It’s infusion day. I am SO glad, this month, that it is infusion day.
I’ve probably been pushing too hard (let’s face it, that’s kind of a given).
Stress has been high.
But I think part of why my hands are SCREAMING right now is because I went to the dermatologist. Apparently a tendency to accumulate warts is a thing with RA. Who would have guessed. Shocking I know. But I’ve been acquiring several (they treated 8) and the ones I’ve been acquiring have started to become problematic. So five months ago I got the first available dermatologist appointment I could get. She froze my warts and gave me instructions on what to do as aftercare (soak hands 20 min in the evening… emery boards to file them down… salacitic acid…) . Blisters are a good thing! Nope. The freezing hurt like a… well, you know the rest of that saying… but man, after the pain and stinging of the freezing… the blisters really are hurting.
And… I’m pretty sure that contributed to the flair.
So, I’m sitting here, thanking my lucky stars it is good drugs day… slathering on the Tiger Balm (because it turns out that Voltaren Gel is bad for dogs and I can’t very well wash my hands after I put it on when my hands are what is screaming)… and considering if it was really worth it trying to get the stupid warts under control.
It was. I know it was.
But damn… there are times when I really believe that the cure is worse than the condition in a lot of cases.
I keep thinking things can’t possibly get worse. Eventually life has to start not sucking, right?
Counting down to Thanksgiving and hoping to maybe go to Denny’s… and Giant Eagle for some Turkey legs to smoke on the grill.
Probably not this month… Should be tomorrow but probably not this month…
I have been on Orencia INFUSIONS (that’s when they run an IV into your arm and deliver the meds in the infusion center) for eight years (a little more than 8). EIGHT YEARS… eight years… Six and a half of those years has been with the same insurance carrier… before they got acquired by a drugstore chain… one I’ve had issues with before because my stupid doctors refuse to write my prescriptions in the way the drug store chooses to be able to fill them… and yes, it is THEIR CHOICE to not be able to fill them the way the doctor writes the scripts.
Yesterday I got a letter in the mail telling me that my infusion (the one that was supposed to be tomorrow) was denied. The decision was made in August (woman on the phone let that little gem slip), the letter was written September 8 and postmarked September 9 in Arizona. It took six days to get to Ohio from Arizona.
To start with… it took six days to get me the information that the infusion that I start to really need by four or five days before the 4 weeks are up would be denied… it was supposed to be 9/16. It’s not yet cancelled but it probably will be today because… yeah…
The USPS couldn’t get it to me in less than 6 days. Good thing they are being way more efficient now that we have that shiny new head of the postal service… sigh…
I called… I called the clinic to see what they could tell me… they are working on it. THEY sent the follow up paperwork a week ago when they got the notification that after 8 years the insurance company thinks maybe I should just do things differently now.
I called the insurance company.
I got a very nice man that commiserated with me, but who had to put me through to the mega drugstore chain who owns them and who decided that suddenly they need more information.
At that point I became a very stupid four year old who needed to be patronized. The woman on the phone explained four times that they need more information. More papers need to be provided before they can decide again whether or not my meds are justified. After I got pissed and told her that I’m not a stupid idiot and that I READ on my letter that the doctor needs to provide more information and that, no, indeed, I did not need her to read me the letter again telling me that they just need more information and that I can file an appeal.
I snarked at her. I snarked hard.
She finally coughed up the information that the denial is typically because the doctor hasn’t prescribed the maintenance meds in such a way to ensure a 90 day supply… of IV infusion meds… that get administered in the clinic every 4 weeks… and have been for 8 years.
I can file an appeal.
That will take 15 days for the first level… then they will send a letter… which will make it 22 days if past history is anything to go by… letting me know if it is approved or again denied… at which point I can again file an appeal… and another three weeks later (that makes my 4 week infusion at worst 10 weeks out unless it is completely denied then suck farts old woman).
And all of this came two days after I watched someone dear to me drink a Pepsi… She has RA. She is finally (after several years… after MTX and plaquinil and enbryl and weaning herself off of 7 years of prednisone) pretty much controlled. Her hands aren’t working “right” any more and she has to pick up her Pepsi bottle with two hands to drink it because she can’t physically pick it up with one hand any more.
All of this while I sit and examine the nodules on my fingers that so far aren’t getting any bigger.
All of this while my fingers and toes are feeling like someone has poured hot ground glass into the finger joints and the joints where my toes connect to the big part of my feet.
All of this while hospice.
All of this while trying to hold it together
All of this… all of this… all of this…
And you know, <sarcasm> stress certainly doesn’t make any of this worse and it certainly doesn’t trigger a flare and it certainly doesn’t make me fall apart</sarcasm>.
I have to take walks with bear. It means too much to be able to push his chair all over the neighborhood and spend evenings out and about together. No matter what it takes, I have to push him on our walks. No matter what it takes. Time is so short and so precious… I have to… we have to… no matter what. What if the last walk was the last walk? What if… what if…
So, it’s infusion day again. I only have to wait three more hours. I’ve been counting hours all night long… since about Thursday… And here it is, infusion day!!! I’m five weeks out from my last infusion again. I hate … Continue reading →
Not quite dawn and here I sit, waiting for it to be infusion time.
I wasn’t totally sure I was going to be allowed to get my infusion today… I have been messing around with an infected toe for… well… several months. You would THINK I would have had it taken care of long ago, since my out of pocket maximum for the year is well past and I should KNOW better than to mess around with stuff too long.
I didn’t.
