chronic illness

4 Things You Need In Your Advocacy Toolbox

When you get diagnosed with a chronic illness, the first thing you need to do is learn how to become your own best advocate. Actually, first, you need to allow yourself to take it all in. Get upset. Or angry. Cry. Throw something. Eat a banana split (or two).  Then, when you are ready, pull yourself together and decide that you need to be your own best advocate.

These are the things you need in your advocacy toolbox:

1. Research.

I’m not taking about straight up Dr. Google or even Dr. WebMD because they will have you convinced that you are dying of rare condition that will have you bleeding out of your eyeballs any second. Don’t get me wrong, the internet is a great place for research but be sure to check your sources. Read books. Keep up to date on the latest research. You can set up Google alerts to be notified if posts or articles containing your chosen keywords (such as endometriosis research or gastroparesis treatments) are published. Blow your doctors away. By arming yourself with this knowledge, you are able to take a more active role in deciding your treatment plan because you know what the options are. I had to learn the hard way. One of the biggest regrets of my life was choosing to take Lupron. I hadn’t been diagnosed with endometriosis long and hadn’t learned better yet and by taking that medication, my body has been damaged for life. Damage I could have avoided had I researched my options beforehand.

2. Build a dream team of doctors.

When I started getting sick and my PCP told me that she suspected I had a “female problem,” I got extremely lucky that a new ob/gyn had just moved to town and she was assigned my case. The average length of time it takes a woman to be diagnosed with endometriosis is 7 years. From the time that my pain became debilitating to the time she had my diagnosed was 3 months. I saw my PCP in July, had my first appointment with her in August which started all the testing, and I had surgery to confirm endometriosis in September. I got lucky. I got lucky not only because I was able to be diagnosed quick but I got lucky because she was an absolutely amazing doctor. I’ve been with her now almost 13 years and everyone else nows how amazing she is and you wait an eternity for an appointment. But she’s worth it.

I wasn’t always this lucky. I’ve had to make a few chances to the line up to create my dream time. The first rheumatologist I saw didn’t believe in fibromyalgia but diagnosed me anyways then drugged me to the point I could hardly remember my own name. The first neurologist I saw seemed to sleep through most of my appointments as he always asked questions on his way out that we had spend the previous 20 minutes discussing. The first gastroenterologist kept telling me to eat more yogurt even though I was suffering with undiagnosed Celiac disease.

If you don’t feel like you’re being heard or treatment progress isn’t being made, there is no shame in asking for another opinion. Heck, demand it. The two most important things for me personally that I want in a doctor on my dream team is 1) I feel that am truly heard and 2) I am an active participant in deciding my treatment plan. Bedside manner is important but not the most important like I thought in the beginning. Dr H (my endo dr) is the warmest, most compassionate doctor on the planet and she has held my hand and cried tears of pain with me over loss and surgeries and cried tears of joy with me over our adoption news. Dr P (my rheumatologist) is a gentle soul. Not overly personal but makes me feel like a person, not just a patient or file and readily makes me an active participant in deciding treatment. Dr B (my pain specialist) has the personality of a wet mop and honestly if he smiles in an appointment I have to wonder if he got lucky that morning but never once has he made me feel crazy or like a drug seeker. He has always validated my pain. I’ve got other doctors but this just shows that there isn’t a cookie cutter mold of what your dream team needs to look like. We would all love to have a McDreamy or McSteamy on our bench but what is important is that you feel like they are on your bench – your team – and take your case seriously.

Chronic Ilness Advocacy

3. Don’t be afraid to speak up.

If you are in the emergency room and you don’t feel as though you are being heard, speak up. Ask to see someone else if you have to. Last year I went to the ER with an early small bowel obstruction. One of the hospitalists came at me with an NG tube. I explained my previous experience with the tube and that anatomically something prevented them from being able to insert the tube properly. The tube would just curl up in my sinus cavity versus descending downward. I was talking but I knew she wasn’t hearing me. She kept saying, “I’ll give you something to calm you down but we’re not skipping the NG tube because you are scared.” Finally, I just said stop and asked to see another doctor. When the other hospitalist came in, I explained the situation and she said no NG tube. Because there had been difficultly before, she wasn’t going to go in blindly and risk perforating something. If 24 hours of NPO didn’t clear the obstruction and an NG tube was necessary, she would consult a surgeon. The first hospitalist huffed out of the room NG tube in hand. The second just smiled at me and patted me on the arm as she walked out.

