and I'm better off reading Harry Potter. On days when I'm doing okay, I take immense comfort in the power of knowledge. Maybe it's the science-minded nerd that I am, but I feel so much better knowing how mental health issues happen and why these issues cause the symptoms that they do. The self-help books have also given me good tips to help manage these issues and help me feel like I'm in control. If anyone reading this is and is struggling with a health problem, I strongly suggest finding books to help explain your condition to you. Knowledge is power!

It's okay to feel the things we feel and accept those feelings. A lot of the books I've been reading have emphasized this a lot. It's important that we recognize feelings and accept them. By doing this, we can remember what caused these feelings. If these feelings aren't positive (called triggers), we can remember what caused the feelings and try our best to avoid them. For example, too much noise and stimulation gives me a lot of anxiety so I avoid places/situations that have this effect on me. Even something has simple has pausing the TV while the water in the tea pot is boiling helps me a lot. I've been able to use ear plugs at home when there is a lot of commotion in the house. At the same time, no noise at all makes me uncomfortable and takes me into my "dark place." So if I'm home alone, I watch TV or go workout until someone else is home and I feel comfortable reading.

Reaching out is so important. I've lost track of the times I've excited my mom or a close friend during an anxiety attack. I have also called my mom in a public bathroom stall during an attack. While it's not the same as being with someone else, talking it out can definitely help. There is NO SHAME in this. Reaching out, asking for prayers, or just telling someone of your struggles is not a sign of weakness. It's a sign of strength: you know you can't do this on your own and you need help. If anyone treats you differently or doesn't support you, get rid of them instantly.

Never underestimate the power of our five senses. Two of the books I read was about post traumatic stress disorder (PTSD). As I've said before, I believe I have PTSD. These books highlighted the role that the five senses (sight, smell, touch, taste, and hearing) play a huge role in PTSD. I've experienced this in a negative way: the sight of the hospital in Iowa City sends me into a panic attack; the taste of applesauce and jello reminds me of how much I ate those foods when I was sick. I'll skip the fascinating science behind this, but if you're interested, check out Recovering From Trauma and PTSD and The Everything Guide to Overcoming PTSD. These senses are so powerful when it comes to bringing back bad memories, but I've been blessed to have these senses contribute to bringing me out of an anxiety attack and calming me down: the hospital that I work at uses the same soap that my pediatricians and pediatric GI doctor use. When I randomly smelled my hands at work one day, I immediately felt a calm and peaceful vibe come over me. I didn't put it together until later on in the day, but the smell of that soap reminds me of my doctors. I spent a lot of time with these guys, and what do doctors always do when they see a patient? Wash their hands. My brain associates the smell of that soap with the feeling of peace and safety that those doctors gave me. Whenever I was with them, I felt well cared for. I've been "stealing" this soap from the bathrooms in the hospital and smell it whenever I'm feeling anxious. Sure enough, it works. Every. Single. Time. Now, of course, what kind of sick and messed up person gets comfort from the smell of doctors? I do! Depending on the day, I either burst out laughing or into tears when I have to smell my soap because it is a little strange, but if it works I don't care how crazy it seems!

I'm learning that living with mental health issues is a struggle, especially when the medicine isn't working fast enough, but the burden of living with these issues can be lessened by learning how to cope with these issues in a way that works for you.

Again, thanks for reading! Hopefully these posts are sounding more positive!

Sarah :)

Invisible Illness & My Journey

June 2015

Hello friends!
 Not too much change here unfortunately. I'm now up to 20mg of my "happy pills". I've had some occasional bursts of energy in the past few days so I'm hoping the next couple days/weeks will be more positive than the last. If I can stay distracted and busy, the anxiety and sadness doesn't bother me as much. The increased dose is definitely affecting my ultra sensitive stomach. I don't have much of an appetite and my stomach hurts almost constantly. I've been using my previous techniques to help relieve this annoying side effect.

My main purpose for writing this post is to release some thoughts and feelings that have been going through my mind lately. If you see a picture of me, you would never guess that I have four chronic digestive disorders, depression, anxiety, and a touch of PTSD. A picture doesn't show that my small intestine can't absorb gluten or that my colon randomly pinches and gives me pain. You can't tell from a picture that the inside of my stomach is inflamed and I have low stomach acid. You also can't tell that my entire digestive track moves so slowly that I never feel hungry or that I don't have a gall bladder. You definitely can't tell from a picture that I have low serotonin levels in my brain. I have what is called an Invisible Illness, and multiple of them. Just because I look healthy and happy on the outside doesn't mean that's what is going on inside. A popular quote tells us not to judge others because we don't know what battle they are fighting. Since I've gotten sick, I've been more observant about this and am trying to be less judgmental of others. Just because these illnesses are invisible doesn't mean they can't be talked about. I'm a big fan of spreading awareness about my conditions. My motto is, "If you got it, flaunt it. No shame." There is no reason why I should hide what I've been through and what I struggle with now. I know writing this blog has been able to help others who are going through the same thing, and I'm beyond thankful that I have the opportunity to do this.  

Since all my health issues are invisible, it can be easy to be occupied with the present and not the past. It's been almost three years since I was finally healthy in August of 2012. A lot has happened in those three years. Yet there are daily reminders of my health journey everywhere. I have four scars on my stomach from my surgery, my mask from the surgery is hanging in my room, my artwork with prescription labels is also in my room, and I always sleep with my teddy bear dressed in scrubs. All these reminders are so familiar to me now. However, last week I was going through one of my dresser drawers when I found my collection of hospital bracelets with my name, age, DOB, and doctor's name on it. I was already having an emotional day, and this tipped me over the edge. My mom came upstairs to find me surrounded by these paper bracelets and sobbing. I felt like I had finally moved past everything that had happened to me and it all came rushing back. All these images flashed through my mind of me sitting in freezing cold hospital waiting rooms for a test that might give me an answer to what was wrong. I saw myself reading Harry Potter while dressed in nothing but a hospital gown waiting for my second endoscopy and first colonoscopy. I remembered when I got sick the second time around (after being healthy for eight months) and reading a book about British monarchs once again dressed in a hospital gown and waiting for my third endoscopy and second colonoscopy. It's no wonder why I feel I have post-traumatic stress disorder. Don't even get my started on the trip to hell and back when I went to see Dr. Satan in Iowa City. There are "triggers" that get my mind fixed on that nightmare, and I can't do anything to stop that. Don't get me wrong, there are a million positive blessings that came from my health journey, and I thank God for them all the time. Looking at the facts though, there are memories and aspects of my health journey that cause emotional distress when I dwell on them. I don't know what causes this or if it will ever go away, but I think of my health journey as an ever-present companion that I carry with me, for better and for worse.

Thanks for reading,
Sarah