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.
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.
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?
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.
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)
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.
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?