How to do the Ketogenic IC diet in a healthy way

How do you do the Keto IC diet? I get asked this question frequently…even when I wasn’t posting regularly on my blog. So let’s start with this for those who don’t know what is the Keto IC diet?

The Keto IC diet is two diets together: Keto or Ketogenic and IC or Interstitial Cystitis. I’m sure everyone and their mother knows by now the popularity of the keto diet for weight loss, but what about for health purposes? And maybe that includes weight loss, but not always. The IC diets is about maintaining an alkaline diet as best as possible without triggering a flare up in your bladder or the rest of your body.

This IC Master list is generally what have worked off of to help me with my IC diet, eventually you will learn what works for you. The more in a flare up you are the more you should not eat acidic foods, like tomatoes, alcohol, onions and other foods/drinks like that. Once you are healing you can start testing what foods you can add into your diet.

The Keto diet is at its core cutting out carbs and refined sugar..yep bye bye breads, pasta and chocolate. Read up about what you should eat on Keto online, it can be challenging. And fair warning some people who have IC do not do well on it. The reason I finally committed to the Keto IC diet was because of the bacteria in my bladder. I have candida glabrata growing in my bladder. Candida glabrata is a rare type of yeast infection that can be very challenging to get rid of. I have been through three rounds of treatment. One was a anti-fungal medication I took orally. And the last two were compounded meds that a compounding pharmacy had to make for me for self-catheterization. When I tell you this is not fun… believe me.

What seems to keep the Candida glabrata from becoming overgrown is the keto diet, which makes sense because sugar feeds bacteria…yeast is very much a bacteria. After the first round of self-catheterization meds I made the mistake of eating carbs again because I felt good and it ruined my treatment. Healing takes time and I need to be more careful.

So now on to the business of what to eat on a Keto IC diet…because it seems SO LIMITING! And yea it can feel that way often. Don’t get me wrong I miss eating the foods I love but I don’t miss the pain I felt and self-catheterization.

Here’s foods that I like to eat regularly…This is not a comprehensive list at all.. This is just off the top of my head. And I think I will another post about this next week to fill in the blanks on what I missed here.

Eggs: I love to eat eggs. Hard boiled, over easy, scrambled, omelets. Eggs are so versatile, they can be eaten for breakfast, lunch or dinner or even a quick snack if you want.

Fish: Salmon is my personal favorite, but I also enjoy tilapia. Really almost any fish is great for Keto IC, but not fishsticks because they are fried. One thing to keep in mind though is how you prep your fish. Be mindful that you are IC friendly with your preparations.

-Nuts: I always keep cashews on hand for a snack. They are high in protein which is important for Keto and IC friendly. (*people with nut allergies should be aware of that this would not be appropriate for them)

-Cheese: Who doesn’t love cheese? But careful about the kind of cheese because certain kinds of cheeses can possibly irritate and flare up your IC. Please refer to the IC Food list for this. Cheese is great for anything… good to use for a snack or in an omelet or make a pizza from scratch. There’s a million options for cheese.

-Meat: If you are careful about the meat you choose because of your IC… not spicy, processed or cured. Meat is a great choice of course and really a mainstay of a Keto diet. You can make all kinds of stuff…. Bunless cheeseburgers (or make lettuce wraps), tacos with low carb quesadilla wraps, chicken salad (with appropriate IC modifications).

-Desert: This would be no list of mine if I didn’t include desert… let’s start with ice cream. There’s two low carb brands of ice cream that are amazing. Halo and Rebel. 100% delicious and they have a ton of flavors, low carb. There’s a brand of no sugar chocolate called Lilly’s, which you can now find at most grocery stores..Harris Teeter, Mom’s, Giant and more. Lilly’s has amazing sweet snacks. Milk chocolate bars and chocolate covered popcorn that will blow your mind. If you can eat chocolate, try it. Sometimes people with IC can’t eat chocolate at all… at first I couldn’t but later on as I started healing I was able to eat some and then more later on. I eat a lot of vanilla and caramel deserts even still when my bladder isn’t at it’s best.

Here’s what I might eat on a given day.

-Breakfast: Eggs or Two Good Yogurt- this Greek yogurt only has 2 grams of sugar per cup and it’s freaking delicious and as of late it’s being sold in more and more grocery stores.

-Lunch: Chicken Salad or something else that is left over…read that as easy to make. If not I will just have a snack like cashews and/or cheese.

-Dinner: Salmon or chicken with a green vegetable like broccoli or asparagus.

The Keto IC diet is challenging on an easy day, I have been doing this on and off for years now. I’m going to just lay it out for you. There are days when I just want to eat Chinese food or order pizza and cry about how I hate my diet. Sometimes I let myself have a cheat day. I am not perfect. Nobody is perfect. This diet is exhausting but my health is more important to me than not.

I think meal prep and knowing what you need BEFORE you go to the store is hugely important. Especially if you are just starting out on this journey of a diet.

You might feel like this is the blandest most boring diet ever.. and maybe it is (…because it is) but it is certainly better than having a bladder that is on fire with crushed glass inside trying to get out… or whatever your version of that is.

I know how hard it is and I can only hope that this gave you some ideas. I really encourage you to research research research. Research Keto and then look at the IC food list and see what needs to be changed. Sometimes it is just trial and error. Also you can always message me if you have a question because I am here for it.

I wish you well on this journey, friend.

Still Chronically Ill…along with the hope of being chronically amazing

It has been much too long since I have posted on here. I think it is time to really get back into it. So much has changed since my last post in January 2019. I don’t even know where I have been. Well…I guess I still have my four cats (crazy cat lady!), and live in the same house with my same partner and… okay well I promise stuff has changed. Like I graduated from grad school and got a job or two. And I picked up a hobby or three.

My time away from my blog has taken me so very far. Alas, I am still quite chronically ill…possibly even more so than before. If that’s possible? Yes… it is lol. It’s impossible to catch anyone up in one post…. so I won’t try. But I will just talk about where my health is at physically. Because I have a new health problem!!! …yay…

Around February/March 2020, right before the coronavirus hit hard, I started having ear problems. I thought initially it was an ear infection in my left ear and then possibly a sinus infection. Left ear symptoms have included ear fullness, tinnitus, hearing loss, ear pain, balance issues, vertigo. I went to an ENT who sent me for a MRI of my left ear. The MRI according to the ENT, my primary doctor and my neurologist was all clear. So generally speaking that’s good… but then what’s wrong with my gosh durn ear?

Well the ENT then told me that the ear pain was most likely related to my chronic migraines and because I have tendency to clench my jaw. I disagreed with him. He actually argued with me about it. He was very rude and talked to me like I have no idea what I am talking about when in fact I have many years experience being chronically ill. And I know my migraines very well, including when I get new symptoms related to my migraines.

