GRATEFUL

Today as I wake up in moderate discomfort, I am at peace. My joints are aching and my back feels like it’s on fire. The morning is still and the house is quiet, as everyone is asleep. I’m laying here, reminded about how it’s important to pray to God about what you’re going through. I am reminded I am loved and worthy. This Earthly pain I’m experiencing is only temporary when looking at being able to spend eternity in Heaven. I’m grateful for God’s love and protection. Today would’ve been my Mimi Janet’s 74th earthly birthday. I am sad she isn’t here to celebrate with us, but I’m glad to know she is with God and giving Matthew a hard time. Christmas Day marks nine years since we’d last seen or heard from my oldest brother as he passed away later that evening in a motorcycle accident. I miss him terribly, but I know he isn’t experiencing any more earthly pain and discomfort. This Christmas season, I’m grateful for my family and my friends. I’m grateful that God’s Love is everlasting and doesn’t waver, even when we think He isn’t listening. Today, I am choosing to overlook my physical pain and illness and focus on the good. Family. Love. Laughter. Light.

Spread love and light this Christmas. 🎄❤️💋

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What We Wish You Knew About Behcet’s and Chronic Pain In General

Behcet’s Disease is a bitch. It’s unrelenting and hard to detect what your day-to-day life will be like. I’ve reached out to various Behcet’s sufferers who discuss what they wish others knew about living with a chronic condition.  I also reached out to chronic pain sufferers and never imagined I’d get this many responses. I’ve quoted individuals using their initials. 


“I think it is difficult for people to understand that this sort of disease is not something which will get better. Because of the pain we suffer, there are often no drugs which will stop it. This is an incurrable disease, and drugs we are prescribed only reduce the symptoms, not cure them. Often the drugs have unwanted side effects which cause even more problems. As for remaining positive during bouts of pain, I try to have small goals, something I am looking forward to in the not too distant future, and I hone in on this to distract me. The most important thing is not to let pain rule your life.” -SK
“I think it’s important for people to know that doctors know very little about this disease and often times are guessing and rolling the dice! So it’s not us making stuff up or looking for sympathy, it actually is that the doctors have no clue!” -RM

“I wish others, especially family or friends, would listen, understand, encourage, use compassion, be a cheerleader for us, know that there is NO WAY we can make any of our issues UP! In regards to maintaining positivity when I am in pain or just function daily, it is a Must do for Me! I will not do it any other way! I make a point of being positive. I do have a high tolerance to pain…I cannot take pain meds because they are not good for my kidneys. I already have stage 3 Chronic kidney disease. I do NOT want to go to Stage 4 or 5…not good!!! Somehow I manage! And, I am an Old youngster! I do go to counseling to learn more about daily processing and whatever else I must do to stay strong! Love and Hugs to all!!! ❤ Go Warriors!” -PH

“I wish people understood that despite me being “happy” and “positive” all of the time, I am actually in tons of pain and that if I don’t try my best to be happy and positive then the pain gets to me too much. I wish people understood that I get up and fight each day to better myself and overcome my illnesses and that I push myself further than I ever knew was possible each and every day just so that I can get done what they can do easily.” -CA

“I just wish they would be more understanding about fatigue and shit immune system as I get sick easily.” -JR

“I have a difficult time going out so I cancel a lot, but still want to be included so I keep hoping that one of the invites I will feel well enough to go.” -AA

“That just because you may not SEE my pain, believe me when I say that I am in excruciating pain.” -DWA

“I struggle to concentrate and I have mood swings. I have to miss school and fall behind.” -RT

“I wish others knew how much I need emotional support, and not just told be told to deal with it. I need a hug sometimes.” -SD


“My brain is full of thoughts, plans & energy to plan all of the good stuff, but I can’t do it! Just cleaning dishes hurt my arms so bad that I need to go to bed after, friends don’t understand, neither does family, I hate to say NO to my grandkids, but they are seeing me in pain a lot more now. As soon as they see me they ask “Nana, are you in pain today”? It’s heartbreaking.” -AP

