Leigh's Medical Mystery Fund
Donation protected
The point: I am raising funds so that I can see the specialists at the Infectious Disease department at Stanford who specialize in SEID [Systemic Exertion Intolerance Disease (aka Chronic Fatigue Syndrome)] and to see a specialist to help treat an old injury that is causing debilitating pain (see near the end of The Backstory).
I can receive donations directly as well (they will be manually added to the donation total). Message me for details.
Other ways you can help: http://bit.ly/HelpingThings
The backstory: In 2013 I got sick. For about a year I was really, really sick. I dropped 60lbs, suffered from malnutrition and a wide variety of mostly neurological symptoms.
I have seen several specialists. I've been diagnosed with a few things but nothing that explains my overall condition. My doctors have all reached the "there's nothing else we can do" point.
Two of the specialists, both of whom went above and beyond their specialty to try and help me figure out what the heck is going on, recommended I go to Stanford.
I was on the wait list for just about a year year. In that year I've gone from having insurance that would cover my visit to having insurance that doesn't cover any of my doctors. I haven't had income in over six months and I'm on food stamps.
My initial appointment was at the end of July. I am on a discount program so instead of paying $650 each visit, I am paying closer to $400.
My initial visit was very promising and I was sent away with 20 pages of lab work to be done. Thankfully I was able to use an outside lab that my insurance takes as Stanford said the blood work would be about $3500. I do not know what the final cost for those tests will be but it should be less. I go back for my follow up mid-September.
It is my intent to post estimates, invoices, etc, here for total transparency. I will update the fundraising goal once I have more information.
Between the cost of using the insurance I used to have and actually paying for it (COBRA and then Covered CA), I've accrued over $20,000 in medical debt in the past two years. Seriously.
I am only asking for help to pay for treatment, not to pay for that debt.
Regarding the pain, I have torn ligaments in my lower back. As a result my hips do not stay in alignment very well which causes severe pain in my hips, legs and lower back. This means that sitting, standing and laying are all painful for me (in different ways).
I saw a back specialist and a hip specialist and neither acted on the diagnosis that I was given in my early 20's. The doctor who diagnosed me successfully treated the issue using prolotherapy (rare in the US) so that my pain was minimal over the period of 8 years.
I am working with a new doctor who, like that doctor from my 20's, is also a D.O.. He is working on getting my pain under control and agreed to help advocate with my other doctors.
For pain management, I get massages which helps some and I stretch and do core work. I take muscle relaxants when the pain is impacting my sleep. I've tried PT which made everything flare uncontrollably, acupuncture which didn't help, steroid shots which helped for about 2 weeks. I can't take anti-inflammatories because of my GI issues and do not want to take narcotics.
I don't know about anyone else but being scared to sit in a car because of how much it hurts is kind of a bummer. I know that finding a way to stabilize my hips will make a big difference.
Back to the fatigue -
There are two components to going to Stanford:
1) The optimistic aspect - they might find what's wrong and help make me better, if not 100%, at least better than I am now.
2) The functional aspect - Social Security denied my claim but my case person and the psychologist they sent me to (who recommended me for benefits) said that Social Security takes input from Stanford seriously so it would help my appeal greatly.
I want to get better. It is my goal to get better. I do not want to be on Social Security but I applied for it because right now I need it. I need one or the other and, right now, it feels like working with doctors at Stanford is the only way to move to the next phase.
The life/health details: My symptoms vary depending on how flared I am... but my "new normal" falls solidly on 30 on the CFS scale. Good days are more like a 40 but they rarely happen more than 2 or 3 days in a row and are the minority.
Along with fatigue, I have chronic nausea that gets worse at night. The nausea is due to gastroparesis which living with is far worse than the NIH/Mayo articles suggest it is. I generally refer to the gastroparesis (GP) as a motility issue since I also have issues with food moving down my esophagus.
