First, I must say I am thankful to have insurance, it is true, I am. However, I do not think they realize the extent to which I loathe their practices. Nor am I naive enough to think they care what I think, but this is my sounding board so I will speak my truth and be done with it...get it off my chest because I am not a happy camper at the moment.
For those of you with serious chronic illnesses you are aware that managing your insurance/doctor's appointments/referrals/prescriptions/etc...is a Full Time Job. A job without pay, a job that only creates stress and awe at the purposeful lack of common sense and ignorance coming from the decision makers. What never ceases to amaze me however is the fact that I know they are trying to reduce their spend but while they dilly dally over comparatively inexpensive medication approvals or appointment approvals, I end up hospitalized and another $15,000 - $25,000 is in the hole for the insurance company...all which could have been prevented mind you if they listened to my doctor in the first place.
This weeks fun all began with a change in my IVIG dose and frequency. Instead of 40 grams every 10 days my doctor wants me back on 30 grams every 7 days. given the fact that this worked well in the past and I have been in the hospital 2 times in the last 30 days it is the best that can be done to control my illness. So...last week, my home infusion company called to let me know they would send my nurse since I already have the medication and hopefully the authorization would be through by the time I needed my 2nd treatment.
I coordinated with my nurse and everything was set for 1:30pm yesterday. Now, you have to understand what is involved in prepping for a treatment. Every time I have IVIG I take benedryl and pain medicine an hour before and I use lidocaine to numb the skin covering my port. This leaves me very drowsy and I am allergic to all tape known to mankind so I also wind up a bit itchy from covering the lidocaine.
Sometimes my nurse runs late because of another patient so I patiently awaited her arrival...that is until about 2:15pm when I started nodding off. Not wanting to be rude I waited until 3pm, at this point I was ticked that she hadn't called but thought, maybe something was wrong. When she answered she was surprised that no one had called me...they decided not to do my treatment until insurance approved my change in treatment...it is a lower dose so it is actually the same price as what they approved previously.
So I called my doctor, the pharmaceutical company, my infusion company, and my insurance company. By 5pm they agreed to give me my treatment so I don't end up in the hospital but now I have one week for the insurance company to come through and approve treatment or I am left hanging. I don't have the energy to call my insurance company today, I am already weak and I am worried the stress will make me sicker so...I will call tomorrow..yikes! And that is today's 2 cents.
Wednesday, August 24, 2011
Monday, August 22, 2011
On working..living...staying out of Club Med...
Well, those of you who know me are aware that big changes have been happening in my life. First, at about the same exact time I started a new job working from home, I had my first appointment with my neuro at U of M since my surgery. At that time I had been off work for 9 months and had 3 months under my belt since my surgery. I was feeling better than I had in a long time. I still struggled with daily weakness but the length and severeity was reduced and I hadn't had a breathing crisis in months. Compared to an average of 4 times a year that is a milestone.
At any rate, my neuro decided to space my IVIG to every 10 days and reduce my predinsone as well. I thought !wonderful! but was foolish in not taking into account what a life changer working 40 hours a week was going to be. I thought "hey, you used to carry an oxygen tank and had no meds, you can certainly work from home feeling as good as you do now" Well I am a bullheaded 10% Sicilian and if I set my mind to something that is that:)
It took about 60 days and me dragging my foot, slurring my speech, tired as all get out to end up in the hospital with a full fledged crisis. For those of you who don't know what a myasthenic crisis is, it is when the muscles used for breathing and swallowing are too weak to work. I was aspirating on my own saliva and could not catch my breath. My husband saved my life because it all happened while I was sleeping. Not a good way to start the day.
Of course when I was feeling stronger and could speak my doctor's at the hospital asked what I thought set off the crisis. I said...must be the heat, and we had some car trouble, and my meds have changed. Not once did I admit that I was not strong enough to make it through a full workday...that would go against my very nature. In my head I am superwoman but in my body I am gumby...or Mr. Bill, depends on the day!
