My LIfe Changed (again) in October 2019

I touched on this subject in an earlier post.  But I want to really ‘touch” on the subject.  On October 6, 2019 I went to bed a normal, ‘happy’ person.  Life had been a real challenge since Donald broke his knee.  But I was coping to say the least.  But maybe subconsciously I really wasn’t.  Anyway, I went to bed, went to sleep then just hours later my eyes shot open, the room was spinning and I really thought I was having a stroke.  What else could it be?  I felt like vomiting, so I rushed to the bathroom as fast I could considering the room was spinning.  As I was vomiting, I collapsed on the floor and told Donald I did not feel well.  He called 911, the ambulance came and took me to the ER. They told me I have vertigo.  I had no clue what that really entailed other than I knew my aunt had a ‘case’ of it.  She did some head/neck exercises and never had it again.  Okay, I thought to myself.  My aunt got through this so I can, too. I went to my family doctor to advise me what I should do.  He was no help.  I asked if I should go the an ent and he told me if I wanted I could.  So I did.  I made an appointment with the ent, assured he could give me meds or advise or something and then I’d be over this.  He told me to go to vestibular therapy.  And I had to have some hearing tests.  In the end after many visits to him and many tests, he was stumped...he didn’t know what is wrong with me.  The vestibular therapist told me I didn’t have a balance issue and dismissed me.  Then I went to the neurologist who said I had vestibular neuritis...but he was sure.  He ordered an mri...and when he looked at the results he said he wasn’t sure what I had as the brain scan was clear...well, all for a couple of blood vessels that were closed off....old age.

I went to eye dr who says I have some problems with my eyes, like convergency and some other stuff and I’m in vision therapy.  Then I saw and ent from the University of Maryland and he said he doesn’t know what’s wrong with me.  

Weeks after I had my vertigo attack I felt as if I was walking on a boat...it was horrible.  Not being able to stand or walk, no balance....who can live like that?  Then days later I got on my computer and had another dizzy attack.  I felt to the floor.  I was yelling for Donald but he went outside so our wonderful dog, Maddee came and sat by my side.  I was yelling and crying...wondering if my life was gonna be like this forever now.  How can I find a solution to this if the doctors have no clue?

For a couple of months after this I would have dizzy spells that would knock me into the doors..or I could get up out of bed.  I felt sick to my stomach.  Really, really sick.  I had a friend who told me what to take to help with the nauseated stomach.  But the worse parts of all this was that I couldn’t drive, I couldn’t walk right..  

After the boat feeling went away the trampoline sensation came along.  It wasn’t so much I was on the boat anymore as it was I was walking on a trampoline.  Horrible.  How can I live the rest of my life like this??

I needed answers...I went to facebook groups, which when I started looking for vestibular groups, I was shocked to find so many people dealing with this.  Every day for years some have reported.  How is this possible and nobody has ever heard about it except those who are dealing with it?  I became a member of a new group....the group of vestibular people.  There are also people dealing with being permanently injuries from having ‘myicin’ toxicity...like gentamicin.  Those medications actually kill off the little hairs in the vestibular system and make people off balance..crippling them.  

So where am I at now 8 mos later....I’m better, but not much.  I still can walk straight.  I can’t stand without feeling like I’m falling over.  I need to sit to feel still.  

I have an invisible disease....I pray to God to please heal me.  But I’m not there yet.  I don’t know if He will...it makes me sad.  Why do I have to live like this??

I still am scared I will have a vertigo attack. And since I’m the only driver, I worry I might have a dizzy spell when I’m driving.  

There is an organization called Veda.  Their ‘symbol’ is the flamingo.  I asked someone why a flamingo and they told me because flamingos balance on one leg...it is symbolic of what we can’t do....something like that.  Or maybe we strive to balance on one leg..which most of us can’t do now.  So much we can’t do.

Blessings!

Broken Femur/Vestibular Problems

Time flies by so fast and I know I have said that many times, but it amazes me how I think something happened a short while ago, but nope.  We are getting old (husband and I) and our health in going by the wayside.  It’s getting harder to get through a day.  Whoever came up with “Golden Years” was a liar unless he had great health and lots and lots of money.  Otherwise, I’d like to meet him and tell him he is wrong.

One day in March 2017 it was a normal day until the phone rang.  It was hubby at work saying he went to get up from his desk and couldn’t.  He broke his femur bone at the knee.  Long story short, I had to go get him, take him to the ER and it’s been a nightmare since.  Four operations later his leg is fused so he can’t bend it. He can’t drive.  He walks with crutches, he lost his job.  That day changed our lives forever.  I was mad, angry and missing our old life.  No more can we RV.  I have to do all the driving now.  I have to do most of the chores.  *sigh*

Hubby had to go on SSDI.   And because he was on that I was also eligible to get a little money, too.  But when your salary is cut to bare bones your lifestyle is too.  Now it’s worry about everything.

Mostly since 2017, things have been focused on hubby and his health, but last year in October (2019) I woke up with the room spinning.  Hubby called an ambulance as I had collapsed on the floor.  And the long and story of that is ER dr said I had vertigo.  So off to the ENT, audiologists, VRT (vertigo rehabilitation therapy), neurologist and soon to see a eye doctor who specializes in eye problems.  And symptoms with this disorder include 24 hour nausea, dizziness, feeling like you are seasick and walking on a trampoline all the time.  I never even knew this disorder existed.  And what has shocked me even more is how many people are suffering with it.  Of course, I went to facebook groups just to see if there was a group of vestibular disorders and yes there was.  People all around the world and yet hardly any of us are being diagnosed properly.  I have little faith in the medical profession these days.  Google can tell me more about my problems then a man or woman who spend years in school supposingly learning how to medically treat people.  But don’t get me started on that.  Anyway, I had to quit driving for a couple of months, but thank the Good Lord my kids were able to get us to doctor appointments and such.  I told my son this is why people need to have a lot of kids...so us old parents have tons of children to rely on and not burn them all out at one time! LOL.  Most days I just wanna give up, though and not get out of bed, but I remind myself I need to find purpose in the day and that is why I DO get up and even if it’s to wash clothes or cook a meal.  I have to keep pushing on.

Our son bought his own house.  He was living with us, too but we had to convert the family room into a bedroom for him.  He was here about a year or so and it was wonderful having the kids back home and we were all together.  I don’t care how old they get it is always grand to have the kids around.  It’s just too bad we don’t have a large parcel of land where we can build houses for each of the kids and we could be close to one another like back in the days of farming.  But with technology these days we can talk with each other and video chat if we want to.  And that’s the next best thing to having them here.

So this is kind of our four year update.  I’m hoping to start updating here more.

Blessings!
Bev