On my good days, I have to be careful what I eat but I can get most of my calories from solid foods. I can not eat vegetables or fruits generally speaking except in small quantities and very, very overcooked (ew). I need to avoid fiberous and/or fatty meats as well as a variety of ingredients. When I begin to flare I switch back to a mostly liquid diet and rely on Soylent for my nutrients.
Not paying attention to my dietary restrictions results in far less pleasant symptoms.
I have joint pain in my knees and elbows. My ulnar nerve has joined in the fun so my hand goes numb and I have nerve pain if I use a computer/touch screen, drive a car, wash my hair, pet the cats... you get the idea. I don't know if this is related but it started after I got sick. I do not have a history of issues with my knees or elbows.
I can't work even part time. My life is basically a series of small/short tasks mixed with longer periods of rest. That's ignoring the neurologic/pain issues I have from using certain parts of my body, which may or may not be related to whatever is causing the fatigue.
I do as much as I can because I hate sitting still but often it means I trigger a flare. I have to juggle things that most people take for granted. For example, if I need to wash dishes or do laundry or vacuum, I will plan to do that on a day when I am not taking a shower. I piecemeal out tasks. Many things simply go undone for long periods of time.
I am not sitting around reading or playing video games. Those things fatigue me. Seriously. Doing stuff I enjoy is just as tiring as doing boring stuff. Since I have chronic pain issues that get worse when I don't move around or sit too much I generally do not let myself sit and watch TV until after 6pm unless my fatigue is so bad that I can't do anything else.
When I have "extra" energy I have projects to work on that make me feel useful such as doing bookkeeping for clients or fixing stuff in my house. Those days don't happen as frequently as I'd like though.
Before this started I worked long days, walked 3-5 miles a day, went hiking often two or more times a week, I read 30+ books a year, played video games, and rode my motorcycle (which I've since sold).
I turn 40 this year. My plan for my 40th birthday before this had started was to ride my motorcycle to Alaska and then down to Baja. It would have been a month long trip at about 300 miles a day. Now I’m hoping that I'll have the energy to have friends over and that I am well enough to be able to eat whatever they’re eating.
It’s been a big adjustment to accept these limitations but I'm thinking maybe, if things go well at Stanford, I can put that trip back on the books for a later birthday, like say, 45. :)
I can receive donations directly as well (they will be manually added to the donation total). Message me for details.
Other ways you can help: http://bit.ly/HelpingThings
The backstory: In 2013 I got sick. For about a year I was really, really sick. I dropped 60lbs, suffered from malnutrition and a wide variety of mostly neurological symptoms.
I have seen several specialists. I've been diagnosed with a few things but nothing that explains my overall condition. My doctors have all reached the "there's nothing else we can do" point.
Two of the specialists, both of whom went above and beyond their specialty to try and help me figure out what the heck is going on, recommended I go to Stanford.
I was on the wait list for just about a year year. In that year I've gone from having insurance that would cover my visit to having insurance that doesn't cover any of my doctors. I haven't had income in over six months and I'm on food stamps.
My initial appointment was at the end of July. I am on a discount program so instead of paying $650 each visit, I am paying closer to $400.
My initial visit was very promising and I was sent away with 20 pages of lab work to be done. Thankfully I was able to use an outside lab that my insurance takes as Stanford said the blood work would be about $3500. I do not know what the final cost for those tests will be but it should be less. I go back for my follow up mid-September.
It is my intent to post estimates, invoices, etc, here for total transparency. I will update the fundraising goal once I have more information.
Between the cost of using the insurance I used to have and actually paying for it (COBRA and then Covered CA), I've accrued over $20,000 in medical debt in the past two years. Seriously.
I am only asking for help to pay for treatment, not to pay for that debt.
Regarding the pain, I have torn ligaments in my lower back. As a result my hips do not stay in alignment very well which causes severe pain in my hips, legs and lower back. This means that sitting, standing and laying are all painful for me (in different ways).
I saw a back specialist and a hip specialist and neither acted on the diagnosis that I was given in my early 20's. The doctor who diagnosed me successfully treated the issue using prolotherapy (rare in the US) so that my pain was minimal over the period of 8 years.
