The last 21 months have been full of heartache, major changes, grief…and even the happiest moments of my life, all combined. I recently have found myself having an internal battle between grieving the woman I was before “I got sick” and finding my new place in this world. You see, before that dreaded day 21 months ago, I was not some extraordinary , famous, life saving woman; but I was a girl who took pride in my career as a nurse and business development and a mother of three who had never missed an event that they had. No, I was no super hero mother with zero flaws (I have too many to count) but I was determined from the day they were born to always be PRESENT.
Now Lupus is here, it’s here every day, every minute, every step, every decision…I am no longer allowed to just be normal. First it started with missing work for doctors appointments, tests, treatments and of course for days that I simply was unable to perform my job description…at the time I was a single mom and it felt like the more work I missed from being sick, the worse my symptoms would be ( stress is our enemy ) Next would be evenings after work that my oldest son would have a high school basketball game…are you kidding me? I’ve been in extreme pain since I woke up..fatigued to a level I can’t possibly describe to someone who doesn’t share this disease…and now I was going to have to place my aching body on a set of wooden bleachers until 9:30 pm…No, it’s not something I felt I could do but that place in my heart that promised myself I would always be present, just would not allow me to stay home. So for weeks I pushed and made myself make it through, and each time I was so thankful, as a mom there is not much better than watching your kids do something they love and work so hard at. So how did it happen that by the end of the season , this always present mom, had missed three games because my body just could not make it or i was receiving a treatment… That was hard! That will always be hard… no matter which kid, which event, missing due to my body not being able to function will NEVER GET EASY!
One year ago this month, my then fiance and I , determined that the career path I was on as a nurse and business development for a home health agency, was not conducive for reducing flares. So I became his nurse…I know, most would think that having a far less stressful job with not even a fraction of the hours involved would be fantastic…how could I grieve my old career that was so fast paced and tiresome to my now sick body? But for me, a very independent soul, a girl who aside from all of my numerous mistakes, had always worked and worked hard for what I was able to provide to my children..I felt as if I was having that taken from me by this awful disease. Yes, I am human and I very much love and appreciate the life my husband provides and the ability to work for him from home…its fabulous… but the timing occurred because of lupus..and that I struggled with.
So here we are a year later…my husband and kids were on the back porch talking about an upcoming family vacation while I was folding laundry..and I hear my husband say ” no guys, we can’t do that, your mom can’t climb that” …and my heart sank…seriously? Have I also lost the ability to go on an adventurous vacation with my family? You know, the kind teenage boys love..doing the touristy things like hiking a local trail..Just two summers ago I had hiked the Opal Lake trail in Colorado with them..and now I’m hearing ” your mom can’t do that”. For two days I let those words run circles in my head, words that my husband meant out of complete protection for me, out of wanting to only plan activities that we could all enjoy together …but for me , in my own self-pity and grief..I heard your mom isn’t capable of doing the things we can do, your mom isn’t the girl she used to be, your mom is keeping us from an adventure.
Those feelings have become rather common in my own head over the last 21 months…sure I’ve nodded my head at lupus and outwardly said that this awful disease would not control me, that it would not define me, and would not take my life…but on the inside I have been taking every innocently spoken word and letting it cripple my soul. All of this led to an emotional outburst yesterday where I cried and sobbed that ugly cry..we all know it,the one where you are crying and trying to talk at the same time..yes it was just a lovely sight, I’m sure. I told my husband how I felt ( how I have made myself feel) I feel like I have lost who I was, I feel like they don’t even know who I am. This is where every inch of my soul was completely reminded why even though the last 21 months have been full of illness..they have also been full of some of the greatest blessings in my entire life, marrying this great man. This man who sat there during my emotional outburst and listened ( when he could have been angry or annoyed ) and he challenged me to review the good and the bad…the recent days with my family and the previous ” healthy ” days…challenged me to realize my value, showed me my value. Lupus tried to take my identity , but my husband wouldn’t allow it. My point in all of this is that we shouldn’t allow Lupus, or any other disease to steal who we are or keep us from being who we want to be. I have a long ways to go to figure out exactly how to reclaim myself, but I have decided that from today forward I will not let it steal my joy and I wish the same for all of you.
Let me take a few minutes to introduce myself to you. I am a 34 year old woman who was diagnosed with Systemic Lupus and Antiphospholipid syndrome after waking up one morning in September of 2014 with total numbness down my right side, extreme fatigue and confusion. Like most patients with invisible illness/autoimmune disease, my quest for a diagnosis was not quick or easy. I went through several different symptom stages, flares, doctors who couldn't figure it out, doctors who wrote me off as being stressed, and even family members who tried to chalk it up to stress. Frustrating is the word that comes to mind, or shall I say, frustrating is just the tip of the iceberg of emotions . I am a nurse, mother of three fabulous children, and the wife of an amazing man who is my rock, my sanity, my comedian, and my cheerleader. Every day is a struggle, a choice , and a gift. I will be completely honest with everyone and say that I have gone through various stages of emotions since that morning, often repeating stages, and I want my fellow lupus warriors to know that its okay to cycle through emotions. I decided to start a blog when I became vocal about my illness to friends, co-workers, and on social media...several people reached out to me and suggested a blog and told me how much it was helping them to hear from me. So the big question was..what on earth could I blog about concerning lupus that there wasn't already an article out there? The smaller question was , do I want to focus my energy on the negative mundane lupus topics such as flares, medications, pain, effects of chronic illness on your family? No, I don't want to focus on all of those things, I want to help, I want to get back in the swing of life enjoying everything and every second regardless of my disease, and I want to help you do the same.
My husband and I love to travel and we do it often. This past December we went to The Bahamas and stayed at The Ocean Club, I went on and on to him about how fabulous the hair dryer was because it was so light that I could actually tolerate holding my arms up long enough and yet it dried my hair quickly and without frizz ( ladies, don't we all agree that hotel toiletries and accommodations are a big deal?!) When we were getting ready on our last night there, my husband said you should keep up with all of the different hair dryers we have when we travel and write about it...hmmmm good idea! So how does my hair dryer finding lead me to lupus friendly travels you ask, because we all want to enjoy our travels and we all want good hair and good skin and the ability to do the activities planned for our trip...but it effects the lupus patient so differently than others. So join me in our travels and in all of the things and places that we find who make for Lupus Friendly Travels! Lets get packing...