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When I was diagnosed with CVID, I thought that was it. I had been told the bad news, started treatment, and then it was time to move forward with my life.
About 5 months after my diagnosis, I was back home for Thanksgiving break during my sophomore year of college. After a few months of plasma treatments, I was feeling immensely better and I was getting a grip of my disease. I saw my immunologist, told him I was feeling like myself again, and then I had some blood drawn and I was on my way.
Thanksgiving break was coming to a close when I got an alarming phone call. My white blood cell count was bad… bad enough for my doctor to call me and tell me to go to a hematologist. Low white blood cell counts can mean a lot of things, one of which is leukemia. Needless to say, I was freaked out.
I started panicking and wondering if I should drop out of school. How am I supposed to go back to school and enjoy myself when I was just told that something else is wrong? What could this thing be?
I went back and tried to force a smile for the next few weeks and forget about my anxiety and anguish. But it was hard. I told a few of my friends, but I didn’t want this fear to ruin my life.
When I returned home again, I went to a hematologist. Luckily, he said that the counts were low, but it was nothing to be immediately alarmed about.
However, this started a whirlwind of things, from getting an ultrasound on my spleen and seeing it enlarged to finding out I had swollen lymph nodes all over my body. I had tons of blood drawn, multiple lymph node biopsies, a bone marrow biopsy (the worst), and lots and lots of scans.
A constant state of fear and anxiety
Every time something came up, I was wondering if horrible news would follow. Every blood draw, every test, every scan. It was unbearable. Sometimes, I would just cry on the way to these appointments and picture the worst.
One of my lowest points was on the way to one of my lymph node removal surgeries. I was getting it biopsied for lymphoma. I couldn’t stop crying and freaking out about everything. I remembered being so sad and in so much pain.
Anxiety about medical procedures is very real, and it can be excruciating
If you have a chronic illness, or had any medical procedures at all, you know it can be scary. Some people are calm as a cucumber, but if you’re like me, it can be an uphill battle.
Don’t make yourself feel crazy. It will get easier in time. You will learn more about your body and its patterns.
You’re allowed to be sad and worried if something unexpected is happening to you, and you’re allowed to be fearful of the results.
How I bring myself back to Earth
As I’ve written about before, the mind can be a war zone. The mind can literally take a mind of its own. It can tell you all of these crazy stories and lies until you’re ridden with fear.
Throughout many of these medical procedures, I did not have a lot of good coping skills. I basically just wallowed in my sadness and cried and felt bad for myself. There was a lot of “Why me?” going around.
I looked at myself as cursed and unlucky, so much so that I automatically expected the worst.
But, as time went on, I was able to shift my mindset. I still hate these medical procedures and I always will. I get a slight form of PTSD from all of the horrible medical things I have been through.
But, while it might not be fun, I know that it is necessary for my health. This is the journey to feeling better and uncovering anything else that might be wrong with my body. If I have another disease, I would rather find out about it early on so that I can get treatment.
It’s easy to want to put these things off. I tell myself that I’m so busy, I don’t to go give blood or I don’t want to get that scan. But I need to continue doing it for me. These medical procedures will help me discover what is happening in my body and help me get to know myself better.
A constant reminder
When I was going into a medical procedure that I thought might be scary or painful, I told myself this: “It is not my job to perform the procedure, it is the job of the medical staff.” You know that the people performing these procedures are trained professionals, you’re in good hands! You don’t have to go work. All you have to do is show up and be there. Many times, it’s simply sitting and being still.
I actually got “be still” tattooed on my rib cage. I told myself every time I walked into one of these situations that my job is to just sit and be still.
If you try to take control, you might just drive yourself insane. You can’t do anything to change the outcome of the test. If something is happening in your body, it’s already happening. And you know that you are strong enough to take on whatever comes.
Always remember: This too shall pass. It will be over before you know it, and you will be on the other side!
Treat yourself to some self-care!
Medical procedures can be taxing on the mind and body. If you have a difficult procedure coming up, make sure that you treat yourself. I bought this body scrub for the shower and it smells amazing and makes my skin so soft! It was a little gift to myself!