Nicole's Health Journey - The Prognosis

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If you missed the first part of my story: The Diagnosis - check it out here before you continue.

Sickness. Illness. Autoimmune Disease. For years, I found myself saying I feel as if I’m surrounded by people - all of whom I love - who are struck by sickness, illness or autoimmune disease. It’s as if I’m the only one not #blessed by a chronic illness. Well, I got my turn. 

I’m no stranger to autoimmune disease. My mom was diagnosed with rheumatoid arthritis when I was a sophomore in high school, and my husband was diagnosed with Crohn’s disease shortly after we were married. I’ve watched them both battle chronic pain, extensive fatigue, highs and lows, countless visits to the doctor…to the hospital, long lists of medications, side effects, trying new medications…the list continues. They were both able to lighten my mood in the hospital by chanting, “One of us! One of us!” in a Mighty Ducks sort of way to scrounge up some autoimmune team spirit. 

So there I was, diagnosed with this autoimmune disease and a new label for the rest of my life. The goal was remission since a cure is unknown. Remission is a fancy way to say that your body is less pissed off at itself for the time being. I’m a “spoonie” now - a nickname those with chronic diseases have given themselves based off of Christine Miserandino’s spoon theory from the book But You Don't Look Sick - it’s on my “to read” list. Basically, you get a certain number of “spoons” per day…spoons for day-to-day life and once you’re out, you’re out. You must rest until more spoons are restored. There's lots of "spoon" talk thrown around between me and my mom when we try to figure out what energy we have left for certain commitments. 

You Must Rest.

This is one of many lifestyle changes that were knocking very aggressively on my door with this diagnosis. I don’t like to rest. Sure, I like a massage or a few minutes to myself every now and then, but REST? No thanks. I’ve got people to please. I’m a 2 on the Enneagram in case you're an Enneagram nerd like me - that’s another topic for another day. My calendar for May 2017 was packed - prep as a volunteer at church, a Sseko trunk show, swim lessons for the girls, and on and on and on….I got home from the hospital and took angrily to my planner crossing off events and to-dos left and right. Gosh, I was so mad. I hated to cancel. I hated to let people down. I hated it more then, but I’m learning (very slowly) to accept that I cannot do all of the things for all of the people. This is huge shift in my mindset overall as a HUMAN - not just a wife, mom, daughter, friend, whatever…just as a human being on planet Earth. 

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I have some pretty fantastic people in my life who are teaching me, very patiently for the most part, to take time for myself. They’re teaching me to voice when I need help and when I need rest. This seems so foreign and selfish to me….but let me tell you, once you start, it’s hard to stop. Over the past 8 months (during the Prednisone taper from hell), my husband has basically forced me to take time at least every other week or once a month to visit a local spa for a Reiki treatment. Reiki is an energy treatment meant to promote healing within my body. Reiki is so restorative and energizing to me, that he has time and time again pushed me to pause and pour into myself. A well-energized and rested me is better for everyone, right? It makes so much sense but is so hard to put into action. 

I’m STILL learning how to rest and how to take time for myself. My calendar fills up and sometimes, I have to take that pen and scratch off commitments. I do it a little less angrily now. My main goal is to be much more mindful of commitments made up front. I’m learning to listen to my body and lean in to what it’s telling me. Sometimes it’s telling me I need more water (duh, always.), maybe more sleep (again, always.) or maybe a date with my husband (ABSOLUTELY always.). I’m sad it took a hospital stay and a chronic illness to bring me to this point, but I’m grateful I’m here and learning.

YOU MUST GO TO LOTS OF DOCS & TAKE LOTS OF MEDS.

This lifestyle change came in like a freight train, and I’m having a hard time swallowing this pill…pun intended. Pre-diagnosis, I avoided the doctor at all costs…which is probably why I ended up with such a dramatic diagnosis story: ER clinic, shingles, ambulance, all of it. I thought I was invincible. Mama can’t get sick, right? No way - there’s no time for doc appointments unless it’s a visit to the midwife during pregnancy. Well, Mama was SICK, and now she must go to all the doctors and take all the medicines. Cue pity party. 

After I left the hospital, I had a weekly visit to the hospital for the next 3 weeks to have these infusions with maintenance doses looming every 6 months. I also had a standing appointment with a nephrologist (fancy name for a kidney doctor) every 2-3 weeks for blood work and then a follow-up visit to go over the results. I had to remember to take my pills every day at the same time of day: blood pressure pills and steroid pills (a whopping 50 mg of steroid pill). I couldn’t (and still struggle now) even remember to drink WATER. How am I supposed to remember to take meds? Overwhelming and frustrating. Two words that summed it up for me then and continue to for me now. 

