When the world spun out of our control

I woke up on the 20th of February 2017 an imperfectly-perfectly normal 44 year old woman.  I went on a 3 mile hike with my 45 lb ruck sack on the roads in our neighborhood, like I have done countless times before.  I listened to my audio book and was excited to incorporate a new training regime to prepare for the race in March, the Bataan Death March.  I was feeling great.  I ate my two egg burritos while I walked since I have been struggling to eat the eggs with increasing my protein intake lately.  I had even posted a gorgeous sunrise celebrating a wonderful day to Facebook.

I got home and put my lunch together, I had prepacked everything the night before so I just had to put it in the bag.  I had changed my lunch bag to a maroon bag from a race from years past.  I put together the food I was bringing for a co-workers welcome back lunch.  I had prepared berries, bought an angel food cake and had coconut milk ice cream so one of my friends could eat it all.  I put all of that in a black bag.  I was pretty excited to see Ashley and celebrate with everyone.  I made my yogurt smoothie to have on the way to work which I had been doing the week before and seemed to work out well.  I was feeling great, confident in my food set up for the day and just overall felt great.  We had a great weekend coming up with going to Phoenix to watch the Cubs play in Spring Training, it was going to be a fun family weekend.

I went to the back of the house, showered, got dressed and while I was doing my hair I started to feel funny.  Now, the Wednesday prior I had this same type of feeling.  I was on my way to get a patient and I felt like I was going to pass out, my head was killing me and I was incredibly hot.  Being in a medical setting I checked my blood pressure, it was high for me at 139/95.  So I rested for a bit and it passed as quickly as it came.  It happened again on Thursday when I went to get the same patient, ironically.  Again, I rested and it passed by.  So when I felt funny again, several days after that first incident, I sat down and rested a little bit.

It didn't really go away, but I needed to get ready for work.  I would get up and do one part of getting ready and go sit down again.  I would get up and do another part and sit down.  I thought this is getting ridiculous.  Then I puked.  Phew, I think I will be okay.  I felt better.  I looked like crap but, it would do and I headed to the front of the house.  When I walked to the front of the house, it felt strange.  I felt like I was floating. Weird.  But, I didn't rest very long, it was getting so late.  I sent my work a message that I am feeling a little funny, don't think I am getting sick, but I am on my way.

I loaded everything in the car and left to go to work.  I live about a half hour away so I thought, if this is one of those weird spells it would pass on the way to work surely.  I would be sitting down.

As I was driving, it was clear this wasn't passing.  I wanted to at least make it to work where I could be near people if something happened.

I didn't make it.  I thought I was going to pass out and I was profusely sweating so I pulled off on a side street across from some apartments.  I was about a 1/4 mile from work.

I started to violently puke out the side of the car.  I kept my seat belt on because I couldn't hold my body up.  I was able to finally figure out how to call work and tell them I wasn't going to make it, I was on the side of the road sick.  It was rocket science trying to figure out to call Kevin.

I said to Kevin, knowing he was at a noisy school function with the boys, I said, "I need help!  I can't drive, I can't sit up, I can't move, I am scared."  He was trying to get out of me where I was, it took awhile but I told him where I thought I was and I hung up or he hung up, I don't know.

At some point someone blew past me and was honking their horn.  I finally put the car in park and put the flashers on.  Took me forever to figure that out.  I had kept my foot on the brake though just in case.  There was a washcloth in the door that I was wiping my face with.  I used my water bottle to wash the egg burrito off of the door jam before I went to puking more.

I was puking, crying, sure I was dying.  I was hanging onto the door for dear life and puking.  I heard sirens and the sound of a heavy vehicle.  I thought oh no I am too far into the road, they can't get by me.  I should have called 911.  If Kevin can't get me out of the car, we will have to get help or call 911.

Then the voices came to me.  They said, "this must be her, they said it was a woman puking on the side of the road".  They were here for me.  Oh no.  I have to call the insurance to get approved for help.  What am I going to do.

It was out of my hands what to do.  I opened my eyes for a moment and saw Kevin was there too.  Oh no, the trauma this must be for him.  I feel so ashamed and awful.  This is terrible.  What is wrong with me?  I have never been so scared in my life.  I thought that this was it, I was dying.

I could answer the questions they asked me but couldn't keep my eyes open.  If I opened them I was puking.  One of the paramedics that came to the rescue was a friend of the family, Adam who was also at Jack's memorial.  Kevin knows just about everyone in the Northwest Fire Dept from the calls he has gone on and because of his brother Ken who was a Northwest Fireman.  Kevin was able to fill them in on any extra questions they had.

