There has been so many things that have happened since my last post ( I haven’t posted since April….its been pure insanity). I was able to spend some time thinking about what this blog means to me, what I want to share, and also some reflection of how much I have grown.
I started this blog in 2011, I was newly diagnosed with my Rheumatoid Arthritis and Lupus, and I was scared that I wouldn’t be able to live the life I wanted. Since that year, I have lived, I have completed things I never thought possible and I have invested in myself in many ways.
I have traveled the United States since my last post…most recently going to San Diego again. If you have never been, visit! It is a gorgeous city! Check my Instagram for some amazing pictures of the San Diego Zoo and Safari Park.
The end of June also marked the end to my second fiscal year in my Mary Kay business! I was so thrilled with what I accomplished. I didn’t hit every goal but that inspires and spurs me on to work harder on those goals this next year. I’ve not quite figured out what my goals are going to be this next year in my business, I have an idea though 🙂 That’s half the battle sometimes!
The summer will be crazy but I’m excited to see the need and the importance to carving out me time! 🙂 I encourage you, if you don’t have some “me time” set yourself up for some. Your emotions will thank you!
I’m off to play with the furry kids, the fireworks are starting and they hate the noise! More soon! 🙂
Sometimes it gets so old to say “the fight continues,” but it is so true! Sooo many days I wish I could wake up, and this whole autoimmune condition would be nothing more than a dream. But day after day, I realize this life I live isn’t a dream. Since 2009, this life has continued to teach me one thing – I am not in control. I am not in control of how I will feel each day, I am not in control of how much energy I will have, and I am not in control of how it will affect my emotionally and mental health.
One big thing I have noticed, consistent and continued pain affects your entire being….this includes your mental health. For some of us, this a big easier than for others….but it is an important concern to be discussed and brought to light for all of us.
In a great normal world our pain is temporary…..we have a small fight with an illness (I.e, cold, flu, etc.). Our bodies, mentally and physically, were not built to fight consistent daily pain….consistent daily fatigue. Our emotions were not built for that! And in fact, it isn’t a battle just for us, but it is a battle for our caregivers.
Often we discuss our lives, yes we are the ones who have to fight day after day….but stop for a moment and think of the wives, the husbands, the fathers, the mothers, the friends, etc. They do, our inner circle at least, have to learn to fight our battle too. And it is exhausting for them too! They too are in this battle in their unique way! The fight continues for them, just as it does for us.
While I haven’t been posting as much over the last year (for a variety of reasons), I felt that these words were important to share tonight. Fighting through tonight and into the morning!
The punching pain, the pounding headache, the nausea, the exhaustion – these things describe a “normal” day for many of us. This “normal” is something we know to expect every day, throughout the day. When you have constant consistent gut wrenching pain….excitement isn’t a word that comes to mind. By no means can anyone be excited for pain, fatigue, nausea, hair loss, diarrhea, and more. Here is one thing I have learned in my short, six year journey….we have to find something to be excited about in our lives. For many years that for me was my education. I LOVED getting ready for class, reading books, writing papers, sitting in a classroom. That was my excitement, my why, my reason to get up and put that smile on. Of course there are other things but that was one thing that really really impacted me. Now that of course has shifted, because school is over. But tonight I just felt that someone out there needed this tidbit….find a why! Lord knows the pain and all of it sucks. You feel lonely, no one can see the hurt and exhaustion, people don’t see how low it can be…people can’t imagine how awful every day is for your poor body. And while that’s not ok, and I wish it would change, for you….for you to reach your goals and forge through a live your life…..find your why! You have been created for an amazing reason, my faith brings constant reminder that I am not alone. God has a purpose for my life, he has a plan, he gives strength and a hope. I pray that over you tonight! Hold to my belief that God has a plan for you too! A plan to prosper you! A gift of his life, love, and mercy. Hang in there in this tough night! Keep pushing forward!
Have you ever tried to research biologic medicine??? It is insane that there are sooo many other there! I’m meeting my rheumy on Monday to discuss new options for me. I am a fail on Enbrel. I am hopeful there is one out there for me. I’ve asked for Orencia, my rheumy has suggested Rituxan. Ultimately I know it depends on insurance and co-pays. Any suggestions on navigating the rough waters of switching biologics?
Do you ever have those days that seem to start and end soo fast? Maybe it was just me but today flew by! It is nice to be home, and get things back into their “normal routine” before work starts back tomorrow. I love that I’m not dreading work, as in I love getting out of the house and being in the office. I know there will be a time where that won’t necessarily be what I do every day, but while I am doing that I will enjoy it. Granted, it would be awesome to sleep late 😛 .
