Lupus Never Looked So Good

1. The illness I live with is: Lupus (SLE), Rheumatoid Arthritis, Raynaud’s Phenomenon, Post-Traumatic Stress Disorder (PTSD)

2. I was diagnosed with it in the year: Lupus, RA, RP: 2002-2003; PTSD: 2008

3. But I had symptoms since: Med: 2001, Psych: 2007

4. The biggest adjustment I’ve had to make is: Caring about what I eat or do.  I’m still not very good at it, being that not long ago I went on a 8 hour hike with bad shoes and no water.  I paid for it, dearly.

5. Most people assume: Well, honestly, I don’t think anyone assumes anything is wrong with me.  But I am very upfront about my illnesses especially in an environment where they are going to affect me (i.e. hiking up a mountain).

6. The hardest part about mornings are: The sober hangover.  When I ate well and drank plenty of water the day before, but for some reason I wake up feeling like I drank a bottle of tequila to my face.  

7. My favorite medical TV show is: I don’t like medical dramas.  I think they are completely tacky, and so unbelievably inaccurate that they are infuriating.  And most of them portray nurses and doctors in a way that is exactly the opposite of true (especially in hospital settings).  It’s too frustrating for me to watch and enjoy.  However, scrubs was pretty brilliant.  But that wasn’t a medical “drama”.

8. A gadget I couldn’t live without is: my phone, probably.  

9. The hardest part about nights are: It depends.  I get RLS many nights and that sucks, but really nights are typically my best time of day.  I look forward to laying down.

10. Each day I take __ pills & vitamins. (No comments, please) I currently take 7 pills each day (well, technically one of them is a powder)

11. Regarding alternative treatments I:  have been almost entirely holistically treated since my diagnosis, and I have been healthier than most of the people I have met with the same or similar diagnoses who are treated primarily with chemical medicine (steroid, radiation).  My thoughts on this, to specify, are that in many cases mainstream medicine is the best resort, BUT in a case like mine, where the drugs typically prescribed have *more negative side effects than they have benefits*, natural medicine is the way to go.  (Disclaimer:  I am NOT including “Homeopathic Medicine” in my blanket term of Holistic medicine.  ”Homeopathic Medicine” ought to be illegal, and is in no way shape or form “medicinal”.  

12. If I had to choose between an invisible illness or visible I would choose: Well it depends on which illness I’m switching out with.  Am I switching my Lupus/RA with something that just barely alters my appearance but has far less symtpoms?  Fuck yeah!  But am I switching it out for crippling crooked bones or something?  No, of course not.  Honestly, I like having an invisible illness (which appears to be the unpopular opinion).  I like that people don’t look at me and assume I can’t do something.  If I choose to disclose that information, I will!

13. Regarding working and career: I go back and forth with this.  I want to have a career as a social worker specializing in developmental disabilities, but I also want to have a more “domestic” career.  Perhaps I will figure out a way to combine the two.  

14. People would be surprised to know: That I would trade in to make my Lupus way way worse if I could make my anxiety issues disappear forever.  That shit is WAY worse imho to deal with.

15. The hardest thing to accept about my new reality has been: Honestly it was way harder when I was in high school, and I had to change my diet around completely.  But that was when my health was at it’s worst, for being sick for a year or so before getting diagnosed.  Since getting diagnosed, I have gotten more and more situated into my groove with things.

16. Something I never thought I could do with my illness that I did was: Help others!  Spread awareness, and give advice!  

17. The commercials about my illness: You know, the only Lupus ads I ever see are billboards that say shit like “tired sometimes?  are you a black person?  You probably have Lupus!”  Which is just a fear-mongering ad that does nothing.  And all the RA ads I see are about old people who wish they could play tennis again.  I don’t relate at all to those campaigns.

18. Something I really miss doing since I was diagnosed is: Honestly, I was like…13 before I got sick.  I wasn’t even a real person back then.  As far as I’m concerned, I’ve been sick since I mattered.

19. It was really hard to have to give up: I had to give up eating all wheat products for a few years.  That sucked a lot.

20. A new hobby I have taken up since my diagnosis is: blogging

21. If I could have one day of feeling normal again I would: go on another hike in shitty shoes.

22. My illness has taught me: That I’m pretty tough.  (When I want to be)

23. Want to know a secret? One thing people say that gets under my skin is: When people who are sick have claim to this elitist throne that gives them license to whine constantly and put “healthy” people down just for “not understanding their pain enough.”

24. But I love it when people: ask questions!!  I love getting asked real questions about chronic illness.

25. My favorite motto, scripture, quote that gets me through tough times is: ”I’m always ok, even when I’m not.”

26. When someone is diagnosed I’d like to tell them: TO NOT TAKE EVERYTHING YOUR DOCTOR SAYS AS COMPLETE FACT.  Do your own research, ask questions, get second, third opinions.  Be smart. 

27. Something that has surprised me about living with an illness is: When people ask “How are you?” They really don’t want to know. (seconded)

28. The nicest thing someone did for me when I wasn’t feeling well was: Scratch my back when my day was shitty.  It erases all my problems.

29. I’m involved with Invisible Illness Week because: Well technically I missed it.  Whoops!

30. The fact that you read this list makes me feel: Super happy and grateful!  Thanks!

I would have never expected this to be a problem, but apparently it is.  Recently, I was at work at a local college and a young lady next to me coughed up blood, turned extremely pale and then passed out into my lap.  I, as a reflex, picked up my phone and dialed 911.  As I was explaining the situation to dispatch, a superior came up to me and started to scream and holler at me, explaining that I should not have called 911, because we do not know if the young lady in question has health insurance or not.  She explained (as I tried to ignore her and continue my conversation with dispatch) that we should call Campus Security first, to evaluate if the problem is extreme enough to warrant an ambulance. 

