January 2022

Back from Mayo, but where did this all start?

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Back from Mayo, but where did this all start?

I just returned from a week long visit from Mayo clinic for a Cerebrospinal Fluid leak blood patch.  This was attempt number 5, well 18 actually.  I’ve had 18 blood patches, 12 targeted and 6 blind.  What on earth is this all from?  How did this happen and where do you go from here?  Yes, those are the questions I get asked but honestly those are the questions I ask myself.

My entire life changed with in late February/early March 2020.  Yes, 2020 – it was a horrible year for everyone.  My husband and I, along with our kids all traveled to meet my inlaws for a fun weekend away Valentines 2020.  We all stayed in a nice hotel in Fayetteville, Arkansas.  We ate dinner out and even did some axe throwing (not at each other of course.)  I had not really been feeling my jovial (yes, I happen to be a very jovial person) self the entire weekend but not wanting to be the Debby downer really just pushed through the yuckiness I was feeling.  I did end up with a headache the last night and went to bed early letting the others enjoy time together.

 We had a great visit and when it was time to head back home we all went our separate ways.  My inlaws and nephews headed back to Eastern Arkansas.  My oldest and her husband in their car and my husband and our two youngest in our car headed back to Missouri.  We had lived in this area previously and we were enjoying seeing how the area grew.  We were about 20 minutes into our trip when suddenly I was struck by horrible side pain and knew immediately it was a kidney stone.  There was no way I would make it home and so we shuffled the youngest with the oldest to continue home and we headed to the local Emergency Room.  The worse part of this story still in my mind is that as we got almost to the hospital I knew I had to vomit.  My husband pulled over as fast as he could.  He ran around to my side and opened my door just as I turned my head the other direction and vomited all over his 2 day old truck.  Yep, brand new truck and instead of just turning my head to the right and vomiting out the door, I turned my head to the left and vomited all over the truck.  Still to this day I have no idea why and I still feel so guilty.  He was great though, loaded back up and went the last block to the hospital.  As I suspected, it was a kidney stone.  After being hydrated and medicated they sent us back in the truck to head home to our own local hospital.  I have no idea if this kidney stone and the following surgery had anything to do with my leak but it was directly after this that my symptoms began.

After getting home from surgery and settling in to rest and recuperate I ended up developing a pretty significant bilateral pneumonia.  Mixed with a small untreated bladder infection that had been going on I again ended up in the hospital two weeks later.  During that last few days before finally going to the hospital for the pneumonia I had noticed a strange headache.  It felt like someone was squeezing all the blood out of my head and it was building pressure so bad along this horrible “whooshing” sound in my ears.  The pressure would pulsate getting worse with each pulse and the noise from the “whooshing” was so unbearable.  I remember being in the emergency room at this point not as concerned about my breathing or bladder infection but this PRESSURE and whooshing that, THAT  is what my overwhelming complaint was.

I spend the next 7 days in the hospital being tested 4 times for flu because I was running a fever, my O2 saturation stayed in the upper 80%.  I had a headache, body aches and no appetite.  This was the beginning of the Covid – 19 pandemic and they really were not testing anyone for it unless you had specifically come in contact with a positive case.  I was not tested for Covid, but was basically guaranteed by my follow up physician that this is what I had.

This was the beginning.  It was from this point that my search for help with this  “postural upright” headache and “whooshing” (now diagnosed as a Cerebrospinal Fluid Leak) began. I returned home from my latest attempts at a repair one week ago.  I lay here in my bed full time again.   I will begin to spend my time going back to document my entire journey with you.

Today I don’t want to be brave

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Today I don't want to be brave

I haven’t been here in a hot minute.  Partly because my life has been very busy with holidays but honestly I don’t feel good and I have terrible fatigue.  I look back at my blogs and I realize I put on a happy face (sometimes too often.)  Maybe too often.  I want to be brave.  I want to face everything with a positive outlook.  I don’t want to be the one who people say “Damn, she complains a lot.”
 
There is a huge history in my family of “categorizing.”  We’ve put each other into stereotypes…I think that is the word I’m looking for.  Categories such as if one is emotional they are called “needy” no matter the circumstance.  There is “the fat one” and they are the one everyone compares against.  The biggest one is the “hypochondriac”.  That’s a big one in my family.  Placing a person in a category is dangerous and it becomes even more so when it’s done by people who you are supposed to trust.  The danger in growing up with a hypochondriac category in your family is that an illness is always put in doubt.  My family has a history of very serious physical illnesses; the type of illness that should be taken seriously.  However, if you have multiple illnesses followed by complaining about another symptom you were placed in a category. You were “a hypochondriac”.  The typecasting that “you are just looking for attention” became a standard statement when someone complained of illness while I was growing up.
 
I just happen to have been the “needy” one and the “fat one”.  Those are dangerous typecasts but as you grow in life you learn that the position you were placed in as a child is not who you are as an adult.  The one I began to fear was being placed into the dreaded “hypochondriac” category. That category was seen as a vulgar mental illness and having it pinned to your jacket meant that it could ever be removed.  No. Matter. What.  I look now and realized that I watched it happen to one of my family members who in the end had an absolute problem and it kept them from being diagnosed properly.
 
I have lived in constant fear of being placed in that category all of my life.  The horrible condescending feeling that was dispersed upon that person actually made me fear belittlement and shame.  
 
I have an actual physical illness.  I have a very serious illness with incredible side effects. There are people who have it much worse than me, I know that.  Because of the fear of being in placed in the hypochondriac category though,  I hide as absolutely much as possible.  I suffer in silence.  I don’t let people in my life know just how serious it is.  I’m ashamed of looking weak, or making more of my illness than those who may be more ill than me.  I do this to my own detriment.  I do this to the point that with every doctors appointment I am “sure” in my mind they will find nothing wrong.  Whether I want to say it out loud or not, I am not well and they do keep finding things wrong.
 
Today I am going to complain. Tomorrow I am headed to Mayo Clinic in Rochester.  I want this so bad.  I want to be fixed.  I don’t want to live with this illness any longer. 
 
Today I am going to admit I’m not brave.