Instead I waited for it to get better on its own. I cleaned it all the time and kept bandages on it (to keep my sock from sticking fast) but it would not heal. Finally I went to the doctor (have to go to the family practitioner first so they can look at my toe and tell me it is infected and I should see a podiatrist. They can also tell me that I don’t look like I have RA because all of my fingers and toes point in the ‘right’ direction and “Let me TELL you about my mother’s RA. It was so bad, when she was 70, that she couldn’t make a fist any longer and rather than pulling weeds, she took to pouring gasoline on them”… so yours must not be that bad.
grrrrr
sigh
So, I go on a mad podiatrist hunt.
There is something about being affiliated with a megalopolis hospital system (I thought… ha ha ha) is that there are bunches and bunches of doctors in the system so I would probably not take FOR freaking ever to get in to see any given specialist, even if I would have to drive 30 or 40 miles to see one. Yeah… NOT so much. I have an appointment (the soonest I could get) December 10 35 miles away. They changed it from the one I had on December 28th just up the road.
I was a bit miffed, to say the least. I have two ‘races’ coming up in December and I really didn’t want to have to deal with it that long.
The ‘other’ hospital system wasn’t any better. They could work me in on December 18.
There are hospitals and medical pavilions EVERYWHERE around here. HUGE ones. Dermatologist? six months waiting list (better hope that melanoma can wait just a LITTLE longer… ). My family doctor is taking “sick people” appointments a month out and physicals are three or four months out. <<that reminds me… it’s time to make my April appointment for my physical>>
I remembered the third option for doctors and… amazingly… called Friday and got worked in on Monday. The doctor, argyle socks, burgundy denims and an incredible bow tie, was amazing. His computer had a 26.2 sticker on it (made me smile). He fixed me up before I left. Cleaned out the yuk and its cause and made sure it would say gone (at least for the foreseeable future).
He told me that my RA has spawned bunions (haven’t you noticed your running shoes fitting less well?) that may need to be addressed in the future. He sent me on my merry way.
I emailed my doctor yesterday to make sure I should ACTUALLY come in for my infusion. No answer, so I guess I should.
So here I am, dressed in sweats and a long sleeved T-shirt getting ready to go to work at the other computer in my office and get some crap done… in a couple hours I will trot off to the doctor and infusion center!
I hope they have the yummy graham crackers today…
For now, let me leave you with this parting observation… if something hurts, have it looked at. Don’t put it off hoping it will fix itself. Don’t chalk it up to old age. Have it looked at. You are worth feeling better for…
My second week post-op work from home is quickly coming to an end. Tuesday I saw my surgeon and he released me to go back to work on Monday. By Christmas I will be allowed to lift more than 10 pounds. I have a 22 pound turkey to make for Thanksgiving. This may be interesting.
I’m nearly to the end of my Red and Green and White paper chain scarf. It’s long enough to wear, but I would like another three or four links before it’s long enough for me to really like it. I wore it to my infusion yesterday and I got compliments on it! In my head, they were just being polite, but I accepted them. They made me smile.
When I was going to the infusion center on main campus, it was located right outside the Rheumatology department. I don’t know if that was by design or accidentally. But that’s where it was. It was just there. Safe. Kind of sterile to look at. Technologically awesome. Great people. But it was by the Rheumy’s office.
It’s easy to kid yourself about the infusion center when it’s where you can connect it to your illusions. The curtains create individual little rooms where you can hide with your infusion, enjoy some juice and crackers with the poison of your (your doctor’s) choice. Very illusion inducing. You’re just there and while there are people also there, they are just there too.
Yesterday, going to my new infusion center, my reality caught up to me.
The man next to me was having issues with his chemotherapy and was trying to decide if it was time to have a port put in to make his infusions easier to deal with. Fewer pokes and sticks. His wife was busy looking up the alternatives (gotta love smart phones), which ports would be most effective and most comfortable for him.
The woman in the chair on the other side of me was getting her poison with blood. She had a lot of trouble with her IV and they had to call in one of the surgical nurses to run hers. Hers was very painful. I tried to distract her while they were getting her set up. Her partner took their little girls for a walk so they didn’t have to watch. She is tied to her chair for two hours ever three months.
The woman with the awesome piercings across the room was there for about the same amount of time as me. She was neat. I hope she’s there again. I would like to get to know her.
On the counter under the TV there was a pile of neck pillows that someone had home-made and dropped off. There is a box of Teddygrams and a box of soda crackers. There is a fridge full of juices and Gatorade and diet soda. There is a box full of hats and scarves that people have made and dropped off. Most were fleece. One hat was crocheted in the most interesting colors. It called to me from across the room. It became mine. The pattern makes the colors look like puzzle pieces.
Reality, yesterday some, more this morning, kind of snuck up on me and took my breath away. I KNOW all about the drugs I take. I know what they are for. I know what they do. I know that without them life gets to be really nasty for me.
I don’t feel so alone somehow having sat through everyone else’s reality. I’m really glad I switched. I feel, somehow, more like I’m part of some weird ass community.
Sometimes, though, realizing that I will be going there probably for the rest of my life to poison my body… that I will be taking my chemotherapy drugs forever… that I will be tricking my body into behaving nearly the way that normal people’s bodies behave… it all caught up to me. I can’t say that I have cancer, because for me it’s not cancer, but I have to let places know that I’m taking chemotherapy drugs because they are what they are.
The hat came home with me. It’s a little scratchy… the yarn is kind of stiff. I’m going to try fabric softener… It wanted to come home with me to remind me of my reality. This morning I’m enjoying coffee and I’m thinking I might take a break from my computer to go take a long hot bath.
I am glad that I’m not yet to the point where I scare people with the way my hands look. I’m glad that I ‘only’ hurt as much as I hurt. Mostly I’m glad that I learned that I need to treasure every second because you never know when it will be your last.
A Figment Of Fitness 