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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?

20101212_200110_LactobacillusAcidophilus

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

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This is a new subject for me to discuss.  Dating.  Dating with a chronic illness, actually.  And it is a really touchy subject.  A subject for which I have no answers and am actually completely new to.  Therefore, I guess this is the start of a new journey that I can try my best to navigate somewhat publicly in the hopes that it might help shed some light on this topic and alleviate some of the loneliness and alienation I am currently feeling.

I have always been an outgoing person.  I have always been a girl who can get dates or who has boyfriends.  There has never been a shortage of romantic drama / comedy going on in my life.  Even though I was diagnosed with lupus when I was 25 it never really had a major impact on my life.  It was just sort of there and popped up from time to time and lasted a few days and then went away.  I took my medications (for the most part) and it was a part of my life that wasn’t scary and didn’t really cross my mind.

Until 2010 when I started to lose my hair.  All my lovely hair fell out and I knew something was wrong, but I kept going to the doctors and everyone kept telling me that I was having a little flare and it wasn’t a big deal.  I met my ex-boyfriend around the time my hair had fallen out and even told him about the lupus on our first meeting.  But it wasn’t a big deal – to him or to myself.  My decline continued over the course of our relationship and the next few years until I hit rock bottom with the transverse myelitis and the brain seizures.  And our relationship ended (amicably) during that time as well.

I’ve spent the last 2 years in recovery mode.  Learning to walk, learning to live with the new boundaries that this disease and all the residuals have placed on my life.  It has been a difficult road.  And lonely at times despite having the most wonderful group of friends and family constantly there for me.  But I also was not in a place where I felt like a romantic relationship was a priority.  It doesn’t help that I feel completely unsexy and ashamed of my lack of physical abilities.

Recently I thought it might be a good idea to try to date again.

As it turns out.  Maybe I wasn’t ready.

In fact, it turned out to be a complete nightmare for me (and probably for the other person as well).

I wanted to go out there and be myself.  Or probably more my old self rather than this new me.  But I also wanted to be completely honest about the physical state that I am in.  This turned out to be much more difficult than I had originally expected.

The being honest part turned into a giant mirror where I had to say out loud all of the things that were wrong with me.  And when I lumped that all into a package it was devastating to hear.  I think it was more devastating for me to hear because I haven’t ever said it all out loud like that.  I can’t even imagine being on the receiving end of that speech.  Plus I didn’t even get to get through the laundry list of “I can’ts” because some of them are so embarrassing that it would take seeing someone a while to have that conversation.

The list of facts or I can’ts went something like this:

  • I can’t walk long distances. Most of the time it is difficult to even walk short distances because I am in constant pain in my spine and legs.
  • When I do walk my legs feel like I have 50lb weights strapped to them because of severe nerve damage from the waist down.  This adds to the pain and the fatigue that I suffer.
  • I am perpetually tired.  I may want to be fun and be the life of the party, but I probably need to be in bed by 10pm otherwise my next day will be ruined.  I am so chronically fatigued that I can barely stay awake most of the time and it feels like I am living with my head in a cloud.  I forget things, I become irritable, I can’t pay attention for very long.
  • I can’t stand for long periods of time.  If we go somewhere I need a place to be able to sit down.
  • I can’t go out in the sun.  My lupus starts to flare when I am exposed to the sun.
  • I can’t go in the cold because I have Raynaud’s and my fingers and toes will turn blue and go numb.
  • I can’t pee normally.  I have to use catheters so if you see weird straws in my bathroom that is what they are.
  • I can’t poop normally.  The nerves in my bowels and my bladder have been permanently damaged by the inflammation of my spinal cord.  This means that I have to take medications and deal with a ‘bowel management program’ that is neither sexy nor fun.  This means that I have constant anxiety about going to the toilet because accidents can and have happened.  This also takes a few hours of my evenings so staying over is probably not an option unless you want to watch me run to the bathroom 15 times in a row.  If I don’t take care of this I spend the next day in constant anxiety and pain on my spine.
  • I am on a lot of medications.  These cause me to have gastro issues or weight gain or moodiness.
  • I sometimes walk with a cane.  But you do get free handicapped parking when you are with me.
  • My lupus will never go away.  It it under control and it fluctuates.  This causes me to have pretty severe anxiety along with all the other things that are wrong.

Yeah.  That list is pretty much a bummer.  When I said (most) of it out loud to someone it basically caused me to regress and feel totally worthless and incapable of continuing the conversation.  Who would want to date someone that has that many issues?!?  I ended up feeling like a giant, sad loser.

I never wanted to be defined by this disease or by the limitations that it has placed on me, but recently it seems to be enveloping me to the point that all I see are these things because every day is a constant struggle to keep afloat.  Adding the additional burden of dating on top of that was challenging because it drew attention to all the things that I don’t have to talk about all the time with my friends because they know all of it and accept it.

I ended up telling most of this to a person that I was seeing.  And he took it all in stride which was encouraging and also terribly kind of him, but at the end of the day, I was still a wreck all of the time.  Trying to find time for date nights when I am chronically fatigued, being “on” and in a great mood, worrying about someone else’s feeling, feeling guilty for always being tired and everything else that goes along with dating left me filled with constant anxiety and stress.  And seeing myself through someone else’s eyes as this sad and incapable person who was filled with excuses and limitations really traumatized me. I don’t want to be that person.  I am not that person.  But that was who I felt like I was becoming and I don’t want to be pitied.  I couldn’t continue seeing him because I was paralyzed with self-doubt and fear.

So, long story short, I’ve decided to shelve the idea of dating for a little while longer while I try to work through some of these issues.  It is sad that something that should have been enjoyable turned out to be so difficult, but I’m glad I made the attempt even if I failed at it so miserably.

I think my next post will be brainstorming ‘things that I can do when dating with chronic health issues’.  I might not be ready now to jump back in, but perhaps working on psyching myself up will help me get in a better mental state for that eventuality.

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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