After Effects

I got 32 shots of Botox injections throughout my head/scalp and neck for my chronic migraines. The actual procedure went well, but I am extremely fatigued and sore. It’s almost like I got a rebound headache from it. What do you do to treat migraines? I’ve tried everything in the world. Botox seems to help for the most part and has given me some of my life back. It does stop working a few weeks before I am due for my next round, but it’s been so worth it.

Here’s my sleepy face selfie for your viewing pleasure. The second photo is a quote I thought was inspirational. We could all use some inspiration on this Monday evening.

I’m keeping this blog short because the brain fog is coming on. Hope everyone is doing well.

May 20th is Behçet’s Disease || ten years dx with this illness

Today is May 20, 2018. It is Behçet’s disease awareness day! Behçet’s disease is an autoimmune, inflammatory disease that affects the blood vessels and anything they come in contact with. This illness is called a “disease” but is not contagious nor is there a cure. It is very debilitating. The immune system attacks itself and I get ill very quickly and takes me longer to get well than the average heathy person. Behçet’s disease, BD for short, affects the eyes, joints, skin, as well as quality of life. Because of bd, I was diagnosed with chronic daily migraines, which I had been living with for years before I was diagnosed with bd. Uveitis (inflammation of the eye) if left untreated, or if severe, can lead to blindness. I have arthritis that is a daily struggle to move when first getting up in the morning or when I have done too much. This disease also includes debilitating chronic fatigue. I am tired 98% of the time. Even if I’m out enjoying myself, a lot of the time I’d rather be at home resting. Behçet’s disease is a hell of an illness. It takes so much out of me daily but has made me into in a stronger person. It has been ten years of tears, questioning God, and the unknown of what will be my future. There is no cure and research is limited because the disease is rare and not many people know of it or understand it. It has been extremely hard and difficult to come to terms with having a chronic illness but I have always tried to make the best of it. It has made my relationship with God so important to me. the last photo was taken on vacation after a very hard day filled with migraines, anxiety, and joint pain. It took so much out of me to just show up to dinner. Behçet’s disease is a complex illness and we deserve more awareness, treatment options, and a cure.

Having a “social life” while chronically ill

Yesterday, after my week of final exams, working, and looking at houses for rent, I was completely exhausted. I had a migraine from hell that would not leave me. My joints were aching. I was in bed and miserable for the majority of the day.  But I was also excited because we were driving to Tulsa, OK to see Justin Timberlake perform. How do you balance chronic fatigue/chronic pain with your busy social life? I had to make adjustments. My mom was sweet enough to style my makeup and hair so I didn’t have to waste energy doing it, and I cat-napped on the way there. I didn’t even feel like indulging in alcohol -(I have to REALLY be in the mood to need a drink because the consequences outweigh the benefits for me) – and for the fact that the concession by our seats had run out of beer just allowed me to continue sipping on water. When we CLIMBED up to our seats, finally and sat down, I was tired but exhilarated to see JT perform. My body was in pain from the trek around to our seating area and up, up, up to our seats. It was well-worth it. Justin was so phemonemial and entertaining! It was an awesome show.

I tried to enjoy the show as much as possible even though I honestly wasn’t feeling well and could’ve easily spent the evening in bed. I ignored my joints being tired and loved watching JT. It was something I will never forget. It is also something I’m paying for today, as too much activity leaves me drained in the following days. We didn’t get home until almost three am (I slept the whole way home, no surprise there!) and didn’t get out of my bed until almost 2:30pm. Having a meaningful life full of experiences when you are chronically ill means sometimes, you just gotta suck it up and pay for it later, which I’m definitely doing today. I really have to prioritize what my body can and can’t handle on a daily basis, which can fluantate from day to day. I was out with friends one evening? Doesn’t mean I can go out the next time. It makes me feel awful having to put my health above my friends and family, but sometimes it is much needed.

Spoonies: How do you recharge after you spend time out having fun?

Feeling Defeated

Do you ever feel like you aren’t good enough? You’re not doing well at your job, school is ever consuming you, friends are all doing their own thing, chronic illness kicking your ass making everything seem impossible?

How do we not allow the depression, the anxiety, the uncertainty, consume us to the point of despair?

I wish I had the answer, because right now I’m really struggling. I have had more bad pain days the last two weeks than good days. The only thing that is keeping me grounded right now is my belief in Jesus. He hears me and understands; He is my rock. His Grace and everlasting love is something I always treasure. It helps me when I’m having a difficult time. He does not allow us to go through trials in which we are not prepared for or incapable of surviving.

