Chronically Fashionable

 Fashion has never really been my thing. When it comes to appearance I mostly care about what earrings I am wearing and 99.9% of the time I made them. But when it comes to clothes my number one requirement is comfort. And every piece of clothing has to work for my health requirements. I thought it would be fun to spoof a "What I Wore" fashion post as a chronically fashionable (haha) woman. So here goes nothing...

Monday

Fancy pajama day! On this day everything hurt so comfy and flowy clothes were the answer. Because of the RSD/CRPS my legs always need to be covered. Any wind or air touching can be very painful. Pants are best because I need to lie down often to calm down my heart rate and sometimes that's hard to do in a skirt. I've never been trendy in my life but Palazzo pants are the best...making pajamas trendy one pair of pants at a time!

Tuesday

Trying to look semi professional but also comfy in this outfit. A trend in my outfits is trying to disguise my weight with shirts. My weight is constantly changing and I have absolutely no control over it. People get worried when I look too skinny so I'd rather look bigger to avoid that! Flowy and ruffle shirts are great for this. Maxi skirts aren't as convenient as pants but they are super comfy and keep the wind from touching my legs. Mission accomplished.

Wednesday

After two days of trying to be normal my body decided I needed to stay in bed all day. So here are my true pajamas. Comfy shirt and six year old yoga pants. Winning!

Thursday

Finally some color in my outfits! Coral and navy happens to be one of my favorite color combinations. I love the style of this shirt and I wear it all the time. These pants are the closest I get to shorts. Notice how they're sheer part of the way down? Perfect for staying cool and protecting my legs from unnecessary pain! And the elephants on the bottom are the icing on the cake!

Friday

More color! Such a comfy shirt, I love it! And these linen pants are the best. So soft and perfect for hot days. Oh, and they have an elastic waistband need I say more? And the necklace is made by me and helps dress up the outfit a little more. I have worn pajamas before only to put a huge statement necklace and called it dressed up. Hey, when you're in pain ya gotta do what ya gotta do!

So my fellow chronically fashionable friends....do you dress similarly? Any tips you've learned along the way? I'd love to hear them!

Ocean Free Coloring Page

Saltwater Printable


I hope someone out there is enjoying coloring the pages as much as I enjoy making them. I decided to go with an ocean theme and thought the quote would be a good laugh for my P.O.T.S. friends! Just click the link above to print.

I would love to see your finished pages. Use #besaltyla and #chronicallyhopeful if you are on instagram.

Here is the first coloring page.

Be Brave Free Coloring Page

I created this coloring page for my fellow chronic illness fighters as a fun way to pass the time. Although I think teens and adults alike would enjoy it. Just click on the link and it will take you to the google document.

Be Brave Printable

Feel free to send me pictures or post on instagram using #bebravela and #chronicallyhopeful

Only a Number

I heard from my Lyme Doctor today. My CD-57 numbers are still low. For the past six months my doctor was pretty sure my numbers would be at 60 considering I have been feeling better. Two years ago I started at 21 and then after intense treatment I was up to 37. For the past year and a half I have been in the 30s. And today I am at 43 which is the highest I have ever been. Even so, I am disappointed. After aggressive treatment for two years and consistent treatment for four, I hoped my numbers would be higher and we could at least stay on current treatment or start decreasing the dosage. Unfortunately my number being this low means I will need to up treatment although I am still trying to figure out what this entails.

I would really appreciate prayers for encouragement. Fighting Lyme is getting wearisome. Especially when it doesn't always feel like treatment is working. And while I could try to treat really aggressively I don't know if my body can handle it. Thankfully I am better than I was four years ago. I just wish this battle was almost over instead of realizing there is a lot more fighting ahead.

Emotions and Chronic Illness

Today marks four years since Lyme started raging throughout my seemingly healthy body. I look back at our wedding photos and I hardly recognize myself. Not because I changed so much physically but because inside I am a completely different person. Sure, my hair is two feet shorter and a tangible example of how I have changed physically but what I see is a young woman who had no idea the horrors ahead. Who thought the worst was behind her and was ready to start a life with the man she loves so dearly.

Lyme had been in my system for nearly sixteen years at that point. We had no clue how it was tearing me apart little by little. I had lived with pain from RSD/CRPS for five years. I'd been in a wheelchair and didn't think I'd ever have to go back. However, I always knew it was a possibility. Shawn walked into our marriage knowing my health could fail at any point. When he vowed to love me "in sickness and in health" on our wedding day I knew he meant it with all his heart but I hoped that it would only be a small part of our lives. Instead the day after our wedding my health slowly started falling apart. Turning into a nightmare we never saw coming. As sick and in pain I had been before this was ten times greater.

During those first few months we all hoped that it would be over quickly. I'd conquered pain and illness before and I could do it again. That made it easier to fight because we thought it would all be over soon. And then a year went by and we saw some improvement but a long ways to go. Two years went by and I became worse. More things were going haywire inside my fragile body but we hit the Lyme harder with IV antibiotics and an amazing new doctor on our side. Things eventually improved and I started feeling more like myself bringing us into year three. We could see a better life ahead and then a sprained ankle this March dashed those dreams to pieces.