I had a great conversation this weekend and I was spurred on to make some changes. That includes taking better care of my emotional, mental, and physical health. I am hoping to make some small daily changes AND develop new routines to take better care of myself on all fronts. I know there is a lot of out of my control with my RA,Lupus, COPD, etc. BUT I also know there is much much more I can do for myself!
Another new thing starting tonight, I have started a second blog! This blog is focused on one particular area of my life, and the second blog is the same but on a different aspect of my life. Part of having more time, is spending more time advocating and sharing what my life is like and things I have found that help me. And I also feel it is important to be open about this life (life with an invisible illness) and how things are different but yet still possible! I’ve mentioned on here several times that I have started my own direct sales business, yes I know I lot of people are doing them and that I find awesome. It is a challenge, it is new, and it takes walking through your fear sometimes to do it! Can you imagine doing one when you are struggling with an invisible illness? Just like I shared my journey through graduate and the doctoral program, I have been feeling that it is important to share how life is for someone like me (battling major autoimmune invisible illnesses) and growing a direct sales business. Maybe it will help someone out there 🙂 At least I can try! Never know about something until you try, so tonight I started my trying.
I’m excited to see what will happen in the days and weeks to come! Stay tuned 🙂
Life has the ups and downs. There are days that are great and days that are draining. I’ve seen a lot more draining days these past few weeks, but I also realize that through those draining days I’m finding strength I didn’t realize I had. I had a great conversation with a friend last night. And it made me think, some have asked…would you trade in the life you have right now with Rheumatoid Arthritis, Lupus, Fibromyalgia, Chronic Fatigue, and so on…for a life that didn’t have any of those problems. Granted seven years ago when I was struggling with my new diagnosis, I would have said heck yes! I want this GONE, totally GONE! And granted today, I do want it gone, I do want to wake up just one day with no pain, one day with no fatigue, one day with out the side effects of medications. BUT I also wonder…would I have the strength I have today? Would I have the determination I have today? Would I have the passion for people that I have today? The truth of the matter is probably not…and I say that because my life with RALF (as we like to call it) have molded me into the person I am today. Fighting through the sickness and fatigue to finish my masters and doctorate…that build determination in me. Pushing forward to raise awareness, opening my blog, and voicing my life so others can see what living life is about…that built determination in me. That built passion in me, and through that passion I have grown so much. I have opened a business for women and families, I have joined set goals to reach and dream about things I can do for others. I have developed a vision for what I want to see happen. Would I want a day where my illnesses are in remission, oh for sure. BUT I want to use my illnesses to be the person who can bring awareness and change. Awareness to these diseases is important, awareness to how life is with these diseases is important, and awareness that you CAN still do things is important. Life doesn’t have to stop, does it slow down….does it take longer to get to your goal because you are sick…maybe. Even this month, I had a goal of how I wanted to start the month of September with regards to my business. Did it happen no, but did I give up…most certainly not! I just shifted the date a bit. That’s the key, don’t give up because life gets tough. You just adjust, slow down, and keep going!
It is just part of life, life changes as we grow and mature! I have learned that this week, many thoughts have gone through my mind, the first of which….I’m glad that this week is over :). I have come close to many things, been in many different places, crossed three states and back, and I am happy that the journey is over. For this week anyway!
The why of my business changes, I have heard that over and over. This week my business took on a new why, a why that could move with me. I learned to I love I have a MK business to go bag :). I learned I can run my business from anywhere! I learned I am so happy I started my business nearly 7 months ago! I love what I have learned, the things I see now ever so clearly, and this journey. Some days I wonder how good I am at it, some days I wonder why? Am I doing this right? So many thoughts but this week, I love that I see so clearly that ups and downs, twists and turns are all part of life! And ultimately yes I am so happy! I can’t wait to see the future, I can’t wait to continue to grow. I can’t wait to see 5 years from now!
Off to play with my kids! These great inspirations kept me going this week! So I am sharing with you!
It is your time, your time to pick joy through the pain or the time to pick yourself off the ground and keep going even when every part of your body wants to stay sitting down. The ironic thing with the RA and Lupus (that so many don’t understand) is that no matter the rest my body never feels rested. The pain is high and steady. The never ending severe pain and fatigue puts me in the place often where it is my time to choose, do I stay in bed and call in or do I get up and push through. Do I stay in the house and shut myself away because I’m so fatigued or do I push myself out the door and talk to someone? Do I look for a good even when it doesn’t seem like there is a good?