One the worst parts of these doc visits and infusion appointments was leaving my girls over and over again…I had just been in the hospital for a week basically and now, I’m leaving what felt like every 5 minutes to see a doctor. My support system is excellent and between family and friends, they were always SO well taken care of, but leaving was and is so hard. Particularly when you feel so broken. I hated for them to know I was sick - to see me weak. Now, I’m learning it’s good for them to see me sick and weak and watch me fight back to be well and stronger than before. Or at least that’s what I tell myself when I have to leave (even now) for appointments that seem to never end. 

And just to add another twist to the story…and another medication and list of doctors, about 3 months into my diagnosis and treatment, I came down with PCP: Pneumocystis pneumonia. Neat, right? I knew something was way wrong when I couldn’t walk to the mailbox without huffing and puffing like I’d run 5 miles at a sprint and that it felt like I was drowning when I bent over to pick up toys off the floor. 

PCP is a fungal pneumonia that likes to take advantage of people with weak immune systems like me. It’s called an “opportunistic infection” - so my lungs were the opportunity seized this time. The survival rates aren’t awesome here, but since I’m fairly young and my lungs were healthy to begin with, the damage was minimal to my lungs, and my body reacted well to the treatment….except for the random ER trip I took for almost blacking out at lunch with my parents. That was fun - thanks, high dose steroids. 

If it’s not apparent, my disdain for steroids is strong. They served their anti-inflammatory purpose with my disease and pneumonia but they also brought on a host of other side effects: pounding heart (like hurts so bad you think your heart is going to burst), sleepless nights (stayed up ALL night long binge watching a series until the sun came up without even a wink of sleep….), MOOD SWINGS (ask my husband, children and family about this one), shaky shaky shaky hands and the lovely, lovely transformation (see my photos below) from my "normal" face to the "moon" face which happened in a matter of months. The taper has been just as bad as the initial high doses, but I am currently Prednisone free, people. I’m. Ecstatic. I’m also very determined I won’t ever have to take them again, but I can’t be guaranteed that in the case of a flare…it’s the first quick acting line of defense for autoimmune flares - for now!

So back to the delightful fungal pneumonia. This required visits to a pulmonologist (fancy name for lung doctor) and visits for x-rays and scans to check on my lung tissue which led to a visit to the hospital for a bronchoscopy. All results showed some mild PCP in the early stages but still significant enough to require treatment, which is high dose steroids (yay.) and HEAVY antibiotics (double yay.). I had already started to taper my Prednisone so to jump back up to my original dose was so frustrating and did a number for my body (like the black out spell). 

Now I’ve got: a nephrologist, and a pulmonologist. Around this time, my husband (who is an avid researcher and advocate for my health) found Vasculitis specialists at the Cleveland Clinic in Ohio and insisted we try to go there. I was not on board at first. This seemed silly and way overkill. I had doctors here and didn’t need one more on my list. He was persistent, and we made an appointment for mid-September, smack in the middle of both of our babies’ birthdays. He planned out a big road trip for us sans kiddos, and we made an event out of that first visit. It should be noted, he doesn’t fly, which is why we road tripped it - it was a LOT of miles but also provided for a LOT of kid-free dedicated talk time in the car. It was like a 6 day date! We took just about 3 photos together to document our journey, mostly because this was right around the peak of my "moon face" - see exhibits A and B below. 

I was SO hesitant about Cleveland Clinic, but I am infinitely grateful Scott pushed us to meet with Dr. Villa-Forte. She has been the biggest help throughout this process. She studies, researches and sees Wegener’s patients in action every day. She’s at the forefront of new information and new treatments, and I feel like we found a gem in her. Dr. Villa-Forte took one look at my records and my nose and gave me the Wegner’s label. I felt instant relief which is weird when you hear this kind of news. The vague diagnosis I was originally given in the hospital left me feeling uncertain and like I didn’t really fit in any sort of group - it was hard to explain and hard to find people like me. 

I ended up having some issues with my original kidney doc because he didn’t see eye-to-eye with the Cleveland Clinic’s opinion on the Wegener’s diagnosis. He was planning to keep me on low dose steroids long-term (BOOOO!) and stop the infusion treatments after two years. Dr. Villa-Forte basically said, “NOPE”. She said the rate of relapse for this disease is HIGH and once you relapse, it’s hard to break the cycle. Her plan is to take me off steroids completely (YAY!) and continue the infusions every 6 months indefinitely. I’m torn because I don’t love the infusion situation, but I also want to avoid a relapse at all costs and keep the disease from attacking any other parts of my body. 