So here we are, year four. I'm thankful for new treatment and more doctors on my side. But I also feel lost, confused, and tired of fighting. Hope seems to be wearing thin but I know it's there. We know more now than we ever have. Lord willing we can use that knowledge to find the help I need. It's hard to say what lies ahead but I want to walk in hope and joy despite these difficult circumstances. And I hope that one day those struggling with similar illnesses are diagnosed quicker and don't have to walk down this path too. 

The Battle

As I've mentioned before, many doctors are unbelievably rude and condescending toward patients with misunderstood chronic conditions. Lately I have been experiencing more understanding doctors but each time I go into the office I remind myself to believe they have my best interest at heart. The emotional pain I have endured at the hands of "experts" makes this easier said then done. Even when a previous appointment went well I still worry that this will be the appointment that their true colors are shown. But there is hope and I am learning I can trust again.

And then there are the doctor appointments that I am almost certain will go poorly. Infectious Disease doctors are like this, I don't know what they are taught in school but they are so against Chronic Lyme it's ridiculous. I had to see one of them last week but I went prepared for battle. My armor bearer came with me although she is more commonly known as my mother-in-love. If the appointment went predictably horrible either I would be able to muster up the courage to speak against the lies or if all I could do was cry my armor bearer could fight for me.

The Infectious Disease Doctor started spouting off every single lie the CDC had poured down his throat. I knew I wasn't going to change his mind but I also wasn't willing to just take it. I didn't put any energy into my responses. Like when he asked what my symptoms were I said that Lyme has effected everything except my fingernails. Which is very true but it also meant that I didn't have to exhaust myself by listing every symptom when he clearly wouldn't help me.

His response? "Okay, fatigue. So I want to put you on this medication for fatigue. The side effects aren't good though. And then I'll run some blood tests using FDA approved labs. The other labs aren't safe."

In my head I was thinking fatigue is not what I meant, yes the fatigue is bad but I have serious problems everywhere. If I had listened to doctors like you I would not be alive today. And those labs you're mocking, yeah they prove that I am a very sick person! And how about get rid of the infection instead of covering up a symptom!!! But instead I spoke in a rather rude tone and said, "No, I don't want that medication. What tests are you planning to run?"

And you know what it felt good to stand up to an I.D.D. even though that rude tone was basically nothing compared to what I felt inside. It was the first time I ever had the brain capacity and courage to stand up for myself against the likes of him. All thanks to God and my armor bearer sitting beside me.

Of course he ran all the wrong tests and I am still trying to figure out if there is a way I can avoid seeing him to have the results read. I already know what they'll say...absolutely nothing! And then I get an earful of why I don't have Chronic Lyme. It took me a few days to finally get over his daftness. I made a fake award since he should win I.D. doctor of the year according to the CDC. Drawing that award is now on the top of the list of weird things I've done to help myself detox from horrible doctors.  It probably won't be the last but at least I've started to find my voice against Infectiously Daft Doctors!

P.S. I heard from his office today and by some miracle the lab test showed I have Lyme. That has never happened on these tests in my six years of being diagnosed! Usually if Lyme is chronic it cannot be picked up. The doctor said I have a mild case and no treatment was even necessary. What?! Even though this angers me I feel like I won. The test that he believed in should have proved I have Lyme in his eyes. But he is so stuck in his ways that he is unable to say it. So off to Texas I go, where I can get the help I need. At least I know I tried.

Even the Little Things

Life with chronic illness can encompass every area of your life. Even seemingly normal or simple events can wreak havoc on your very fragile body. My recent emergency room trips are a perfect example.

A few weeks ago I started having difficulty breathing at night and also noticed my heart would beat rapidly for little or no reason at all. I have strange and new symptoms all the time so even though I was concerned I knew that there wasn't much that could be done. I kept most of it to myself, but took things a little slower to keep my heart from racing.  

And then one day I got so caught up in a phone conversation that I put off taking a shower till the very last minute. Mind you a shower is one of the most painful and exhausting things I can do. Afterwards I rushed out the door to pick Shawn up from work. The whole car ride I struggled to catch my breath. There was a lot of vog so I figured that was at least part of the problem. When I got out of the car and walked down several steps I twisted my ankle. Twisting anything with RSD/CRPS is not a good thing. When we got home my ankle hurt but my breathing was somewhat better and eventually I fell asleep.

The next morning my ankle felt better but I could barely breathe and my heart really hurt. I had never experienced anything like it and knew I needed to go to the ER. The rest of the story you can read here. All the tests came back normal which is generally a pretty good indicator that the culprit is Lyme or RSD/CRPS. My primary care doctor confirmed that this is the case. Thankfully I am feeling much better although I am trying to be extremely careful of not overdoing it. I mean if "little" things like taking a shower and then twisting my ankle can cause this extremely scary episode then it's a pretty good indicator that I need to be even more cautious than normal.