I have had chronic vestibular migraines with auras and vestibular vertigo (a different kind of vertigo than what I am experiencing related to the ear issue) since I was 17. And this is not the same thing. I discussed it with my primary doctor and neurologist and both agreed with me, that this ear pain and all it’s symptoms are new and unrelated to my migraines.

My next plan of action was to have a audiogram and balance test. I decided to do it with that same ENT because it was easier during the pandemic than finding a new ENT…or so I thought. Is anything ever that easy? The balance test required me to stop almost all my medications 48 hours before. Medications including: antidepressants, antihistamines (This one I understand), anti-vertigo meds (This one I understand), migraine meds…all of which I take and need to survive. I tried and went into severe withdrawal after 12 hours and was curled up in a fetal position in the dark and just sobbing.

I broke down and took all my meds..It took me another 24 hours to feel normal again. When I called the ENT’s office to discuss the situation they said I couldn’t do the balance test unless I could stop all the meds, even though I still experience balance/vertigo issues while still taking my meds. And when I first went to see the ENT for my initial appointment he did a 2 minute balance test on me and it was horrendous. I left the office literally holding on to the walls because I was so off balance…that continued for the duration of the day.

So after they refused to work with me, I decided to find a new ENT. And I have an appointment to meet with her at the end of August. I have a strong feeling that I have Meniere’s disease and my primary doctor agrees, all my symptoms matches Meniere’s perfectly, so the ENT I will be seeing specializes in balance issues and Meniere’s.

One last comment about the first ENT, when I told him I thought it might be Meniere’s, he shut me down hard and fast. He told me it was impossible because it is so rare. Umm…Hi…I’m queen of the rare illnesses! I don’t appreciate doctors who don’t listen and think they know everything. It says a lot about the medical community that they think they know everything and they don’t listen to their patients. And if I do end up having Meniere’s I will most certainly be calling that ENT to let him know, because that’s just how nice I am ūüôā

And for those who are unfamiliar with Meniere’s disease… it is a chronic illness that affects the inner ear, which is responsible for hearing and balance. Meniere’s symptoms include but are not limited to: vertigo, hearing loss, tinnitus (ringing in the ear), ear pressure. That being said Meniere’s is pretty rare according to ENTs, Neurologists and other doctors. The American Hearing Association says that about 0.2% of the US population have it. But because it is so hard to diagnosis it makes wonder if it’s rare because it is so hard to diagnosis OR because of ENTs like the guy I went to see who refused to even entertain the belief that it could be Meniere’s and told me that it’s related to my migraines when it’s clearly not…I mean with doctor’s like that in our medical system how is anyone supposed to get a proper diagnosis?

As for me… I am a rainbow of chronic illnesses.

OR maybe it’s that they are like Pokemon…gotta catch em all!!! /Sarcasm

But I like to think that not matter what…I am chronically amazing despite how many chronic illnesses I collect. Maybe the more I have the more amazing I am. It’s hard to say right now.

Until next time my friends!

Being chronically ill is like wishing you could have a new bike but instead of getting a new bike you get the plague ...over and over again.

Bonus Birthday Post: It’s a Birthday Miracle!

Warning: This is a rare positive outlook post containing wonderment and miracles! Do not read if you are in a bad mood and want to continue to be in a bad mood. If you want to continue to be in a bad mood click here.

Friends! It’s my birthday! January 18. Can you believe it? Well, you should because everyone knows it goes like this: Chanukah, Christmas, New Year, Rachel’s Birthday! That’s how it has always been…since the day I was born. True story.¬†

I am now 33 years old. Sheesh… My gracious. Friends… let me tell you it is just taking me forever to get to be the age I feel on the inside. I was born a baby… but on the inside, I was really a 65-year-old woman. Nothing said that more than when I was 10 years old than how much I loved my grandmother’s hand me downs. Like legit grandma clothes…stuff that no 10 years old should wear. But darn it if I wasn’t rocking it like I was a 65-year-old lady myself. I was all … long hair don’t even care. I got this amazing windbreaker from her, I wish had a picture.¬†Anyways my point is… I’ve been old since I was born.

That being said …I have to wonder how does my no buy impact my birthday? If you haven’t read about my no buy year you can check that out here to learn more about it. But in general, it’s just how it sounds, but don’t make assumptions if you didn’t read the post.

Usually, I might buy myself a birthday gift…nothing specific, maybe a piece of jewelry or a piece of clothing I really like. This year…not so much. As they are non-essential items. Womp womp. And, even though I have been unsubscribing to every store ever on email (which btw has really streamlined my emails) I still get stuff in the mail. So I get birthday coupons and discounts in the mail from stores encouraging me to shop there for my birthday and get a free gift!!!

I started getting those in the mail and email in December, friends! December!!!! Really uncool. Talk about catering to consumerism. It’s your birthday… buy $30 worth of stuff and get a $10 item for free!!!! Uncool!¬†

Usually, I would be all over it. Because it’s my birthday! But now it’s the first month of my no buy year which makes for a lackluster birth month… or does it? I think it makes my birthday a bit more special because I am realizing that I don’t need to be buying all the stuff to just have a good birthday. Because I got better stuff anyways…

So not to be awkward… but what’s this miracle you are talking about?

Right…let me tell you about my miracle! (Which is the better stuff btw!) As many of you already know, since you are here, I have many a chronic illness…a couple of which are asthma and bronchitis. Back in November,¬†I began immunotherapy.¬†If you haven’t read my previous post which goes into detail about what it is… Immunotherapy is basically an allergen cocktail to help boost immunity to allergens. My immunotherapy shots are done in both arms every other day, and yes …I do the shots myself…eek! It’s not so bad lol.

Here is a picture of how I set up my stuff when I do my shots every other day. I have my biohazard container for used needles, syringes, two vials of allergen serum created specifically for me and off to the side is a bottle of Benadryl because my arms get incredibly itchy afterward which is normal and taking the Benadryl helps to ease the itchiness.

IMG_6499.jpg
Image description: Set up of my every other day immunotherapy shots which includes: two vials of allergen serums, alcohol prep pads, two insulin size syringes, biohazard container and log to write down that I did my shots.

The purpose of these shots was to ease my asthma and bronchitis which is exacerbated mostly in the colder months. If I get a cold…it becomes bronchitis. If someone else has bronchitis…I get bronchitis. There’s generally no stopping it. Asthma and bronchitis are my longest running chronic illnesses that I have had since I was a child. And I get bronchitis yearly without fail…sometimes multiple times a year.

