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.
Tuesday, August 19, 2014
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.
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.
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