He told them that I had been on a 12 mile ruck hike with Matthew on Sunday and went for a 3 mile today but I had been fine.  They decided to put an IV in me with fluids in case this was dehydration.  They gave me medication to stop the puking too and medicine to stop the spinning.  They had me get out of the car and move over to the gurney to go in the ambulance.  You might as well have asked me to jump from one side of the grand canyon to the other.  It was so hard.  Kevin said it took four of them to get me over there safely. I remember them telling me to not step on my puke.

Kevin said they called for the ambulance that is for patients who are in critical life support condition.  It really scared him, because he didn't know what was happening to me.  They offered to drive my car to the hospital and to put the food from the car in the fridge.  It was so kind.

On the ambulance ride there, which is very close, about a 1/2 -3/4 mile away, they were so reassuring in the ambulance.  They had mentioned vertigo since nothing else made any sense. Because all my other vitals were normal. I continued to try to get sick in the ambulance.  They got me into the ER and gave them the run down.  Someone put something under my nose cuing me to breathe deeply and it would help with the nausea.  It smelled like an alcohol wipe, I have no idea.  I did everything they asked.

They had me change out of my shirt and into a giant hospital gown.  Any movement of my head sent me puking or I flopped over unable to hold myself up.  They said it was Benign Paroxysmal Positional Vertigo. (BPPV).

They had at one point tried to get me to take two pills for dizziness with some water.  I puked them up.  I don't know why they couldn't have given me a shot.

They had someone come in to do xrays of my chest, which was a nightmare, I couldn't sit up.  I couldn't keep my eyes open at all.  I could respond but couldn't keep my eyes open. The tech said, just try sitting still and not puking okay.  Yeah right??  They had at one point told me that I needed to provide a urine sample and made me move over to the bedside commode.  It was awful, I couldn't sit up and was laying on Kevin while he stood there to try to steady me.  I said, I think I have to poop.  But then I didn't, then Kevin smelled a bad smell which was the lunch they were serving and thought maybe I pooped my pants.  It was awful.

At one point, around 3pm, the nurse came in and said, you are going home?????

She took the IV out, gave Kevin discharge paperwork and went over where my medications would be filled.  Kevin and I looked at each other pleading in the same thought of "how am I going to get from the truck inside the house??  I can't even sit up??"  She recommended clear liquids and resting in the bed for the rest of the day.  He had put a jacket on me to get me to the car because my shirt was covered in puke.  She pulled the w/c up to the bed, like I would get up and pop right into the chair.

I sat up, flopped over and puked.

The nurse said, "Nope. You are not going anywhere, you are not ready to go home!"

We read later in the notes from the hospital that I had said I was ready to go home.  I was not well, but, I was coherent and I definitely didn't say I was ready to go home.  We also read that I had to have an abdominal xray because I was constipated?  I was never constipated.

So, they peeled the sweaty coat off of me and put back on the puke gown.  Kevin was so worried about me.  He was there holding my hand and doing everything he could to make me feel better.  Washcloths, puke tube, everything.  The puke tube was this blue plastic thing like a tube that when I held it I squeezed it too tight that I didn't give much room for the puke to go, not that there was anything left at all.

I had a blue headband in my hair when I got ready for work, Kevin was so determined to get it off of me, it became a mission to get it off, it was just one of those things that happens in crisis.

They came in and said they wanted to take me down for an MRI, so I had to take off my necklace, my watch, my ring, my earrings.  Kevin had to help with everything.  He had on both of our wedding bands on together, both of our watches together, he had my wrist bands on his wrist, he put on my necklace; but he put the earrings in his pocket.

I went down to the MRI place and Nancy was the kindest person, she talked me through the whole thing.  I crawled from the gurney to the machine table.  She explained it would be about an hour in total, asked what music I liked and put the headphones in and clamped my head in place on the machine.  I couldn't open my eyes.  I was petrified of puking in the MRI tube.  She put on my country station and it was so weird that I was hearing the 5 o'clock traffic report.  How am I here?  I should be finishing up at work? How has this happened?

I came back from the MRI to Kevin's warm hand on me and knowing he was there made it all okay.  They moved us into a room, C6, a holding area sort of, but it was a room and more private then the curtains in the ER.  Kevin called this purgatory, the place between the ER and a regular room.  It was called AEU, which we never really understood why it was called that.  They moved me from the gurney to the soft and squishy bed.  At that point it seemed the most comfortable bed ever.  They hooked up a heart monitor and ran another EKG on me too.  It has been over a week and I still have glue from the multiple pads stuck on me.

