All the pieces of the puzzle
What hit me like a ton of bricks in May 2017 via shingles had apparently been simmering in my body for around 10 years…maybe longer. As we researched Wegener’s and what it can do to your body, pieces of the puzzle started to fit together. I hadn’t been bed-ridden or deathly ill for years, but looking back, there were a multitude of things that weren’t quite right throughout my teen and young adult life.
Where do I begin with this little nose of mine? We’ve been through some stuff. Is that weird to say about your nose? I distinctly remember the moment when I figured out something was “wrong” with my nose. A fellow freshman classmate, basically called me out and said my nose was “really flat”. I remember thinking….”WHAT?” I started to pay more attention to my nose versus other peoples’ noses, and yeah, mine was kinda different. I could literally flatten it with the palm of my hand with no pain. You could have punched me square in the nose without causing any damage. The picture to the right is from 5th grade to give you some reference of what it looked like before my freshman year of high school - it had more definition and structure. I also had severe “allergy” problems. I could never properly breathe through my nose, but we saw doctors who chalked it up to allergies and put me on a cocktail of meds to help. The only thing that ever helped was Afrin - which I had to be weaned off of due to a slight Afrin addiction. Whoops.
Oh, hey, young'uns! That's me and Scott - I was a sophomore and he was a senior - picture for nostalgia and also so you can see how my nose flattened out and had become less defined. The sinus issue never improved - no amount of allergy meds touched the problem. We moved on to an ENT - recommended to us by my fiancé at the time and husband now. He had a bad accident involving his nose as a toddler and had to have multiple nose surgeries. The ENT took one look up my nose and couldn’t believe I’d been able to breathe out of it all these years. Ah ha! Answers at last! I had a deviated septum and needed nasal reconstruction ASAP. The ASAP was more that I needed it done before my wedding in the not too distant future.
The rhinoplasty came and went. They biopsied tissue in my nose because they said it was “mush”. LOVELY. Nothing abnormal showed up, but I’d love to go uncover those records now and see if they even tested for Wegener’s. Maybe yes, maybe no.. I recovered pretty well. Rhinoplasty sucks, people. Lots of pain, lots of bruising, lots of swelling, BUT I could BREATHE finally! I had to use these disgusting nasal rinses every so often to keep things clean and healthy. These pictures are from my wedding in January 2009. I thought the swelling had gone down and this would be my new nose normal, but looking back on almost TEN years ago (!!!), I can see my nose was still very swollen post-surgery.
Fast forward a couple of years and my little rhinoplastied (the computer does NOT want that to be a word) nose started to change its shape. It’s also producing crazy crazy amounts of what can only be described as “mucus plaques”. I’ll spare you the hideous details, but let’s just say, sometimes you could smell my nose…it makes me shudder to even type that. Ew, but real life. I’ve learned that this is called “crusting” - delightful. I rinsed and did what I could, but I just felt like it wasn't quite normal. I also started to encounter some heavy nosebleeds from time to time. I had to go in at one point to have my nose cauterized to stop the bleeding from a particularly bad episode.
A couple of years ago, my mom looked at me and asked, “Do you think your nose has fallen?” I'm sorry…what? That's not really a question I expected or wanted to hear, but yeah, now that you mention it, it’s changing shape. She urged me to see the ENT, so I eventually did…like 6 months later. He removed some of the lovely “crusts” (ew, again.) from my nasal passages and sent them off for a culture. I could tell he was even confused by these anomalies. I asked if it were possible for my nose to fall or change shape, and he was a little non-committal about the answer. About a week after my Wegener's diagnosis, I had a flashback to this specific ENT appointment where I remember him saying they could test me for a very rare disease called Wegener’s, but it requires a biopsy and he’s pretty sure it’s not that. JAW. DROP. I remember I brushed off that suggestion in the room because who wants to willingly go through a biopsy for something that's probably not there?
