Lupus Awareness

One Day I Got Sick…

[The shortened ‘cliff note’ version ha]

Looking back at my life prior to that fateful day I woke up sick in September 2015, I like to believe I had been fairly healthy. I could have exercised more and eaten healthier, but then again doesn’t that go for everyone? I was healthy according to my doctor, and for me that was good enough. I shrugged off the continual body aches to just lack of sleep and lack of sleep on a good mattress.

Fast forward to the end of my third trimester in June 2014, and my blood pressure began to slowly climb upwards. And continued to do so up until my six-week postpartum visit. However my doctors shrugged both that and my unusual abdominal cramping I’d been having also, as just my body returning to normal. A phrase I would hear a lot over the next FEW months. Now I’ll be the first to admit, that I don’t always listen to my body when it’s clearly calling out in distress, but this time I just knew something was wrong. So I switched doctors only to be told the same thing ‘its just my body adjusting.’ A few more months passed, finally my blood pressure began to drop but the cramping continued. Luckily it was about time for a visit with my lady doctor and so I brought it up in hopes of a new answer. And she indeed gave me.

Pelvic floor spasms. And referred me to physical therapy… (Which was a total waste of time, all we accomplished at PT was making me cry in extreme pain and how to breathe through it. I went once and once only.)

A few weeks later, I went on what I consider my annual pilgrimage to DC. I have made this trip numerous of times and not once has all the walking bothered me… until this trip. Just hours after we had started out, my legs began cramping. Like usual, I shrugged it off to just the wrong shoes, and kept on going. Until I literally collapsed on the sidewalk, where my friend stood there like a deer caught in the headlights– but that is a story all its own– until I asked for help up. Now I’ve had muscle cramps before and a day later I’m fine and dandy. It took me nearly a WEEK to recover. Another few weeks passed, and I began to notice that my legs and ankles were beginning to swell over the course of the day. In true form, I shrugged it off ignoring my body’s blatant distress calls. And then one day, I woke up swollen from head to toe… looking like Violet Beauregard from Willy Wonka.

Thankfully my doctor was able to see me that day, because when I went in my blood pressure was nearly STROKE LEVEL.. to make it worse, he had no idea what could have been the cause. After labs, he sent me home to wait the weekend to find out if it was a miscarriage or something worse.

I ABSOLUTELY HATE THE WAITING GAME. Patience is not my forte. I like to have answers immediately otherwise I overthink and assume the worse. 

It wasn’t a miscarriage thankfully… but the cause still remained unknown. More labs were scheduled and I was prescribed medicine to help reduce the swelling. Oh and more waiting. Over the course of the next few weeks, we had yet to find an answer and due to water retention I had gained about 30lbs. I was miserable. It got to the point where I had to take an indefinite leave of absence from work. Finally after what seemed like a lifetime, we finally got an answer.

“You have Lupus,” my doctor told me over the phone.

‘Well at least it’s not cancer,’ I thought to myself. 

I had NO idea what Lupus was when my doctor told me. But it wasn’t cancer so I felt somewhat relieved. After an all too quick explanation of what it was, and how my doctor was referring me to a specialist, whom I was under the impression would prescribe me some medicine and I’d be on my way, I did what everyone does after the doctor tells them something. I googled it.

Big. Huge. Mistake!

Dr Google basically told me I was going to die. And so I began to prepare for the worse. Thankfully that wasn’t the case when we met with the specialist.

Dr. B we will call him because I will refer to him a lot. Fun little story to add about my first meeting with him. I had no idea how to pronounce his name, had no idea if he was a man or a woman, all I knew was that the name was Indian, and I was silently praying that I would be able to understand him or her. I have had foreign doctors before and it was no picnic. Let me tell you, he is the best doctor I have ever had. Right from the start he made jokes to make me feel more comfortable, and explained everything in human speak- not doctor garble. He better explained what Lupus was– An autoimmune disease, where basically my body sees itself as a virus and is attacking itself. And that my particular case Lupus Nephritis meant my body was mostly targeting my kidneys, which was causing the swelling/water retention. He said a biopsy was mandatory because I was in a bad state. We left that appointment and headed straight to the hospital to prep for a biopsy the following Monday. I love how every-time I needed answers we were always scheduled on a Friday. ALWAYS. 

Thanks to Dr Google, I knew briefly of what a biopsy would consist of, and felt slightly better going into it that Monday morning. It was an all day event, which included my nurse cursing as she stood over me with the needle in hand– as if I wasn’t stressed out enough right. Luckily she ONLY spilled the whole vial of blood she had just spent 20 minutes trying to get because my arms at this point where so bad from the constant poking and prodding of lab work for a month. I got unbelievably anxious when it was time to go in for the biopsy, finding out that my husband wouldn’t be able to go with me. He says it took over an hour, to me it felt like a few minutes. I apparently even told him afterwards that the male nurse tried to look down my gown while helping me back on the stretcher but I told him I was married… but I have ZERO knowledge of this tidbit. Drugs do that to you post-surgery.

