A Special Look Into My Health Journey

I know many people who follow me, including friends and family, are always asking how I am doing, what I am doing, or about my health. So it is time to be completely honest and open about everything. 

First off, in no way, shape, or form am I writing this for sympathy. I don’t want your sympathy and don’t want your pity. I want to spread awareness about chronic illnesses and chronic pain. I want to inspire others to live a good life, even though they may be suffering. Don’t feel bad for me because I know there are so many people in the world that are struggling far more than I am. Everyone has a battle they are up against, and most struggles are invisible to the outside world. Even with all the pain I have been through recently, I still feel positive and optimistic most of the time. I think that this was meant to happen to me for a reason. I genuinely believe that I am going through this because I am strong enough to and so that I can help others in similar situations. 

Okay, for those who follow my health journey so far, or for new followers, I wanted to give a quick recap and get everyone up to speed. 

In December of 2018, my husband and I were traveling Thailand, and I injured my ankle. I could not walk for a few months and took the excruciating journey of learning how to use my left foot and ankle properly again. Since then, I have had on and off issues walking, foot and ankle pain, and crazy storms of other health issues. In early 2019 I started seeing many different specialists trying to figure out what was wrong with me. No one had any answers. That was until July 2019. 

This is the part of my story that not everyone knows about, but I am ready to share…

In July 2019, I was diagnosed with Arnold Chiari Malformation, which is a brain malformation. Most people have never heard of Chiari Malformation, and even some of my doctors didn’t know much about it. To break it down, when you have Chiari Malformation, the cerebral tonsils on the back of your brain are slightly larger and hang lower than they should. After I sat with my diagnosis for a minute, an image popped into my head of how I could explain this to other people. I imagined my skull as a pair of booty shorts and my brain as the booty. Basically, my brain or “booty” is just too damn luscious to stay in the shorts, so it just hangs out a bit. I hope you enjoyed that image! 

My brain is just too damn big for its own good! In all reality, this causes many problems because this part of my brain is now compressing my spinal cord. Most people who have Chiari are born with it, but many symptoms do not appear until later in life. 

What is even scarier is that there is absolutely no cure for Chiari Malformation. You can have brain surgery where doctors remove a small portion of your skull to create more room for your brain so that it no longer compresses your spinal cord. But, your Chiari can still continue to get worse, and some people end up having multiple surgeries. For some people, their Chiari Malformation never really affects them enough to get the surgery. Some people have one surgery and have success, and others may never find relief. Nothing like being diagnosed with something that no one can give you a clear answer on….

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Now you would think that a brain malformation diagnosis would be enough to sit on, but that isn’t the end of my story. Unfortunately, many problems just didn’t fit the mold for a Chiari diagnosis, and doctors are still puzzled. 

Since my husband and I relocated to California in June, I now have a new team of doctors and specialists here who are re-running all of my tests and ordering some new ones as well. 

So far, I have had enough blood taken from me to satisfy Dracula for a year.

 I’ve had an updated MRI on my brain and spine.

 I got the joy of experiencing what it was like to poop in a container to have a fecal sample collected.

And I had my second EMG test. For those of you who don’t know, an EMG is a test that measures muscle and electrical nerve activity in your body. There are two parts to the test: first electrical impulses are sent to specific body areas to stimulate your nerves and see how you react. I call this the electrocution phase because that is pretty much what it feels like. 

In the second part, a doctor takes a needle and inserts it into different muscles in your body to measure your muscle response when it is at rest. (This part of the test is not fun either). The first time I had this test done, I’m pretty sure I had PTSD for a few weeks after. A few days ago, when I had the test again, my husband said that the sheer look of terror in my eyes when they were sending electrical impulses through my body is something that will haunt his nightmares. So in a few short words, that was not a fun day, but I made it through and am definitely proud of myself for that! Moving on… 

Since 2019 I have tested back and forth for a positive ANA, which is an earmark for autoimmune disease. Doctors were initially thinking I either had Lupus or MS, but both diagnoses are on hold for now. My new primary care doctor informed me that typically it takes 3-5 years to get a correct diagnosis for an autoimmune disease because they are so hard to pinpoint. I had talked to a few other women with autoimmune issues and found out they struggled for years with doctors before they were finally given a diagnosis. I am currently only about 2 years in with my journey, so I will just keep pushing for answers.

Another answer that doctors have thrown around so far is Fibromyalgia. One doctor said she believed I had a “severe case” of Fibromyalgia. If you have never heard of this, basically, it is a catch-all disease. A lot of doctors still do not know much about this disease or what causes it. There is still a lot of misinformation in the medical community if this is, in fact, even a “real” condition or not. To simplify it, Fibromyalgia is where my body and brain interpret different sensations to equal pain sensations when there is no real physical cause of the pain. For the most part, people diagnosed with fibromyalgia struggle with a mile-long list of other symptoms. The hardest part for me is my doctors trying to sort out what pains and problems are caused by my Chiari versus possible Fibromyalgia versus possible autoimmune.  

Another aspect I wanted to touch on was some of my symptoms and problems. It is tough for me to be honest about some of the things that I go through, but ultimately, I hope to help others in the long run. 

