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!
In my world of RA and Lupus not much has changed (hence the quietness) but the good news. After almost two years after I first heard of my biologic options, I finally was approved for Orencia. What a battle, but two shots down I have high hopes. My next two options are Rituxan and the new bio pill….but we hope that Orencia works!
The joys of tweaking medicine, methotrexate is staying. Much to my great dislike, I’ll keep my Orencia and MTX (at max dose), I had hoped to ditch mtx but that wasn’t the case. My rheumy is too afraid that Orencia alone won’t work so to save time lost, both are staying.
Other than that, things have been busy at the day job and my side job. I am amazed that it is December! I don’t know where the year went! It feels like the year flew by! I’ve started on my list of what I hope to see and do next year. I know MANY great things WILL happen!
Nope not quite 2016 yet but my sixth (6th) year of marriage had ended and my seventh (7th) has begun! We have also started our 10th year as being a couple! Hard to believe that for nearly 10 straight years my husband had been my constant. The person who has seen all the ups and downs with my diseases, has watched me graduate with not one, not two, but three degrees! My husband who is now working toward his educational career and dreams. And we are where we never thought we would be.
We talked this weekend about how much we have grown and changes. We have matured, we have seen the darkest of nights and some of the most joyous mornings. Will more come, yes I have no doubt…..especially with these diseases!
I am excited to see this new year! I’m excited to see what GOD will do this next year of marriage! I’m hopeful for even bigger and better things to praise God for! He is good and he is faithful, he will never leave us!
#ontoyearseven #mymarykaylife #positivethinking #determinedfigher #godisalwaysgoodandfaithful
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 🙂
September 2015 will be memorable for a lot of reasons! Life got insane truly insane. I have learned so much about myself and life. I’m caught a cold the last Monday of August I caught a cold….and I’m still dealing with the chest cold today! Crazy how our immune surpressed body struggles to heal! It is insane that a small cold can do so much to our body! After weeks of antibiotics, oral and injection steroids, and tons of cough/cold medicine I finally was given a COPD inhaler which is helping. For readers who have followed my blog from the very beginning you remember that I was hospitalized back in 2011. I was super sick and at that time my lungs were damaged. I didn’t expect the damage to go to COPD so fast, but I was told after multiple tests that I was in the last stage before COPD back at that time. The major infection I had then truly hurt my lung lining YAY darn body!
But in the whole picture of things, I’m choosing to focus on the good! I’m focusing on healing from this current illness and getting back on meds. As you can imagine a month of no meds, pain is super high. And I see my rheumy again on the 19th to discuss a change from Enbrel! I asked for Orencia and she countered with Rituxan. I am just hoping it is something that works! And since I did the TB cocktail last year I won’t have to wait for that again (I hope).
I am realizing how thankful I am to have school done! I look at my August and September and I don’t think I could have done school and life! I probably would have pushed hard to do it, and I would have probably survived but it was soooo nice to not have it! It was such a relief! Again, I realize God knows! He knew what I could handle when! My whole two years of the doc program, yes I added biologics and yes I did the TB cocktail, that was torture BUT overall I was on a maintence with doctors. I saw them every 3 months which was good helped me keep things going elsewhere. Was I sick? Oh yes! In pain? Most definitely but I wasn’t going to two or three doctors every week which has been my September!
I’m excited to see what October brings! I know there will be many gooood, no great things! With any bad in your life, you can either let it consume you or take it and let it change you for the better. This poor health, well poorer than my usual poor, will not be a negative it will a positive! A great change for me :).
Hugs and prayers XO
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!