My Hair Loss Story (And How I Learned to Love Wigs!)

May 22, 2020 | Beauty, chronic illness, hair, personal | 4 comments

My Hair Loss Story

How I overcame sudden hair loss and gained a new perspective

Hi, y’all! For several years, I’ve debated on just how open I wanted to be on my blog. I was happy to share tips and tricks that make life with chronic illness easier, but I always struggled with sharing the more personal side of chronic illness.

The pain, the frustration, the side effects of medication and honestly, false hope. It happens a lot. And it is so hard! However, over the last few months, some major changes happened and I personally was looking for a hand to reach out to for advice and inspiration on a journey I never thought I would be on: hair loss.

And that’s why I’m sharing my journey with you. I’ll be uploading a video soon detailing my story, but in the meantime (or if you’re more into words over video), check out my story below.

Since my early twenties, I’ve had thin hair that never seemed to grow much farther than my shoulders. Which is fine! That was cool, I had grown to figure out which hairstyles and hair products worked well for me.

Over the years, I’ve been on so many different medications for my arthritis. Last year alone, I had tried out four different medications with little success.

 

All had different side effects that weren’t worth the benefit and my body just wasn’t having it. I had started a new medication in November to go along with my bi-monthly infusions to see if we could get my joint pain down a little bit more.

And a side note: a lot of these medications usually have strong side effects when you first start taking them. Patients are often told, “Give it a few weeks, a month or two and your body will get used to it and the side effects wear off.”

First realization of hair loss

Around Christmas of last year, I saw a picture of me with our son and my hair looked like it was so, so thin. You could see my scalp. It shocked me!

And okay, I’m not a vain person, but I’ve always prided myself on the fact that I had relatively good hair that I was pretty decent at styling on a consistent basis. But again… you could see my scalp!

Since I was trying to tough it out with this new medication, I tried to ignore it, hoping that

  1. I was imagining it. Maybe I was being sensitive and overly critical.
  2. My hair would come back in a few more weeks.

A few more weeks later, and my joint pain started getting really bad and it turns out, I was one of the people who this medicine makes your arthritis worse. Figures, right? So my doctor had me stop the medicine.

A few more weeks later, my husband and I were getting ready for an event, I was styling my hair. I was really feeling my hairstyle despite the thinness and I take a mirror just to check the sides and the back and…

Oh my gosh, you guys. I saw BALD spots.

I have my makeup all finished, my hair all done and I am trying so, so hard not to burst into tears.

I had been ignoring my hair loss for about a month at that point, not brushing my hair unless I had to, being super gentle. But that was the moment I noticed legit bald spots, where my hair was just GONE!

That week, I ask my doctor about it, and it’s like a 3-5% chance that medicine I was on causes major hair loss. Like… chemotherapy kind of hair loss.

It was really shocking. He said I could continue to lose hair for up to a year even after doing a washout of the medication. There’s no guarantee that it would actually grow back, depending on if it was temporary medication-induced alopecia or it caused me to develop autoimmune type of alopecia that lasts forever.

Over the next few weeks, I am furiously searching for answers. What do I do? How can I hide it? What products can I use because this was medication-induced alopecia. I look up hair extensions. I look up hair growth products. I cry to my husband. I cry to my mom. I cry to myself because I feel so vain about being so wrapped up in my hair loss.

It was a true grieving process. I had gone through denial, anger, bargaining, depression.

I start taking photos to document how much hair I’m losing, which makes me feel worse about it, but I know I need to be documenting this for progress and for my doctors.

I continue to lose more and more when I brush it and when I shower. Handfuls and handfuls of hair despite my hair being super thin and the length was at my chin at the time. It was so shocking.

Finding support for hair loss

So after all of this, I keep doing more research and more research. I create a secret Instagram account as I stumble upon this amazing hair loss community on Instagram.

I’m telling you: The women’s hair loss community on Instagram is straight up amazing. They helped me realize I wasn’t the only one going through this. There are options. Wearing a wig isn’t just for people going through cancer treatments or older women.

After that, I start looking into wigs. And talk about being thrown in the deep end. It is confusing, y’all. There is so much to learn about wigs. The types, the styles, how long they last, the price, how there are so many rip offs out there.

I genuinely was so overwhelmed. My first two purchases were small, tiny hair toppers and as soon as I got them out of the package, they went right back in and returned to the sellers. They didn’t look like me, they didn’t feel like me, they didn’t match or blend at all. And I had no idea how to make them blend, either!

I was still in a bit of denial, too.

