A Little Infection For a Normal Person Goes a Long Way For a Spoonie

Last week as I went into the hospital for a hemiplegic migraine I felt like I was getting a respiratory infection. I mentioned it a couple times to a couple different doctors but no one really wanted to deal with it since I was in with a migraine. Well by the time I came come Saturday I really wasn’t feeling good. Sunday was worse and Monday even worse. So I called my dr and and she called me out a prescription. Each of the following days I just proceeded to feel worse, worsening shorteness of breath, increasing cough, and increasing temp. Thankfully I had a hospital follow up with my primary care physician on Thursday anyway. She walked in and said “Oh Amber you look horrible.”  I laughed and said “Well that could have something to do with the fact that I haven’t slept in two days bc I can’t quit coughing or because I hurt like crazy!”  She sent me to the lab to leave a sputum sample and to the radiology department for chest X-ray. By the time I got back up to her office she had decided she was going to admit me to the hospital.  She wanted me admitted for 1. Pneumonia 2. Adrenal insufficiency (because my blood pressure was running low) 3. Low potassium 4. And lupus exacerbation.    ( I haven’t been able to have my IV Benlysta treatment for lupus since February 16 because I’ve been sick. So my lupus is out of control. 

So I was admitted under this really great dr. He really seemed to understand my condition. For the first time ever a dr who understand lupus!!!!   He was good with giving me pain medicine and ordered breathing treatments, iv steroids and Iv antibiotics. He also placed me in neutropenic precautions. Not because my blood counts were low but because I’m very immunocompromised. So, everyone had to wash there hands before coming in or where gloves, the door had to stay closed, no fresh 🌺 or fresh fruit.  Sadly, my pain slowly grew more and more out of control as the evening passed and I had a really hard time asking. I hate asking for more pain meds. It’s a personal thing. And my mom thinks I’m crazy. But it’s just me. Anyway. As the night continued led to more and more years bc not only did my joints hurt but my ribs hurt like crazy from all the constant coughing!!! Finally about midnight I asked for some IV pain meds on top of the pills I was getting. The nurse called and I overheard her calling (two hours after I asked for the pain meds) and told her I was there for BRONCHITIS!! She failed to mention the lupus exacerbation. Anyway. She came back in and said the dr said that since I was in last week for migraines and had iv pain meds I couldn’t have anything on top of what I was getting excepts toradol and IBUPROFEN!!! I literally didn’t sleep all night and spent most of the night coughing and crying in pain!! I have never in all the times I’ve been in the hospital received such poor care. That nurse could have cared less. She told me three times she was calling for a breathing treatment and never did!  

The next morning (I had been up for three days by this point) when my dr came in he asked me first thing what was going on with my pain situation. He said in my chart in the same sentence the provided that was called about the pain medicine the night before stated that I requested and refused The IV pain medicine. So I have no idea what that nurse told her. So my dr gave me IV meds orders first thing that morning. He also informed me that I did not have pneumonia. I had tested positive for the  RHINO VIRUS and also had viral bronchitis. So he stopped my antibiotics as they would not be doing any good. The breathing treatments helped so much. And the iv pain meds helped. And I was actually able to just relax. I finally was able to take some naps. And slept a few hours over night on Friday night into Saturday. 

It’s amazing. The Rhino 🦏 Virus is technically the common cold virus. But for a spoonie it’s a nasty nasty bug. They said it could take me up to two weeks to really get over the bug. I’m home now, but I still feel horrid. No energy, short of breath, coughing constantly and doing breathing treatments and even running fevers. And I’m having trouble getting my insurance to cover my pain medicine scripts. But you gotta love insurance. I’m just so glad to be home and in my own bed.  But I swear if one more person says “It’s just a cold.”  OMG. Yes it may just be a cold. But when you have no immune system this “Cold” is brutal. I’m sure you can all relate to this!!! Anyway. Sorry for this rant. But I just wanted to share my story bc I know I’m not the only one who experiences things like this!!!
-Amber 

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