Okay…so where’s the dang miracle?!?!

This past week my 8-year-old stepson, Reid, became sick… he had a fever and started coughing. Usually any time he is sick and in the house with me…I get sick without fail. I don’t have the immunity to fight off the sickness. I kept washing my hands and just praying and putting it out to the universe that I wouldn’t get sick.¬†

And then yesterday (Thursday 1/17/19) Aaron took him to the doctor and it turned out he has bronchitis. He has bronchitis?!?!?!?! But I don’t?!?!?!?!

Back the truck up… On Wednesday 1/16/19 I went to see my allergist for a check in to pick up new vials of serum and she told me that the immunotherapy could be working for me. Since it’s winter, now is the time that I would be noticing the difference. And then Thursday Reid has bronchitis …and I can see the light!!!!! And immediately Fiddler on the Roof, Miracle of miracle started playing in my head.¬†

Related image
Image description: Gif from Fiddler on the roof. A scene from the song miracle of miracles with Tzietel and Motel running through the forest. Text says Wonder of wonder, miracle of miracles!

I am absolutely thrilled for this birthday miracle. Friends, I can’t even tell you how many times I have been sick with bronchitis on my birthday. But not this one! Huzzah! It turns out there is still hope for random treatments working. My doctor and I tried this immunotherapy treatment as a sort of sweeping grand gesture last resort because there was nothing else left that would work for my asthma and bronchitis and there was really no assurance that it would work.

I don’t know if it will continue to be bronchitis free but I know that for right now I managed to¬†live in the same house with bronchitis and not get it!¬†This was just a short-ish bonus birthday post that I wanted to post today to share my excitement for this miracle that I am experiencing. I’ll post again at my usual time on Sunday!

This does indeed feel miraculous and wonderous. Happy birthday to me! 

Never stop believing in hope because miracles happen everyday.jpg
Image description: Never stop believing in hope because miracles happen every day.

My No Buy Year 2019

My no Buy year
Image description: My No Buy Year 2019

Here comes my first post in a series that is seemingly unrelated to anything and everything I will have ever posted here. However, this is a blog in my journey where I live less invisibly, where I open myself up and live an authentic life. This is a place where I hold myself accountable even. And that’s exactly what I am going to do in this upcoming year.

Maybe you already guessed by the title of the blog post but I am introducing you to my no buy year! Sounds exciting? or terrifying? maybe confusing? Yes to all of that. I recently learned of the no buy year online and was fascinated so I researched it. People who spend too much money frivolously on non-essential items such as clothing, housewares, makeup, plants and more. Anything you can imagine people buy in excess…

I think it is important to clarify what a no buy is and is not:

What a no buy is not

  • Buying absolutely nothing at all
  • Not buying the things you need
  • Not buying food
  • Not buying gas for the car
  • Not buying medication you need to survive

What is it then?!

  • Not buying things casually meaning no frivolous spending
  • Not constantly browsing for things to buy online
  • Not buying things you don’t need
  • Not buying more than what you need
  • Buying only enough of what you need
  • Buying replacements of or replenishing what you need, if and when your items run out
  • Cutting out temptation/unnecessary junk emails (unsubscribe from emails of companies you like to buy from, unfollow Instagram and Facebook, etc.)
  • Setting rules and limitations for yourself to follow
  • Appreciating what you already have

Alternatively, It can be…

  • A low buy – That is to say, instead of buying nothing, you can commit to doing a low buy. Which is just how it sounds. Basically, it’s a budget but it sounds nicer and a little less overwhelming for some people.¬†¬†

What I have learned through my reading of blogs, watching vlogs and a book, that I now love called The Year of Less by Cait Flanders…is that it is important to create your own rules. There is no one way to do a no buy. It can be for any amount of time, some people do it for one month, others for 6 months. I have decided to do it for one year, actually, a lot of people do them for one year, because of the book The Year of Less. I had actually already planned to do my no buy year when I found her book and felt so lucky to find that extra support.

Oh my gosh, why would you even do that!?

I have asked myself this question a million and half times and I probably will continue asking myself why am I doing this over and over again. But my reasons are legit, I promise. I have found that in spending a lot of money I am trying to fill a void inside of me.

I have not mentioned here before that I have C-PTSD (Complex-Post Traumatic Stress Disorder), it is just not something I share with a lot of people but now is the time to be less invisible, it’s in my name! My C-PTSD leaves me with a lot of severe mental health issues that can easily go unchecked. In the last year, my spending habits on things have careened unhealthily out of control. After a lot of introspection and reflection on why¬†this was happening, I realized it was because of my C-PTSD.

Mental health issues can account for impulsive spending habits and our consumerist society certainly doesn’t help. We are constantly bombarded with advertisements on TV, magazines, Facebook, Instagram, and other online sites…These remind us of all the stuff we want and should aspire to have.

Instagram perfect lives are what we all wish to have…but in reality, it’s just a singular pre-arranged filtered moment that someone created to make life seem perfect. What that person doesn’t tell you is how many times they had to snap that selfie to get just the right angle or lighting… or how long it took or much it cost for them to something. Or for stores to use Instagram as a platform to sell you things to have your perfect life. But really it’s all just to make you think you need more.

What I hope to gain from my no buy year

Well aside from having less stuff, in the long run, I plan to declutter things that I no longer need. I will rehome items that I no longer cherish. Find friends who might appreciate items or donate them.¬† I want to appreciate the things I have and just enjoy life…not¬†things. Spending money on stuff will not make me happy.¬†

What else? 

Over the upcoming months, I will do check-ins, let you all know how I am doing. What I have bought or haven’t bought. In the first 13 days of my no-buy I have bought some things… that I needed.¬†On the few occasions, I wanted things I wrote them down in a log, that I am keeping on an excel spreadsheet…if I still want them in a year maybe I will buy them then… or not. Understand..when I say I want things, these are things that I get in my brain and I feel like I NEED them but I know I don’t… like some makeup or a cute shirt or something that I have no need for. But I keep track of them to see where I end up in a year.¬†

Here’s the courage

In my previous post, My Year of Courage, I basically said this is a big year for me and this is one reason why. I have a lot going on this year and taking on a no-buy is a huge deal and takes a lot of courage…its a big commitment but I am ready for it. My health…physical and mental, need a solid commitment like this to carry me through. I don’t think I have ever committed to such a big undertaking. But I do believe that as a chronically ill person that it will benefit me greatly.

If I am spending less money on junk I don’t need, I will be less stressed out about money and stuff piling up in my home. I am committed to this. And my courage will get me through this, along with my lovely and wonderful support system.

