Coping with Chronic Illness: Dealing with Doubt

Lately my health has been extremely challenging. The ups and downs of this chronic illness roller coaster are hard. The ups aren't really all that high but any day of feeling even halfway decent is a huge contrast to what I normally feel like these days!

 

I have been deeply studying the book "Mind Over Medicine" and the docuseries "Rewired" which are both about using the power of the mind to heal the body. If you have ever studied the placebo effect, it is very clear that our mind plays a very powerful role in healing our body. We don't need to take a fake medicine or have a fake surgery in order to tap into the power of the mind to heal.

 

I have changed my thinking quite a bit trying to use these resources as a guide. Last month for the first time I truly believed with all my heart and not a single seed of doubt that I can beat these illnesses. Until this point there has always been a seed of doubt and a questioning of if this was something I would be dealing with for...

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In Sickness & In Health

When I was first hospitalized for Guillain Barre Syndrome I received immunoglobulin treatment for five days. At this point in time the paralyzation was mostly from the waist down and although I couldn't feel my arms, I could still move them. On the third treatment the entire right side of my body lost all feeling and movement from my head to my toes.
 
I had been in the hospital alone for six days and it was the first tear I shed. It was such a massively uncomfortable feeling that it really scared me and I was worried I was having a stroke. They rushed my doctor down and he felt it was unrelated but I asked him to stop the treatment. The doctor honored my request to pause the treatment and within the next hour I could move the right side of my face again and the intense loss of feeling had dissipated.
 
They started the treatment at a much slower rate and it didn't happen again. This was my first official hemiplegic migraine and I have had them ever...
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The Power of a Wellness Journal

 I created this wellness journal over a decade ago and just revised it last month to give it a few upgrades. I find this an incredible way to keep track of what is going on in my body, and my medical team really appreciates me bringing it with me to keep them fully informed. I first created it when I was having a health crisis and there were so many different things going on from day to day that I would forget to tell my acupuncturist certain symptoms and would only remember later in the day after the session was over. I realized I needed to start keeping better track and recording what was happening in order to have more productive doctors and acupuncture appointments.
 

I kept the design simple so if you are printing this out at home you won't use up all your ink! If you want it to be a little prettier, I would just recommend picking a color paper that makes you happy and print it out on that. There are ten main components the Wellness Journal...

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Watch Your Mouth! Body Shaming the Ill

I officially feel like my weight has been all over the spectrum. I have been pretty overweight, I have been toned and lean, and now I am underweight. From my own personal experience, I have never received as much criticism about my body as I do now! It is actually a little unbelievable to me. Nobody ever fat shamed me or teased me for being overweight.

On the other hand, my butt has always been a hot topic of comments since I was a teenager and although I mostly get compliments, they always just make me self conscious that everyone is paying so much attention to my rear end. One boyfriend in my early 20’s told me my thighs were beefy and I will forever think I look like a cow. It's funny how words can stick with you!

But overall, most people have never walked up to me and instantly criticized my body as their opening greeting. Now, that is no longer the case. Most people in my life see me and immediately tell me to eat something. 

I...

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Transitioning Home from the Hospital

The transition from hospital to home is always an interesting learning experience. I know the longer I am in the hospital the more my mind becomes consumed with how much I want to leave and get home to rest and have my freedom. Then I get home and realize just how weak and incompetent I am, and the true healing journey begins. I guess I know my own learning curve and how challenged I am when I return home, so it is no surprise that most people think leaving the hospital means you are essentially healthy again. I thought I would write this to help people understand what coming home from the hospital can look like and how they could help. They say for every day you are in the hospital, you should expect to need at least one week of recovery. That means a five day stay can cost you at least five weeks of recovery.

 
 

I took this photo to remind myself of the struggles and journey I have been on but I will be a little vulnerable and share it...

