Julie Bock Hietpas JBH

First post: Oct 7, 2021 Latest post: Jan 22, 2022
Welcome to my CaringBridge website. I am using it to keep family and friends updated in one place. I appreciate your support and words of hope and encouragement. Thank you for visiting.

It all seems to have started with a tooth infection in Nov. 2019. (Holy crap... Almost 2 years now.) I think I went septic with this infection. I had uncontrolled fevers, weakness, lethargy - and I couldn't seem to overcome it. I was treated several times with antibiotics, even 30 days of antibiotic, but I still felt terrible. In spring 2020, I had increased weakness and I was falling. The boys would help me back to my room when I couldn't walk. I stopped using my office downstairs, because I kept falling on the stairs - it just wasn't safe. I started working from my bedroom. As things progressed, I had difficulty even sitting at my desk to work. Fall/Winter of 2020, I started using intermittent leave  (FMLA) at work because my symptoms seemed to be increasing rather than getting better. Spring 2021, I found myself back at the ER. I was extremely weak, lethargic, and was having trouble talking. My voice had become almost hoarse sounding out of the blue and continues to this day. Summer of 2021 I had to adjust my intermittent leave to continuous leave and talked with my doctor about short term disability. 

I continue to have the symptoms I started with. Over time it seems like something new is added in, just for fun. :) Let's see if I can give you my main symptoms... 
*Weakness: I have difficulty carrying anything, and at times I don't have the strength to hold myself up, or even to grip something. 
*Chronic pain: Muscle pain, all the time. I compare it to day 3 of having the flu- your whole body hurts and aches... That's my good day.
*Chronic fatigue: Ever been so tired it physically hurt when you were woken up? Or so tired you can't keep your eyes open? That's my normal now. 
*Brain fog: It's like I have holes in my memory. I can't think of words for everyday things. Or I forget what I was talking about mid-sentence. 
*Confusion: I am easily confused by simple things. With the fatigue, I also have difficulty determining what's real and what's dream world. 
*Lethargy: Take that pain, fatigue, confusion and brain fog and multiply it by 100... It's difficult to do anything like this. 
*Shortness of breath: I am short of breath doing simple things, like walking to the bathroom or talking. 
*Excessive sweating: I have never been someone to sweat. Now I sweat with minimal activity. Pick up laundry off the floor and I'm literally dripping with sweat. 
*Skin sensitivity: This one isn't as intense at the moment (knock on wood). But the slightest touch is painful. Even my clothes hurt on my skin.  
*Goosebumps: This is bizarre. But when I start doing more than my body can take I break out in goosebumps head to toe. I've learned if I don't rest when I have goosebumps, I will lose all ability. The boys will be carrying me to bed and I will have difficulty for the next 3-4 days. 
*Increased heart rate with minimal activity: If I walk from my room to the bathroom, my HR will be 120-128. If I pick up the laundry- it's over 135. 
*Heart palpitations: along with the racing heart rate, I have strong palpitations occasionally. 
*Open sores: I have been getting sores that don't want to heal. I have had testing and biopsies done when the first one hadn't been healing. All comes back normal. 
*Difficulty swallowing: more and more I notice I have more difficulty swallowing. I full on choked one evening. I was unable to breathe, unable to cough. I ran to Luke and pretty much passed out. Luke quickly gave me the Heimlich and I was able to breathe. (SO glad that boy was awake!) 
*Changes in my voice: hoarse sounding - I have to push air to be able to talk, which increases my SOB. 

Other things may pop up from time to time, but these are the main ones. I am working with my primary care provider, rheumatology, ENT, GI specialist, neurologist and neuromuscular specialist to try to figure out what is going on. I have a lot of symptoms of COVID long haulers,  but I have no way to determine if I actually had it. By the time we wondered if I might have, it was too late to do blood work. 

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