My support system is my boyfriend, Aaron and my friends who will be there for me. Maybe I will feel like I need to buy something and I need to tell someone badly. So I text my friend and tell them about it to help me get through the year… this is the support system I have implemented for myself.

Should you do a no-buy?

That is 100% your decision, but just remember it can be as long or as short as you want. 1 month, 6 months or longer. Just make a commitment and go with it. Google it, research it. Message me and I’ll be happy to talk about it.¬†

Low-buys and no-buys are something to consider this year. If you think you can’t commit to such a thing…think again. Because when I thought about doing it at first…I thought it sounded insane. But I have fully committed. I made a whole plan which I will be sharing with everyone soon.¬†¬†

What to expect from this No Buy commitment

Expect to see what kind of rules and limitations I have set up for myself in the next couple of weeks because this is a crucial part of a no buy. Without rules, doing a no buy would be very difficult if not impossible. In the upcoming months expect updates about how my no buy is going and how it is impacting me, mentally, physically and emotionally. 

Join me on my journey as learn what it’s like to not spend money during my no buy.¬†

More was never the answer. The answer, it turned out, was always less.
Image description: More was never the answer. The answer, it turned out, was always less. -Cait Flanders.

2019: My Year of Courage

image description- courage doesnt always roar. sometimes courage is the quiet voice at the end of the day saying i will try again tomorrow.png
Image description: Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow”

My 2018 resolution was to pick a word and incorporate that word into my life. I like the idea of incorporating a word into my life that I wanted to practice or embody in the new year. The word that I chose for 2018 was self -care.¬†I chose self-care because as a chronically ill person I feel that it is important for me to take care of myself, meaning set time aside to rest, consciously do things that I normally wouldn’t… like rest.¬†

For example, early on in graduate school, I would do school work long into the night…exhausting myself and quickly burning myself out. But through self-care, I realized that was unnecessary and unhealthy for me, so I established a rule: no school work after 9pm. And it was a beautiful rule that enabled me to know there was an end in sight. At 9pm, I would stop and I could do anything I wanted, watch tv, read a book or go to sleep… just not school work.¬†

If you haven’t guessed it already my word for this year is: courage

Courage (noun) cour-age \ker-ij  :mental or moral strength to venture persevere, and withstand danger, fear, or difficulty. Synonyms: bravery, daring, courageousness 

This is an anxiety-filled challenging year. And ya’ll I just gotta tell ya… I’m kinda shaking in mah boots. It’s a big year. First I have my full-time internship which is 32 hours a week (4 days a week) until May. This internship is a big one. It’s at a psychiatric hospital an hour away from where I live and it’s not only super important but incredibly challenging. The patient’s in the hospital were sentenced there by the court system after they were found unable to withstand being in the prison system do to being mentally incompetent. If you have been reading my blog for awhile you know my last internship was at a reentry organization where I worked with recently released inmates and went to the DC Jail on a weekly basis. So this internship is exciting and challenging. I started it on January 3rd…so far so good. I can talk more about it later.

Dealing with stress in any form can be impactful on chronic illnesses. As many people with chronic illnesses know…big life changes bring about big health problems. Do I worry that this might happen? Sure. Going into this new internship is exciting and stressful and it has caused a lot of migraines just from changing my sleep schedule.

After then I graduate. And I will be done with school for a while (until I decide to go for my Ph.D.). I have been a professional student for … well… forever. I love school. I’m not too cool for school as the kids say. I’m too school for cool.¬†¬†

This will be the first graduation that I actually walk the stage for. I figure…well I didn’t walk for high school, when I graduated the interpreter program or when I got my BA in Deaf Studies from Gallaudet. But I am getting my MSW (Master of Social Work) from Gallaudet, so I might as well walk…even though I really don’t want to…it’s not something I’m interested in. It’s very stressful for me as a very introverted person. Also, I’ve been to graduations and just going causes me a lot of pain. By the end of it, I always feel worn out, exhausted, in an excessive amount of pain and have a migraine. So as a chronically ill person, it’s a lot for me too.¬†

But I was also threatened by my friend, Shelby (yea I’m calling you out)…. she said I have to walk or else. Or else what? Not sure. Didn’t ask. But let’s gather up the courage to do something I’ve never done before and walk that darn stage, right?! Here’s hoping I don’t trip and fall… Oy!

And then… getting a job? I’ve already begun the process of looking. But I’ve never had a full-time job. I’ve worked multiple part-time and/or freelance jobs most of my adult life. Until grad school, when it became too much for my health. I don’t doubt I’ll find a job, that’s not the issue. I’m more just worried about what it will do to my health. But maybe having a steady job will be good for me instead of the erratic schedule and heavy workload of grad school. Only time will tell.¬†

I also have a few other upcoming things that I will need courage for, but I’ll be explaining that in my next blog post.¬†

I believe that manifesting and mediating on courage each day will help me get through this year of unknowns. We can never know where life will take us but we can try to be courageous and brave while we are along for the ride! 

Do you have a new years resolution? Or a word you want to reflect for your new year? 

Here’s to a courageous 2019!

@rachelbob_here
Image description: Life shrinks and expands in proportion to one’s courage – Anais Nin

 

 

 

 

 

2018: Reflections of a chronically ill 30-something

image description- dont expect any new years resolutions from me i plan on staying the same awkward sarcastic foul-mouthed delight that youve all come to know and love
image description- dont expect any new years resolutions from me I plan on staying the same awkward sarcastic foul-mouthed delight that you’ve all come to know and love

As I write this 2018 is drawing quickly to a close and oh what a year it has been: emotionally, healthwise, politically….don’t get me started.¬†¬†As I am writing this from my bed curled up in a fleecy warm throw blanket while three of my four fluffy cats are lounging on the heated blanket I keep at the end of my bed.¬† And I am here ready to start reflecting on what 2018 has been like and what 2019 might bring.¬†

2018 has been filled with so many ups and downs. 

Health: I struggled with chronic throat infections for 9 months until I had my tonsils removed in July 2018, which was also my first surgery to date. I was diagnosed with hypothyroidism and then Hashimoto’s Thyroiditis, my first official autoimmune disease..soo exciting. I started Immunotherapy for my allergies, asthma and chronic bronchitis. I have had two rounds of botox treatments for my chronic migraines which will hopefully reduce my migraines long term.

My IC has been waxing and waning poetic with me all year. After my tonsil surgery, it seemed to go into hiding for a bit…maybe to give me a short break? But the last two months it’s come back with a vengeance¬†and I’m in all the pain and just living the IC dream… which is to say I go to the bathroom 4-5 times a night plus some other stuff, which I’ll spare the details on right now.¬†Am I missing anything?… hmmm I think that’s it… I think that’s more than enough. It’s been a busy year for me and my health!¬†

For 2019, I would like to see more health improvements. I would like the botox and immunotherapy to actually work and show signs of improvement. 