“My life has been put on hold. Work is the only constant at the moment. Some say I’m lucky Cos I can still work. Rubbish, I’m a widow I have to work. I go to work come home get dinner for 2 others clean up and go to bed. That’s not a life.” -JC

“The emotional pain, others lack of knowledge with no interest of learning abandonment is the worst. I am alone.” -JH

“That some days, it’s really hard to accomplish anything. And those are usually high pain days. I don’t mean to snap and be nasty, the pain is just too much for me to deal with and trying to be social just stresses me.” -SL

“Depression…it’s thick and swims around my head. Giving me highs and lows but mostly lows…” -MT

“That it will never go away. And when I say am in pain. Wish the doctor’s knew we need our meds just because another people do wrong by there’s doesn’t mean we all do. We need our meds to help us deal with the pain. We have good days and bad days. One day we go out and pay for it for the next couple days. This pain is not fun.  There’s so much more I could say but it would be a Book.” -DO


“I would like people to know how hard it is to live with chronic pain and that I don’t choose to live like this and because of it I can’t be dependable because I never know when I’m going to have a flare up. I don’t choose to miss out on family get- togethers, events that are planned having to cancel last minute. I would want not to be judged but understood.” -DSP

I hurt… all day, everyday. Just because I’m not crying or complaining doesn’t mean I’m not. I’ve just learned that neither really does me any good and just makes the people around me miserable. And I’m one of the few that doesn’t believe misery loves company. I work really hard at putting on a brave and happy face for the people I love.” -RM

“I wish others understood the hopelessness of chronic pain: the knowledge that I’ll never feel better; I’ll never have energy. Others don’t want to hear about it, so I don’t talk about it; then they think I’m ok. I’m not ok. I’ll never be ok. Sometimes I just need to talk, and need someone to listen, and hug me.” -HH

Testing your faith in times of stress 

Lately, my mind and body has been under attack. I’m struggling with my body being in pain for longer periods than I’m used to. I’ve had a lot going on, which can exacerbate symptoms if the stress is severe. (It has been.) Sadly, this hasn’t been the first time I’ve lost myself in trying to please God and understand what’s in His plan for me and my family. I’ve realized it’s not me with the problem. I should be turning to the Lord when I’m struggling, instead of crying by myself. Over the last two weeks, I’ve cried and begged the Lord to hear me in my pleas to help me gain understanding. I had no idea, but He was working His magic at the exact same time. I don’t want to be in pain. But I know this is out of my control. I am grateful to have the life I live and the things that come with it. Learning to live with a chronic illness is and will always be a learning process. How does God play a role in this suffering?  He is using this pain for something greater in my life. He sees the potential of what I can achieve in his name and wants me to use my struggle to help others. God doesn’t want any of his children to have pain or to suffer, but you just have to remember He always has a greater purpose, even if you cannot see what it’s doing in your life yet. I won’t lie. I’ve had a hard time. I’ve questioned His plans. I found that His destiny will be something I can’t even imagine. I’m reaffirming my love and dedication, because in life, sometimes we fall off, and that’s okay. God still loves us. He wants what is best for us and for us to use our gifts in his name.  I am learning to cherish these life experiences because it is what makes me unique, even if it could be painful. I want to live an authentic life of using my voice and my gifts to fulfill God’s purpose. Bad days will not ruin what I’m working for. They are all too often but I can only visualize God’s will and what it means as I continue this journey. 

I wish I could give you my spoons. 

UPDATE 23 September 2017:  My mom’s kidney function is 100% normal and the pancreas is getting better every day! She is alert and just about back to her old self, so probably only a few more days in the hospital! God is SO good!! ❤️❤️

Original post (19 September 2017)

In the end of August, my mother who has Sjogrens disease, had to have her gallbladder out. She felt sooooo much better for a week post-op. This was followed by intense and horrible pain. She went to the ER at least five to six times in a WEEK because her pain was so awful. She said it rivaled giving birth to a child. She saw her surgeon and other doctors. She was misdiagnosed with kidney stones. They then found the actual root of the problem: she had a bile duct leak from the surgery. She had a stent placed to fix the leak. There is a one in ten chance she would develop Pancreatitis from this. She was admitted on Friday, 15th to hospital for that exact thing.  The next day, she was also diagnosed with renal failure. This was caused by the stent placement. 