My biggest problem currently is that I have absolutely no idea when or if I will have pain or how long that pain will last for. Two things that come and go the most are my muscle and nerve pains. Imagine that someone grabbed your index finger and put it in a vice grip and kept turning that grip tighter and tighter until you could feel your bones crushing. Yup have that in several different areas on my body… Or have you ever had a bad muscle cramp where it feels like someone is literally grabbing your muscle and twisting it like you would a dishrag to get all of the water out?… yep, have that too… Or how about random electrical impulses that shoot all over your body. Suddenly feeling like someone sent an electric shock up your arm or down your leg? Yup.

These pains for me come and go like the wind, and as bad as it sounds, I have almost gotten used to them at times. I can be in excruciating pain for 5 seconds, and then it will go away, and I will go on about my day. That pain can come and go a few times throughout the day. Still, when I look back, I can say, “that was a good day” because after the pain is gone, I move on and forget about it because that is the only thing I can do… 

Other times the pain can last for hours. Squeezing and burning muscle pain that comes and goes every 30 seconds or electric shocks every 60 seconds that can go on for an hour until I am curled up in a ball crying my eyes out. Thankfully, over the last 2 weeks, these pains have been extremely minimal, and I have felt great physically. 

Now let’s get into the list version! Some of the other symptoms I deal with on a day to day/month to month basis include; 

Headaches

Dizziness

Blurry vision

 Cognitive decline

 Slurred speech or tripping over my words

Not being able to remember the simples of words like “stove,” 

Tinnitus, or ringing in the ears

 Brain fog

Concentration issues

Memory issues

Stiff neck

 Jaw pain

Costochondritis- swelling in between my rib cage 

Elbow pain 

Wrist pain

 Inability to grip things and loss of wrist strength

 Extreme fatigue (not the oh I am tired shit, but more of “I am two hours into my day and I don’t have enough energy to stand and wash the dishes fatigue)

Which reminds me- sleep issues

Digestive issues

Extreme cramping

IBS

 Loss of feeling in my upper thighs

Hip pain

Excruciating pain in now both my feet and ankles, which makes me unable to walk at times

 I think that just about covers it… 

Obviously, I don’t deal with every single one of these issues every day. Most of them come and go, and when they are mild, I have just learned to survive with them. The mentally draining part is that I have no idea when they will pop up or go away. 

For example, a few months ago, my husband and a friend were getting ready to go to the beach. I was walking out the door, and all of a sudden, I had so much pain in the bottom of my left foot and ankle that I could not put it back on the ground. I tried for a few minutes and gave up in tears knowing that I had ruined our beach day. After about 10 minutes of sitting down, resting, and massaging my foot, I was able to put it back on the ground and walk around, and it was like it never happened. 

Talk about a mind fuck… I went for the rest of the day and had zero problems. Or take, for example, the day where I got a full 6 hours of sleep (good for me), but I was so exhausted that I could barely take the dog for a walk, but the next day I pushed myself to hike 14 miles. Some days are good and some days are bad. Some moments are good, and some moments are bad. It’s kind of like you took one of those trick bags of harry potter jelly beans and mixed them in with a good bag. You pull one out every 30 minutes a day, and you never know what you will get. 

Personally, my biggest problems are not physical. It is the mental and emotional toll that this takes on me. Which is a whole different bag of worms that I will get into another day… 

If you are still with me and you feel devastated or sad for me, stop right there. I don’t want your pity. I don’t want your condolences. I want to spread awareness. People live with chronic illness and chronic pain every day, and you may not have any idea who those people are because they don’t show it to the world. I know I typically don’t.

 If I am with friends or family or out in public and have bad pain, you usually won’t even notice. I will simply turn away for a moment or excuse myself to the bathroom or take a deep breath just to pull myself together for a minute. I don’t want attention. I want to deal with my pain and move on living my life the best I can. And that includes not dwelling on it. 

Many people may not understand how I can record all of these hiking videos or be so bubbly and happy all of the time on social media, but that is my real personality. Sometimes I am the most optimistic, bubbly person you will meet throughout your day. Other times, I am just smiling through the tears. Either way, in both instances, this helps me get through my day. Two miles into my 5 miles hike, I may have excruciating hip or ankle pain that will last for a mile or so and then simply disappear, but I keep going. I continuously try to push myself, especially physically, because I never know when I will have a bad day.

 But take warning that is also a fine line to balance. I enjoy pushing myself because the more physically active I am, the less pain I typically have overall. Still, if I push myself too far, then sometimes I am down for the count for a little while. It is just a delicate balance that I am still learning to live with. 

The biggest thing I want people to take away from this is that you can still have a good life if you live with chronic pain or a chronic illness. I know that are so many people out there living with much worse pain than I am, but they have overcome everything and are successful beyond their wildest dreams. You can be in pain and still live a good life. It may take a lot of time to build yourself up mentally to get to that point. I am still working on this, but every day it gets better. Rely on your support system around you and take comfort in your friends and family that love you. And last but not least, don’t be afraid to be vulnerable. It is hard to open up and be honest about what you are going through, but you might just be able to help someone else out along the way as well as helping yourself. 

So keep pushing toward your dreams. You are always stronger than you think. And most important, remember to always smile because your smile brightens the world. 

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