My Blood Pressure
Let’s throw this WAY back to my first ever visit to the lady doctor (dun-dun-dun). I scheduled it with my roomie/sister friend on the same day so we could go together in solidarity. We were both getting married in the next year or so, and we were told to go see the lady doc for a check-up and some birth control. Yay.
I was nervous as all get out, and of course, the first thing they did in that room was take my blood pressure. Mine was apparently off the charts. So she took it again….still off the charts. I informed the nurse just how nervous I was. Which…I wish I could go back and hug my 20 year old self and inform her that this was NOTHING compared to the child-bearing situations to come. The sweet OBGYN did not like my super high blood pressure so she sent me for a KIDNEY ULTRASOUND a few days later. It came back unimpressive, but she told me to “water my kidneys” - basically, I was dehydrated or so we all thought.
Fast forward to my first pregnancy with my oldest kiddo. I was at the OBGYN’s office for my blood sugar test, and for the love, that super sweet drink is so nasty. I love that they tell pregnant women to avoid all kinds of potentially harmful substances then demand they chug a bottle of chemical cocktail food coloring sugar water in a record number of minutes. It’s gross. But I digress. So, I chugged the swill and was sent upstairs for my appointment where they took my blood pressure. And guess what? It’s super high! They sent me on my way to my appointment. During the blood draw for the glucose test, the phlebotomist (I just really wanted to type that word.) received a call from my doc asking me to go back upstairs. They wanted to re-take my blood pressure…which was still high. They then proceeded to give me crackers, juice and a magazine and asked me to sit in a chair for 30 minutes so they could take it again. The nurse launched all kinds of questions at me about hypoglycemia and diabetes. I had no idea what she was talking about, so I just ate the orange peanut butter crackers and sucked back the juice. Luckily, it was fine round two, and I was able to go home.
I was mad enough about the glucose test situation that on my second pregnancy, I politely demanded to not drink the glucose cocktail and instead, participate in a much a longer test that involved two blood draws and a hearty brunch in between. High maintenance, much?
My Second Pregnancy
This pregnancy was a tad tougher on my body than round one - even though the labor was much shorter. Whew. I was literally LIMPING around by around 20 weeks - not just a little waddle every now and then, a straight up limp. My whole body just STRUGGLED this time around. I had so much joint pain, so much trouble walking and so much fatigue. I have vivid memories of me limping around at my oldest daughter's second birthday party and being forced to lay on my bedroom floor minutes after all the guests left because I couldn't stand up any longer.
There were a couple of midwife visits (I switched from an OB to a Certified Nurse Midwives around 30ish weeks with my first pregnancy. My inner hippie rejoiced.) where my urine samples showed heavy amounts of protein. They informed me if it happened again, they’d need to investigate further. It never showed up again.
What did show up, was that my sweet baby was measuring very small. So small, in fact, that we had to see a specialist. The specialist saw us for about 6 weeks or so and was pleased with the growth overall, so we were released from her care. I couldn’t stop thinking about how strange and random this was, particularly since my first baby was BIG. Another piece to the puzzle.
Fatigue/Unintentional Weight Loss.
This one is really a hindsight is 20/20 situation because both of these, I chalked up to being a new mom to two tiny people two and under. What mom isn’t tired to their core most days? What wasn’t okay was the fact that I could barely lift my head off the pillow in the mornings. And once I did, I’d head straight for the Tylenol and knock two back. It was my morning ritual: peel myself out of bed and take the meds to function. I also found myself spacing out during group conversations. There were so many times where I didn’t even remember half of what was mentioned because I was drifting off into la-la-land.
Then there was the weight loss. Again, shedding baby weight, shedding weight after nursing, not paying attention to my weight - all of it just slipped right past me. I knew I was thin, and quite frankly, I liked it. I could wear some old jeans I had tucked away from my younger days. I could wear little bralettes with tank tops because I had no chest whatsoever. I hadn’t weighed myself because I didn’t care. My clothes weren’t tight, and I was okay with the way I looked. People started to notice. Some said things to me…others told me later they were saying things about me. The photos above are some of the most shocking for me to look back on now. I see how thin my face had become and my arms in a couple of these just look like bones.