Once the panaceas gets better, which it is, then the kidneys should begin to start functioning normally. 

Watching the person you love the most in the world go through so much pain and turn into a difficult person is heartbreaking. She is a ray of sunshine and laughter to anyone who knows her.  She’s had to hold my hand through countless procedures and trips to the ER. Now it’s my turn. (Even though she has told us to “get out of my personal space” which we all think is hilarious. 😂). We’ve both experienced chronic pain through the years and she’s going through a lot right now. I wish I could give her all of my “spoons” so she will be healthy again. This is my best friend. 

Summer Update

I Failed at Paleo diet. Not even mad. I just don’t have the time or energy to focus on it. I’m just watching what I eat closer and attempting to do better. 

My physical health has been so-so. I had my Botox injections in July and I got a really awful rebound painful migraine. The pain was unlike anything I’ve ever experienced, and I’ve experienced a lot of migraines. I was down for two weeks. I even went to my neurologist who gave me steroids to calm the flare. We think the Botox Dr may have hit a nerve or got too close or something. I also ended up going to the emergency room. They gave a lidacine swab which is the new thing to try. It didn’t work. I then got a cocktail to knock it out. That helped it. It was two weeks of hell. Now I’m still experiencing sharp pains in the back of my head. I am hoping it doesn’t last forever. 

I’ve started taking nine credit hours as a graduate student. Everything is going smoothly so far. 

Starting Autoimmune Paleo Diet

Saturday, July 8, 2017 I decided to change the way I’m eating and hopefully begin to see changes in my physical health. I have thought about this for months. I’ve agonized over this decision because I am scared of change. I want to feel better without doing the work. But I know it takes hard work and patience. Paleo cuts out the majority of what I normally eat: grains, gluten, dairy, etc. So I woke up determined. I drank water. I had chicken and fruit for lunch. I haven’t been feeling well since my Remicade infusion and napped through the afternoon. I woke up hungry, and with a killer headache, and thought “how am I going to do this? What am I going to eat if I am sick?” So I cheated and ate completely wrong. 
I’ve decided instead of cold turkey quit foods, I’m cutting out certain foods week by week until it’s complete. I think this would be the best way for me personally so I’m not overwhelmed. 

I can’t wait to go shopping and try some of these Paleo recipes! If you have any suggestions, please let me know! 
-Micah 

What are “spoons”? (Spoon Theory as related to chronic illness)

I should probably explain the spoon method that is why people call themselves “Spoonie”.

This is a term created by Christine Miserandino ( who has her own website, http://www.butyoudontlooksick.com). She explains that she was asked what it was like to be ill by a friend as they were dining. She grabs a spoon and explains, say you have x amount of energy for the day. Energy is a spoon, and each activity throughout the day will cost you some spoons. 

Ex: say you have 10 spoons for a day. You wake up and decide you need to shower. Depending on your pain level that day, it’ll cost you three spoons. You need to have breakfast. If you cook, that’s another two. Oh, you need to go out? How long will you be? Do you have enough energy to last the afternoon? That’ll be four spoons, please. What about when you come home and need to clean house or make dinner? You only have a few left. By the end of the day, you are OUT of spoons and may he paying for it tomorrow.  


This is all relative to those of us with chronic pain. We fatigue easily and finding ourselves pushing the limits of what we can do and having to rest the next day, or week. What we can do is plan for our activities and rest beforehand so as not to be as tired when we have to be active. 

I am not an expert, though I have been dealing with this for nine years now. Please refer to butyoudontlooksick.com for other resources. She’s awesome and very inspiring for those of us on this crazy journey of navigating a chronic condition.