I started this last week sitting at Radial Café. D and I had plans to go out for coffee that morning and as we approached the coffee shop I developed a sudden craving for my favorite “green” restaurant just a bit further down the road. Radial shows up on my Facebook and one day they had a blurb about French toast with chocolate, strawberries and pecans. I packed everything up and went over there to write. And eat of course. I had French toast again when D and I went. Not the same as before but absolutely excellent.
D was online and listening to the words that were coming out of my mouth but she was about a million miles away. Not feeling well. Post flu shot yuckies. Piece of cake compared to the flu but still no fun and she had to go and landscape for a couple of hours at a client’s house. I was busy at the time making MORE phone calls to various people about the Remicade. When I called BCBS I spoke to Peter. I liked Peter. Peter gave me good news. Peter told me that I had in fact been Approved for Remicade and that was great but Peter did even better than that he helped me make it a little faster (and after all this god damn time any little bit helps) Peter informed me that if I gave him my doctor’s fax number he would fax instead of mailing the letter. Not having the number handy I called Dr. Parris’s office and informed them that my APPROVAL letter was coming by fax, if they would so kindly give me the number, which they did. I also encourage them to get their asses in gear and set me up an appointment right away so my first infusion could be as soon as possible. (To date I have not hear a peep out of them)
So after I had called Peter back and given him the fax number I took that piece of paper with the fax number and Peter’s name and extension on it and put it in my purse with my BCBS card. It has been my experience that if you speak to the same people regarding your health and you find them to be even modestly good at their job and they don’t cause you to consider homicide each time you deal with them the process will be more efficient and less likely to encourage you to drink to excess and yell at the people you love most because you are so frustrated your afraid to light a burner on the stove for fear you may burst into flames.
I didn’t really have any plans for the afternoon, which I just happened to mention to Janelle at Dr. Parris’s office, as a little reminder that I am very ready to begin. Truth is with the holiday it will likely be the week after that we begin. We better or they are going to be on the receiving end of some really nasty calls everyday I don’t hear something. Something good. How hard is it really to keep a girl in the loop? Especially when she is not only checking in but doing some of the leg work to get through the process.
D has been writing quite a bit since she said goodbye while I did not give a farewell address and I have posted almost nothing. There has been plenty going on in my head and even more going on in my days lately.
It all felt like the same things that had been going on for almost a year were running circles in my head. I know that D has struggled with it, feeling like she was saying the same thing over and over. In one way her issues were a thick layer of salt in my wound. By no fault of her own. It made it hard for me be kind to her and deal with the mountain of baggage that had fallen into my lap. After a very long tail chase I fell backward into a hole and have been thinking and planning on how to get out of the hole, sometimes I scratch and claw at it trying to get out. Other times I yell and scream at the hole, taking a bit of the responsibility for being in the hole but mostly blaming the hole for being there. My lessons revolve around all the feelings that have come in giant freight car quantities with the diagnosis and actual symptoms of Ankylosing Spondolytis. After three TNF blockers nothing has been very affective at halting the inflammation that causes pain so intense and constant that when it abates I feel strange and unbalanced. But that doesn’t happen often. The inflammation is in there building tiny inroads, laying the foundations to bring my joins closer. That would be nice if we were talking about my group of friends but we are not we are talking about my vertebra that are every minute closer to being fused to the neighbor vertebra, on each side. They have put aside their differences and are willing to make the commitment for life. My life as it turns out.
I spent about 15 years with a chronic disease before AS. Lupus, while early on no one had really heard about it or knew anything about it more people seem to have an understanding of it these days and therefore acceptance. In other words they don’t think of Lupus in the same way as Cinderella’s evil step mother, a total bitch but not real so in the end not a big deal. The course of my SLE has not been that bad. Once we figured out the vascular stuff everything else was pretty easy. My AS is not like that. And we are back to no one having heard of it which makes it harder I think for them to grasp the meaning of having such a disease. Unlike the path of Lupus (SLE) in my life I would characterize my course of AS with words that would include rapid, aggressive, and unresponsive to treatment and none of those are the things you want in a disease. Crippling. Painful. Not way up there on my list of things I’d like to do, actually it rather gets in the way of what I want to do.
In the hand written version of this story (while at Radial there was no plug near us so I wrote in my journal) I rant about doctors and insurance companies but that is certainly nothing new so I am skipping it and moving forward. Well so I was looking for the part where I wanted to jump back in and there is a rant about meds—and adult beverages. Last week we returned to the neurologist for the follow up (read: pointless waste of my time, but time he gets paid for, so he asked me to come again- in 6 months. Yeah, right) and he made several comments about changing my meds. Uummm, let me think about that for a minute, no. Dr. Parris, the rheumatologist that has studied these diseases and me for over 15 years works with me to keep the correct balance; you do no have permission to FUCK with the meds. He also suggested I remove caffeine from my diet reminding me that most teas and sodas have caffeine not just coffee. OMG, they do? I HAD NO IDEA. Maybe it just slipped his mind that I know how to read, I can even read those funny rectangles on food and beverages called Labels. Shocking, I know. There have been times when I gave up caffeine which my meds don’t really mention, alcohol on the other hand is mentioned on all sorts of little rectangles right on the pill bottles. They even come in lovely colors such as neon yellow and electric blue and they strongly advise you not consume adult beverages of any kind while taking that medicine. Well for me, that’s forever. Now I have given up much and lost even more because of the damn diseases I take these meds for so while I am here and able to consume liquids some of them are going to contain alcohol. And caffine.
With all the aimlessness and standard issue crap that I have been working on making peace with I slipped, tripped over my bad attitude and landed in my own private pity party where I stayed for a while. There were no guests, except D every so often. She mentioned to me that I needed to talk to someone other than her about it. I was talking to other people they just don’t get it the way she does. Well Steph does but her father-in-law is in a persistent vegetative state and her mom is dying from a very aggressive form of Alzheimer’s so she has her own party on occasion. It’s fine as long as you don’t stay there. That is a terrible place to be stuck and I was feeling uncertain as to how to dislodge my self from the endless circles pain, frustration, helplessness, anger, if you have read more than a few posts you know the cycle. Or maybe you have your own cycle.
Little more than a week ago I went over to a friend’s house to meet her daughter. Bella had just moved back from Florida and was getting settled in. Stella, her mom who is my friend had been anxious about having her come. Stella had arranged a short leave of absence until they could settle into a routine. I had been hearing bits and pieces of the story for months. Bella was in an auto accident about two years ago and it left her a quadriplegic. Stella asked me if I could come over and sit with her a few hours a day three days per week. The day I went over and met Bella so that I could become familiar with what would need to be done, the wheels began to turn. I am not pitying her, she is a fiery one, I was inspired and comforted by her presence. I don’t do much some days, some times we sleep, but often we talk. She made it through what most people would consider their worst nightmare and has not lost her spirit along the way. I think we have both found not only a companion in the health care giver- patient sort of way but something more than that. We have found a friend.
I am happy that I can be of some comfort to you and that you like my ass. I think you smell good and are sexy, too! I like having a day with you! Let’s do try to keep focusing on the good things about each other – you do a better job of that than I do – I need constant reminders and I’m working on that.