Life After Meningitis – Give It Time

After nearly a month feeding the infection antibiotics and pain meds through the PICC line , my home care nurse visited for the last time to pull the two foot plastic tubing out of my arm. With a deep breath and a long yank my life line was gone.  The drugs would quickly wear off and life should get back to normal again, or so they said!

It was now a month since coming back from the brink, seeing the other side, and now wondering what life lay ahead?

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With the PICC line out – the body – my body – now went cold turkey off the antibiotics and allergy laden cocktail that kept it in a zombie state to heal. The first few days came the withdrawal off the drugs, off the antibiotics, and an awakening of sorts.

I was finally able to watch full episodes of TV shows, stay awake long enough to eat dinner with the family, go out shopping, and help with little chores around the house. Progress!!   I’m alive!!!   The withdrawal continued about a week until I was sent out to my first doctor’s visit since landing in the hospital.

By now, I was weaning off the pain meds and adding to a long list of groans and moans.  Aside from the everyday gripes – I was eager to find out when I could get back to work. Get back to life!  Eager to get back to a life away from the worn in sofa.

My illness didn’t change my extroverted nature. I still needed and wanted daily adult interaction, a reason for getting up in the morning, to contribute to my family, to the world, to have a purpose. Sleeping on the sofa resting – healing – just wasn’t filling any of those.

While being in a zombie like state my home care nurse and hospital doctors told me not to drive while feeding the PICC. I was now PICC free and wanted to try driving again. How hard could it be?  Well, if retraining the brain to walk and climb stairs was challenging, how hard would it be to drive again?

I convinced my husband and family that I could drive to the doctors office. It was only a few miles away!  I didn’t have to get on the highway and it was surface streets.   Oh boy was I wrong.   If it wasn’t for temporary brain fog from my illness..  these sure would be Darwin award winning actions.

I got into the car, turned the key to start the car, that’s where it started to go downhill.  I looked at the gears and had to figure out – how to drive a car- and what gear to put it in. What letter  “drives” the car?    Remember connections in the brain needed to be reconnected.  Ah ha… “D”, Success… I’m driving…. Sort of!    2010-07-15 12.37.40Gas / Brake – those were picked up quickly – Trail and Error…  I ‘m driving down the residential side streets and pretty much stayed in the middle of the lane. I couldn’t figure out which side of the street to drive on.   An oncoming car helped me pick… Great I learned something new today and no one knew this except me.  Here’s your Darwin Award Mis…   No one knew all these new connections I had to pieced together.  Many new connections of stupid stuff that I had either stored away and forgotten or needed a refresher course.

The doctor visit…I was rather disappointed in this initial visit with him. The Doctor came in and asked why I was there..   umm…. “I was in the hospital last month for a good week” I had “Bacterial Meningitis”….. My home care nurse told me to see you to get my pain med prescription refilled.

I had been off the major pain meds for a few days.… I was fiening. I was in pain… I was tired… I was angry…   I was bored at being stuck home. I was tired of being sick.  I wanted a life back…. give me drugs!

He looked at me and nodded… Without him asking I told him what was still going on.   The continued pain, the joint pain, the fatigue, the headaches, the dizziness, the stomach upset, the side pain, among other stuff…  Again he just nodded at me.

His first words were well you are doing better than most – “give it time” Yes, Granted I could have been worse off – I could be laying in the morgue or swimming with the fishes by now… I get it. Most folks that endure Bacterial Meningitis that live come out of the coma with more than just a few aches and pains!  I came through it pretty unscathed compare to some.

He sent me on my way, without a refill; without a follow-up appointment; without an ounce of compassion, without a second look at my hospital record, or even looking at me, he even noted in my record the “ok” to return to work by July just days away.

I was sent home to continue my withdrawal… Continue enduring lingering symptoms and the notation – I now have to return to work.. It would just take time to heal.

 

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Life After Meningitis – At Home Resting

Life After Meningitis–  Fun First Days at Home

Leaving the hospital was a blessing and a curse. Luckily my mom stayed with us the first week or so at home.  She made dinner, helped around the house, helped my son with homework. All things I wasn’t even aware were going on around me. The other grandparents would take my son to school and back. Since my mom was there, my husband also went back to work.  Life went on!

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The first day out of the hospital  my mom and I would learn how to administer medicine and fluids through an IV PICC Line that I would have installed in my arm (an IV line that goes straight to the heart) for about a month.

The take away from my home care nurse was “Air in the PICC” was fatal  – Pfft!!!  I just went through hell and back.. I didn’t want to go there again.. Plus what they don’t tell you about Meningitis and other brain trauma is you have a heighten sense of paranoia. Telling me this little tidbit only made me more paranoid.  I had to “feed” the PICC line about 4 times a day,  it made me so overly cautious and paranoid about every teeny tiny bubble in the syringe and how much time I left the clip off.

I think the home care nurse thought I was a little crazy calling her at “Oh” dark thirty in the morning because I had a good size bubble in the syringe while I shot it.  I didn’t realize the bubble until it went through the main clear tube millimeters from my body.   All was fine, she had to convince me that shooting a bubble wasn’t going to kill me. It would take a lot more air than that.  I went back to sleep and survived the night.

The drugs I was shooting in the PICC line were the blessing and the curse. The Blessing – they were a combination of antibiotics, blood thinners, and pain meds that was to help remove the rest of the infection while keeping me relatively pain free and able to sleep. And Sleep I did. .

Different times during the day I would shoot a round of antibiotics, blood thinners and what I called an allergy chaser – some kind of Benadryl concoction. – The combination kicked my ass..  While in the hospital they noticed I still had a mild reaction to the antibiotics. So this mixture including the Benadryl would bring on The Curse – Red irritated itching skin, dizziness, headache, extreme fatigue, among other new symptoms. I felt like my skin was burning off my body, but I was so fatigued that I slept, and slept and slept.. All day everyday… Only waking up long enough to shoot another round of allergy laden drugs in my system and maybe eating a bite or 2.