So I tried to go right back to work but that was stupid, I was seeing double and sounded like a drunk sailor. I ended up taking a week off to rest and felt better. I was back on all of two weeks when the same thing happened. BAM! In my sleep, couldn't breathe, Pat waking me up by shaking me and telling me to breathe.
This time I have to say I saw it coming. Every day by six I had a hard time catching my breath, talking, reading, thinking. By eight pm (the time my shift ends) I felt like I had sand bags on my shoulders and as if I were walking through quicksand. I called my neuro and asked if I could go back to weekly IVIG but he wanted to try upping the prednisone first. I did that but obviously it was not enough. I ended up in Club Med a 2nd time.
I have to say in all the years since diagnosis, I have always had crises during my waking hours and could always see them coming. Of course I now know I let it get too far and lost how in tune I was with my symptoms. So, I will now be back on the weekly IVIG and the higher prednisone dose until I see my neuro in October. My local neuro will see me next week to go over what happened and discuss my work situation.
So here I sit, contemplating what is the best thing to do. If anyone has the magic answer I would love to hear it. Currently I am back from a week off and am putting in 1/2 days. I really want to work but I know that want is not always should. I tow a fine line between doing too much and doing so little I start to go bonkers so if you have any pearls of wisdom please keep that in mind. I am giving it the third round of the old college try but I want to be here for my kids and what I was doing before put that in jeapordy...jen...signing out for now!
At any rate, my neuro decided to space my IVIG to every 10 days and reduce my predinsone as well. I thought !wonderful! but was foolish in not taking into account what a life changer working 40 hours a week was going to be. I thought "hey, you used to carry an oxygen tank and had no meds, you can certainly work from home feeling as good as you do now" Well I am a bullheaded 10% Sicilian and if I set my mind to something that is that:)
It took about 60 days and me dragging my foot, slurring my speech, tired as all get out to end up in the hospital with a full fledged crisis. For those of you who don't know what a myasthenic crisis is, it is when the muscles used for breathing and swallowing are too weak to work. I was aspirating on my own saliva and could not catch my breath. My husband saved my life because it all happened while I was sleeping. Not a good way to start the day.
Of course when I was feeling stronger and could speak my doctor's at the hospital asked what I thought set off the crisis. I said...must be the heat, and we had some car trouble, and my meds have changed. Not once did I admit that I was not strong enough to make it through a full workday...that would go against my very nature. In my head I am superwoman but in my body I am gumby...or Mr. Bill, depends on the day!
So I tried to go right back to work but that was stupid, I was seeing double and sounded like a drunk sailor. I ended up taking a week off to rest and felt better. I was back on all of two weeks when the same thing happened. BAM! In my sleep, couldn't breathe, Pat waking me up by shaking me and telling me to breathe.
This time I have to say I saw it coming. Every day by six I had a hard time catching my breath, talking, reading, thinking. By eight pm (the time my shift ends) I felt like I had sand bags on my shoulders and as if I were walking through quicksand. I called my neuro and asked if I could go back to weekly IVIG but he wanted to try upping the prednisone first. I did that but obviously it was not enough. I ended up in Club Med a 2nd time.
I have to say in all the years since diagnosis, I have always had crises during my waking hours and could always see them coming. Of course I now know I let it get too far and lost how in tune I was with my symptoms. So, I will now be back on the weekly IVIG and the higher prednisone dose until I see my neuro in October. My local neuro will see me next week to go over what happened and discuss my work situation.
So here I sit, contemplating what is the best thing to do. If anyone has the magic answer I would love to hear it. Currently I am back from a week off and am putting in 1/2 days. I really want to work but I know that want is not always should. I tow a fine line between doing too much and doing so little I start to go bonkers so if you have any pearls of wisdom please keep that in mind. I am giving it the third round of the old college try but I want to be here for my kids and what I was doing before put that in jeapordy...jen...signing out for now!
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