Educational: Going to grad school as a chronically ill person is a challenge, to say the least. But I just keep on truckin and now I just have one semester left! Granted it will be the most challenging semester because it will be a full-time internship where I work 32 hours a week (4 days a week) at an internship that is an hour drive from where I live. But going into 2019, I am looking forward to the internship and all that it will bring. 

Sleep: There are days I struggle to get out of bed because my whole body is rebelling against me and is screaming in pain.¬†So at some point in the year, I started setting my alarm for 30 minutes before I needed to wake up so I could take some pain meds and/or CBD oil. And then I go back to sleep until my alarm goes off again. By the time I wake up, I am in much less pain. Looking back on this… this was a good choice,¬†I will continue to do this going forward.

Emotional: As you can imagine all of this has had a lot of impact on my emotional well-being. Along with some other family issues that have been going on. I have been struggling with my mental health in 2018. But in 2019, I am really hoping to get a hold on it and this is something I will be talking about more in the weeks to come here on the blog. 

Relationships/Family: Relationships of any kind can be beautiful or devastating. I have been so fortunate to have friends and family support me along my journey. My best friends who are always there for me, even if we hardly ever get to see each other for one reason or another #gradschoolife. I have also had the blessing of finding a new family in Aaron’s family this year. His mom, as well as his brother, and sister-in-law plus their 3 kids have really become a beautiful family to me that I never expected.¬†

But I have also had the misfortunate of having devastating losses this past year. Some in the form of deaths in the family and others in the form of bridges being burned… but what I have learned from it… is that no matter what happens, life goes on and there is nothing we can do to stop it.¬†

Image description- In three words I can sum up everything I learned about life- it goes on
Image description- In three words I can sum up everything I learned about life- it goes on

Love: And, of course, there is Aaron who is right there with me no matter what, even when times are tough. We have a beautiful family together…Me and Aaron, our son, Reid and our four fluffy cats. We don’t have an Instagram perfect life and I don’t really trust people who do…or rather claim to have that. But push come to shove I know we are in it together when things are tough.¬†¬†

Here are a few family pictures we took this year. All of our pictures were taken by the amazing Tiffany of TMGSFotography. She can also be found on Facebook at TMGSFotography, she is local to DC/MD.

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Image description: Picture of Rachel, Aaron, and Reid all smiling but not looking directly at the camera. Photo courtesy of TMGSFotography

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Image description: Picture of Rachel, Aaron, and Reid all making funny faces at the camera and sticking out their tounges. Photo courtesy of TMGSFotography

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Image description: Picture of Rachel and Aaron holding hands and walking with their backs to the camera and then looking back to the camera and smiling.  Photo courtesy of TMGSFotography

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Image description: Picture of Rachel and Reid holding hands and facing each other smiling and laughing. Photo courtesy of TMGSFotography

Will 2019 be better than 2018? I sure do hope so. 2018 was filled with love and loss…ups and downs. But aren’t most years? I think that every year we hope that the next year is better than the last and it can be easy to forget that each year comes with its own set of challenges. I’m not being pessimistic, this is more realistic actually.

As a chronically ill 30-something who is going into my last (and most challenging) semester of graduate school, it’s easy for me to say that I am going into this new year with a brand new challenge. Am I looking forward to it? sure. Am I nervous and anxious? You bet! I have to earn 500 hours at my internship, from January 3rd to May 6th. So New year here I come! Jumping right into my internship…rolling up my sleeves saying EFF THIS, lets goooo!!!!

Okay, I’ll stop myself here. But I have so much more to say about resolutions and goals related to health. Expect another post soon!¬†

See you all in 2019!

image description- fireworks lightig up to say happy new year

A New Diagnosis, Immunotherapy and More

Image description: Hashimoto’s is hard enough without people thinking that I feel fine because I look fine. I NEVER feel fine!

Wow.. it has been WAY too long. This past fall semester at school and in just in life has just been … what’s a good word for it???

Hectic. Relentless. Chaotic. All of that and then some.

So much has happened and I don’t even know where to begin. I’m not sure where I left off. But let’s just pick it up here.¬†

-In July I had my tonsils removed which cured the chronic infections in my throat!  Effectively ending what I unlovingly called Strepgate 2018. (And you can also read Strepgate part two here)  woohoo! One problem down! 

-But then I was diagnosed with Hashimoto’s Thyroiditis. At first, it was just a diagnosis of hypothyroidism and then with further testing, my doctor found that it was, in fact, Hashimoto’s. And for those of you unfamiliar with Hashimoto’s, it is, in fact, an autoimmune disease. **Woohoo my first official autoimmune disease!!! …. yeah… anyways. It’s an autoimmune disease where the immune system attacks the thyroid. I’m pretty asymptomatic and it was caught pretty early on for me, although I am always cold which explains that. So that’s fun…. or something. I have started taking¬†Levothyroxine, starting at 50 MCG and have slowly worked my way up to 88 MCG over the last few months.¬†

But don’t worry I’m not letting this keep me down. I’m still trucking through graduate school like it’s my fulltime job…. because it is. I have one semester left and I basically want to die.¬†

At some point in time, I had botox for my migraines which¬†was insanely painful. It was like 32 needles being jabbed into my head. But totally worth it. Not that it cured my migraines…it didn’t lol. But it did¬†reduce the length and pain level which is saying a lot. And this past Friday, I went for a second round of botox! Yikes, spikes! But my neurologist has assured me that with each round of botox that my migraines should improve even more. So fingers crossed!

And speaking of needles, I began immunotherapy also. But what the heck is immunotherapy!? Well, let me tell you. It’s for allergies. I got in-depth allergy testing done at the beginning of the summer… A lot happened over the summer for me healthwise. Turns out I only have like three allergies…one kind of grass, one kind of tree and cockroach dander lol. BUT because I have asthma and get severe bronchitis every year (without fail). It has been recommended by multiple doctors that I try immunotherapy and hopefully it will improve my asthma and bronchitis issues. And you know what… why the heck not? I will do what it takes to improve my health.¬†

So what does immunotherapy entail? Well, my allergist creates special allergen cocktails for me and I give myself shots every other day for two years! Yep, you read that right. Do not adjust the dial. I had to go to her office once a week for three weeks to get immunotherapy training (re: learn how to give myself shots) But eff that… easy peasy lemon squeezy. I have enough health issues… I’m not queasy about it, unlike my dear boyfriend, Aaron. Poor guy, any time he sees my needless out on he gets sickly looking.¬†

Meanwhile, I just do what I got to do… because who knows..this could do the trick and make all the difference between yearly bronchitis or not! I’m down for it!¬† So I’m here for it… giving myself¬†shots¬†every other day for two years.