If you are in an appointment and have questions but the doctor seems rushed, speak up. Make them take time for your questions. It is their job. If they are pushing a certain treatment but you have concerns or reservations, speak up. If you are having a procedure done and are curious about what kind of equipment is used, speak up. If you had an amazing nurse during your hospital stay, speak up. Speak up about the good things and the bad things.

4. Have someone on board who can advocate on your behalf when you cannot advocate for yourself.

As important as it is for you to be a part of your treatment plans and on top of your research game with your illnesses, it is important that you have someone on your team that can call the shots on your behalf. They don’t need to be an expert in the field but they need to know about all your illnesses, your past history, and the medications you are taking. It would also be beneficial if they could go to an appointment or two so they can meet your doctors and get a better understanding of everything that is going on and get some of their questions answered. Also, it is also often very helpful for doctors to get an update on how a patient is doing from someone other than the patient. Sometimes we like to sugarcoat things or leave them out. Not that I would ever do that. Ever. It seems like an easy decision is you are married, have a SO, or are single and have a family member nearby that can help take on this role but if that is not the case, it may seem awkward to ask a friend to take on this type of role (I’m not talking life or death, power of attorney type stuff here) but it is extremely important.

My husband is an amazing advocate and so many times he has stood up and fought for my care when I could not fight on my own. I try to keep an updated list of medications in my phone but when the emergency happened in February, he just grabbed the bucket of medications from the bathroom shelf just trying to try to make sure the doctors had everything they needed. Unfortunately, this bucket contained not only my prescribed medications but basically medications for the whole family which confused the staff even more. This taught me a huge lesson on how I can do a better job of preparing my advocate to be able to do a better job of advocating in my place. These days our cell phones are like a second limb so try to keep an updated medication list, any allergies, a list of doctors you see regularly and their numbers, and a brief medical history (just the high points that emergency personnel may need such as surgeries, etc) and show your BAFF (best advocacy friend forever) where it is located in case of emergency.

 

There are my 4 items essential for any toolkit to be able to advocate for the best possible healthcare for yourself or for your loved one.

What you would add to the list?

 

Stock Images by Turquoise & Palm
faith

Thy Will Be Done: Walking by Faith With Chronic Illness

You can call it coincidence, good timing, divine intervention, or God’s will but there are moments in time where in the midst of chaos, rambling around, or just goofing off that the universe hands you exactly what you’ve needed to hear on a platter. I had one such moment this week. It was late and I was poking around on Spotify looking for new songs to add to my playlist and I came across a song called “Thy Will Be Done” by Hillary Scott and The Scott Family.

For one, I had no idea that Hillary Scott (most known for being a part of the country group Lady Antebellum) had a worship album and second, would have probably never found the album on my own.

By the time the song was over, I was in tears. I take that back. Not tears. Sobbing. It would not describe the prayer of my heart more if I had written it myself. Actually, it described it better than I could have ever written. It could be the perfect anthem for trying to standing strong in your faith with chronic illness. It just spills out of my heart.

I’m so confused
I know I heard you loud and clear
So, I followed through
Somehow I ended up here
I don’t wanna think
I may never understand
That my broken heart is a part of your plan
When I try to pray
All I’ve got is hurt and these four words

Thy will be done
Thy will be done
Thy will be done

I was a junior in college when I felt the call to ministry and I answered. However, when I answered this call, I thought it came with a plan. After graduating undergrad, I immediately started seminary where I studied Pastoral Care and Counseling. I absolutely loved it. My health was continuing to decline but as I was working in the hospital during my chaplaincy internship, I finally felt like my pain had a purpose. I was able to connect to patients in a way that I knew that many chaplains were not. My spirit felt so alive. I graduated seminary in 2010. In 2012, I had to quit working and started the disability process. I was finally approved in 2015 and now, here I am preparing to beg my doctor for surgery at my next appointment. How did I get here? How was this a part of the plan?

I know you’re good
But this don’t feel good right now
And I know you think
Of things I could never think about
It’s hard to count it all joy
Distracted by the noise
Just trying to make sense
Of all your promises
Sometimes I gotta stop
Remember that you’re God
And I am not

Lately, I have found it so very hard to stay positive hence why I had to take a little break recently. I love this verse because it is such a powerful reminder that God is so much bigger than my tiny mind can even begin to comprehend and the noise can be so distracting. It is in moments like these that I know that God is good and even when I cannot see what His plan is here in this very moment, I can trust in His character and because He is good, I can find peace and respite in that.

