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One thing about having a chronic condition is you get used to going to the doctor all the time.  I have an entire team of doctors dedicated to all my issues.  When I sat down to think about it I came up with a whole lot of them.

The problem with having this many specialists ends up being coordinating the care between them.  Even if you have them “in network” and there is a shared database of your medical records there still ends up being a lot that is probably overlooked.  It is really a flaw in the system especially if you are sick and trying to keep track of stuff is already complicated in your overworked, overtired brain.  There really needs to be a position of patient advocate that can tie all of these people together.  The other issue seems to be when you have so many people tending to your care it makes it really easy for them to pass the buck onto the other specialist and things fall through the cracks.

Here are a list of my team members:

  • Primary Care Physician – This one is probably the one that I see the least.  She deals with physicals and random other issues that pop up.
  • Rheumatologist – This is the doctor that I deal most of the time.  He is the main gatekeeper of all the lupus stuff.  The role of the rheumatologist is to diagnose (detect), treat and medically manage patients with arthritis and other rheumatic diseases. These health problems affect the joints, muscles, bones and sometimes other internal organs (e.g., kidneys, lungs, blood vessels, brain).
  • Neurologist – I deal with this one for all of the transverse myelitis issues and also the brain seizures, etc…  He likes to make me do spinal taps and MRIs.  The neurologist treats disorders that affect the brain, spinal cord, and nerves.
  • Urologist – I see her on a semi-regular basis to deal with my neurogenic bladder.  We talk about catheters and she does my bladder botox injections.
  • Gastroenterologist – I get to see him on a monthly basis to deal with my neurogenic bowel issues.  He sticks his finger up my butt and medicates me.  Yay!
  • Psychiatrist – I see her on a weekly basis and cry which is extremely helpful.  The plus over a psychologist is that she can also prescribe meds for depression / anxiety / etc.
  • Physical therapist / personal trainer – I get to see him to try to make my legs move.
  • Opthamologist – This one I don’t have to see very often, but I do have to have special tests to make sure that the lupus medications aren’t damaging my eyes and to monitor changes in my vision that may or may not be caused by brain inflammation.

On top of seeing all of these doctors in what seems like a near continuous cycle for check-ins and medication adjustments, I also have to do regular bloodwork, urinalysis, MRIs and (previously mentioned) botox injections.  Sometimes it seems like a fulltime job to keep up on keeping up.

What about y’all?  How many specialists do you have?  Am I missing something?

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Here is an interesting article.  Once again discussing the microbiota and lupus.  I take probiotics when I remember, but this article is going to prompt me to take them every day.  I use Bio-Kult probiotics which are pretty expensive, but have come highly recommended by a nutritionist.

From the article:

Lactobacillus species, commonly seen in yogurt cultures, correlate, in the guts of mouse models, with mitigation of lupus symptoms, while Lachnospiraceae, a type of Clostridia, correlate with worsening, according to research published ahead of print in Applied and Environmental Microbiology.

Nonetheless, Luo suggests that people with lupus should eat Lactobacillus-containing probiotics, such as live culture yogurts, to reduce lupus flares. More generally, “The use of probiotics, prebiotics, and antibiotics has the potential to alter microbiota dysbiosis, which in turn could improve lupus symptoms,” says co-principal investigator Husen Zhang. Ultimately, says Luo, fecal transplant might prove valuable as a treatment for lupus.

Related articles

flushot

Oh hai.  It is flu season again.  Which also means that I will spend a season being mildly annoyed with the world.  In particular, I will focus my annoyance on people who don’t get the flu shot.   You might wonder why I even give a crap is anyone else gets the flu.  Well, I wish it were that simple.  But it isn’t.

There are a few things that happen during flu season:

1) People get sick.

2)  People get sick and then they go out in public.  They go to work so they can prove just how tough they are or so they can save those sick days for fun days!  Wee!  Why waste a sick day being sick when you can spread your germs to everyone in the office?!?  Sharing is caring, obviously.

Behavior #2 is simply selfish.  It is particularly selfish to those people around you that have weakened immune systems.  Like myself.  Or like your grandmother.  Or your best friends 3 month old.

It is also selfish to not get a flu shot.

I am shocked at how many sane, intelligent people that I know that never get a flu shot because of really asinine reasoning, such as:

  • “I never get sick.”
  • “It made me feel really ill last time I did it.”
  • “I hate needles.”
  • “It doesn’t do anything.”
  • Some other bullshit conspiracy, Jenny McCarthy-type shit…

The fact of the matter is that influenza is a real thing that can really kill you.  Yes, even you, healthy young person.  But it can also kill me…way more easily than it will take you out.

Here are a few flu facts for you:

  • “Flu season” in the United States can begin as early as October and last as late as May.
  • During a regular flu season, about 90 percent of deaths occur in people 65 years and older.
  • On average, about 6,000 people die from the flu every year in the United States (http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5933a1.htm).  Some years it is much higher and if you look at the charts it seems that it has been rising over the last decade.

So a few things about the flu shot.  Your insurance covers it (if you are insured) and you can usually walk into a Walgreens or your health clinic to get it done.  People with weakened immune systems should ask their doctor if it is OK to get the shot.  I have been told specifically not to get the nasal vaccination and to get the “dead” vaccination (in the form of a shot).  This is fine because I haven’t even seen anyone offering the nasal “live” spray anywhere.  It barely hurts apart from maybe a tiny bit of bruising.

Go forth and get vaccinated.  If not for yourself then for others around you!  Please!

walktoendlupus

It is that time of year when I start to raise money for the San Francisco Lupus Walk.  This year my goal is to raise $7,500.

As many of you know, I have been battling lupus for the last 14 years of my life.

When I was first diagnosed things were pretty much fine apart from the occasional aches and pains. But a few years ago things took a turn for the worse and I nearly died. During that time I suffered from a bout of transverse myelitis that affected my spinal cord causing permanent nerve damage to my lower half. I also spent a good amount of time in the hospital with severe brain seizures. All of this ended with me having chemotherapy to get the disease under control. Since then I have been fighting on a daily basis to recover from all of the damage that has happened to my body.

Every single day I am reminded of how much lupus affects my life – from extreme fatigue, difficulty remembering things, being in chronic pain or taking enough medications to kill a small elephant. Lupus is something I have to live with because there is no cure. And that sucks.

I really hope that you’ll consider donating any amount to help find a cure for this awful disease. It is oftentimes overlooked for other causes with more prestige, but it is no less important or devastating for those of us who are suffering a life sentence with it.

I am blessed to have had the support of my amazing friends and family who make me smile on the worst days and keep me going. Thank you so much for being here for me. I love you all!

Donate Now

Update as of October 17th:  We are #1 so far.  Keep up the great work, Team Lupies and all of you who donated to the cause.

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lupus empire state building

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If you are looking at the Empire State Building this evening (Wednesday, October 8th) and notice that it is glowing purple then you can think about moi…

This evening the Lupus Foundation of America Global Ambassador Julian Lennon will “flip the switch” and light the world-famous Empire State Building tower purple to call for increased awareness and investment in lupus research.

Lupus Foundation of America – Support Lupus Research.