I tried to rent an On Demand movie to watch while I slept on the couch. Thinking I could do something productive. I barely remember the opening credits! I woke up to final credits asking me if I wanted to watch another movie. I still haven’t watch that damn movie – Michael Jackson’s This Is It!

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A month went on and this was my existence. I lay on the couch asleep while the world went on without me.  My body continued to fight an infection that didn’t want to go away.

Next, the PICC line was removed but many symptoms, and new symptoms now remain.

Life After Meningitis – Day 1

Life After Meningitis –  Day One!

May 2010…After another 60+ hours clocked in at work by Friday evening I just wanted to head home to spend my weekend with my family.  Spring sinus and allergy issues are a normal occurrence for most people, including me and Friday I was starting to feel some allergies start up.  I didn’t think anything of it.

By Saturday my ear annoyed me a little bit but I continued with our weekend plans as well as put in a couple more over-time hours just to prepare for a Monday morning project meeting. I finished my time card, emailed a project status report to the suits, and made dinner for my boys.

Personal, MisMarissa, Family
Personal, MisMarissa, Family 2010

By Sunday morning, my ear was irritating and extremely painful. A definite earache and dizziness ensued as we started our today.  My ear popped every time I tried to talk or eat.  I felt fine otherwise – so we went out to brunch (I barely ate) . We were going to head out to play a round or two of miniature golf, but after eating a vertigo dizzy spell and a slight headache became too much for me to bare , so, I let my boys go miniature golfing without me.

The headache wasn’t alarming at first as I would get Migraines all the time – this headache, however, was strangely different.  During a Migraine I would get auras and pain on one side of the head just above an eye.  This headache progressed very quickly, within an hour or so it felt like a sharp knife was jamming through my entire skull into the center of the brain and my neck and shoulders hurt and I could not bend my neck.

Somewhere over the next hour or so after the boys left to go golfing I called the boys back home to take me in to ER for a Migraine shot. (Thinking that what it was- just different)  I barely remember them coming home to get me. I only know what I’ve been told about what happened next, until waking up in ICU a few days later.

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The Hospital visit – my husband took me to urgent care, Urgent Care sent me to ER.   I had a 104 temperature and rapidly climbing.  I was lucky that another doctor was passing the ER bay and overheard the description of my headache and neck pain. He jumped in and started a string infection tests and blood work ups. One of the Infectious Disease tests was a Spinal Tap.  I was in so much pain they started the Spinal Tap without pain meds – they said I didn’t even flinch or groan when it was done.

All these tests came back Bacterial Meningitis (a brain and spinal fluid infection) as a complication of both Otitis Media (Earache- eardrum rupture) and Sinusitis. My doctors next hurdle was trying to find an antibiotic and steroid combination that would stall and fight the infection. The issue was another allergy that prevent me from taking the normal prescribed medicines to fight this type of infection. Both Doctors and my husband said it was touch and go for the next 48 hours or so.  Would I make it?  Would the meningitis react to new medicine combination or would I develop a similar allergy? They didn’t know!    Looking through the list of drugs and treatments they tried throughout the first night in ICU (from my itemized bill) it seems they tried a little of everything.    Viola!   They found a combination that worked and started fighting the infection.

Monday – Tuesday went by….

By Wednesday I was finally awake with doctors telling me they needed to do an ear surgery to drain the rest of the fluid in my inner ear and adding tubes.  My Mom came sometime Monday afternoon and stayed with me but I hadn’t realized she was there until after fully waking up Wednesday.  The late evening ear surgery went well and I was allowed to sit up in bed Wednesday night – though briefly until getting another dizzy spell.

On Thursday my son finally came to see me. I was happy because he wanted to walk with me and he really just wanted me home – he missed me.  So earlier in the day, I tried to stand and walk.

Walking – Somethings people take for granted every day seem challenging when you have a major brain trauma.  Standing up was one thing.. getting my balance to stay up nonetheless walking was another.

Walking seems so easy until you have to tell your own brain how to do it.. You see people walking everyday around you…, but for some reason I would stand up and the actions in my head weren’t coordinating with my brain to my legs and feet.  It was infuriating to say the least.  I was standing there looking at my feet – in my head yelling at them to move – to walk – Damn it just do it.  After some work and a few times yelling at myself and trying to get things moving everything finally connected.  It was getting the loose connections reconnected.

My energy on the other hand was very low -my body was still fighting the infection.  When my son came to see me I couldn’t do much with him and he laid next to me in bed watching TV. Just before he left we did a short walk around the hospital corridor.

Everyone went home for the night – I tried to nap and rest but with the nurses coming in every hour or so. That is not possible!   Thankfully the nurses did come around because the very lucid dreams and hallucinations I would have the first few nights after waking up were terribly frightening.  Months later, looking through my cell phone I found a video I recorded of me cursing at the IV drip monitor asking the IV machine why the nurse hadn’t fixed it (him) yet.    My poor nurses had to put up with that crazy..

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Somewhere in the next couple days I learned to walk stairs- if you thought just walking was challenging – stairs were more so.

More firsts – My first time outside in about a week and a normal meal- not from an IV.    The afternoon before getting released to go home a PICC line was put in my arm to continue at home care.   I would do the first at home infusion into the PICC line before leaving the hospital then a nurse would come the next morning to set up everything in my home for the rest of my home care about a month long.

Personal, MisMarissa, Family
Personal, MisMarissa, Family

A new set of learning began at home.