Bless my mom. She’s one of my biggest supporters. At this point, I’m still so incredibly embarrassed about my hair loss, talking to her on the phone, and she mentions how maybe I should visit a wig shop. Just to check things out, see what it is about.

Wading into the wig waters

So I did it. I went to a local wig shop. And oh my gosh, I was so nervous. I tried to do as much research as I could, but I was still so overwhelmed. The owner of the wig shop was so sweet and so helpful and had worked with other women who were losing hair at my age. I walked out that day with my first wig ordered and a little less shame about what I was going through.

It’s been about three months since I went to that wig shop, but it feels like a lifetime.

I continue to learn things about wearing hair each and every day, but most of all, I have a brand new perspective.

When I first started telling people about my wig, I was met with a lot of sympathy, which let me tell you: that is the LAST thing someone wants when they lose their hair. We feel like we’ve already lost a lot. We already feel vulnerable and knocked down a few pegs. Being felt sorry for just makes it worse.

Gaining a new perspective on life & beauty

But then! I realized it was all about how I framed it. Yes, I’ve lost a majority of my hair. But the bonus is I get to have the hair of my DREAMS with so little effort. I mean, I style my hair about once a week and it takes me 15 seconds to put my wig on in the morning.

As someone with arthritis whose hands would be in pain after hair drying and styling every day, this was straight up a miracle. It’s awesome. And now, I kind of feel bad for all the women who have to spend all the time, money and stress trying to upkeep their natural hair.

Copyright Brenda Dalton 2020

Wigs allow me to have the hair I have always wanted, but was unable to grow myself. Wigs gave me TIME back. Wigs have given me so much energy back. Wigs have kept me from a lot of physical pain, too. Wigs have given me a new perspective on life. We aren’t just our appearances. We are our experiences and how we grow from them.

Wigs have given me the confidence to finally share my story. For years, I’ve been really, incredibly shy about sharing what I’ve gone through the last six or so years with my chronic illness.

And all this time, I truly wish I could have found someone who was going through the same thing that was open with the world about their experience.

I’m now ready to support YOU

Now that I’ve seen how women in the hair loss community have shared their stories – and made me realize I wasn’t alone – it’s made me realize I have no choice but to do the same thing. It’s the right thing to do.

If I reach just one person who is going through a tough time with chronic illness or hair loss… all of this was worth it. I’m going to try my best and make it my goal to be as transparent as possible about my journey and where I’ve been and share with you along the way.

Are you going through the same thing? I’d love to hear from you. Leave me a comment below! Shoot me an email or find me on Instagram to tell me your story (I’ll keep it private!), ask questions, or just vent. I’m here to help every step of the way.

P.S. If you’re wondering, the hair I’m wearing in this blog post is ROMAN by Ethereal Hair purchased through SilkorLace.com. She is a European human hair wig with a silk top and lace front. She’s a one-of-a-kind piece, but she is constantly updating her shop with beautiful pieces!

The Ultimate Guide to Infusions From a Patient Perspective

May 16, 2020 | Arthritis, chronic illness, Essential Guide | 0 comments

The Ultimate Guide to Biologic Infusions: A Patient Perspective

A checklist of what to bring, what to expect and how to recover!

Please note: This post contains affiliate links, which means I may receive a small compensation if you choose to purchase any products linked below at no extra charge to you! Click here to view our disclosure policy.

As someone with a chronic illness (Psoriatic Arthritis, to be exact!), I go into my rheumatologist’s office every eight weeks for my biologic infusion. I feel no shame in calling it my “go-go juice” because within 24-72 hours, I am a brand new person.

It has been about ten months since I starting my infusions – Remicade – and it has been the first medicine that has truly made me start to feel like a normal person since I started having joint pain six years ago.

When I first started my infusions, I scoured the internet – and even Pinterest and social media – for tips on how to prepare for my infusion. I came across a blog or two, but overall, the internet kinda let me down. Now, six or seven infusions later, I have my routine down and I’m ready to share it with you!

Typically, my infusion appointment lasts about three hours. Sometimes longer, sometimes faster, depending on my wait time, how busy they are and how happy my veins are to be poked that day. Some medications can be infused as fast as 15-20 minutes, while others can be four or more hours.

I’ll note here that every infusion center and doctor’s office runs things differently! Below is my experience and my advice based only on my experience. And a quick reminder: This is not medical advice nor does it intend to be.

Preparing for infusions

The night before, I shower – washing my hair and all. It makes things a little easier because my infusion appointments are first thing in the morning, so it is one less thing to worry about.

