No RSVPs by Thursday and I have other commitments this weekend. SO this Sundays meeting is cancelled.
Go if you like, and if I hear from more than one of you planning to attend, I will let the others know they will not be alone. Otherwise, see you in June!
The meeting today is pretty much a bust. Meaghan and I enjoyed a nice dinner of some pretty good pizza they make on the premises. Tip: Try artichoke and olives!
We sold one Vasculitis Awareness T-Shirt, to Meaghan.
Now, lest you think the month was a waste, we have news.
At the UNM Outpatient Treatment Center (OTC) where they do the chemotherapy infusions, I made an official agreement to supply their patient education center with VF brochures. I left them a stack of 20 to start that I had with me, and I will deliver more in about ten days when we go there again. Let's see how many they go through in that time. I always include a sticker on the back with my local contact information in addition to the national information already printed on the brochures. Let's see if that gets any new people to the meetings.
Now I need to do the same over at Presbyterian. One of the Rheumatology Fellows here is graduating from his fellowship at UNM and may land at Presbyterian, so I will have a built-in connection there.
In other news, almost everything I have heard about Lovelace Rheumatology is bad. Not sure how to proceed, but I am not going to promote them. If any of you have information one way or the other, I welcome your feedback about your doctor.
I welcome your feedback about your doctor regardless. Would you recommend your doctor? Why? Why not? Come on, do tell!
On the other hand, patient anecdotal comments lead me to believe that Albuquerque Rheumatology has at least two excellent doctors. Based on the comments, Dr. Jacqueline Kim Dean and Dr. Leroy Arnold Pacheco. Their patients certainly like them.
The UNM doctors, Dr. Bankhurst, Dr. Sibbitt, and Dr. Johnson are all well respected and even liked. Meaghan certain likes Dr. Sibbitt who has been very responsive to her needs. We are not always happy with the red tape at this university hospital, but we are learning how to navigate the pitfalls. The doctors are great, it is billing and other that cause certain issues.
Next, we met two patients this month at UNM OTC who speak Spanish and one of them speaks no English at all. I was able to pidgin together a reasonable facimile of a conversation, but I do not have the medical terminology in Spanish, so in addition to my picking up a book on Spanish medical jargon, we also need brochures in Spanish language. I will ask VF if such are available, or I will arrange to get what I have translated here. Here in the land of sunshine and enchiladas we have plenty of resources for translation. I already know a professional translator who may be willing to donate his time for this. I will ask. I may also see about getting the best parts of the CNMVF website translated to include Spanish language versions. Anyone out there want to help with this??
In other news, Meaghan is now taking Rituximab. Wish her well and lets hope this lets her get the other meds down. She popped back up to Prenisone 60mg after flaring through March and April. Now deaing with renewed puffyness, and wishing for time to fly a little faster on that score. Tapers are slow...
Karla is busy with the symphony, and I have not heard from her in quite a while, but from her Facebook updates, it seems she is feeling okay lately.
I met a new patient last month, Luanne, who is housebound. I plan to call her in the next couple of days. Along with a couple of other housebound patients who cannot attend meetings. This may lead to some kind of quasi-teleconference meeting... At least that is the idea if I can figure out how to work it.
I also read in the latest monthly VF newsletter, that the VF Information packets are available now. Once I get a look at them, I will start planning to deliver them to local specialty clinics.
In addition to hopefully being a sorely needed source of good information, they are also a great way to introduce myself to the clinic administrators, and managing physicians in order to establish more and better connections to more patients.
Okay, pay attention. There is NO meeting this coming Sunday.
I think for my own peace of mind, I am going to make it a requirement to RSVP by Thursday night for Sunday meetings. I can always meet any individual you is interested in a one on one breakfast or lunch meeting.
Keep that in mind. If you cannot make a monthly meeting but know you will be in town for another reason, please call me up and we can get together for a drink or dessert to catch up.
One day at a time, let's put one foot in front of the other, and the next thing you know, we'll be walking out the door!
: Joseph Carpenter
Email | (505) 255-1366
PO Box 30888, Albuquerque, NM 87190-0888
CSS Parent, Daughter DX March '08
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
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