Tuesday, August 19, 2014

Blah freaking Blah

Day 465 of my Bells Palsy journey.  What I am feeling inside is blah today, no that is not quite correct. I am feeling as if my life is blah but I am mad at the Bells Palsy today. Since it is a huge part of me, perhaps I am mad at myself. Shit that does not make sense either.   I am pissed that the fricken bells caught me and changed my life.

Don’t worry I won’t do anything stupid like take my life, although since I have been on this journey that thought has occurred to me more times than I wish to admit.  My children Amber, Alex and Tim along with my grandchildren Lexi, John, Adrienne and Toby keep my feet firmly planted on the ground and not in the ground.

My kids, my grandkids, my life ya know? I have a huge family that would make sure my kids never felt alone but damn it, its my job to be here for them if they need it.  When their dad, my husband walked out on us in 2000 I vowed to God that I would raise these 3 young children to be good adults with the help of my family. Well they are all adults but they need me at times.

Anyways I need to get back to telling how I feel, so perhaps I will get out of this damn funk I am feeling. I have felt so alone since this thing began, yes family and friends have tried to keep my spirits up but as much they empathize with me, they do not feel as I do.

I hate the fact that I stumble on some words. I do mean simple words like numbers and names. Hell if a word has two or my syllables or even certain letters in a one syllable word I will screw it up.

I cannot even say ‘I love you’ correctly, it comes out like ‘I lub you.’

What’s worse is when that babbling brook sound comes. We all have these little things inside our throat which help us get the food down our throats. Yeah the ones on the left side of my throat are affected and when liquid gets stuck there I sound like I have a babbling brook in my throat when I talk.

Wednesday, August 6, 2014

The Medicine Problems

So last Wednesday (July 30, 2014) I had an appointment to renew my assistance benefits and medical card. The letter I got from the office 3 business days prior said my worker would call between 8 and 8:30 am on 8/30/14. I called down  on 8/25/14 (a Friday) and left a voice mail, stating I was supposed to be working at that time (home health) and could not keep that appointment.  I also re-stated that because of my speech issues I needed an appointment in the office where I could write down my responses if needed.

Trust me  since this Bells began I have told this worker each time I must re-certify every 6 months that I need an in house appointment, my request is ignored always.  Yes so we run into this problem often,

On July 28 I wound up in the walk in clinic with a bad rash. It turned out to be singles. Ughh. I also left a message with my primary doctor’s secretary to ask my doctor to refill my tramadol prescription,  Anyways I got my prescription for shingles with no problem and went home to begin my course.  I was still waiting for my case manager to return my call and reschedule that re-cirt appointment.

On July 30, I work from 8 am until noon as usual. When I was done with the work day, I checked my phone and seen the case worker called. I returned her call and when I got home I napped as usual.  Since I was out of the tramadol by this time I took a gabapentin and went to sleep.,

On July 31, I worked the five hours as scheduled and kept checking my phone for a message from my worker. Since I am on my gabapentin during the day as I can tolerate it, it is going quicker than usual.
On Friday August 1, I  give the case worker another call, leaving my name, number and ss#.  She does not return my call.

On Monday, August 4 I walk up to the hospital to refill the gabapentin which is now out as well. I ask if my tramadol prescription is done yet. I learn from the tech it has not been sent over, so I ask her to fill the gaba and head back over to my doctor’s to ask about the tramadol.

I am informed by his secretary that  my doctor refuses to fill the tramadol as its meant to be a one time thing. I told her, but I have been on this medicine for 15 months now.  I know its not her fault and told her I would discuss it with him at my next appointment which was the following day.

I then went back over to get my gabapentin and am informed that my insurance is not working. I am like wtf, but remain calm to the pharmacy tech as its not her fault.  I called my case manager once more and got her voice mail. I passed the phone to my son and told him to leave a massage.

That afternoon we get a snail mail from said case manager who informs me I got until 8/14 to call her and do a phone interview or she will close my case.

Its now been 2 days since my son called and the worker still has not returned our call.  Today after I get off work my plan is to call the worker and if I get her dang voice mail, I am calling her supervisor. Then I am walking up a mile to fax a summary of these calls and this problem to my worker and her supervisor.

   I am off all medicines now and have been since Sunday.  Let me tell you never pain hurts like a mother--  Bells Palsy sucks the big one but with doctors who will not listen and a case manager who does not listen or return calls it sucks even more.

Monday, July 21, 2014

Better than a Hallelujah

Yesterday, July 20, 2014 was my Baptism, and it was way more special than many family members or friends realize.  The basis of this testimony goes back to July 16, 2013 when my brother Trace called and asked if he could come pray with me. I had been praying multiple times during the  first 66 days since this Bells Palsy began for a healing. I wanted this crap gone.

Trace and I made plans for him to come down the next night, and what a prayer he said.  I echoed his prayers silently for the next 3 days. On July 20, 2013 shortly after 3:30 in the afternoon as I sat here counting the minutes until I could pop another pain pill, I got a healing. I was 70 days into this Bells journey and well it had been extremely rough.

With this healing came the ability to speak more than a word at a time, my ability to see came back and the ability to smell very strong scents returned. I could finally get a spoon in my mouth easier and I was on top of the world because I knew the prayers (the one Trace said and mine after I prayed with him) were answered.

