Lupus has no cure. Nor does fibromyalgia, or Multiple Chemical Sensitivity, or it seems any of the combo platter of autoimmune diseases I've collected. The standard treatment for all of them is to suppress the immune system, and treat the pain. This campaign’s specific Prime Mission: A round trip to LA so that I may seek care from my primary care physician, who manages my pain control.
Unfortunately I have not found a provider in Washington State willing to provide actual pain management for me. In speaking with my PCP in California in preparation for this campaign he noted that current policy is being written exclusively by professionals specializing in addiction, without accepting input from doctors who offer actual pain management to legitimate patients who do not abuse their medication. I have definitely seen evidence of this influence in my search for a local provider. He also acknowledged that the best that current medicine could offer is a degree of control of the magnitude of the pain, not the elimination of it. That's all I ask for and is how he has managed my case all these years. Under his care I am able to stay between a four and a six on the 0-10 pain scale, which is enough to allow me to function in most daily activities.
Fortunately this wonderful California doctor, who has been looking after me since 2004, continues to manage my pain and act as my PCP, but mostly remotely since we relocated to Tacoma in 2011. I have a Rheumatologist and Sleep Specialist here in the Seattle Tacoma area. They forward all test and study reports to him. We talk by text and phone regularly. So it is pretty much just informal tele-medicine. To avoid any issues, we have arranged to have at least one in person office visit a year. Due to current economic conditions. I have not been able to make this trip in the past couple of years. It is necessary for me to make that trip before we can continue this arrangement.
The budget for this trip is estimated at $5000 if I have to pay for all the needs. There could be some cost savings if any of my Southern California friends can offer to play host for the 10 days I am estimating for the trip. If any of my globetrotting friends have miles to spare, that could help with travel as well.
Here is the budget as it stands.
*Car Rental seems to be in the ballpark of $600+
*Air fare, SeaTac to Burbank +ground transportation $550ish
*Hotel (If no one has space available.Which would be preferable for social reasons)
approximately $1400 July 11 to July 21 looks like my probable itinerary. Which includes enough time for tests, results, and follow up.
*Food & incidentals $650
*Doctor fee's etc at least $300 + an unknown amount if any labs, studies, or scans get scheduled.
*$1500 an ballpark estimate on prescription co-pays. (Yep, the coverage is THAT bad)
This is the budget that covers this trip specifically. As a stretch goal, we have about $2500 in medical debts that we are currently paying on. So my real target is closer to $7500+. Any surplus, due to success of this campaign or due to some of the costs being made redundant by friends filling in some of the budgeted items, will be banked for future ongoing treatment of my many conditions.
No cure = Ongoing Costs
I am open to any questions, comments, or moral support people care to send.
I want to thank you all for your love and support over the years that I have been coping with these intractable, incurable diseases. I know several of you are personally familiar with my challenge having your own issues to tend to. Also thank you for just considering helping me pass this hurdle. If you prefer my Birthday is July 8th, so a contribution would make a fine birthday present.
Thank you for any help you can offer to avoid the consequences of not making this trip.
- Louis Tury
- Kellie Olivo
- Paul Hintz
- Brian Hohertz
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