Next, I pack my bag. I typically take a tote bag and fill it with my favorites:

The big thing I’ve realized during my infusions is I absolutely need a snack. I forgot a snack twice and became really nauseated about halfway through. Unfortunately, at my doctor’s office, they only have snacks with gluten (surprising, I know!!), so I was completely out of luck that day. Bring a snack is my absolute biggest tip!

Another big tip for the day before your infusion: DRINK LOTS OF WATER! Think you’re great at keeping up with your water? Cool, drink even more than that! It will help your cute little veins when they’re getting your IV set up and personally, I’ve found the more hydrated I am, the easier recovery will be.

The day of infusions

What to wear to your infusion

My second biggest tip on infusions is to dress comfortably, especially if your infusion lasts more than 30 minutes!

In the warmer months, I typically wear a maxi dress like this one, along with a chunky, oversized sweater. Emphasis on oversized! They have looser sleeves which makes it easier to roll up while they insert the IV, then you can roll it back down to stay warm and comfy.

If it’s in the cooler months, I’ll wear some comfortable, looser (boot cut) exercise pants and a sweater I can easily roll the sleeves up.

I made the mistake of wearing tight, comfortable yoga pants/leggings to an infusion once.

Why didn’t yoga pants work? Because of the fluids they pump through you during your infusion, you’ll likely need to make a restroom stop at least once. Depending on where in your arm or hand your IV ends up, you sometimes end up one-handed. Have you ever tried to use one hand to take tight-fitting yoga pants off? Oof. Oof!

If you can manage fitted yoga pants one-handed, then by all means, GO FOR IT. Here’s a link to my favorite pair!

What to do before your infusion appointment

Eat a hearty breakfast or lunch, depending on your appointment time. Whatever fills you up and keeps you full is great.

Think protein and complex carbs. Oatmeal, breakfast sandwich, protein bar… whatever floats your boat and keeps you going. Even if you don’t eat breakfast (like me, due to intermittent fasting), this is your one day you should be eating breakfast.

Check in before you get to the office, if possible. My doctor’s office has moved to online check-ins.

Typically, I receive an email before my appointment to check-in, go over my health, pay co-pays, verify insurance, etc.

If I’m not able to check in online before, I check in on my phone when I arrive. That way, I don’t have to touch any other objects anyone else may have touched – keeping it clean!

At your infusion appointment

My most recent infusion was my first in a post-COVID world. It wasn’t too different besides the COVID screenings in the parking lot and buildings, plus requirements like a face mask, taking temperature and so on. Every other chair was blocked off to maintain social distance.

Once I arrive at my appointment at my rheumatologist’s office and I’m checked in, they bring me back and ask a few questions:

  • Have you had any recent infections?
  • Have you been on any antibiotics?
  • Have you had any recent surgeries?
  • How are you feeling today?

I’m weighed by my infusion nurse, since my medication is dosed based on my weight. Blood pressure, pulse, temperature, all vitals are taken after that.

At my doctor’s office, you’ll be placed in a private room if you’re seeing the doctor that day. If not, we get an option between the TV room or the “quiet room” which is shared with other patients. This varies depending on the location and your office’s preferences.

Most of the time during my infusions, I’m either working on my laptop, scrolling Pinterest, or watching a TV show or movie. As a mom, I kind of look forward to my infusions because I can sit back, relax, and sit quietly for a few hours when I’m not 100% exhausted at the end of the day!

During my infusion, I make sure to eat a few small snacks and stay hydrated. I find that when I’m able to drink lots of water during my appointment, I recover a lot faster.

After your appointment

Depending on what other medications you’re given during your appointment, you may drive home or have someone drive you. I’m incredibly lucky in that my husband often takes a half-day on my infusion days, so he’s home to hang out with our toddler while I nap, take it easy, and rest in bed.

Sometimes I feel okay after my appointment, and I will continue to work on my laptop in bed. I’ve found that even when I do that and I don’t truly rest, my recovery takes longer.

When I chill, watch some Netflix, eat a healthy snack or two, drink lots of water after my appointment, I’m able to feel a lot better the next day. When I don’t take it as easy, I don’t truly feel back to normal until about 30 hours after my appointment or two days later.

It’s different for everyone! Once you start having infusions, you’ll find what works for you.

My best advice is to take it super easy at first, then build up what you’re able to do after each infusion.

Good luck! And shoot me an email, find me on Instagram, or comment below with any questions you may have about infusions!