I don’t know why this week I thought a lot about my late daddy. Maybe because it has been nearly 7 years since he died….maybe because there are still so many days that I wish he was still there. Who knows maybe it was because I’m a MK Foundation Ambassador and I am so thankful to be able to bring awareness to cancers that affect women. Or maybe it was because I just thought about my home a lot this week, my home as in home home. The little village at the top of a hill, nestled 5,000 ft up, on the El Salvadoranian/Honduran border. I miss the times when I was a kid…it seemed so easy then. But pain was still there! Pain still plagued me then.
I for sure though never thought I would be where I am today. I stopped today and realized when I was a 12 year old kid I remember walking through the dark streets of my village and vowing then to change the world. I told myself I wanted more! I never thought that almost 20 years later I would not be living in my country but I would be living in Houston, Texas. I wouldn’t have barely finished college but I would have finished a doctorate! Wow! I have electricity, running water, a car, and it doesn’t rain 6 months of the year! It is amazing how my determination in my time has led to the future I have now.
I know our worlds are different but I encourage you, take the time, push ahead. And know God has you! He has you in his mighty hands!
Joy, joy comes from an unbroken spirit! We fight so hard every day, sometimes just opening our eyes takes everything that we have. Sometimes the doctor appointments leave us more broken with less answers and less hope. Or at times our loved ones and friends leave us feeling at a loss, or with the feeling that this world doesn’t understand our world of chronic pain.
Sure we can describe our world! We can share how just one day is for us – the intense pain, the weakness in our hands, the complete loss of energy to just do the basics like get out of bed and brush our teeth, or even trying to get sleep. But truly our world is so hard to get because the bottom line is, we might look fine.
I’ve heard so many times in my life since my dx in my early 20’s……you look great today so you must be better! What the world fails to see is the true picture of me. The real me, the hurting me. I can count on one hand the people I’ve opened the door too, who get to see the real broken me. The person who cries at night because she can’t even open her toothpaste tub. The person who needs help getting dressed or showered. Yes that person exists, that person is me. The person who stared for two days at her pickle jar, because she was home alone and couldn’t open it. The person who wanted ketchup for her Mac and Cheese but whose hands couldn’t open the bottle. The person who has had to learn to be creative to open the Peanut Butter jar but who couldn’t get the jelly because she couldn’t get the lid off. Yes that’s me again!
But despite those things, despite the crappy hands, the never ending pain, I want to be joyful! Why? Because life is too short to let these thinfs (and much more) break the spirit of joy. There is good somewhere in the day, there is joy to bless one person every day (at least). That is a choice, many days a tough choice but I am glad every day I make the choice to smile, put on my face, get dressed, and push forward for my joy moment! It is just that a moment, a moment we might work all day to find, but when we do…it makes our day.
Awareness was on my heart this morning, find your joy moment today. Don’t give up, joy can be found today. “Seek and you SHALL find.”
Surround yourself with the positive you want to see in your life! That is one tidbit of knowledge I have realized and feel like it is important to share. No matter what your dreams are, no matter where you hope to go in life, you need to surround yourself with people who not only love you but support what you are seeking to do. Whenever you do anything new, be that a new diet, a move, a new job, or anything there will always be people who do not get where you are coming from. Some may feel that is all you do, all your conversations, all your time is whatever you are doing. Why is that? Well because you are excited about it, but they might not get that. My encouragement to you, is a) always surround yourself with those positive people who do get it, who are as excited as you are and b) to love and be patient with those who are not. Remember when someone is telling you no, that doesn’t necessarily mean (and many times they are not) they are telling you the person no. They are likely saying, no I really don’t want to go to the gym with you, no I really do not want to try that, or no I don’t think moving there is such a great idea. It doesn’t work for them, but there are literally thousands of people who it may work for, so don’t be discouraged. Never ever stop being that friend, above all be that friend. Be the friend, be the person who does love them not matter what, be the friend who does want to be there no matter what. That is my encouragement to you, because we are people, we are human, and we do feel things! 🙂
And that is especially true when we are living life as well as fighting our invisible illnesses. The word “invisible” says a lot. People don’t see it, and we all know that battle. We see the stories about this very thing over and over, but the awesome thing is, we also can have that community of people. I have been so so blessed to find some pretty awesome friends who know this battle. They lift me up, they encourage me, and I am so thankful for them. Truly the Lord knew we needed to cross paths!
So surround yourself with positive today, and every day!