We left the hospital and had to wait a full week to get the results back. They were bad as Dr B had suspected. He instructed that I was going to have to get a Prednisone jump kick to get my immune system going again. When he told me this, he made it seem like it would be a shot, in and out. I arrived to find out it was a 2-3 hour IV drip for the next THREE DAYS. I was not a happy camper. By the end of this week I was covered in bruises from having so much blood drawn and IVs inserted everywhere. I was like the poster child for abuse.

It was Halloween 2015 by the time I’d been given my full diagnosis and medicine regime. I was miserable from the weight gain, the diagnosis, and general feeling of helplessness. All the medicine didn’t help my case either since it was making sick… and did I mention it was the start of the holiday season? My body couldn’t have picked a worse time to get sick.

November came and went, without much change. The only good news is that I lost a considerable amount of weight since I was unable to keep anything down because of the medicine. I began to feel a bit better close to Thanksgiving, and was optimistic that I would be able to enjoy the festivities. My body had other plans and I spent Thanksgiving curled up around the toilet. I cried. A lot. I hated that being sick was forcing me to miss out on so many things.

December started and I still wasn’t feeling to good. My guilt that I was depriving my daughter of holiday fun started to get to me. My depression crept back and I spent a lot of time crying, wishing I hadn’t gotten sick. This illness was slowly taking over my life in the worse way possible. Thankfully as Christmas neared, my body finally adjusted to the medicine and I was able to go back to a somewhat normal life. As normal of a life as one can have taking a dozen different medicines a day. I made it through Christmas and the New Year, without much chaos.

I started 2016 feeling the best I had I felt since first getting sick. Unfortunately, the weight gain returned but that’s what happens when you’re on Prednisone. My doctor cleared me to return to work, after being out since the end of September! I had to work less but I was okay with that. I was beginning to get stir crazy and that feeling of worthlessness was returning since I wasn’t able to contribute to our income. I have crazy guilt in case you couldn’t tell. I thought things were going well, until I noticed that my hair was beginning to fall out in clumps. Thanks to my good friend Prednisone. In a state of frustration, I took a pair of scissors to my hair and chopped away. Forcing me to seek comfortable behind wigs. I know that hair doesn’t make a person, but when its one of the few things you still have control over when you’re sick you cling to it. 

The next couple months went by relatively smoothly. I was slowly adjusting to my new normal, as was the rest of my family. Occasionally, I had really bad days where unsuspecting symptoms hit me out of nowhere and I had no idea how to handle them. By April I decided to test my luck and do a 5K… Well I completed it entirely by walking in less than a hour. But I definitely felt the effects for days later.

But come May my body decided that I had had enough good days, and blessed me with Shingles. Adult chicken pox. It was pure agony for over a month! Between the itching and the pain, it was the worse birthday/anniversary gift I could ask for. Nevermind the fact that the itching and pain would linger for months to come.  Thankfully however after that, my body decided to chill out and only give me minor bad days.

Fast forward to the one year anniversary in October 2016 of my diagnosis, I had adjusted decently to life with a chronic illness. I was able to spot triggers for flares, usually. My body was tolerating the medicine. Even my daughter had now gotten used to asking if I was okay or realizing I was having a rough day– which in itself is another post! The holidays went smoothly, no sickness and lots of festivities to make up for the previous year.

And now here we are, nearly April 2017. Knock on wood, I’ve been having mostly good days. Tolerable pain as always, which is now my new normal. Which I never thought I would consider normal. Pain that is either tolerable or intolerable, never a full day without. My medicine regime is still about a dozen different pills a day to keep me living this somewhat functional normal life. Currently there is no cure, but fingers crossed some medicines in its clinical trials continue to do well and maybe by this time next year I’ll only have to take ONE pill a day instead of a dozen.

It’s definitely taken a toll on every aspect of my life, which I plan to share in later posts. And even now over a year later, some days I still find myself in shock that one day I woke up sick and never got better. I have my good days, and I try to take full advantage of them mostly for my daughter, even if it means regretting it a few days later when my body catches up. And I still have bad days, where I cry and hate that I got sick, and wonder what I did to deserve this. It’s a day to day struggle, just like my battle with depression. I just try to focus on the rainbow after the storm.

So that’s my diagnosis story in a nutshell. And now that that’s out of the way, I can get on with the more fun writing. Life with this illness… and actual stories I’ve worked on… I can say the only good thing to come from getting sick was making me rediscover my love of writing and reading. *I was going to add some pictures of my journey up until this point, but I’m feeling super lazy so maybe I’ll edit this later.


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