Okay… so… I’ve finally bitten the bullet and switched my Rheumy to the one local my house rather than on main campus Cleveland Clinic. My primary excuse for moving my location is the tremendous waste of time.
I had to walk from work 15 minutes to the parking lot, drive 20 or so minutes to the parking garage and get to the 5th floor of building A. $6 later, it was either head back to work for an hour or head home and work from home. There was a whole lot of waste considering it is every freaking month.
So I made the switch. Now I go to the clinic location 1.5 miles from my front door. It’s stone throwing distance from the mall. Parking is free and walking is quicker than the rigamarole I was dealing with at the other location. THOSE were the benefits I was aware of before.
Today, I got my first infusion at the new location. The infusion center at main campus is shiny and new. The chairs are brand new recliners complete with personal TVs. Each chair has its own little room (curtains). It’s very sterile and impersonal. HIPPA would be very happy.
And here I am. I’m in a hospital recliner. One TV across the room. Seven chairs side by side. People in each chair. Everyone hooked up to their own personal flavor of poison. Everyone pretty much in the same boat.
Everyone else (all but the neat skinny lady in the far corner and I) have their company with them. To my left the woman’s partner and their kids. To my right, a man with a blue vomit bag being held by his wife.
I have Gatoraid and Teddygrams.
I have a toasty warm blanket and a pillow.
I have Wifi and my tablet and my Orencia.
I did it for a bunch of practical reasons.
I’m glad I did it because maybe glitzy and sterile aren’t all they are cut out to be.
So, I got a phone call this past week. Apparently the insurance company (or the company I work for) noticed that I hit a magic threshold in their reporting system and it triggered a call to see if there is anything they can do to make my life better (read cheaper I think). I talked to a very understanding nurse who looked at my medical record and said… Oh… you have rheumatoid arthritis and you are taking Orencia. I think that is probably what triggered it.
It’s like 8000 dollars a month between the infusion center bills and the medicine.
It’s difficult to think about the fact that this is going to continue for the rest of my life to one degree or another. It’s sobering.
I keep thinking about the notification from the drug companies saying that they will help with the cost of the medication if you have private medical insurance. If you don’t have insurance, the cost is so horrendous. I think about where I am and the fact that I have a good job that keeps me in insurance. I don’t know how people deal with the pain if they don’t have the facility to pay for the drugs that stave off the damage and the pain.
Updated: August 20, 2014
Author: Figment of Fitness
Keep the dreams alive
Saturday morning… Coffee this morning that is twice as much hot milk as coffee. I realize (as I sit in the quiet of my special space watching light steal the darkness from the sky) that everywhere I go changes me. Brings new realizations and experiences… and I work to make them mine. Ecuadorian coffee… Vietnamese coffee… Espresso… tea brewed lose in my infuser cup…
It is a good morning. It was a good week.
I had to put my infusion off for several days, so it was starting to be an ouchy week… but not too bad.
Because my finger was being very problematic for almost the entire month off and on, the Dr wanted to see me. Turns out she isn’t actually in clinic on the day I was there, but she wanted to be paged, and she was, and by the time I was done with my adventure (Nurse, PA, Infusionists) she was there. She’s reasonably happy with my progress. She suggested I go back on prednisone for 2 weeks at 5mg a day. I don’t think I will. It is progressing and is tolerable. I think I’m okay. But it was a good feeling to have her make a special trip into clinic to check it out and make sure I’m okay. And I found out that she was concerned enough about it to be looking up possible orencia reactions to see if maybe that was the issue. I had to smile at that. I was trying to look up the same things.
My infusion went off without a hitch. I got juice and crackers… always a yummy treat… and was on my way after only 90 minutes (both appointments, end to end)… just long enough to cost $6 parking… yay me.
And I’ve managed to try to reset my appointments to first thing in the morning. Not as early as Dr Booth, but not bad. It makes my parking a little more creative, but if it isn’t storming I don’t mind parking on the roof.
So here I am. Bright and early on a Saturday morning. My furniture finally came yesterday (the kitchen table and my desk that we have been waiting for 12 weeks to see). It showed up yesterday morning and the nicest Amish guy and his driver unloaded it and set it up. You can still smell the faint traces of wood finish on them. And today I make a concerted effort to try to get the office cleaned back up and organized and tomorrow, maybe, I can get back to trying to finish unpacking in the bedroom.
And Monday, my little girl and I (my daughter, the one who said she would never ever ever do Yoga) start Gentle Yoga at the Rec Center. I’m looking forward to getting back to Yoga. MAYBE I will even start doing the 45 and over yoga a second day a week!
Love and Light
So… we are in the new house and it is starting to feel like home. I still have a good bit of cleaning to do, but it is feeling much more like we live here and not we have a maze of boxes. The new job is incredible! I’m having fun and learning and I’m being a productive part of the team. It makes me smile. I don’t always look forward to the drive in right now, but that is because the roads are sometimes kind of iffy not because of the job.
I realized it had been a month since I posted. Yesterday I was way busy with trying to get boxes unpacked and put away… so another day passed with no posting. But here I am. Alone in the dark, realizing how much my RA took a toll on me for the past month.
I don’t EVER want to go over two months without my meds again. I got my infusion on Thursday last week and it was almost 9 weeks between. Not good. Way not good. The last couple weeks it was all I could do to get up on the morning and get to feeling human. I was running on prednisone (not a good thing) and determination. By the time I got home from work every night all I wanted to do was take napproxin and sleep.
I was tired, short tempered, and I hurt. The day before my infusion hurt so badly that my fingers wouldn’t work when I told them to and my knee wouldn’t bear my weight for long (and my weight is starting to come down slowly!).
I’m glad I spent an hour on the phone with the insurance company. Goodness only knows how long I would have had to wait if I hadn’t pitched a fit.
But the infusion was Thursday. The infusion center at Cleveland Clinic is incredible. They give you graham crackers and juice and a TV and a blanket and you can have company while you are having your infusion. For me, given it is 30 or so minutes, the visitor part was kind of nice to have but not as important as if I had been one of the longer infusions.
The infusionists use a neat light to find the good veins to hit and it went really well. I still miss Keoto, but I think I will be able to do this. In July I will be able to start getting my infusions in my town rather than having to go clear into Cleveland to get them. I will probably try to do a work from home thing those days and save some time. It’s way better to have to drive 2 miles to the clinic and back than to take thirty minutes by bus or car and have to pay for parking. I’m starting to really like the city but I’m starting to really dislike parking again. Eh, it all comes out in the wash, I know. but if I can avoid the extra hassle I think it would be awesome.
And here I sit, alone in the darkness, my creatures at my feet… coffee and a shawl… missing my left behind son… and contemplating getting around to do my daughter’s hair (the thought of that doesn’t make me wince this morning either!) and getting my butt ready for work.
The article I was interviewed for about infusions and what I do on infusion days is now online!!! 🙂
Turn RA Infusions into “Me Time!” – Rheumatoid Arthritis Treatment – Health Monitor.
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