How I Got To Where I Am

Looking back and thinking about when my health journey began and it’s honestly hard to remember. As long as I can remember I was always “that kid” who was sick & I never had perfect attendance due to illness. When did my health get really bad?!? Sometime during high school. I remember when I was fourteen I started having intense abdominal pain that no one could ever diagnose other than to say it was for sure not my appendix. Then in 2001 (my junior year) I got sick and was diagnosed Mono and it seemed like it was everlasting. It stuck around forever. Over six months in fact. Once I was diagnosed with Lupus the doctor said that the long lasting Mono was most likely my first lupus flare.

From 2001 let’s fast forward to 2011. Yes, that’s a big jump. But there was nothing big that happened health wise during that time. It was just more of the same. I was always sick and I continued to have the abdominal pain that no one could diagnose. Finally in the fall of 2011 I plead my case to my OBGYN and she agreed that it was time to go in and do a laparoscopic surgery to see if I had endometriosis and excise it all if I did Indeed have endometriosis. Well, the surgery showed that I did have endometriosis and she was able to take care of everything at the time of the surgery. So that helped immensely with the issue of the abdominal pain.

Now we will jump ahead a little further to Feb 2012 when everything went down hill. I was admitted to the hospital in February that year for a week for a respiratory infection that no doctor was actually able to diagnose or effectively treat. I ended up going home on HIGH doses of prednisone and had to take an entire Month off of work because no matter what I did, I couldn’t breath. At this time along with the breathing issues I also started having PAIN. Widespread pain. Pain like I have never experienced before. Pain that no one had an explanation for. So I couldn’t do much activity because I couldn’t breath, and everything hurt, and I was SO tired. This wasn’t run of the mill fatigue this was life changing fatigue. But no one seemed to me concerned. Sadly due to all those things combined I had to change my job at work and leave my charge nurse job on the post surgical heart and lung floor where I had been for 5 years since graduation. I had to quit a job, that I had not even started, that I was so so excited about. I had just been hired to teach clinical for a local nursing program, which had always been a dream of mine. And I had to drop out of the Masters of Nursing in Education Program that I was 8 weeks into. Because of my health.

Looking back I can that my hospitalization in Feb of 2013 was just the beginning of the decline in my health. That July, I was diagnosed with Systemic Lupus among other things. Though troubling and scary, it explained so much. It explained why I had been feeling the way I had and the symptoms I had that no one could ever figure out. Along with all the issues I had experienced over many previous years that didn’t seem big at the time but now all added up and made total sense. In the months and years following my Lupus diagnosis I have been diagnosed with so many other life altering conditions that made it hard to see any kind of future for myself. Just to name a few, I was diagnosed with Fibromyalgia, Endometriosis, Interstitial Cystitis and other chronic illnesses. Not to mention the migraines that years later morphed into hemiplegic migraines. And like i said above, after the Lupus diagnosis it became clear that I wasn’t going to be able physically to continue working as a nurse on the floor. I not only had to leave my job, I had to step down from my teaching position with the nursing program before I even started. And I had to drop out of the masters program that I had only just begun. To say the least I was crushed. I just couldn’t understand why God would allow these things to happen and what I had done to deserve so many trials.

At that time I honestly had a really hard time seeing past the actual diagnosis. I couldn’t understand why God would take away my ability to do the things I had always dreamed about. My job, furthering my education and the ability to have children. I mentioned earlier that I was diagnosed with endometriosis and sadly between the endometriosis and the lupus I will likely never be able to carry my own child. It would never be safe. That has probably been the hardest change for me to accept. I have dreamed, like many other ladies, about having my own babies since I was a kid myself. I had names picked out in my head and everything. And before anyone says anything, yes, I know there is adoption and other routes which I may look into at some point. But I have come to accept that the dream of actually carrying my own child will likely never happen.

In the months (and honestly even years) following my Lupus diagnosis I struggled. I struggled in pretty much every sense of the word. I struggled to find my place in my workplace. I also struggled to find my place in my relationships (family, friends, romantic) as I felt like nothing was the same even when others didn’t see it that way. Sadly, I lost friends and relationships that I thought would be lifelong all because of my health. These conditions are something I am going to be dealing with forever and can’t just walk away from and have had hard time accepting. And those people did the one thing I wished so much that I could do. They threw up there hands and walked away.

Probably around 9 months in I began to realize that something had to give. Something had to change. I couldn’t continue going at things the way I was because something had to give. So I searched for a place I could go for support. Someplace I could go and talk to others who were living through the same issues that I was. A place where I could go and openly express my feelings without being judged, a place where I could find information on the issues I was dealing with. I looked for local resources and online resources, but I couldn’t find a place where I really felt comfortable. After spending time searching, it became clear to me that I was supposed to create the place I had spent so much time looking for.

After I realized that I was supposed to create this place of solace and education that I had been looking for. After I finally came to the realization, I spent a lot of time researching support groups & educational groups. I wanted to find out what made these groups successful, and what made them flourish. So I did just that. I recruited a few of my fellow Lupies (aka someone with Lupus) -and friends to help me and we created a Lupus & Chronic Illness Support Group on Facebook. A group we call “Lupie Groupies.” We created a group where those dealing with chronic issues could go and be real and totally honest. A place where judging others for their thoughts and feelings is NOT allowed. A place for those who were newly diagnosed, as well as for those who have been diagnosed for decades and everyone in between. A place to find education on their conditions and as well as information on treatments.

At first we were a very small group of like 75 people, but over the last 4+ years we have grown to over 600 members. When I started this journey I would have never dreamed that I could develop a support group that would grow to be so big! I have received such amazing feedback over the last four years from people in this group. People telling me that the group has given them hope, and that they have made life long friends in the group.

The last two years have been incredibly trying as I had a seizure, totaled my car, lost my job and had to move back in with my parents. This was never where I thought my life would be but it is what it is. I’ve had my highs and very very many lows. But I feel so lucky enough to have this amazing blog as a source of outreach. I love that I have this platform to spread awareness and use it as an outlet for my feelings. Some people aren’t lucky enough to have one calling in life. But I feel so lucky that I got 2. The first was nursing and the second was my support group and my blog!

I know that makes no sense at all. But the last six years since my diagnosis hasn’t been all bad. I have found my tribe, those people in life that you know were meant to be there and will be there forever. And most of them, not all but most, are fellow spoonies. Because as much as I hate to admit it, friendship with a fellow Spoonie is just easier sometimes. Not only can I say that I am lucky enough to have found my tribe but I feel like I have been blessed with a second calling. I don’t feel like everyone is lucky enough to get one and somehow I got two. Well, maybe 1.5. I feel like I was supposed to get these conditions so I could use my medical background to teach, spread awareness and provide support to others in similar situations. And I love it!!! Do I wish I could make a little more income from it?!? Ya!!! But maybe someday!! Right now I just feel so blessed that I am able to take my horrible health and turn it into a positive. If someone would have told me this is where I would end up I would have laughed. But honestly I am pretty content. Do I miss work? Yes, yes, a million times yes! But I truly feel like I have found my calling! I was put where I am to be a resource, a friend, a blogger, a leader to those who are in similar places. I was put where I am for a reason and I have had to adjust to that and learn to live in that place.

With Love,

Amber

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