Four Things to Know When Diagnosed with a Chronic Illness

Dec 22, 2016 | Arthritis, chronic illness, wellness tips | 0 comments

Note: As I work on becoming more transparent with my life with chronic illness, I’m featuring a blog post I wrote over three years ago, not too long after being diagnosed with Psoriatic Arthritis. I’d love to hear your story, too! Email me at hello AT brendadalton.com. 

New to the world of Psoriatic Arthritis (PsA) or chronic illness? Hey! Me, too. About six months ago, while on a beach vacation with family, I woke up with major wrist pain. It escalated. Big time. Four doctors, five months, and several “it’s all in your head/nothing we can do’s” later, I was diagnosed with Psoriatic Arthritis by a rheumatologist. Here’s a bit of a crash course for staying sane when you’re diagnosed.

know your triggers

Triggers are different for everyone. Sure, there are some triggers that are across the board, but even then, it is to varying levels. A common one for PsA pals is gluten. Luckily, I didn’t have to go through the process of learning about PsA and deal with learning how to live without crusty garlic bread, chicken nuggets and the ease of eating out anywhere, anytime.

Why? Because I was already gluten sensitive! Ha.

Okay, I’m not laughing at you, if you’re trying to figure out your triggers and find out gluten is one of them. I’m laughing with you. Really. It may feel like the end of the world, but think about this: You’re not alone and it’s 2016.

Gluten-free foods are a lot more common than ever before. Sure, you’ll still get people who have no idea what gluten is and you’ll get eye-rolls when you ask for GF food because they think you’re on a “fad diet” and sometimes, if you’re not careful, you’ll get glutened (even in your own home because you forgot a brand was full of gluten).

Personally, my triggers are gluten, excess sugar, alcohol, stress/anxiety and cold fronts. Not counting the obvious triggers of too much physical activity. Others find nightshades (tomatoes, eggplants, etc.), rain or high humidity put them out of commission.

know your limits

This one is important. I’ve always been the type of person who can be up and going all day. In fact, before I segued into running my own business, I had a job that often kept me on my feet anywhere from four to 14+ hours straight.

As time wore on, fatigue set in. And it hit quickly. Frustration set in when going on a day trip or shopping for a day would leave me first, in absolute pain and second, fatigued and with burning joints for a day or three after.

I’ve learned that during holidays, visiting family, planning outings, I have to plan more than the event itself. It’s important for me to plan my week or at the very least, the day before and after the event.

It’s kind of a bummer that there are no spontaneous zip lining adventures or exploring, kayaking and going out for dinner in one day for me anymore, but man, do I thank myself when I allow a little self-care.

It has taken me months to be okay with taking a quick nap or even laying down for a little while in between client work.

It’s okay to have a rest. Don’t push yourself. It’s a battle – I consistently try to do too much and regret it the next day.

know your support system

Do you know why there are many players on a baseball team? Because they would look ridiculous trying to play pitcher and outfielder, that’s why. And they’d probably die of a heart attack from all of the running and stress.

Find your team. Your support system. A spouse, a parent, a sibling, a friend. There are even in-person and online support groups (hello, Facebook groups!) specifically for Psoriatic Arthritis, Rheumatoid Arthritis and more.

Have them hold you accountable. We all want to be strong and take care of ourselves, but with autoimmune diseases and chronic illnesses… that not always going to be easy.

It’s a hard pill to swallow. You’re going to get frustrated with your support system when they tell you to take it easy. You may feel pitied. You may even feel like you’re not heard. That’s normal.

Be open, honest and respectful with your support system. It’s okay to jump in the car with your mom and say, “I’m having a bad day.” Just please, please, please take advantage of your good and great days (or hours) and shout it from the rooftop.

Smile even when your arthritis hits your jaw and you can barely chew. Okay, that suggestion is way too chummy and inspirational for me, especially because wow, it really does suck when you try to smile with your arthritis jaw.

know your humor

Maybe that last sentence could have fallen into this category. I was in a pit of despair when PsA started to take a toll on me and especially before I found the right doctor and started treatment. In fact, it was a little like the stages of grief.

I come from a family that laughs, teases, loves sarcasm and makes jokes a ton. It’s a fact of life. There is no way I was going to let something like a chronic illness take the wind out of my sails on a daily basis.

Sausage fingers? Grab a bun and mustard. Arthritis just before you turn 30? Bring on the low-sugar, gluten-free cake and enough candles to blow the house down!

It’s okay to make fun of yourself. It’s okay to laugh at how our bodies are frankly, confused, and choose to fight against us. It’s okay to cry, too. Not everyday is going to be smiles, but trust me, you can laugh. You can power through. You got this.