When Change Happens

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It’s been a very very long week.  It was a very very long week by Monday and it has just gotten longer as the week went on, and I realize more and more how much stress completely depletes me.

Saturday was one of those days where I was actually getting things accomplished, things I NEEDED to get done and I was getting them done!  It was awesome… until…

My daughter has been weening off of her epilepsy meds.  The doctors, a year or more ago, told her that they thought that there wasn’t epilepsy there and that it would be safe for her to start stepping down.  This year she finally felt ready to take the chance and start stepping down, slowly, off of the meds.  The lower dose has made such an incredible change in her personality.  She’s back to being the squirrel girl that she used to be, and it is wonderful to see.  She still has days when I want to thwap her with a pool noodle, but those days even are way less than before.

Saturday… she was standing in the dining room watching out my office window, and my son came in and asked how long she had been that way.  I was working on the computer so I wasn’t watching her.  I didn’t know what he was talking about.  She was standing where my office and the dining room come together rocking, not blinking, staring straight ahead.  He snapped his fingers and talked to her (but she has ignored him before)… I got close and talked loudly to her… I flicked her ear… nothing.   Then suddenly she stopped rocking… blinked a couple times… and was back.  Complex Partial… probably… and the clock resets to where she won’t be able to drive for six months and she was sent into a dark place for several days… a dark place that I’m not sure she is quite out of yet… and she is back to being terrified that they will start happening again.  Dose went back up to the last step and we wait to see the neuro…

Monday socked it to me again.  Bear has been on his meds.  He has been fighting the depression.  He has been staying active and doing everything he can despite the IPF.  The insurance company, a couple weeks ago, said they would be sending the approval letter that he was going to be covered for his new meds and the meds came.  He’s been on them just over two weeks.  He had hope.  The letter came alright. It was the official denial letter.  A CARDIOLOGIST determined that he didn’t need the meds for his LUNG condition (I guess they couldn’t find a pulmonologist to decline it because you know… lungs and shit… kind of surprised they didn’t get an OB-GYN or something).  They won’t be covering the $8500 a month meds.  If I want to work a couple more jobs though they would ALLOW me to buy the meds (because chuck fou yarley).  Have I mentioned how much I despise our drug insurance?  Scale of one to ten about a nine hundred at this point.

I know how much people hate drug companies, but I can’t say enough good things about Gennentech.  They had gotten the denial letter as well and when I called them (after spending 20 minutes in the bathroom in tears (yay panic attacks at work) on the phone with the insurance people (not our department that department… not us, them… nope not us the first department… sorry… you can always pay out of pocket and we will GLADLY take your money).  THEY had already gone through THIER process of approvals and they have approved Bear for the meds for free.  I know in my head that this isn’t simply out of the goodness of their heart.  I know that they will be gathering his data from the doctor on his progress and he is, in effect, a guinea pig and that they will use his data to help sell product going forward but you know what, I don’t care.  If there is a chance that the meds will slow the disease and help him live longer then I don’t care why they do it.

I’ve been worrying about having Pulmonary Fibrosis because of RA.  I had my pulmonary function tests on Tuesday.  No results yet.  I know the humidity has been kicking my butt the last several days.  I’m going to have to start using my inhaler again to see if that will help me breathe better.

All of this has had the effect of exhausting me… completely… I could cheerfully sleep all day.

Just two more days… then we are back full circle to the weekend.

High point in my week… I got a special mix of ‘booboo oil xxxx special’ from Rainbow Sky that Vicki put some CBD oil in and it helps.  It’s coming up on infusion week and I’ve been starting to have the achies (that naturally the stress has been compounding) and this new mix is really helping knock the edges off the pain.  I’m going to keep using it and I’m probably going to be having her make me another batch of it when I can get a bit of money ahead and see what this stuff will really do when I need to have it done.

And the thunder is coming… see what Thursday brings.

 

Love and Light
April Wells
7/13/17

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