-My interstitial cystitis was quiet for a while after I had my tonsils removed but in the last month it has flared up with a vengeance as if it was just waiting for me to think I was in remission and I could pee comfortably for once in the last 4 years. and then BAM! A killer bladder infection. Antibiotics and an antifungal, for a month, because it’s go big or go home over here.¬†

-And I just completed my second to last semester of graduate school, getting my masters in social work, with a 4.0 GPA. It’s not easy being a full-time student, step-mom, cat-mom, and partner to my boyfriend while chronically ill. Next semester is my last semester and I will have a full-time internship, which should be interesting, to say the least.¬† It takes a lot of planning and going day by day.¬† Some days it’s not easy… it’s exhausting, relentless and chaotic.¬†

Until next time… let us all remember that you don’t have to be perfect to be amazing.

 

 

Live like a Warrior

image description-you dont look sick i know i'm just so awesome i can look this way and be chronically ill
image description-“you dont look sick” I know I’m just so awesome I can look this way and be chronically ill

“Fight like a warrior” – Matisyahu

In the chronic illness community, there is some debate about whether or not being called a “warrior” is a good thing. This is because a warrior is related to fighting which could mean that one is fighting themselves constantly. And while that is a distinct possibility and there are people who struggle with fighting against themselves and even I do that sometimes…where I fight against my chronic illnesses- leaving myself feeling only worse.¬†

The reason I like being called a warrior is so much more than that. A warrior can do more than just fight against themselves. 

Here are some definitions:

Warrior. noun.

1. A brave or experienced or soldier or fighter.

2. Any of a number of standing poses in yoga in which the legs are held apart and the arms are stretched outwards.

3. A person who shows or has shown great vigor, courage or aggressiveness.

I am a warrior because I fight hard to get up and live the best I can each day. The past couple of months since my last post have been hard. I have been completely immersed in my health this past summer. My hypothyroidism, migraines, throat (chronic infections) respectively. 

Goings on

For my underachieving thyroid:¬†Overall things are steady with it right now, so that’s the best news to date. score!

For my migraines:¬†Over the summer I had quite a few different tests to look at my brain and see what is going on in there. I had an EEG (this is like an EKG but for the brain specifically), MRI, MRA, and seeing an ophthalmologist to check and make sure nothing is going wrong with my eyes. The EEG was slightly abnormal so I will be seeing another neurologist who specializes in seizures very soon. And finally, I will be starting botox (for migraines) on September 14th. It’s not botox for wrinkles, promise. Google it. My neurologist has high hopes that it will help my daily chronic migraines lessen. *fingers crossed*¬†

For my throat: I had a tonsillectomy about one month ago on July 26th. And it was really painful, challenging and just all around sucky to heal. Tonsil removal for adults is completely different than it is for kids. Kids heal from tonsil removal in 5-7 days, adults heal in 6-8 weeks. Youth is truly wasted on the young….they just don’t know how good they have it. Plus my healing is slowed down a bit by all my chronic illnesses and jenky immune system.¬†

My boyfriend, Aaron, took great care of me during the first weeks after my surgery. Getting me twice daily Slurpees. But honestly, my throat is somewhat sore and while I’m working my way up to hard foods…after I eat them my throat hurts so badly that the only thing that soothes it is a nice cold Slurpee. So he willingly makes endless Slurpee runs and its amazing.¬†

Too School for Cool

Here are the facts… the new semester began on Monday, August 27th, ya’ll.¬† Just one month after my surgery. Was I ready…well in theory…nope. I began doing some coursework a week before the semester started so as to get a headstart which never hurts for me, especially with my health, I am often falling behind or at least feeling like I am falling behind.¬†

Graduate school is challenging. Not just like this is college so it’s hard, but whole other level hard and I am so fortunate I have survived to make it into my last year. Don’t get me wrong…I love a challenge. School is my favorite thing ever. This is officially my last year…two semesters to go! It’s bittersweet. I want to enjoy my last year but it’s hard as a chronically ill person because can I ever really enjoy anything fully? It’s a different kind of challenge because often I am just trying to get through things as a suffer through health challenge after health challenge.¬†

The important thing is communication with my professors and getting accommodations when possible. Universities and colleges should have an Office for Students with Disabilities (OSWD)that provide students with accommodations. This is not just for students with visible physical disabilities or ADD/ADHD and the like. This can be invisible chronic illnesses as well, as long as they are well documented by a doctor. 

My OSWD accommodations include:

* Extension of time on homework provided the extension does not substantially impact the student’s ability to participate in class discussions and activities, threatens the academic integrity of the curriculum or impede the accomplishment of the learning objectives.¬† The student must discuss this accommodation with his/her professors.
* Flexibility with regard to attendance. The student shall discuss this accommodation with her instructor in order to ensure that the number of missed classes does not threaten the academic integrity of the curriculum or impede the accomplishment of the learning objectives.
* Permission to take brief breaks during class.
* Permission to use a laptop during class for the purpose of taking notes.
* Instructor to alert student before flashing lights. You might think this accommodation is odd because who flashes the lights in class?!?! But maybe you read my about me page or maybe you will in a minute. But the shortish story is I go to Gallaudet University, the only Deaf Liberal Arts University in the world. Which is just like it sounds, a deaf university where there is no voice talking and while I am not deaf, I am fluent in American Sign Language (ASL) because my grandparents were Deaf. And it just happens that my boyfriend, Aaron is Deaf as well (also convenient after having my tonsils out when I couldn’t speak!). A common practice in the Deaf community to get a group of people’s attention is to flash the lights a couple times¬†but flashing lights triggers my migraines…now that’s unfortunate! Which is why it is in my accommodations. And now you know…and knowledge is power!)¬†

My accommodations are game-changing for me; they make all the difference between passing and failing. I can’t remember if I mentioned it on my blog here before so I don’t know if I have a post to link…but I am on the OSWD Student Advisory Board, going on 2 years now, because that is how much I believe in supporting OSWD and the students who need their accommodations.¬†

So what is a warrior? 

Am I constantly fighting something you can’t see? …maybe. I’d like to think of myself as fighting for my life…as normal as possible but also not. I’m not normal…whatever normal is.¬† I get exhausted after unloading and loading the dishes, I can barely carry the laundry basket down to the basement to wash a load of laundry without feeling like my body will give out… but I never stop trying…I never give up. To me…that is a warrior.¬†

What is a warrior to you? Are you a warrior?  