We were introduced to our nurse until 7pm at least, her name was Nancy.  She was very nice.  She explained a little better what the medicine is and the schedule of medication.  She gave me the shot of Phenigrine which is a pretty potent nausea medication, hurts like hell.  I am bruised from the shots still a week later.

The hospitalist had come in and said it was most likely vertigo, the MRI was good, but they wanted a neurology consult first before they would treat the vertigo.

I was given applesauce and ice chips to try to keep down.  At this point I wasn't able to get up to use the toilet, there was a bedside commode I could use.  This left Kevin having to put a bed pan under me.  A bed pan.  Wow, this is marriage.  Through sickness or health. It was so uncomfortable to pee in the thing, but I had to.  I couldn't sit up or stand up to transfer to the commode beside the bed.  I would have a hard time going sometimes so he would have to dump water from one cup to the other to make running water sound so I could go.  One of the aides would put a diaper in the bed pan for easy clean up, which made a big difference for Kevin helping me.  I call them briefs from working in the SNF, it is a more dignified way to call them vs a diaper.  At one point we had ran out of briefs and he asked someone going by if they would bring in some more briefs.  A woman came in while he was gone and said, "A man told me to bring in some of these" and she laid them down.  They were industrial strength and of hideous look, they were underwear.  Yep, underwear.  Thanks....

At some point, Kevin had to leave to let the dogs out and get something to eat.  The boys ended up going home with their grandparents as their mother was out of town.  I was feeling so bad for all the external chaos this caused.  I tried to sleep while he was gone, I was so exhausted.  I couldn't keep my eyes open.  I decided to call my Mom and let her know what was going on.  She had told me this was another one of those things that happen with age.  She had a few spells herself and can remember her mother having them too.  She knows a lot of people who have them. After learning more about this, this can be anything from a fleeting 20 min spell to days, weeks or months.  It was comforting all the same to talk to Mom.  This has been the scariest event I have gone through.

He came back and we tried to make the room comfortable for the night ahead.  Kevin had been looking up information on the internet and trying to understand what was happening.  He would give me ice chips and help me with the bed pan.  I couldn't get comfortable.  I would be roasting hot and then cold.  I would have 5 blankets on and then only a sheet.  I couldn't lay on one side or the other or my back.  Our night nurse, Ana came in and introduced herself and our night CNA, Imani came in and introduced herself and they wrote their names on the board.  It was reminiscent of when we were in the hospital with Kevin's father.  I was worried so much about Kevin.  We barely just came off of Ben's 10th death anniversary and hospitals and the memories they have for him.

After a restless night, at 0500 the vampires came in to draw blood.  We call them the vampires at work because they come at night before patients have food in their stomach so I understood them coming early.  But, the tech turned on all the lights, comes barreling in and goes about trying to find a vein.  He was pushing on where I had the IV location on my arm from the first IV and asking if it hurt.  Well yes, you idiot it hurts stop pushing on it.  Then he drew blood from another spot.  No sooner did he leave than Iman came in.

She said we need to do a little test of your blood pressure.  I knew what that meant.  She took it while I was laying down, 120/80--normal.  She took while I sat up, 146/102--so not normal--I was doing everything I could to not puke, I was so dizzy and weak, sweaty, hot.  She had me stand up, 114/56--I started puking and going down.  Iman was trying to keep the puke tube on my face, it was the end of her shift and the end of her work week--I am sure she was paranoid to get puked on, I kept pushing it away over and over, I was being suffocated by it and everything happening.  So, did I pass the test?  That is what we call orthostatic hypotension, the test confirmed that.  Until that point we hadn't seen the nurse very much, she by our side then.  I was absolutely miserable.  The nurse was trying to keep me sat up while I puked to keep me from aspirating.  I couldn't do it.  I couldn't do this anymore.  That is when I started bawling, thinking I was never going to get better.

Nurse Ana gave me Phenigrine and helped to make me comfortable. She helped to take off my pants and pee soaked underwear, the puking made me pee.  She changed me and gave us wipes to clean off my face and neck from the puke and sweat.  I was so miserable.  She told me she wanted to stay ahead of the nausea with giving us the meds ahead of when they were due to stay ahead of it.  They came in and did another EKG too.

Next came a loud CNA named Jeff who was bringing me breakfast.  A blob of eggs, yogurt, muffin.  Uh nope.  I would try oatmeal.  I asked him for some butter and some sugar.  He brought it in and Kevin helped to put it together.  When he opened the butter it was frozen and launched out onto the bed.  We laughed but still used it!!  It was a good laugh in the midst of all of this.

