Have you heard the stories about it taking years for someone to be diagnosed with an illness they suffered with?
Have you been one of the people who chalked that person up to “crazy” because they had so many complaints and seemed to always have something wrong?
Did you separate yourself from the person that was “sick” all the time?
Were you dealing with your own “issues” you didn’t have time to deal with someone elese’s issues?
Did you ever think that person was truly going through something that was difficult, unbearable, stressful and caused them to be alone and left to manage their health by themselves?
My story has been just this since 2013 after a hip surgery! Yep I was in my 30’s, running many miles a week and sustained a fractured hip! As I was healing from surgery, I started to have unexplained symptoms that kept popping up; joint pain and redness in most joints, rashes, hives, mouth sores, horrible migraines that would not go away even with treatment, stomach pain and bloating(I looked like i was 6 months pregnant most days of the week), and unrelenting fatigue!
Over the years I have had so many different things happen to my body that no one (even myself) could explain, so I just kept on pushing through. Little did I want to realize that pushing through was making everything in my body worse.
I was having daily pain, headaches and horrible fatigue. Eventually developed horrible muscle weakness, forgetfulness, brian fog and clumsiness. There are days that I can’t complete a task without getting so dizzy and lightheaded that I start to feel like I am going to pass out. This makes it very hard to work, complete tasks and have fun with my family.
I saw multiple medical providers who would say “it could be….”, “I bet it’s…..”, “you are high risk for…..”. They had me thinking I was nuts!!!! I even had a functional med specialist tell me “stop trying to find the diagnosis and just treat the underlying cause…..”.
My head was spinning. I knew there was something wrong, my body wasn’t doing all of this for no reason. I knew I wasn’t nuts but was starting to think I was(like my friends and family sure thought.
I knew what I had to do but didn’t know where to start! So I started with my most annoying symptom at the time. The horrible weakness and tremors that were limiting my ability to hold a pen, type and even do my hair.
This led me to a neurologist who tested me and said I was neurologically intact, yet my balance was off, I have patches of numbness in different areas of my body and horrible weakness with tremors. But he said none of this was related to a neurologic cause.
Talk about discouraging! I spent thousands of dollars with no answers.
I reached out to 6 different Rheumatologists, 5 of them didn’t see new patients or would not see new patients for up to 6 months. 1 was intrigued by my story and saw me the next week. He examined me, did bloodwork, ultrasounds of the joints and said he saw a lot of inflammation but no actual diagnosis as the labs came back normal. Chest X-ray was abnormal but was not related to a Rheumatologic disorder, “let’s just monitor for now”.
So, I did the next best thing since my lungs had some abnormal nodules and I was always so short of breath and had horrible exercise intolerance, I reached out to a Pulmonologist. Guess what! This Doctor actually listened. Through testing he did not find a pulmonary cause for my symptoms but that didn’t stop him from helping me. He had a feeling of what I was experiencing and helped me get the right testing and in with the right specialist. He took his time and explained things. He acted like he actually cared. He genuinely showed interest and empathy for what I had been going through.
This made all the difference as I finally received a diagnosis. Not one that I was happy with but I at least got one. Some may wonder what is so important about finding a diagnosis? Essentially I was going to treat whatever it was holistically, so you may wonder why I cared so much!
Having a diagnosis allows me to prevent flares(hopefully as this is a work in progress); educate others; not feel so scared about not knowing what is happening to me; explain to others why I may net be able to do something; and just know that I am NOT CRAZY!
I share this because I know there are so many people going through the same thing as me. I know how frustrating it can be to you and your loved ones. I also know that you need to follow your instincts and do not give up on yourself.
After several years of flares and feeling “off” and chalking it up to age, fatigue, stress, I had enough! I was tired of no one listening to me! This was causing stress to my mind and body as well as to my relationships!
When I finally had enough in 2021, I was determined to figure out what was making me so sick all the time. I went against how loved ones thought I should handle it; I stayed diligent; followed my instincts; stayed assertive; most of all I wasn’t giving up until I found answers. I was done hearing “it could be….”, “maybe it’s……”, “let’s wait and see……”. I had no idea what the heck was happening, but I knew that it wasn’t normal. Noone should live this way!
The day I heard my diagnosis of POTS was the day I cried. I cried from fear and happiness. I was happy to finally know that I was not crazy, but scared because I really didn’t know what POTS really was. I cry pretty much daily because this dumb illness has taken so much and continues to take from me.
Yes, some still ask if I am glad I found a diagnosis, yes I am! I know that I am not dying, I am not going to die from this crappy illness. I know that I can tweak some things in my life to make it not so bad. I know that I need to limit some things, but I don’t have to give up anything. I had to change some of the supplements I was taking. I need more rest and most of all I have to stay very stress free.
Something very important to me is to educate others! Something that was lacking for me over the entire process of illness, diagnosis and healing. I started to get embarrassed and hold back from friends and family. I was wondering if I was nuts, so I was sure others thought the same. I couldn’t keep up, so I backed out. I stopped sharing my symptoms with others for fear of sympathy, I didn’t need sympathy I needed an ear, laugh, shoulder.
I will not stop until I figure out how to overcome this dreaded illness so I can get back to living a fulfilled life without so much fear and discomfort and I urge you to do the same! I will continue to share my journey and educate anyone who wants to hear along my healing path!
I guess my message to you as you are reading this, no matter your symptoms or diagnosis, do not STOP and do not HOLD BACK! Figure out a new way! I know I will.