I am working with a new doctor who, like that doctor from my 20's, is also a D.O.. He is working on getting my pain under control and agreed to help advocate with my other doctors.
For pain management, I get massages which helps some and I stretch and do core work. I take muscle relaxants when the pain is impacting my sleep. I've tried PT which made everything flare uncontrollably, acupuncture which didn't help, steroid shots which helped for about 2 weeks. I can't take anti-inflammatories because of my GI issues and do not want to take narcotics.
I don't know about anyone else but being scared to sit in a car because of how much it hurts is kind of a bummer. I know that finding a way to stabilize my hips will make a big difference.
Back to the fatigue -
There are two components to going to Stanford:
1) The optimistic aspect - they might find what's wrong and help make me better, if not 100%, at least better than I am now.
2) The functional aspect - Social Security denied my claim but my case person and the psychologist they sent me to (who recommended me for benefits) said that Social Security takes input from Stanford seriously so it would help my appeal greatly.
I want to get better. It is my goal to get better. I do not want to be on Social Security but I applied for it because right now I need it. I need one or the other and, right now, it feels like working with doctors at Stanford is the only way to move to the next phase.
The life/health details: My symptoms vary depending on how flared I am... but my "new normal" falls solidly on 30 on the CFS scale. Good days are more like a 40 but they rarely happen more than 2 or 3 days in a row and are the minority.
Along with fatigue, I have chronic nausea that gets worse at night. The nausea is due to gastroparesis which living with is far worse than the NIH/Mayo articles suggest it is. I generally refer to the gastroparesis (GP) as a motility issue since I also have issues with food moving down my esophagus.
On my good days, I have to be careful what I eat but I can get most of my calories from solid foods. I can not eat vegetables or fruits generally speaking except in small quantities and very, very overcooked (ew). I need to avoid fiberous and/or fatty meats as well as a variety of ingredients. When I begin to flare I switch back to a mostly liquid diet and rely on Soylent for my nutrients.
Not paying attention to my dietary restrictions results in far less pleasant symptoms.
I have joint pain in my knees and elbows. My ulnar nerve has joined in the fun so my hand goes numb and I have nerve pain if I use a computer/touch screen, drive a car, wash my hair, pet the cats... you get the idea. I don't know if this is related but it started after I got sick. I do not have a history of issues with my knees or elbows.
I can't work even part time. My life is basically a series of small/short tasks mixed with longer periods of rest. That's ignoring the neurologic/pain issues I have from using certain parts of my body, which may or may not be related to whatever is causing the fatigue.
I do as much as I can because I hate sitting still but often it means I trigger a flare. I have to juggle things that most people take for granted. For example, if I need to wash dishes or do laundry or vacuum, I will plan to do that on a day when I am not taking a shower. I piecemeal out tasks. Many things simply go undone for long periods of time.
I am not sitting around reading or playing video games. Those things fatigue me. Seriously. Doing stuff I enjoy is just as tiring as doing boring stuff. Since I have chronic pain issues that get worse when I don't move around or sit too much I generally do not let myself sit and watch TV until after 6pm unless my fatigue is so bad that I can't do anything else.
When I have "extra" energy I have projects to work on that make me feel useful such as doing bookkeeping for clients or fixing stuff in my house. Those days don't happen as frequently as I'd like though.
Before this started I worked long days, walked 3-5 miles a day, went hiking often two or more times a week, I read 30+ books a year, played video games, and rode my motorcycle (which I've since sold).
I turn 40 this year. My plan for my 40th birthday before this had started was to ride my motorcycle to Alaska and then down to Baja. It would have been a month long trip at about 300 miles a day. Now I’m hoping that I'll have the energy to have friends over and that I am well enough to be able to eat whatever they’re eating.
It’s been a big adjustment to accept these limitations but I'm thinking maybe, if things go well at Stanford, I can put that trip back on the books for a later birthday, like say, 45. :)
Organizer
Leigh Erskine
Organizer
Richmond, CA