I know you see me
I know you hear me, Lord
Your plans are for me
Goodness you have in store
I know you hear me
I know you see me, Lord
Your plans are for me
Good news you have in store

I will be the first to admit that there have been moments where I’ve been singing this in my truck and almost had to pull over because I’ve been so moved by these lyrics. Yes, I am that weirdo on the side of the road singing at the top of her lungs with her hands raised in her truck but I can’t help it. Even in the deepest depths of my pain, I can find such comfort just knowing that God has a plan for me and that plan involves things that are good and full of hope. And hope is like the wind. You can’t see it but you can feel it.

Jeremiah 29:11 "For I Know The Plans I Have For You"

I am so glad I happened to be up browsing Spotify that night so I could find this song. It has truly changed my heart and has helped me regain some perspective on my current situation. Though it doesn’t feel good right now, God is good and He has good in store for me and it is from there that I can draw my strength. I have put together a playlist called Strength For The Journey that you can check out if you are on Spotify and hopefully these songs can offer you some strength and encouragement as well!

What is a song that has been keeping you going?

P.S. If you are on Spotify, leave me a link so I can follow you!

chronic style

Loved & Loathed Beauty & Style Products: April 2016

Loved & Loathed Beauty & Style Products - April 2016

 

It is that time to talk about some monthly beauty and style favorites (and not so favorites) I have discovered and/or loved during the month of April! A lot of these are new products but there are one or two old faithfuls that I just have to mention because they are just that good and you need them in your life!

Without further ado, here are my loved and loathed products of April:

Loved & Loathed Beauty & Style Products: April 2016

LOVED

1- Andrea Eye Q’s Eye Makeup CorrectorsI absolutely dig a wing liner but I am the first to admit that I am not always the best at it. I often use the tape method to try to get a straight wing but sometimes that doesn’t always do the trick so I am so glad that I stumbled across these at Rite Aid. They are basically pointed cotton swabs presoaked in eye makeup remover that make cleaning up makeup mistakes a breeze and your winged liner look effortless. I happened to catch them on clearance so you can bet that I grabbed every jar I saw (and maybe checked out another store or two (or three) to make sure there weren’t anymore to be stockpiled.

2- Bumble & Bumble BB Repair*: I love rocking my purple hair but in the process of achieving and maintaining purple hair, it can be rather harsh on my locks so this has been a life saver. It helps repair and protect my hair from heat styling and leaves my hair feeling soft and shiny. I wasn’t sure how I was going to feel about the product so I picked up the trial size but I will definitely be investing in the full size when I run out. A little goes a long way and it is definitely worth the investment.

3- Hard Candy Hydrating Primer Mist: I have really sensitive, dry, and often irritable skin. When my butterfly rash is in full effect, this primer mist is a perfect first step for helping add in some hydration and vitamins before putting on my makeup. I still use another primer with it but it does help my skin feel more refreshed and help my makeup go on much smoother. At only $8 a bottle, it is definitely a steal.

4- Oil Essentials Revitalize, Natural Beauty Oils: This beauty oil does it all. This one specifically is Evening Primrose Oil but the line has many different types. This one helps revitalize the skin by improving your complexion and restores moisture balance as well as delivering much needed nutrients to your hands, nails, and even your hair. This oil is packed with powerful Omega 3, 6 & 9 and Vitamins A and E. What I do is apply the oil to my hands at night and rub into my skin after washing my face and then whatever is left over on my hands, I run through the ends of my hair. It smells great and leaves my skin and hair feeling (and smelling) lush and healthy. Its one of those do it all products.

5- Sephora Collection Disney Minnie Beauty: Minnie’s World In Color Eyeshadow Palette: I am a drugstore girl all the way but every one in a while a product catches my eye that is worth saving up for. Because my heart is made of pixie dust, I knew I had to have this collection from Sephora as soon as they announced it. Lucky for me, Ebates has started a new incentive when it comes time to collect your Big Fat Payment. Instead of being mailed a check or having funds sent to your paypal account, you can apply your funds to an e-gift card to a wide variety of stores and they will add an addition 10-15% on top of your payment. Lucky for me, Sephora happened to be one of those stores so I was able to treat myself to a couple of the items from the new Sephora Collection Disney Minnie Beauty Collection. I will be honest that I was a little hesitant about the quality of the shadows when I first received it. The packaging is to die for but so many times with special collection palettes, the eyeshadow quality can be pretty pitiful but I was very pleasantly surprised and have been able to create a variety of beautiful looks using this palette. A perk of the packaging is that when you are done with the shadows, the mirror and palette pop out and you can use it as a case or clutch. Isn’t that just adorable?