YOU MUST TAKE CARE OF YOURSELF.

Our bodies are incredible. They can do unbelievable things. They will also tell you exactly what they need if you’re willing to listen. And if you’re not, if you try to do too many things without rest, they will absolutely shut down to get what they need.
— Girl, Wash Your Face, p. 16

Well, shoot. Mama’s got all kinds of other people and things to take of first - ain’t no mama got time to take care of herself. Yet, here I am. I just wrapped up an excellent read by Rachel Hollis, Girl, Wash Your Face, in which she shares this quote to the right. A- to the -MEN. I’ve learned this over the past year. It’s been a hard hard lesson. I MUST take my pills every day. I MUST make and follow through with bazillions of doctor appointments. I MUST get rest. I MUST lower my stress levels. I MUST drink water. (Why is that one SO hard?!) I MUST take care of myself. Because if I don’t, my body is going to smack me back to reality real quick. 

Part of taking care of myself involves cooperating with the doctors by taking the medicines, making the appointments and remembering to take the bazillion supplements my Infectious Disease Doctor gives me. Oh, wait. I left him out of the list above - he's been added since the fungal pneumonia situation. So, as much as I view all of these visits, prescriptions and other medical requirements as a huge pain in the rear, I know it's what i MUST do right now to keep my kidneys intact. The good news is, I'M STEROID FREE! Oops - I already said that - that's just how excited I am for this milestone.  

After the initial angry calendar crossing-off event post-hospital visit, I’ve encountered other times where I’ve had to “cross off” things. For example, taking my kids to the pool solo. I could NOT handle that last summer. I couldn’t do it. I tried once and left so grumpy, so stressed and so distraught that I vowed “never again!”. But THIS summer, I’ve had the brain space to handle it - and yes, my kids are older, so that helps. But I’m learning, little by little to evaluate if Mama can handle it. And there are times, even this summer where I’m stronger than last, that I’ve had to say “nope, not happening” to pool time or whatever it may be because I won’t be able to handle it. This may seem so basic to some, but it’s a whole new world for me. I’m learning to embrace it and love it.

YOU MUST FIGURE OUT IF YOU’RE DONE HAVING KIDS. 

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*BIG FAT SIGH* This one has been tough. We have two beautiful girls who give me life - they also frustrate the heck out of me, but that's what happens with people you love fiercely. Scott and I had been on the fence about adding another to our family unit. We had a name picked out for a boy (We'd already exhausted our girl name choices, so we were in trouble if 3 girls were in the future!) - maybe we could handle one more? We'd go back-and-forth. We really weren't sure it was a smart move for us, considering Scott battles an autoimmune disease daily, and stress plays a huge role in keeping flares at bay. It's one thing when it's a topic of conversation with your husband, but it's quite another when your doctor pretty much tells you more kids should not be in your game plan. It was somewhat of a relief. It had been decided. It was not up to us. But it was also very deeply saddening. It was the loss of a potential dream - a what if.

My doctor at the Cleveland Clinic was a bit more open to the idea, but it would require going off treatment for a time to be able to "detox" from the infusion medications (around 6 to 9 months) and then trying to get pregnant, carrying a baby, having a baby and nursing a baby. That's a long time without treatment for a relapsing disease. Scott and I both feel it's best to focus on the beautiful girls we DO have and keeping me healthy so I can be the best mama for them. When I think of it THAT way, it's easy. When I catch a glimpse of my baby sling hanging in my closet or see a fresh babe out in the wild, I feel my heart drop at the realization that the newborn season is done for me. This lifestyle change is a process, as are the others, but this one has involved quite a few more tears and emotions. 

It's a Process

So this is new life for me: medications, doc visits, more rest, less stress, Reiki, maybe dabbling in CBD oil...I can explain that one later, too….and I’m beginning to be okay with it. I still have moments of meltdown and sheer frustration from dealing with doctors’ offices, fax numbers, medical records and a billion and one trips to Walgreens (Hallelujah for the drive-through!), but I’ll get there. My mom, Scott and Kara keep reminding me it won’t always be this way. They've been down this road before, so I take comfort in hearing that from those who’ve been there, too. The best news I remind myself of at the end of the day, is that I'm currently in REMISSION, and my biggest job for my body is to keep it that way. Here's to doing my best!