When I was very first diagnosed, almost TEN YEARS ago (wow! Doesn’t seem that long ago) I questioned why this was happening to me. I struggled far worse then with the depression of a new diagnosis and loss of my old life. But eventually, I understood what God was asking of me. He wants me to go through this to learn about how to help and inspire others.

I cannot lose sight of my goals. I want to be a Licensed Professional Counselor to help those who need someone to care and listen to them. I have always been an advocate for mental health awareness and stigma. I want to use my personal struggles to encourage others and also help those who need an ear.

Feeling defeated is easy. It’s what you do with that feeling and how you turn it into something positive that matters. I could say yes, I’ve laid in my bed for over a week because of pain, but I am going down that path to be ungrateful for my struggle. Recognizing you are struggling is important. If you need help, call a friend, a loved one, or if it’s an emergency, 911 may be beneficial.

There is power in your struggle. Don’t let it consume you to the point of negativity. Being a follower of Christ has greatly improved my life and encouraged me to write this post.

Praise and Joy

It can be difficult when you are chronically ill to be optimistic or positive about the challenges you face. I woke up today with some pain, but more than that, I woke up thankful. Thankful for a God who allows me to feel light and excited about the day. I woke up praising the Lord for his unique love and understanding. It can hard when we get stuck in despair when we feel so bogged down with pain and hopelessness. Being chronically ill can do that and more often that not, a lot of us become susceptible to depression. Personally, I wouldn’t be able to get through this hardship and pain with Him. It’s so important for me that I have that base of belief in good and that some of this is only temporary pain and hurt. Having faith and a relationship with the Lord has allowed me to have hope and joy in unsuspecting ways when it seems difficult to be happy. I am so excited to start my day and enjoy His love. I hope that today, you find something wonderful to be excited about.

Praise him—he is your God, and you have seen with your own eyes the great and astounding things that he has done for you. (Deuteronomy 10:21)

Continuing Grad school While Sick

In the second week of February, I become very ill. It started with a cough and later vomiting. I was diagnosed with the flu and bronchitis. Doctors thought I also had pneumonia, but were able to rule it out. I was severely ill for a week when my GP decided I needed to be admitted. I was in the hospital for three days. I was dehydrated and still experiencing flu symptoms. Doctors gave me antibiotics and I was starting to get better. During this, I took off work for two weeks (4 shifts); I missed two weeks of classes (M, TH) and the end of my weekend course while I was in hospital (F, S, S).

I am symptom-free now but unable to receive my Remicade infusion while I was ill, so it got rescheduled. I was supposed to have it three weeks ago, and I won’t receive it for two more weeks. I am every four weeks, so I will be going on nine weeks when I finally do get it. As well as recovering from being ill, I have became very fatigued in every aspect. I am finally catching up in my classes but the fatigue has been relentless. My brain fog has allowed me to get very distracted when I am needing to be working on an assignment or studying. I have a mouth full of ulcers and literally all I want to do is sleep, but I am using today to try to push through, be productive and hopefully have a good night with a friend. Chronic illness is no joke but not allowing myself to get completely run down and defeated is my goal. I am not letting illness and setbacks deter me from my goals of finishing the semester strong. I also want to have a social life, which sometimes takes a backseat to class or my health. I am continuing to be positive in light of my struggles.

Rare Disease Day 2018

February 28, 2018 is Rare Disease Day.

A rare disease affects more Americans than cancer, stroke, or heart problems combined.

A list of Rare Diseases can be found at rarediseases.org

This list is comprised of 7,000 rare diseases which affect 300 million people worldwide, but what makes the disease rare is there aren’t many people diagnosed with one specific disease, making it less common and unknown to providers.

This blog was started as a way to promote my journey with and feelings about Behcet’s Disease.

It is only fitting I discuss Rare Disease Day as it approaches. I love having the ability to use my social platform(s) to use my voice to talk about why this is important and how getting more people involved about any one rare disease is spreading awareness for rare diseases. Most, if not all, rare diseases and disorders do not have a cure because lack of knowledge, research, and funding.

So many people struggle in their daily lives to maintain a sense of normalcy while combatting an illness/Disease- one that possibly is invisible to others. We must care about one another. We must not pass judgement on others because we honestly don’t have any business doing so. We must advocate for those who are sick and need a voice. We all need a voice. We need support. We need research. We need A CURE.

Share with me what it’s like for you in your daily life with a rare disease. What inspires you to keep moving and gives you hope for a cure?

#raredisease

#rarediseaseday

#chronicillness

#behcets

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. 🎄❤️💋

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.