6- Sephora Collection Disney Minnie Beauty: Minnie’s Inner Glow Luminizing Blush: This was another item included in the limited edition Sephora Collection Disney Minnie collection but unfortunately it is no longer listed on the website (sad trombone). This is a beautiful peach luminizing powder and looks beautiful on pale princesses like myself. On darker skin tones, it would make a beautiful blush topper. It isn’t the smoothest highlighter out there but it is really pretty and again the packaging is swoon worthy and if you can tell in the bottom picture, there is a Minnie head in the powder itself.

7- Sephora Collection Disney Minnie Beauty: Perfect Red Lipstick*: Just as the title says, this is the perfect red lipstick. It is that perfect blue-red shade that makes your teeth look whiter and it is super creamy and oh-so-comfortable to wear. Matte lipsticks and liquid lipsticks are all the rage these days (don’t get me wrong, I love them too) but this is a refreshing shift and it is more of a creamy, satin finish. Originally, there was a little Minnie head on the top of the lipstick itself but I’ve been loving wearing it so it has started to wear away (sad face). Again, can we just say how cute the packaging is? I have since picked up two of the remaining items of the collection which is the eyeliner set and cream lip stain set so hopefully they will be as amazing as the rest of the collection and you may be seeing them in next month’s post! I know what makeup I’ll be packing for our trip to Disney in September!

8- Betsy Johnson Wing Tote Bag (similar): Betsy Johnson has always, always been one of my favorite designers. Some of her designs are pretty out there but my favorite are those classic styles with a twist. She’ll throw in a unique accent color or funky design element to give it something extra and give it some edge. I’ve recently lost a lot of weight and have been selling a lot of clothes, shoes, and accessories on Poshmark. I have been wanting a new handbag but I wanted to invest a little more into a bag that was well made and that I knew I could wear for a long time. Poshmark is a great place to shop for second hand clothes and accessories but you can also find items that are brand new and usually at a discount from what you would find in a retail store. When I spotted this purse, I knew it was the one. I saved my earnings and took the plunge and am in love. It is the perfect size. It holds everything I need without being ginormous. The colors of course are my signature colors and since the vast majority of my wardrobe is black, white, and gray, it goes with everything.

9- Viorica Studded Sandals by JustFab*: I am absolutely in love with these sandals. They are a perfect summer staple yet the studs give them that something extra. These sandals can take the most basic outfit and add that bit of edge that I am always looking for. If it has studs or spikes, I am all over it. I am that proud YPW that loves purple hair, tattoos, and spikes. And you know what, Jesus loves me anyway 🙂

10- NYX Jumbo Eye Pencil in Milk*: Spring and summer is the time to break out bright eye colors and if you really want to make them pop, NYX Jumbo Eye Pencil in Milk should be a staple in your collection. It is so unbelievably affordable especially when you count in sales and coupons. It makes a perfect eyeshadow base and since it is in pencil form, it is quick and easy to use. These eye pencils come in a variety of colors which would all work well as bases or quick all over color on their own. Of course, they can be used as liners as well. If you need your eyes to look more awake (come on, we’re spoonies – of course we need to look more awake), you can line your bottom waterline for an instant boost.

11- Physicians Formula Eye Booster 2-in-1 Lash Boosting Eyeliner + Serum, Ultra Black*: This is one of those oldies but goodies I mentioned at the beginning of the post. I am sure that I have mentioned it before but this is seriously the best eyeliner out there. If you struggle doing winged eyeliner, you need to try this. I can’t speak for the whole “lash boosting” properties, but the tip of this eyeliner makes it so easy to create a thin or thick wing and the formula is amazing. The important thing is to make sure you get the Ultra Black. The regular black is terrible. The Ultra Black is where its at. I have tried other eyeliners and always come back to this one. You can almost always find it on sale and can also stack coupons. I always, always keep a back up on hand.

12 – NYX Tinted Eyebrow Mascara*: Your girl here has some wild eyebrows and this tinted eyebrow gel from NYX has been a life saver. It works great after I’ve taken the time to fill in my eyebrows using a pencil or powder but because it is tinted, I can also use it in a pinch if I am in a hurry and need to get out of the door quickly. I may not wear a full face of makeup every time I leave the house but I almost always at least throw on a quick coat of mascara, tame the brows, and add a quick swipe of lip balm. This is super affordable and comes in a variety of colors to suit every hair color. Maybe not purple but the deep brown gets the job done 🙂

13 – L’Oreal Paris Stylist Definer Brow Liner*: This is my newly found brow pencil love. I have some wild eyebrows but of course they aren’t even and sparse in some places and this pencil makes it super easy to fill them in and look natural. No sharpie brows for me please. Many eyebrow pencils I have tried are either really dry or pull really warm/red which is definitely not a look I am going for. The pencil itself is small, creamy, and retractable (yay for no sharpening!) and I love that there is a spoolie on the end. Many have compared it to the Anastasia Brow Wiz which I have not tried because I just cannot make myself pay $22 for an eyebrow pencil. Maybe if it had Minnie Mouse on it (LOL) but I will stick with this one. I give it two thumbs up!