I went to church the next day with Trace and his wife Cindy and the Praise team sang “Mighty to Save”.  One of the lines in that song is ‘He can move the mountains’ and well since God had moved the mountain the left side of my face had become I took it as a sign that I was meant to be in this church.  I immediately felt at home.

Prayer is a daily thing for me and I know God understands that those prayers before he moved my mountain were straight from the heart. My prayers before Trace prayed with me were blunt I am not proud of them. I did tell Trace the basis of those prayers but I remained silent about them for the most part because I am so ashamed. However, yesterday, after I had been baptized the realization set in about those unanswered prayers in a beautiful song.

Carol and Kathy sang “Better than a Hallelujah” by Amy Grant and did a great job on it. The first line of that song got me and had me in tears, and I kept wiping them away through the service.

Before I got that first healing I was praying to God to heal me or bring me home. I apologize to mom, Amber, Alex, Timmy, and  the rest of my family for saying that but I was in a very bad place. I was so relieved with the healing when God moved my mountain, but that bad prayer kept haunting me.

When those ladies sang “Better than a Hallelujah” , I realized God did not hear my painful words in those first 66 days before Trace prayed with me God just heard my music. With that understanding came the peace I had been searching for. I have come along ways from that dark place, and I am much stronger now.
I may never be healed from the physical aspect of this awful thing called Bells Palsy, but I know in that millisecond between when I close my eyes for the final time in this world  and open them for the first time in Heaven I will be totally healed.  If God chooses to heal me totally before then, it will be a miracle I will celebrate with style.

Perhaps my face has not been healed as I wanted it, but, I am realizing I got a far more powerful healing  than I could have imagined. Over the past 15 months since I got sick, my soul got the healing it so desperately needed.  I no longer judge my fellow humans, and my empathy is stronger than it has ever been. I think before I speak as I have too so no bloopers emerge.  I got humbled and am not as independent as I once was. The greatest part of that healing is I am walking right with God once more, and that brings the peace I have been searching for so long.

Sunday, July 6, 2014

George the Cpap Machine

George is the name I have given my cpap machine. With my soft pallet almost totally paralyzed I have limited use of this very important part of my body, hence the reason for George, my cpap. It sucks, but if he keeps me here to enjoy my kids, grandkids, family and friends then he is worth the hassle!

So where is your soft pallet? It’s a flap of muscle and connective tissue between your mouth and nose. It is supposed to move freely when you breathe and it closes so you can blow your nose.

Mine is almost stuck shut but not completely.  With it being almost immobile it really does not allow me to properly breathe all the time, blow my nose or smell things for the most part.

The soft pallet moves when you speech and swallow. Since mine does not move freely I have issues with those things as well.  However the worse part of this paralysis with Bells Palsy is the breathing issues.

When I am awake, breathing is okay as long as I remain sitting and not laying down. I get out of breathe quickly if I close my mouth to breathe or use the straw as I take a drink. Even while talking I really need to stop and take a breath or I get winded.

I was miserable when I tried to lay in bed to sleep during the first year into this Bells Palsy.  I would often wake, and I snore loudly. My mouth would be so dry when I’d wake it was awful. I finally had a sleep study done on May 5, 2014 and on June 4, 2014 I learned at my next doctor appointment that I had failed that sleep test. 

With 37 occurrences of breathing issues in five hours of that study I was told with mild seep apnea.  I had to enter the hospital once more to be fitted with the cpap and they determined the level of pressurized air I needed to sleep well. I am a 9 and I am middle of the average range of 8 to 12, the highest one can go is 20 so I, like many others am half way there.

Anyways I brought George home on July 1, 2014.  That first night was rough and I woke up with it lying beside me in bed.  However I am happy to say I am sleeping much better and wake rested now. Last night was my fifth night with George and the fourth night where I kept him on for 7 to 9 hours.

For more technical definitions of a soft pallet and its functions, check out this link http://www.britannica.com/EBchecked/topic/552432/soft-palate

MY Bells Palsy Case

My Bells Palsy began on May 12, 2013, and this severe case has stuck with me like a bad penny. Its fourteen months later and it’s still hanging with me and my doctors say it will always be there until my days here on earth come to an end.  On this blog I will talk about my journey and you can look back weekly for a new entry.

Bells Palsy hits the facial nerve and when this nerve is damaged the facial muscles do not move. Your nerves tell the muscles to move no matter where the nerve is within the body. When the facial nerve is damaged the muscles in your face don’t work as they should.

You would not think a damaged nerve would do so much damage but it does and in all the cases of Bells the facial muscles become paralyzed. The extent of damage determines the extent of parts paralyzed.

The entire left side of my face from my forehead down my throat and from the left nostril to my left ear is all involved.  After fourteen months I am 60-65 percent back. Some parts of that facial nerve will not heal, therefore I am left with lasting damage.

I can deal with my lopsided smirk, my non-winking, blinking eye, and an ear which hurts without much problem. The thing that bothers me most is the reason George came into my life.  My soft pallet is involved, and that is a very important part of your body.  Next post I’ll tell you about the soft pallet and George.