I weighed about 114 pounds when I went into that emergency room a little over a year ago. I’m about 5’5” so that made my BMI 19, which is “normal” but also very close to underweight. They had to use the children's’ blood pressure cuff on my arm in the hospital. When I see these pictures, I can see so clearly how sick I looked. Side note: some of these are also really good examples of how flat my nose had become. Second side note: I used to have a Root makeup Instagram account (shoutout to @rootprettynicole) - I do not usually pose and photograph myself on a regular basis like that top left photo. :)
Putting the puzzle together
When you search for "Wegener's" on the interwebs, you get lots of information about signs and symptoms, like these:
Runny nose, stuffiness, sinus infections and nosebleeds
Coughing, sometimes with bloody phlegm
Shortness of breath or wheezing
Fatigue and general aches and pains
Numbness in your limbs, fingers or toes
Blood in urine (hematuria)
Skin sores or bruising
Eye redness, burning or pain
Thank you, mayoclinic.org , for this particular list. Quite a few of these symptoms are also symptoms of a common cold, the flu or being a mom to two small children. I had a persistent cough off and on for years - usually only when pregnant. If you've been pregnant, you might know there's such a thing as "pregnancy rhinitis" which consists of: sneezing, congestion and a runny nose. All of THOSE symptoms can lead to a cough, too. I wear contacts so dry, burning eyes are common - particularly, again, during pregnancy. Your vision can even fluctuate during pregnancy, too, which I experienced.
I remember having strange numbness in my parts of my body that would come and go, but it was never anything severe enough to make me go see a doctor. One of the really odd things that kept happening to me for about a year or so was a very low grade fever. I would feel so sore and achey, almost flu-like, then take my temperature only to find out it was at 99 degrees. I remember this happening multiple times and thinking it was so strange as no one else in the house had a fever, and I had no other symptoms.
All of the above, in conjunction with my nose situation, my unintentional weight loss, protein in my urine and high blood pressure (signaling kidney struggles) all fit together to lead to my diagnosis. I had some wonderful doctors in those first few days who knew to even test for this. It takes some people years to get diagnosed with Wegener's, and I had mine in a matter of days. It was such a lightbulb moment when we knew the diagnosis and saw all of the signs and symptoms associated. Each separated on their own, the symptoms didn't add up to anything special.
Take care of yourself
So why in the world did I just detail my (almost) entire medical history for the past 10 years? It’s important for me to share that I missed so many signs. SO MANY SIGNS. Now, my goal is not to create hypochondriacs out of us all because that’s a strong temptation when you hear stories like mine. What I am asking is that you take care of your body. If you have a recurring health problem: sinus issues, high blood pressure, chronic fatigue…don't ignore them. I refused so many times to go see someone about these issues or to investigate them further. I took the first answer every time and moved on as if nothing were wrong. If I had requested the ENT test for Wegener’s even though he didn’t think that was it…what might have happened? If I had pursued the high blood pressure issue even though I didn’t want to know the answer…what might have happened? So many “shoulda, woulda, coulda” instances. To be clear, I blame no one for "missing" this.
Here’s the flip side, too, to calm our inner hypochondriacs. My diagnosis is rare - less than 200,000 cases in the U.S. every year according to Dr. Google. It’s rare yet VERY treatable - cue celebration music! It’s been featured on some medical TV shows and always gets an eyebrow raise from new docs when they hear my diagnosis. So, don't self-diagnose and call Dr. House just yet, please just hear my plea to take care of your body - you've only got one. I'm trying to do my best with the one I have now - I've got some special little ladies that are counting on a healthy mama.
If you've made it this far in my health adventure - thank you for reading. This has been therapeutic to share and write out the details. I've been searching for community in this situation over the past year, and my goal in sharing so much is to hopefully reach someone else rowing that same boat.