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Illness Etiquette

What not to say to people with chronic illness! (Part Three)

This post is going to come from an emotionally charged head space because I am currently in the hospital and fighting my hardest just to get through the day. I am trying my best to stay positive and hopeful but I am also feeling as weak and depleted as can be. I have to say that my spirit is beginning to suffer in addition to my physical body. I am also severely frustrated with doctors not listening and the disconnects that happen. Simple things like it taking five hours to receive migraine medicine which means my migraine is going to go from a 3/10 to a 9/10 on the pain scale. Now that you know a little about what is going on, here is the text that got under my skin.


 
 

I was truly exhausted so when I got this text from my best friend I simply called her out on it. Like many people, she struggles with knowing what to do or say when I am in pain so I tend to have a filter with what I share. Also,...

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Suck It Up Buttercup!

Part Two of what not to say to people with chronic health problems!

I asked one of my clients with multiple health issues if she had anything contribute on this topic and she instantly responded: "Suck it up."

I am grateful I haven't heard this one myself! This one is pretty rude and inconsiderate. I mean our only option while in a health crisis is to suck it up so do we really need to hear it from others? I clearly remember one day last month I was in so much pain and had such a terrible week that I was begging my doctor to put me in a coma and just wake me up when I was better. The last thing I would have wanted my doctor to say is "suck it up" and I definitely wouldn't want to hear it from loved ones either. 

Let's see, what would be a better choice of three words. I would go with "I love you" or if that is too strong, "I care about you." Have some compassion. Speak from your heart. Listen with the intention of understanding not responding. Communicate your concerns or...

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What not to say to people with chronic health problems!

 Part One of Four

I know the world can feel hard to navigate these days without offending one person or another so I don't want to add to the list of people you need to take into consideration BUT I think when you love and care for someone going through a health crisis, you want to be there for them in the best way possible.

Not everyone knows what to say or do in these situations so I thought I would share what I have experienced on the receiving end and you can at least see the inner workings of my mind. I think there are already quite a few lists out there on the topic but I am going to do this one slightly different. This will be a weekly series of two things not to say and what you could say instead because I know people want to be supportive and once I tell you all the things you probably shouldn't say, you are going to wonder what the heck you CAN say!

"Well, you look great!" I hear this all the time and I do honestly try to take it as a compliment so it doesn't...

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F*ck Fatigue!


This is my least favorite part about being sick. People that have never experienced fatigue can't even comprehend what it feels like. Most healthy people confuse fatigue with being tired. Let me tell you, I am not tired. Tired to me means sleepy like I want to go to bed. Fatigue means every cell in my body is traveling in slow motion at a rate that feels painful, moving my body feels like air has turned to peanut butter hence every step I take feels like a huge effort, and I am not sleepy - my brain is going to be wide awake as I lay in bed suffering and uncomfortable. Some days I feel like a prisoner trapped inside my pain/fatigue body.
 
 

I have no solution for fatigue. I can drink a quadruple shot of espresso with absolute zero change so caffeine is useless. I haven't found a food, a supplement, a routine, or any natural remedy that helps with it but I have found three things I take comfort in on my fatigue days.

One: Resting in bed with some upbeat...

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The Power of CBD

 
I recently started taking a CBD supplement and have to admit I was extremely skeptical at first. I guess I was hesitant because I couldn't quite grasp how powerful hemp could be since it is not considered a drug like marijuana. I went to a conference last fall when I first learned about CBD and Endocannabanoid Deficiency. I had never heard of this before and although it planted a seed in my mind about CBD, it did not inspire me to try it for my own health issues. I suppose since nerves only have the ability to heal 1mm per day, I felt a little hopeless that any thing could really help speed up the process.

The last few months I have been experiencing entirely different symptoms of severe and some times debilitating joint pain throughout my body and my fatigue has been back with a vengeance!

I currently have four different doctors opinions that are contradicting each other so I have felt a little lost and haven't been sure where to turn. I'm currently going...

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