No.  No.  The girl had passed out.  She could not vouch for herself and a decision had to be made.  While I was being argued with, dispatch was taking longer to send help.  This is not acceptable.  This is a symptom of our messed up health care situation in America.  Right now, people are so paranoid about whether or not someone else (especially younger people) has health insurance that they are putting lives at stake by not calling for help immediately. 

Some of my non-US readers might have no Gorram clue what this means.  And for that I am envious of you. 

So here’s the thing.  In the US, currently, if someone is brought to the ER, they will get the care they need to make sure that an emergency is not occurring (or take steps to correct one if it is).  This is the MOST IMPORTANT THING if you think someone is having an emergency.  Call 911.  If later on, after they are stable, it turns out that they have no (or poor quality) health insurance, the financial aide department at the hospital will help them take care of it.  In many cases, it will be cheaper for a person with no insurance to get emergency care than it would be for them to get preventative care (while costing the state much, MUCH more…but that’s another story). 

The point?  If you see someone suffering and you feel they might need emergency care, don’t you dare hesitate or try to rationalize waiting and seeing what happens. 

Magnesium is the fourth most abundant mineral in our bodies and is incredibly essential to our health.  Not many people get the recommended daily value of magnesium, but at the same time it takes quite a lot before we start showing signs of deficiency.  And our bodies will work extra hard to keep the stuff on supply.  But for people with Lupus or other Chronic Illness, you may be more at risk. 

The health status of the digestive system and the kidneys significantly influence magnesium status.

People with Lupus, I’m lookin’ at you.  Like I’ve mentioned early, our kidneys have a high risk of malfunction and so many deficiencies are more likely.  Magnesium is one to look out for.  You are more at risk of a deficiency if you have been vomiting, dehydrated or on antibiotics for an extended period of time.  Also if you drink a lot of alcohol (which I hear is a common side effect of Lupus) you could increase your risk of deficiency. 

Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and weakness. As magnesium deficiency worsens, numbness, tingling, muscle contractions and cramps, seizures (sudden changes in behaviors caused by excessive electrical activity in the brain), personality changes, abnormal heart rhythms, and coronary spasms can occur [1,3-4]. Severe magnesium deficiency can result in low levels of calcium in the blood (hypocalcemia). Magnesium deficiency is also associated with low levels of potassium in the blood (hypokalemia) [1,19-20].

In addition, low magnesium is linked directly to high blood pressure, so if you are prone to that I would take extra care in your magnesium intake. 

So if you feel like you don’t get enough magnesium in your diet, what should you be eating??  Well, magnesium is found in a pretty random assortment of foods, some leafy greens, some fish, some nuts, some dairy…Here’s a lovely chart from the lovely people at the National Institute of Health.

If you’re having trouble still though, many health food stores and vitamin shops will carry a magnesium supplement.  I’d recommend one with calcium in it as well.  And for those of you with Chronic Anxiety issues, there is available a Magnesium supplement powder that you can make into the worlds most relaxing tea.  I kid you not. 

I never claimed to be a doctor.  I will never claim to be a doctor.  But I know doctors well.  I know the system well.  My mother is a very successful nurse, I’ve worked in hospitals, I’ve worked for Disabilities agencies, and I’ve been living with Chronic Illness for 10 years.  I’ve been around the block a few times when it comes to the health care universe.  Which is why this scenario that occurred yesterday bothers me.

One of my managers has recently been diagnosed with High Blood Pressure.  And I mean very recently.  He saw me take some Ibuprofen and commented about how I’m too young to be having joint pain!  (ok, so we’ll call this pet-peeve number one, but you can’t blame him.  The truth is, most people my age *shouldn’t* be having joint pain.  It’s not his fault for not assuming I have a Chronic Illness.)  I very simply explain that I have “a Chronic Illness” (I didn’t feel the need to be specific) and that standing in heels aggravates my knees.  “No big deal,” I say.  “Ibuprofen works wonders.”

He then goes on to talk about his recent diagnosis and how his doctor recommended this treatment plan to detox his system.  I say, “Detoxing is always good.  Be careful to research what you’re doing though.  But yeah, it’s a very good way to reset your body when it’s out of wack.”  Making it obvious that I know what Detoxing is, and that I’ve been through the process more than a few times.  I know what he’s getting at.  And I already hate it.

But he walks away, and I sigh with relief.  But no more than 15 minutes later, he comes back with a stack of paper work.  Of course, his detox program (which, naturally, is a very expensive all inclusive treatment plan that needs to be done in full.  No mix and match allowed) all printed out for me. He goes on and on about how this is the best stuff on earth.  How I’d be just fine if I would look into it. 

He’s my boss, so I take it and smile and say thank you.  But if he were anyone else in the world I would say this:  “You sir, have been ripped off.  What you hold in your hand is no better than a pamphlet to a faith-healing retreat or a get-rich-quick scheme.  Detoxing by definition is a good thing to do for anyone, not just those of us who are sick by definition.  But there is no one right way to do it.  And you don’t need to pour hundreds of dollars into some wealthy man’s pocket in order to do so.  More importantly, I know this because I’ve been living this way for 10 years.  I’ve trial’d and error’d more diet/health/wellness plans than you’ve ever heard of.  The first doctor you’ve seen in 10 years did not just happen to have the cure.”

In honor of this frustration, later tonight when I get home I’m going to post some more information on Detoxing, and how to do it without throwing money out your window or suffering.