 

 

A Trip to the Neurologist

image description- Oh I'm fine, just faking a migraine so I can get some botox in my face
[image description- Oh I’m fine, just faking a migraine so I can get some botox in my face]
Today I went to the neurologist for my migraines which have been worsening over the past year and a half.¬† I’ve been in and out of doctor’s offices for my migraines for over a decade now. I’ve tried over a dozen migraine medications, neurologists, ENTS for vertigo and so on.¬†

But recently everything has been much worse. I have migraines with aura. That is flashing lights in eyes and increased light sensitivity. But now it’s even worse, I have to close my eyes when lights are turned on and off in a room because lights start flashing in my eyes otherwise. It’s frustrating. And recently, any sudden darkness has caused flashing lights in my eyes, like driving under bridges…which as you can imagine can be dangerous.¬†

So I finally got in to see a new neurologist. I was anxious to meet him because my primary doctor of 11 years warned me he might scare easily and I can be pretty overwhelming with all my health issues. But he immediately was friendly with me and interested in all of my health issues, not just my migraines and vertigo. 

I can’t even express how important it is for chronically ill people to be able to trust their doctors and for the doctors to be able to look at us as a whole person and not just as the one body part that is their specialty. When I was first diagnosed with interstitial cystitis, my urologist that I was seeing basically looked at me like a giant walking-talking bladder. She never looked at other parts of me and how it impacted my health. I hated that and it made me stop going to see her.¬†

But looking at a chronically ill person a whole being, in a medical and holistic way, is beautiful in its own way. Most chronically ill people will tell you it’s hard to find a doctor like that…but when you find someone like that, you hold on to them for as long as possible.¬†

So today, this neurologist, looked at each of my illnesses and medicines and how they impacted my migraines. I was impressed with his thoroughness. He seemed to really want to help me. He didn’t rush through the initial exam. I hate when doctors do that. There’s nothing worse than feeling like a second or third priority to a doctor.¬†

We made a plan for my migraines…a big plan. A migraine plan.¬†

  • Get an MRI (I did have an MRI about 10 years ago but it showed nothing)
  • Get an EEG (Which is like an EKG¬† but for the brain, so it detects electrical activity in the brain)
  • Go to the ophthalmologist to check for papilledema (which is when there is increased pressure in or around the brain which causes part of the optic nerve inside the eye to swell…this can cause visual disturbances and headaches)
  • Wean off of migraine abortive medications (Sumatriptan and Fioricet)
  • Start Botox for migraine prevention.¬†

This is a big migraine plan, to say the least, there’s a lot that is going to be happening along side of my surgery in July.¬†But sometimes that is just how it goes…when it rains it pours.¬†

Botox for migraines 

Some people may not be familiar with botox for migraines. Let me assure you, I am not making this up. This is quite a real thing. https://www.botoxchronicmigraine.com/ is a great place to start getting information about it. But I can give some basic information about it here.

Fast facts about Botox

  • Botox was approved by the FDA in 2010 to be used for chronic migraines.¬†
  • Botox for migraines is for prevention for people who have at least 8-9 migraine days a month. I have migraines daily if you were wondering.¬†
  • The botox injections are done with a small needle, that feels like a pinprick, that are done all around the front, sides of the head and back of the head.¬†
  • Injections are given every 12 weeks by a botox specialist, who is a doctor, that is specially trained to give the botox shots.¬†
  • About half of Botox annual sales are from migraine and other non-cosmetic uses.¬†

So as you can see Botox for migraines is a big thing in the Migraine Community. It’s something I have read about often since it has been approved by the FDA and I always read stories about how great it works for people with really bad chronic migraines, such as myself. Although I did not always have daily migraines, I do now and have for quite some time. I think it will be an interesting treatment to try out and something different that will, hopefully, break me free from my chronic daily migraines.¬†

Where do we go from here?

Who the heck knows! I have a lot of stuff to do over the summer related to my health before the Fall semester begins at the end of August. A lot of doctors appointments, tests, and surgery. So I can only just go day by day down this chronic road I’m on and hope that with each step I take things will get better. I have heard a lot of good things about Botox for migraines so I am looking forward to trying something different.¬†

Having multiple chronic illnesses is difficult and it’s important to have a support system in place. Friends, family, therapists who can support you through times like this…that I am going through now where basically my full-time job is my health. I have a lot of doctors appointments coming up that I don’t feel comfortable driving home from (like the EEG, the Botox injections and obviously my surgery), so, fortunately, my friend Shelby will drive me or my Boyfriend, Aaron. But that’s why it’s important for those of us with chronic illnesses to have support systems in place as such so that we have a friend or family member to turn to when there’s an appointment coming up and we need a ride.¬†

But overall, my end goal here in relation to this post is to decrease the number of migraines I have monthly. And if that means sticking a bunch of needles in my head every few months… I’m willing to try it. That’s just where I’m at right now in life. Needles in my head sound better than daily migraines. Let’s do this!¬†

image description-The only time taking a hammer to your own skull seems like an appropriate solution.png
[image description-The only time taking a hammer to your own skull seems like an appropriate solution]
 

 

 

Off to see The Wizard

 

IMG_4439
[Image description: a wooded area with a large green sign with silver lettering that says Land of Oz]
I know I didn’t post last week that’s because me and the fam (Aaron, Reid and I) were off to Oz!¬†And by that, I mean the Land of Oz in Beech Mountain North Carolina. This is basically my dream come true. I have been obsessed with all things Oz-related since I was in the womb.

A true Ozian through and through

The Wizard of Oz was the first movie I ever loved and watched on repeat. I have multiple editions of the entire Oz book collection, of which there are 14 original books written by L. Frank Baum, most people don’t realize there are so many. The Wizard of Oz is based on the books The Wonderful Wizard of Oz and (loosely) Land of Oz.

And then there’s the Wicked series, of which I have all the books. And I have seen it twice on Broadway. And I’d love to see it again soon. Plus the Dorothy Must Die series only for those hardcore fans …it’s really intense and sheds a whole different perspective on what might have happened (not for children at all, very gruesome and makes Dorothy and all of Oz turn out to be quite evil…gotta love a nice perspective change though)

My house is covered with Oz paraphernalia. Magnets, signs, clothes, cards, dolls. And now I get to share it with my 7-year-old son, Reid. He is learning to love the magic of Oz too. And it’s nice to have someone to share it with. Afterall, The Wizard of Oz is for young and the young at heart.¬†

Here we are Halloween 2017. At Reid’s request, the whole family dressed up as The Wizard of Oz. From left to right: Selena (close family friend) as the Wicked Witch, Me as Dorothy, Fidel (Reid’s Step-Father) as Lion, Reid as Tin Man, Aaron as Scarecrow and Rayni (Reid’s Mom) as Glinda the Good Witch of the NorthIMG_0212.jpgIMG_1843.jpg

To Oz?! To Oz! or maybe its North Carolina! Either way…yay!¬†

We drove the long 8 hours to North Carolina. And I would be remiss if I didn’t talk about my health on my blog about my health while discussing this long journey to Oz. Fortunately, I didn’t have to walk the whole way in heels (which is the movie version of course) like Dorothy did just to get to the Emerald City. But nonetheless, the trip which was from Wednesday night to Saturday night left me in bad shape. Just three days, but those three days were jam-packed with stuff to do and fun-filled stress.