We were waiting to see the neurologist because the hospitalist said he wanted the consult.  He finally came in and we were not impressed.  He put on his gloves, scratched his head and grabbed his pen.  Sort of defeats the purpose of the gloves.  I explained what happened, he asked questions.  Didn't seem to comprehend how a 44 year old woman who is an endurance athlete and in great health isn't on any medications.  He seemed to perseverate on the 12 mile hike on Sunday, which had nothing to do with what happened.  He spoke of the MRI showing an issue with one of my carotid arteries.  That it showed a possible tear or dissection, that they would need to do more MRIs and set up for a consult with the vascular surgeon.  He didn't seem very confident in anything he was telling us.  We asked further about this tear issue and he said, well you could take aspirin or blood thinners.  It isn't a big deal.  Our confidence in his guidance was non-existent.  He told us there isn't an ENT at the hospital.  Nobody, not one person even bothered to look in my ears.  Even if you go to your normal doctor, they always look in your ears, even if you are there for a sprained wrist.  If the problem is in my ears, why is there not an ENT at this hospital???  So he left, good riddance and it left us with, now what?

A tear? Blood thinners? Is this the end of my running and endurance life now too?  A surgeon?  Surgery?

A tech came to take me for another round of MRIs and CAT scans.  This time I couldn't transfer to the MRI table, they used a slide board to move me.  I tried to help, I couldn't.  This sucks. At least the ever so kind Nancy was there.

Back to the room again to wait for the vascular surgeon to look at the scans and come talk to us.  I posted a message to facebook asking for prayers and good thoughts.  I was so worried about everything.  About Kevin, will I be able to work again, can I help provide for my family, will we be able to do all of the things we love again?  Why is this happening?

We waited all day for a doctor to speak to us.  Kevin looked up who the vascular surgeon was and he was the best in Tucson so that gave us hope.  Now if only he would come to see us between his surgeries.

Through out the day, I tossed and turned and we watched the clock.  They would check my vitals and my blood pressure kept running low, so I tried to stay up on eating the ice chips.  Lunch came and it was some chicken tortilla soup, crunchy things for the soup, cheese enchiladas and flan.  I had some of the soup and the crunchies and we both had some of the flan, we have never had flan so our first experience was weird.  We don't want to judge with it being the hospital flan..  Kevin had brought snacks from home, but he really needed a real meal.  He went home to get some food, shower, change clothes and feed the animals.  I found out later that on those drives home from the hospital he just cried and cried.  He hates to not be able to help me, he felt so helpless and broken.  It breaks my heart that he was going through this.

The night came and our night nurse Ana was back.  She was just lovely.  She talked to us about the medication regime and that they wanted me to start taking the mecclizine again.  We never heard anything about the vascular surgeon and hadn't seen the hospitalist again.  I don't know if that was why they hadn't been giving it to me previously?  The last time I had it was when the nurse tried to get me to take them right when we got into the ER.  She also wrote down the schedule of the medication for when I was to get things and what I was to be given.  They finally took the heart rate monitor off of me too which was a relief, it was so uncomfortable.

With the Phenigrine, she gave me two little pills, mecclizine which is what helps with the dizziness.  The Phenigrine makes you sleepy and dizzy, which is silly for what it is supposed to help with. I would get those every 8 hrs. The Zolphran was given in my arm port for as a carry over for nausea I would get every 6 hrs.

That second night I slept significantly better.  She came in and gave me meds and they checked my BP which was still running low, but not dangerously low.   When I woke for breakfast the next morning it wasn't due to blood draws or blood pressure testing thankfully.  I asked Kevin to help me change into a shirt and help me brush my hair and put on some deodorant.  It felt good to look more human.  I finally got my contacts out too, they were glued to my eyes, but with my eyes closed so much they weren't too dry.

They took me though for more MRI scans and a CAT scan where they gave me fluid in my arm that was really warm and made it feel like you peed yourself.  However, this time I could keep my eyes open and saw the tech Nancy for the first time.  They were doing more focused scans on the same area of my carotid artery.  Which we still hadn't heard anything about.

Back to the room to wait.  Eventually a very useless doctor came to see us.  We caught his name as McNipple, it was McNichols.  We shortened it to Dr. Nipple, that is level of respect we had for him.  He was the hospitalist.  At this point I was able to keep my eyes open and deal with the light, so we kept the door open so I could try to adjust to the movement and light.  I performed two transfers to the bedside commode with the help of the nurse and Kevin.  It was progress but, it took both of them to do it.

