What to Expect When You’re Chronically Ill

This new section on my blog will be where I post about the delimnas I’ve faced these past 5 years as someone living with several chronic illnesses.

Here are just a few things I’ll be opening up about:

  • Financial Strain on the family
  • Relationships
  • Loss of Independence
  • Medications and the Dangerous Side Effects

 

 

 

Chronically Ill and Working

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Something major happened in our household this week.

For the first time in a little over 4 years I returned back to the work force.

I know what you’re thinking. Women go back to work all the time so what’s so major about this? For starters, I was forced into being jobless. Actually, it was my body that made me not be able to hold down a job.

You heard me right! My body was the culprit as to why I could no longer do the many things like I had before. The main one was walking unassisted.

All I remember is it was the Friday evening before a full weekend of birthday parties. I had finally crawled into bed after writing a chapter for a book that was soon to be published. In no time I drifted off to sleep.

In the early A.M. hours the loud echoes of my kids laughter in the hallway woke me out of my deep slumber and…..

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Just like that my whole face, left arm, and every single one of my fingers was numb. I tried to stand up, but fell onto the chair that was next to my side of the bed. I had somehow lost all of my lower body strength.

It was like gravity ceased to exist beneath my feet. To make matters worse the world around me wouldn’t stop spinning.

With the help of my oldest daughter and husband I got into our vehicle to head out to the ER worried I was having a stroke. One EKG and CT later a stroke was ruled out. This left the doctor baffled to what was going on with me. So I was given a referral to an E.N.T (Ears, Nose, Throat) Specialist and sent home.

The next day I saw the Specialist with high hopes of finding out what the hell was going on with me. I didn’t find anything out that day or for the next 2 months for that matter. I had all types of blood work, some odd test that shot water in both ears while I recited the alphabets, an additional CT, a MRI, an Angiogram, and Angioplasty. All results came back negative for ruled vertigo, Lyme disease, a brain tumor, concussion and tons of other medical conditions I was thought to possibly have.

I was beginning to think I had some new illness or disease that no one had heard of yet. I just wanted to be normal again! Well the normal I had grown quite accustomed to in my 35 years of life.

After a month of Vestibular Physical Therapy sessions to see if I could regain my balance a possible answer to my odd medical condition presented itself. My Physical Therapist started digging into my prior health background and that is where he began to suspect my decreased motor skills and dizziness was linked to neurological issues; ones that were caused by migraines.

I’m not going to lie. I laughed. I shook my head in complete disagreement and chuckled at this man’s logic. How on earth could migraines be the cause of so much grief? For cripes sake! I’ve had those horrible head demons for the past 20+ years and NOT ONCE did I ever have issues with speaking, walking, or feeding myself.

Nope! I was not going to believe something like migraines could ever be that disabling. That was just ludicrous!

Of course, by month #3 of seeing absolutely no improvements with my health I became desperate. I decided to take the advice of my Vestibular Physical Therapist and got another referral. This time it was to see a Neurologist.

15 minutes into my appointment I FINALLY got an answer to why I felt that I was permanently strapped into a non-stop tilt-a-whirl.

I had Vertigo Associated Migraines that were Chronic.

To say that diagnosis went right over my head was an understatement. I seriously had no clue what either one of those health conditions were. I knew the migraine part but even that didn’t make any sense to me. My migraines always had auras and would make me blind in one or both eyes. And when I did get them the attacks would only last 2 -12 hours. Not every, single day.

It was a few minutes later that I would start on a path to being educated about a neurological disease that over 38 million American’s have and currently there is no cure for.

Oh, by the way there are other types of migraines. Yeah! That was actually news to me at that time.

In total, I spent 240 days STRAIGHT experiencing chronic migraines.

I even went 18 months without driving due to the severity of my symptoms. You’d think having a chauffeur 24-7 would be great. It wasn’t! All it did was make me feel helpless and a burden to my loved ones.

During that time I tried 30 types of prescription medications, a variety of vitamins, Botox injections, and alternative methods to help with my pain/symptoms. I eliminated gluten for about 2 months and drank more water to stay hydrated. I even went as far as to travel out-of-state for about a week thinking a change in climate might actually help. It didn’t. I only came back home in worse shape than when I left.

Honestly, I still live with chronic pain. I still get migraine attacks like the one I had on Tuesday and today. When my fibromyalgia flares up it can cause me to have a migraine attack as well.

Then there’s my cluster headaches that are seasonal (Fall and Spring) When I get hit with a cluster attack it happens around the same time (11 AM & 1:30 AM) each day. The right side of my nose gets extremely stuffy while my right eye tears up. If I’m wearing mascara and eyeliner, but forget to use waterproof I end up looking like Alice Cooper.

I knew when searching for a job, part-time and evening hours were a must. There’s no way I could deal with being around people when the beast hits me for those 25-30 minute span. Trust me! I isn’t a pretty sight to see someone in the midst of a cluster headache.

They cuss, punch things, sometimes even bang their head against objects in hopes of feeling any other type of pain than the one they’re experiencing in that moment. Having a limb amputated without anesthesia would be less painful than a cluster headache. It’s actually scientifically proven to be one of the most painful disorders known to man.

You’d think with all of my health conditions I would just give up on the notion that I could hold down any kind of job. But I never have. I’ve been waiting for this very day to arrive and now that it has I’m truly thankful.

Like the George Bailey type of thankful in It’s A Wonderful Life. You know when all of that bad crap happened to him and he realized how wonderful his life truly was.

I seriously took everything I had for granted in my life before becoming chronically ill. I had a job, but never thought for a second I’d lose it. Then I was let go after the FMLA expired on my current position at the bank I had worked for. I know I wasn’t fired for being a crappy employee, but I still felt like a failure.

It took almost 2 years for me to come to terms with the fact my chronic illness is the villain in my real life story. Now I just find new ways to defeat it. I know there will be days that I’ll come out victorious and other days I won’t be as lucky.

Either way I do my very best to remain positive throughout this crazy adventure I seem to always be on.

First Day of Work Since I Became Debilitated From Chronic MIgraines
First Day of Work Since I Became Debilitated From Chronic Migraines