We had a ton of fun, the three of us. We did a lot of stuff. We went to local Deaf schools in North Carolina and Tennessee and had the opportunity to visit with family. But that’s a lot for three days. Especially for a Reid, who is 7 years old and has Autism and ADHD. And for me and my litany of health issues. Between the two of us, we were irritable and cranky….well mostly me. But we still managed to have a great trip.¬†

The Land of Oz has very limited days that it is open but I highly recommend it. We went and we did request an interpreter and it was, in fact, their first time working with Deaf clients but with guidance from us, they were able to find an interpreter for us which was awesome and quite accommodating. 

A vacay by any other name

Vacations are many things to many people. To some people, a vacation is a time to relax and time to rest. To other people, a vacation is a time to actually go out and do a ton of fun stuff…that makes it feels like you need a vacay from your vacay by the time you get back. Well by the time I got home I had to just lay in bed for days and honestly, I’m still recuperating from it, a week later. By the end of it… my vertigo which is related to my migraines was flaring badly (as well as actual migraines), terrible IC pain, awful PFD flare (pelvic floor dysfunction) and even my throat started hurting dreadfully again (which has generally been under control with antibiotics (until my tonsils are to be removed please see previous posts one this Strep-Gate Part 1 and Strep-Gate Part 2).¬†

At one point, I made the huge mistake of taking Reid swimming in the hotel pool. Which honestly I have avoided pools for a long time because I have read that the chemicals in pools can irritate and anger IC. But I did it anyway. Oh, the mistake I made. Do you ever do something knowing it will probably hurt your body but do it anyway because you think¬†hey maybe it won’t?!?¬†¬†

It was after that that my IC and PFD started flaring up something fierce! The PFD made it difficult to pee in the first place. If you’re unsure what I mean…make a fist squeeze it really tight…that’s kind of how it feels when I (and many other people with PFD) have to pee and then slowly release your fist over the course of 15-30 seconds… isn’t that a nice release? But imagine that happening over a longer period of time… like 30 seconds to 2 minutes. And when I finally can pee it bursts out with the white-hot burning razor blades. I hope that really set up an idea in your mind of what an experience is like going to the bathroom for someone with IC and PFD.

It’s cruel and unusual punishment that our bodies inflict on us. We, as humans, take using the bathroom for granted until you can’t anymore. On the days where I have little to no pain when I use the bathroom, I am so grateful and appreciative of each moment of it. And that could sound silly but you just read what I wrote so maybe you understand what I’m saying just a smidgen. Meanwhile…moving forward with the story to more happier things!¬†

Time for a few pictures!!!!

IMG_4478.JPG
[Image description: looking downward you can see the bottom of a blue and white gingham checked dress with white tulle peeking out, Rachel’s feet with tattoos on each wearing ruby red¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬†slippers (flats not heels) standing on the yellow brick road]¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬† ¬†¬†Holy moly ya’ll I’m standing on the yellow brick road! look look!
IMG_4483.JPG
[Image Description; Aaron dressed up as Scarecrow standing in front of a fenced in fake cornfield with his arms up and awkward to make it look like he is hung up on a pole]
IMG_4485.jpg
[Image description: Reid smiling big and posing as the Tin Man with a hand on his hip and the other hand holding an ax that is placed in a tree stump that is part of the Land of Oz set up.]
IMG_4492.JPG
[Image description: Reid dressed as Tin Man walking down the yellow brick road. As the viewer, we only see him from behind as he starts his journey to the Emerald City]
IMG_4564 2.jpg
[Image description: From left to right Rachel dressed up as Dorothy holding the real Dorothy’s Basket and smiling big standing next to Dorothy, both of them are wearing blue and white gingham dresses. Aaron on the other side of Dorothy dressed as the Scarecrow with sunglasses on (unfortunately) and in front is Reid smiling as the Tin Man with his ax and heart] Sunglasses??!?! Come on Scarecrow! Otherwise this is such an awesome pic! Dorothy let me hold her basket!!! #nerdalert
IMG_4568 2.jpg
[Image description: My Two Dorothys! Rachel dressed as Dorothy smiling with Dorothy, also smiling, both wearing blue and white gingham dresses. Both Rachel and Dorothy have similar color auburn red hair.]   Is it just me or do we have like the same color hair? I realize that was not her real hair, it was a wig but just sayin! This is my real hair and omg!
IMG_4559.jpg
[image description: Rachel, Aaron, and Reid or Dorothy, Scarecrow and Tin Man Standing in front of the Emerald green gates to Emerald City]¬† ¬†Again with the sunglasses Scarecrow??! This could have been our holiday card… AHHHH
IMG_4713.jpg
[Image description: Rachel, Aaron, and Reid also known as Dorothy, Scarecrow and Tin Man pose on a pink platform surrounded by large beautiful flowers in Oz]  Finally Scarecrow without those sunglasses! sheesh. This is a pretty cute picture.  I approve!
There’s no place like home…

On the drive home, we saw two beautiful full double rainbows (pictured below). Through Tennessee, to Virginia, we drove through a big thunderstorm…no tornado… But the aftermath of which left us with those beauteous and magical rainbows that filled my heart with so much joy from an otherwise exhausting and painful trip.

Honestly, I wouldn’t trade that trip for anything…although I would have adjusted it some and added time to rest for myself and make sure to do some more self-care during that time. Everyone needs some self-care, some more than others. For those of us with chronic illnesses, we need to be sure to take extra care of ourselves on trips. And then we when get home allow ourselves time to rest and adjust back to life.¬†

Arriving home was just what the doctor ordered. I was so happy to just climb in my bed and lay there for days and days with my 4 cats.¬† A trip to Oz is priceless…to be sure, but knowing in your heart of hearts that there is no place like home…well that’s a lesson, , we all have to learn, like Dorothy did, one way or another.¬†

IMG_4669 2.jpg
[Image Description: Dense green trees and grass under a blue sky with two full rainbows, one rainbow is slightly fainter than the other, but both are distinctly there] Somewhere over the rainbow…..