Dr. Nipple came in and introduced himself, asked some questions about what happened, the usual.  He said, well you are taking all the medication, you can take these medications at home.  There is no need for you to be here. We asked about the artery, he said it is a congenital anomaly, nothing of concern.  I said, what about the fact that I can't sit up, stand up or transfer to the commode without my blood pressure dropping or puking.  I said I don't feel safe to go home.  He said, oh you will be fine, we will have PT do an eval and if you are safe to go home you will go home and if not then you will go to a SNF and left the room.  We heard him in the hallway, "get PT in there to an eval, she is taking up a bed we need, she is faking"  The nurse that took over from Ana told him, no she is not.  I have seen her white knuckled and covered in sweat.

Kevin and I nearly lost our mind.  Me.  Faking.  You think I want to feel like this?  Not one fricking doctor asked me to stand up.  If he did, he would have gotten puked on.  Sure I look fine laying there, I look stable and perfectly fine.  Yeah, go ahead and bring PT in here and I will show them also that I am puking and can't stand up!!  I was so pissed.  Kevin and I were ready to just say F it and leave with puke bags.  Funny thing is we asked about PT and they said they didn't have inpatient PT, they only had outpatient PT.

We heard the first PT guy come up and our nurse telling him that PT was ordered the day before at 4:30pm, it was almost noon the following day.  He was arguing with her and she showed him on the computer.  Then we heard him say, I am not going to eval her, it is going to be a waste of time.  I will get someone else to see her.  Since when did I become a problem to see?  I was getting more and more mad!!

Then finally a PT by the name of Raymond came in to see me.  I let him know that I worked in a SNF and knew what therapy was etc.  He was very nice and told me that he was going to do a procedure called the Epley on me to see if it would help.  We read about the Epley and many of my friends commented on why don't they do the Epley on me.  Well Raymond who has been there all week said, I am going to do this on you.  He explained what he was going to do and it seemed like some sort of thing you would see at a religious ritual where they flip you back into the water.  He flipped me back across the bed so my feet were touching on one side and he was supporting my head and neck at the other when he flipped me back my head was turned to either the left or right and her kind of shook my head to get the crystals in my inner ear back in place.  It was such a weird feeling.  But when he started it, my head hurt on the Left where my migraine had started on the Wednesday prior when I had the first weird spell.  So, I thought it must be doing something good.  He did it 3 times on each side and then had me stand up.  I could stand up with some rocking, but it was better then it had been for sure.  He asked if I wanted to try walking.  I said I would, I was nervous because we didn't have a w/c to follow us in case I went down.  We went out into the hallway and I spotted out a point that would be the length of our house as a goal to make it to.  I think he thought I was only going to go a few feet and quit.  He had said you don't have to go very far on my account and Kevin said, she could go all day, she is an endurance athlete.  About then, we had reached my goal point and I said we could turn around.

I got back to the room, pretty exhausted but relieved I could do it.  We asked how come they didn't have him come see us sooner.  Why have me go through all of that misery when there is someone in the hospital that can help me?  It was ridiculous.  He said he would have gladly helped if they called. After he left the discharge process began.  The idiot neurologist came in to see us and was dumbfounded how I was doing better.  Well, dumbass if you knew all the resources available to help your patients I would have been better sooner.  He didn't even know what the Epley was?  Where did he go to school??

We asked to have a walker to go home with, I wasn't prepared or confident in my safety to go home without one.  The case manager came in and she was very nice and brought us a walker to take home.

The nurse organized all the discharge paperwork and Kevin moved our stuff to the car.  I grabbed the plug for the phone out of the wall to take with us as the nurse was pulling out of the room.  It was weird in the room because there are no windows so day is night and night could be day.  It was always dark.  As she pushed me out and down the hall to the exit I had to cover my eyes still.  All that moving input was disorientating.  We pulled outside and I told her that was Kevin pulling up, my knight in shining armor.  They helped me transfer from the w/c to the truck and we were off.  I covered my eyes again and tried to open them in small doses to adjust to the brightness and movement.

Then we were home.  50 hours of hell in the hospital, but we were finally home.  Kevin got the walker out of the back and opened the door for me to get out and for us to navigate getting in the house with a small step into the house.  It was wobbly and shaky and we made it to the recliner, which seemed like a good idea until it rocked backwards.  Kevin plugged in my phone by me, had a puke tube and water and the remotes to the tv.  He was going to go get the medication, a shower chair, some groceries and see the boys.  I told him I will be okay.

