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Life with Lupus

In efforts to cope with this diagnosis, I started to journal (again). I tend to go in waves with writing. I'll love it and write in every pocket of free time, then just ... not, for months. I'm not sure if it's that way for everyone, but that's how it goes for me.


Sort of like praying, if I'm being honest.


I'll have conversations for days with God; in good times and bad. But there are days - weeks - months that I will go sometimes without knowing how to muster a "hello."


Thankfully, He is always there. Waiting for when I am ready.


Journals work like that, too; it's there, waiting to be written in once I find the words. Blogs aren't so much. People tend to move on once there isn't anything "new" or "riveting" after awhile.


Which is fine.


But, I have been asked so many questions about lupus; my diagnosis, feelings, family, that the only way I feel I can accurately answer them all is here.


In a blog.


For the ... third? Yeah, third time.


Life with Lupus.


I can't really even say it's much of a life at this point. I mean, I have my life and it's a damn good one, but I haven't really lived with lupus yet. It's only been a few days short of a month since diagnosis so I am still in the 5 stages of grief.


Grief. How can you grieve something like lupus? Why would you grieve lupus? What is there to even grieve about? After all "it could be worse."


While, yes, it can be worse, this still sucks. Point, blank. It does. I'll live a full life. I'll still get to see my children grow up (God willing), but not in the way I had envisioned it. But is it ever? God laughs.


I have to rest way more than I'm use to. I am not someone who does well with idle hands, I like to be busy. But lupus has forced me to stop and slow down. Not in a, "let me sit down and watch a TV show after bedtime," kind of way. It's a "I need to nap while the kids do and go to bed at 8pm while still drinking 200 mg of caffeine a day" kind of way.


I also can't exercise in the way I am use to. I was a collegiate athlete, I thrive off 2 workouts a day that bust me to damn near tears and experience performance growth. Not anymore, or at least not in the same way. Strength training isn't for weight PRs anymore; it's to just keep my hand strength up so I can hold my 1 year old at night.


I have picked up running, though. I am working with a run coach and she's helping guide me to longer distances. As long as my body allows it, I firmly believe I'll get that performance growth in a new way. I am determined to keep the competitiveness in me alive while pushing my body to operate at its highest ability - even if that is lower than it once was, I'll be damned if I allow myself to fall below full capabilities.


Emotionally, I think I am doing alright. I am on anxiety meds (who isn't?) which really does help. The funny thing is, my symptoms all grew exponentially worse around the time I had my medication increased from 5 mg to 10. The first doctor I saw thought the increase was what was causing the joint pain and fatigue so she backed me off to 5 again. Wrong-o. We (I) quickly put the kabosh on that and got me back up to 10mg. The pain only got worse and I was losing my grip on coping with it - not to mention, this was all happening while we were displaced because our roof caved in while we were still in side, so I guess you could say I had a lot on my plate at the time.


I remember asking my parents about joint pain saying I thought I had osteoarthritis. I could feel their confusion (their conviction of my losing grip on reality) vibing off their faces. I convinced myself I was overreacting and just carried on.


But my joint pain got stronger each passing day. My workouts were harder to complete. I was napping nearly every day because I just couldn't make it to bedtime otherwise, sucking down energize like it was a lifeline.


Once we got back to Iowa and we had to {literally} move back into our home and repaint every single wall and square inch of the ceiling things really flared up. I couldn't hold my fork at dinner at the end of the day. Dustin had to start bringing Maggie to me in bed because I was afraid I would drop her. I physically couldn't keep my eyes open past 8:00. I had next to no appetite and my hair was falling out in clumps.


I knew I needed to see a doctor; someone, anyone.


My OBGYN took the time to hear me out and referred me to a rheumatologist, but as life goes, he couldn't see me until end of October - 4 full weeks from scheduling. I was called back 4 days later by said rhematologist to go to the walk in, where the on-call doctor was brought up to speed on my symptoms, and I would begin a very long and stressful road to diagnosis.


Blood tests upon blood tests. Repeat visits to that on-call walk in doctor, communicating with my rheumatologist - who was outsourcing to other doctors to get input and opinions.


I ended up being told I had hyperthyroidism (which made sense, runs in the family) and I would start a medication that would help balance all of that out as well as a steroid to help with the joint pain.


Well, neither felt like they did anything. Still tired. Still in pain. Still losing my hair.


I was finally able to meet with my rheumatologist face to face, where he delivered the news that he, as well as a team of doctors in Iowa City, have concluded lupus and my care would be transferred to someone who specializes in such autoimmune diseases.


Diseases.


Makes one feel like they have the plague. Even if there is one going around, I didn't want to feel like I was diseased. ***I know I am not diseased, FYI. Just sucks to hear that word.


Anyway, I was looked dead in the eye and asked if I was understanding what he was saying. All I could say was, "Yep. Lupus. Can I go?" Clearly the words from someone who was not digesting the news. How could I, though? I had to go home and tell my entire family I have lupus. And then feed 3 tiny humans and put them to bed.


Because life didn't stop just because I got "bad" news. I had to digest and comprehend this life altering piece of information, while still doing my job as a mother as if nothing was wrong. So to say I was in denial, is an understatement.


That denial lasted until my next appointment where I was broken down all the new medications I have to be on while being informed I need an MRI. An MRI to make sure it wasn't MS, a mass, or deterioration - and if you're new here, those were all very likely options.


That's when I skipped to sadness. I swear to you over the course of the next few days, I played out every worst case scenario and it brought me to my knees in conversation with Jesus.


He pulled me up and helped me continue on, just as I needed.


Thankfully, the MRI came back clear. A small cyst that, as of today, doesn't warrant concern, but I follow up with my neurologist beginning of December to talk about (everything) and the scans.


Each day brings a new feeling, honestly. Some days are great and I feel like my "normal" self. Other days, I'm humbled; brought down to the realization my normal has changed.


But every day I have an outstanding support system; my husband is quite honestly one of the greatest humans to walk this earth, and my family has held my (figurative) hand through every step of the process. Not to forget to mention, God hasn't left my side; even when I can't find the words to talk to Him about it. He's there.


But, yeah. I guess that's where I'm at. How I'm doing. And how I am going about it. Writing. Praying. Moving. Learning. One day at a time.


When I gather the right words, I'll continue writing on here. Just my thoughts. Sort of like my journal - just not as personal, but not as professional - to keep everyone (who wants to know) in the loop.


Much love, your "lupie" (laugh - that was funny),

Samantha

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