14- Maybelline NY Instant Age Rewind Eraser Dark Circle Treatment Concealer, BrightenerRaise your hand if you live in a constant state of not enough sleep and circles under your eyes dark enough that it looks like you’ve been punched? *Both hands raised If you have checked out any beauty stores lately or watch any beauty youtube channels, you have already learned that the makeup industry has gone color correcting crazy. Every color of the rainbow does something different and I’m game for playing paint by number on my face if it means that I don’t look as sick as I feel. This concealer is another oldie but goodie and had the whole color correction game won for quite some time. This concealer is a light pink-peach and is perfect for correcting dark under-eye circles. I add a little of this concealer to the inner portion of my under eye and then add a fair concealer in a small triangle under my eyes and between the two, magic happens. This is another product that I always keep a back up on hand.

15- BH Cosmetics Smooth Canvas Long Wear Eye Shadow Primer: These little pots contain magic. I compare them to mixing a concealer with a traditional eyeshadow primer. They completely cover any redness or veins on the eyelids creating a perfect canvas for your eyeshadow. They remind me a lot of the MAC paint pots I have heard so much about (but have not tried). I like using my NYX Jumbo Pencil in Milk if I am doing a really colorful look but prefer to use this when I am doing a more neutral look. They help the eyeshadows apply smoothly without creasing. I will even grab one to cover my eyelids if I’m in a hurry just to cancel out any redness and appear a little more put together. They come in four different colors but my favorite is Malt. It seems to work the best with my complexion. The only bummer is that they have to be ordered online but they are almost always on sale and BH Cosmetics usually has a high cash back percentage through Ebates. Every penny counts!

 

LOATHED

I actually have a few unfavorites this month! One is a true loath, one is more of a “meh,” and the other is more of a frustration.

16- Rimmel Super Curler Mascara: I hate this mascara. Hate it. It is super thick, wet, and clumpy. It makes your lashes stick together so it looks like you have 4 thick, gooey lashes so between your two eyes, you look like a spider. Not a cute look. I have no idea why they call it Super Curler because it did nothing to curl my lashes. I even tried wiping off the wand and then trying to apply. It was a no go. Off to the trash can it goes. I don’t think I have every found a Rimmel mascara that I have actually liked. I think I’ll stick with the ones I know that work.

17- Makeup Revolution Ultra Contour Palette: I am going to preface this by saying that I am a huge fan of the Makeup Revolution brand. Their blushes are beautiful and their highlighters, oh their highlighters, are absolutely stunning. This palette, however, left much to be desired. It wasn’t horrible but it wasn’t up to par in my opinion. The pigmentation wasn’t that great and the contour colors were too warm for my complexion. This is coming from a cool toned, ultra pale princess so for those that aren’t Casper and are warm toned, you may actually like this palette. It just wasn’t for me which is why it fell into the “meh” category.

18- Bumble & Bumble BB Does It All Styling Spray: This is another Bumble & Bumble product I picked up in the trial size to try it out as I’m looking for new styling products for my hair since it is now the longest it has been in years. Like over ten years. I’ve been rocking short hair for a long time. That being said, I’m glad I picked up the trial size. Its not a bad product. It does a good job at styling my hair and keeping it in place without having that crunchy feeling that makes me want to shudder. The problem is the smell. Holy moly. It smells SO bad. Thankfully the smell fades but it gives me a headache just spraying it over my head for 10 seconds. I’m trying to decide whether to pass it along or just hold onto it for travel. Even though its just the trial size, its still definitely too much money to pitch in the trash. Why couldn’t they make it smell better?! Ugh. First world problems at its best.

 

If you are still with me, congratulations, you have made it through this edition of Loved & Loathed! You deserve a cookie and a ribbon for making it through! Next month, I’ll try to keep it down! I missed March so there were more products than usual.

Now, that I’ve showed you mine, now you need to show me yours! What beauty and style products have you been loving or loathing lately?

 

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