It was really good to be home, I really didn't know what the journey would be from here, but at least we were home and not having to wait on doctors for information or anything else like that.  At least all of this could be in our control.  Kevin got back and went to the task of putting the shower chair together.  I desperately wanted to be clean.

Everything I did was with Kevin's help.  Going to the bathroom I used the walker to get in there but needed his help to make sure I got up okay because I would get disorientated and dizzy.  For the first shower, we weren't sure where to have him stand or how he could help.  I rocked back and forth and I would use his arm like a grab bar to stand up to clean my bottom, the rest I used a hand held sprayer.  We have gotten pretty good at it now.  I still don't shower on my own 10 days later.  I can stand but when I wash my head and tilt my head back I get wobbly and have to hold onto something for help.

We eventually made a spot at the couch with one of the folding tables for my stuff.  The kids had to get adjusted to me having a walker in the way.  The animals had to adjust too.  I would tell them to go through it and they would go.  Sometimes they would just freeze and not move.  Not very helpful.

The rest of the first day home was just resting on the couch and watching TV and having a shower and dinner.  Kevin had retrieved our stuff from the paramedics fridge so we ate angel food cake and berries for several days.  Kevin bought a lot of pudding too, I guess because I ate pudding one day in the hospital and I didn't share with him, so it was a good item to eat.

Wednesday night Kevin went to the car and dealt with my yogurt smoothie that had been in there since Monday.  Scary.

Our wonderful friend Jennifer Cambell ordered pizza from Pizza Hut to be delivered to our house for dinner on Thursday.  It was fantastic, we didn't have to worry about dinner for a couple nights.  We met her through running, she is such a wonderful and supportive friend.  We are blessed for her friendship.

The next few days was about calling insurance companies, benefits company, hospitals for records, the base for a referral, referral management....all calls with leaving a message and waiting for call backs.  It was insane.  I was so thankful Kevin was able to deal with it all.  It was all so overwhelming.  It was about coordinating with our friends to take the Cubs baseball tickets from us so they could enjoy the two days of games we were going to miss.  I thought I would be better to go do it, there was no way.  I felt so guilty and just dreadful for missing this.  Cecilia was already scheduled with her cat sitting job to have someone cover her while she would have been gone to the game, so she would spend the weekend with us.

We had been coordinating with the hospital to send records to the base so they could get going on the referrals to Physical Therapy and the ENT.  When we would talk to the base they would say they hadn't received them when the hospital said they sent them.  So on Friday we went to the Northwest hospital records and got them and drove to the base to deliver them and get something in motion.  It is easy to hang up or ignore a call, it is much more difficult to ignore a person in front of you.

We seemed to get everything going and we would have approval for the appointments, which we already set up.  The earliest we could get into the Physical Therapy was 6 March and for the ENT was 9 Mar.  We got things sorted out with the benefits folks, we just had to fill out some paperwork online.  Friday was a lot of walking and I was exhausted.  It took so much concentration to focus on each movement and trust my feet were on the ground.  I always felt like I was floating.

I received an email for a continuing education that I thought was interesting with the timing of it and it was an email for a 2 day training course in Phoenix on 10-11 March on Vestibular Rehabilitation: Evidence-based evaluation and treatment to decrease dizziness and restore balance. Differential diagnosis for peripheral vestibular dysfunction including BBPV, vestibular neuritis, labrynthitis, bilateral vestibular hypofunction (BVH), Meniere's disease, acoustic neuroma, and perilymphatic fistula.  Now, at this point the hospital diagnosed me with BBPV, I haven't seen the ENT to know what I have specifically, but, with having experienced this, whatever it is, has made me a better therapist.  I can further increase my skills and knowledge to better treat patients who are experiencing these type of episodes.  This whole experience in whole has taught me a lot of lessons about how I can be a better therapist and caregiver.  I have definitely used a lot of the tips that I tell patients to be safe, with sitting down to do your care, having everything in one place, washing your legs with your legs crossed over each other vs leaning over to wash them.  So many things.  I have also been a very stubborn patient, as I am terrible at asking for help and receiving help.  I felt bad because Kevin has been trying to help me and I am trying to do it myself.

Cecilia joined us for Friday, Saturday and Sunday.  Unfortunately she had to experience a rough time.

I hadn't pooped since Monday.  It was a major concern.  I think it was a combination of laying down for so long and lack of movement of my body.  Kevin said I should go running, that always works.  He had jokes.  So I had Kevin pick up some Milk of Magnesia, like what we give our patients.  Well, it wasn't working as quickly as I would like, so I drank more and again some more.

Eventually the poop well broke.  Saturday is now known as poop day.

