I've just set up my first appointment with my new doctor in Denver. I'll be seeing her on December 1st which is good because today was a. really. bad. day.
Not just my regular spots, but two other areas are being extremely sensitive. Painfully sensitive. The weather has turned colder and drier and I know I need to use lotion more, but just the thought of putting on lotion right now is enough to bring me to tears. The sensitive areas are not red or noticeable in any way but they hurt really bad. My regular spots are darker than normal too.
I really hope I can get back into nbUVB treatments soon. I had forgotten exactly how bad my spots could be here in Colorado. When I lived here 12 years ago, that's when my spots were their absolute worst and pretty much stage 2 plaques. I also really hope that the increased issues with CTCL won't become the cost of being able to live in Colorado.
Friday, November 13, 2015
Sunday, November 1, 2015
Trying to set up an appointment at University of Colorado - Anschutz Cancer Center
I moved to Colorado this summer and things have been going well. A large amount of personal life stressors have meant the small spots on my lower back are getting noticeably worse. My wife saw them and got really upset that I hadn't already set up an appointment to be seen by the specialist here.
So I'm trying to get an appointment with UC - Anschutz Cancer Center and there are quite a few hoops to jump through. I am glad that there is an actual CTCL clinic there though; it even has a dedicated phone line, just for CTCL patients. I'll be seeing Dr. Pacheco and her nurse Ellen has been helpful in guiding me through all the hoops to jump through.
1. Insurance - This one makes sense. What doesn't make sense is that the first time I called, she said she couldn't set up an appointment without my insurance information. Ok, I called back when I had it, spoke to a different person who said that they couldn't take my insurance information unless I had an appointment set up first. I knew I had a lot more hoops to jump through before getting the appointment set up, so it made no sense to set up a fake appointment just so they could enter my insurance information. Finally she just took my info so hopefully it's in the system now.
2. Dermatologists information - I had my original biopsy done by the dermatologist I had gone to in order to get treatment for "eczema". The dermatologist did the biopsy, gave me the news of the diagnosis 2 weeks later, and I've not seen or talked to her since then. It seemed bizarre that they'd rather have the dermatologists info than my CTCL specialist's info.
3. Pathology Report - I suppose knowing my original diagnosis condition is helpful, but it seems to me it would be even more helpful just to check out where I am now.
4. Biopsy Slides - One company has my original biopsy slides, a different company has the pathology report made off those slides. New doctor wants both.
I get that they need to verify that I actually have CTCL and am not making it up, but I don't get why they want my reports that are 3 years old rather than my current info from my most current doctor.
I'm hopeful that they can get the reports this next week and set up an appointment fairly quickly. It would be nice to get treatment (hopefully nbUVB again) going as soon as possible. Thanksgiving break would be a convenient time to start treatment back up and get acclimated to the mild sunburning.
So I'm trying to get an appointment with UC - Anschutz Cancer Center and there are quite a few hoops to jump through. I am glad that there is an actual CTCL clinic there though; it even has a dedicated phone line, just for CTCL patients. I'll be seeing Dr. Pacheco and her nurse Ellen has been helpful in guiding me through all the hoops to jump through.
1. Insurance - This one makes sense. What doesn't make sense is that the first time I called, she said she couldn't set up an appointment without my insurance information. Ok, I called back when I had it, spoke to a different person who said that they couldn't take my insurance information unless I had an appointment set up first. I knew I had a lot more hoops to jump through before getting the appointment set up, so it made no sense to set up a fake appointment just so they could enter my insurance information. Finally she just took my info so hopefully it's in the system now.
2. Dermatologists information - I had my original biopsy done by the dermatologist I had gone to in order to get treatment for "eczema". The dermatologist did the biopsy, gave me the news of the diagnosis 2 weeks later, and I've not seen or talked to her since then. It seemed bizarre that they'd rather have the dermatologists info than my CTCL specialist's info.
3. Pathology Report - I suppose knowing my original diagnosis condition is helpful, but it seems to me it would be even more helpful just to check out where I am now.
4. Biopsy Slides - One company has my original biopsy slides, a different company has the pathology report made off those slides. New doctor wants both.
I get that they need to verify that I actually have CTCL and am not making it up, but I don't get why they want my reports that are 3 years old rather than my current info from my most current doctor.
I'm hopeful that they can get the reports this next week and set up an appointment fairly quickly. It would be nice to get treatment (hopefully nbUVB again) going as soon as possible. Thanksgiving break would be a convenient time to start treatment back up and get acclimated to the mild sunburning.
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