I named my walker Calamity Jane, I don't know why, it just seemed appropriate.  Cecilia said to me, "mom you are getting really fast with Calamity Jane".  Having her and Kevin deal with my poopy pants was a deal breaker, it wasn't going to happen!!

I also had another moment of tears.  We had ordered new hiking boots and running shoes for Bataan and they came in.  I put them on and cried.  I need to be back out there on my trails.  It is spring time in the dessert and I am missing it trapped inside this dizzy body.

On Sunday we planned to support Kevin and Matthew while they hiked on the trails at Sweetwater for 10 miles.  I knew it would be hard to be out there, but the race is still going to happen, with or without me walking it, they need to train.  I had decided to bring the hiking sticks just in case.  I love being out there and Cecilia was with me, so I thought I would give it a try.  I had to pee really bad.  So we took both sticks out and we walked to the wash so I could pee.  Cecilia had to hold me by my hands as I squatted so I didn't fall over.  It was great Mother-Daughter bonding.  As we were walking back, I went on for a little longer, it felt so good to be moving and it was a confidence booster that I was doing it, albeit really awkward.  We didn't go far because there were a lot of people out on bikes and I didn't want to risk a fast movement and fall.  I haven't fallen with this whole thing and I didn't want it to happen out there.

I was depressed though.  A week ago I did 12 miles uphill on pavement with 40 lbs on my back and here I did 1/4 mile with sticks all wobbly.  I have tried every day to focus on the positives through out each day.  Each day I recount what was positive, sometimes though, it is hard to do.  We left the trail and went to Eegee's for lunch.  I had to go to the bathroom and wait for the handicap toilet.  I went out to our table and ate and Kevin made a joke about an older lady who came in and said, is that you?  It hurt me.  I wasn't seeing the humor.  I said I am going to be walking Bataan with you two and cross the line with you!!!  Matthew, meaning no harm didn't believe me and looked back and forth at Kevin like he would say no.  I was just so sensitive and depressed.

We got home and I took a nap, I was done doing anything and being positive and nice.  A nap I will refer to as the magic nap. I am not a nap taker typically.  I will say I want a nap, but I will just lay there and not sleep.  This was like an almost drug induced coma nap.  I was watching sappy Hallmark movies when I fell asleep and I guess all that sweet dialogue lured me to sleep to rest peacefully.  I woke up and felt great.  Naturally as I went to move I was wobbly, but I did feel a lot better.  I decided to start working on the blog for our 24 hour Remembrance event and was feeling emotionally a lot better.

Kevin took the boys with him to take Cecilia back to her house.  I told Cecilia I just didn't have the patience to go and she understood.  I made some headway on the blog and asked Kevin when he got back if I could take a shower.  I really wanted to shave my legs, he had a look of horror that he would have to do it.  I ended up doing it with my leg straight out on the wall in front of me as long as I didn't need to bend over I was okay.  I looked back on the day with success.  I walked a 1/4 mile and I shaved my legs.  I decided to start just using the hiking stick as a walker and folded Calamity Jane up.

Monday came and I told Kevin I want to go on the dog walk behind you with my hiking sticks to be safe.  It would be a mile for the dog walk.  I also decided to stop taking the medication to see if I could manage without them.  I was concerned they were contributing to the constipation too, I wasn't going as normal as I used to.  I did it and was okay, I looked a little crazy with hiking poles on pavement but, I did it.  We didn't do a whole lot that day with getting the boys off to school, making more progress with insurance stuff and watching tv.  We went to Northwest hospital again to ask a question with regards to the discharge paperwork I needed to send off.  Afterwards we went to a Chinese Buffet place for lunch and we picked up the boys from school with the walk we do from our parking spot in the other neighborhood.  A week ago I was there with a 3 mile walk and a ruck sack.  How quickly life changes.

Monday morning I inquired whether anyone dealt with the maroon bag as it didn't make it into the paramedics fridge.  Kevin didn't know it was supposed to.  Cecilia said she would deal with it on Sunday but forgot.  It was trash day, so I took the maroon bag down to the trash and dealt with the contents there.  Everything in there was a refrigerated item.  Scary.  You just never know what is going to happen.

Monday night our dear friend Diane Gonzales brought us dinner, a yummy chicken Alfredo and decadent pie from Fry's.  It was so sweet.  She is such a kind and giving woman.  We are so blessed to have her in our life.

Tuesday I told Kevin I want to walk behind you on the dog walk without anything supporting me.  I just want to walk and see how it goes.  I looked drunk.  I still couldn't really feel the ground beneath me and would lose my balance and take a couple steps to regain it. But, I did it. We needed to fax some paperwork off so we made a trip to Kevin's work.  I was faced with stairs to go into the building.  It was weird but I did it and we faxed off the paperwork and made the journey back down the stairs.  We had to do some more errands of going to Target and Costco and I used the cart to support me as we went.  We had some lunch at Famous Dave's BBQ and had a nice day.  Kevin dropped me off and I called about why the Physical Therapy referral was denied.

They told me on the phone from the health insurance that the Physical Therapy for BPPV is not deemed medically necessary and would not be approved even if I went through the process of resubmitting it.  It is on some exclusion list of therapy not deemed necessary.  Wow.  Let me see, the only thing that has helped me in this process was Physical Therapy!!!!  One dose of Physical Therapy???  Is it necessary for you to be able to get up out of bed, not hold onto anything as you walk by yourself to the bathroom, go to the bathroom, get up without worry of falling, having a shower by yourself, going to work, driving, living, existing--is that necessary for you?  Who gets to make the decision to make the list of what is necessary?  I can bet that if they went through what I went through they would probably change their minds!!  I was so mad.  Hurt. Depressed. Pissed.  I just cried.  I cried that deep heavy cry where you can't breathe then dry heave and cry some more.  I am so fucking done with all of this.

I went to the bedroom and laid down and cried more.  I was supposed to see them on Tuesday, to finally get some relief and now nothing.  Nothing until hopefully some relief on Thursday.  That is 9 more days of this shit.  I felt like I wasn't going to get better.  The feelings of "better" were so small now that I felt like this is my life.  I can't trail run again.  I can't hike again.  I can't do Bataan.  Why did this happen to me?  Why??

Kevin got home from picking up the boys and he saw me in the room and I told him what happened.  I didn't want the boys to see me so upset.  I just laid there like a blob and felt shitty.

Eventually I got up and put sappy Hallmark on again and decided to do what helps me most when I can't run and that is to write about it.  So I started to write this.

Wednesday I decided I would try to walk the dogs on my own.  Kevin had training he had to go to and he needed to start work again.  I was only going to take one dog at a time and thought I would be more balanced if I took them both.  So I took them both and it was okay.  I took my phone in case I fell or had some sort of incident.  But, it went okay.  I think the dogs knew that I was not 100%.  I got home and text Kevin and he was mad I took them both at the same time.

I also had Peggy and Emerson Knowles (Peggerson as I called them) coming over that day so I needed to clean up the back porch for their visit.  Peggy is allergic to the cats.  It was a great distraction to clean and do something not related to all of this mess.  I cleaned inside the house too, it was great.  I probably overdid it a little bit.  Peggy made the most delicious pulled beef BBQ and macaroni and cheese we have ever had.  It was wonderful visiting with them too.  Peggy has prayed for me the whole time, understanding how it feels to be fine one day and not the next with being the survivor of a stroke.  She is amazing, we adore her!!  Emerson sent messages of encouragement every day since this started.  In times of trouble the people who are there for you will shine.  I have really learned who my real friends are in this process.

Our friends at The Compassionate Friends Group sent us a card that was very sweet and I had many people comment and posted their well wishes to me as this encompassed our life.

The boys also got me flowers and wrote me cards.  Matthew being the smart-butt he is decided to write stuff on the back of his card that would make me dizzy.  Thoughtful.

On Thursday I walked both dogs by myself again and carried my phone.  Today is that day and I feel like it was a great break through as I was more stable and I could feel the ground beneath my feet.  I am grateful for that feeling.  It has been such a strange feeling to feel like you are floating all the time.  I think I might make it through this.  I hope to see how driving goes in the next couple days and I want to try to do a hike with the poles this weekend.  I am hoping to go back to work on Monday too.  I will use our rehab tech in the beginning for transfers until I know the movements are safe with my head.  It is hard to describe how my body feels in all of this.  How my head feels.  Each day it gets better and better.

So in the end of all this, I have learned how precious life is and who is there for us in time of crisis.  People I thought would be there, didn't even take the time which is very sad.  My admiration and love for my husband constantly grows.  I am so proud of him and to have him as my life partner to help me through anything that is presented to us.  I think because of everything we have done as a couple this was easier to get through than if we have never faced adversity together before.  We never in a million years can know what tomorrow will bring, how we deal with it and approach it will be the success or failure of getting through it okay.  This journey doesn't end here, I am still not 100%, but, I can deal with it better and face it head on with confidence that I will be okay.  With the love of my family, my amazing friends and faith in the positive....I will be okay, we all will be.