sucky

Remember That One Time? When I Had Lupus?

Here’s the skinny – I have lupus. Here’s the story, and it goes a little something like this –

Lupus affects skin, joints, blood, and kidneys – for me specifically = pulmonary hypertension and pleurisy/chest pain 3 winters in a row in 2001-03 and now off and on, swollen lymph nodes, memory problems, confusion, headaches, high fevers, behavioral changes such as depression and bipolar, personality change and psychosis***, fatigue, painful joints, anemia, rash on forehead and beginning on cheeks, sun sensitivity, hair loss, abdominal pain, nausea, and vomiting, abnormal heart rhythms, blood in the urine and long-term elevated white-blood count since a child.

The Lupus begat

Fibromyalgia, a full party on its own including widespread musculoskeletal pain, more fatigue, sleep, memory and mood issues, more headaches and irritable bowel syndrome.

The Lupus also begat

PCOS -cysts in my ovaries causing pain, miscarriages, hormone disorders (more headaches, exhaustion again)

Hashimotos -hypo-thyroid, male-pattern baldness, weight gain, also exhaustion (I’M TIRED, OK?), more depression, mania, sensitivity to cold and heat, constipation, migraines, muscle weakness, cramps, memory loss.

And last but not least, The Lupus begat

Barely working liver and spleen, kidney issues, food sensitivities.

The DID is a separate issue, but by this time, your head is probably spinning and it might be hard to distinguish one thing from the other. Get out your punch card! You’ve all won a free hoagie!

And all because of a kitty that didn’t want to have a bath. Yes, my docs believe I have lupus because of an ornery, panicked kitty with bacteria on his claws that punctured me in the back and activated a lupus gene lying dormant inside me in 1997. And the leg bone’s connected to the brain bone. Who knew?

SO anyway, at this point I give you permission to use the phrase, in the most sarcastic voice possible, “Thanks A LOT, The LUPUS!”, every time something in your life goes wrong, because the kids and I are getting quite good at it. Example being, you all pile in the car to go out to dinner and someone forgets their wallet, well, Thanks a LOT, The Lupus! Or you knocked over your glass of milk. Or forgot someone’s birthday. Or stubbed your toe. Seriously. Try it. It’s good fun. The possibilities are endless.

Lupus is kind of scary. Here is a good website with lots of info. Lupus.org. I have Subacute Systemic Lupus, meaning it’s not full blown, if you can imagine. And actually, I can. It could be so much worse. Lupus in an auto-immune disease, so basically, your body eats itself up acting like your organs are foreign enemies that must be obliterated. Friendly fire, if you will.

In Acute Lupus, you’re losing parts or whole organs, taking steroids to slow the process and getting your affairs in order. You are your own worst enemy.

In Subacute, your body is just waiting for an excuse to be a real jerk, but it’s not quite there yet.

So, YAY for Subacute!

And here comes the boring part, mostly for my personal history record. I have a lot left to learn about lupus. I could be wrong about some stuff I think I know.

My plan of attack at the moment is building, not detoxing. My spleen and liver couldn’t handle it and my intestines aren’t working, so if I get more toxic, those toxins would just go round and round in my body killing me slowly with their song. I need to get stronger and help my immune system work if at all possible. I can’t stay in the sun very long. I can’t exercise vertically. So I have to get creative.

MY TEAM of docs and heathcare providers include

Rheumatologist
OBGYN
Homeopath
Acupuncturist
Yoga Instructor
Psychiatrist

My Rheumatologist and Homeopath have given me mostly the same diet suggestions, which follows closely to the Blood Type O diet found here. Heavy on the protein and dark green veggies, very, very low on the carbs and starches, light on the fruit and dairy. No sugar, caffeine.

What I currently take daily –

-Prescribed Meds
Synthroid 112 mcg/morning
Trazedone 100mg/night
Lamictal 100mg/night
Prilosec OTC 1/night
Acetaminophen as needed, up to 3000mg/day

Next week I will add-
Flexeril
Plaquenil
And one of these – Mobic, Naproxen, or Relafen.

-Current Supplements
The Blood Type Diet “O”, Live Cell
The Blood Type Diet “O”, Polyvite
Nordic Naturals, Balanced Omega Combination
Dr. Clark Store, Allied Amino Acids

Next week I will add-
PepZin GI
Digest Gold

Also next week I will have more tests with the OBGYN and get a sense of the damage done to my ovaries, kidneys etc. It’s the missing piece of knowledge. Once I have those results, I’ll pretty much know exactly where I am and how far I need to go to get stable.

***YES. THERE IS A LOT TO PROCESS HERE. I HAVEN’T EVEN BEGUN TO FIGURE OUT HOW I FEEL ABOUT THIS. That is why it’s down here at the bottom and not explored in this post.

Two Things

1. Quick interview with me re: United States of Tara season 3. They used a photo Tony took of me.

2. Quick recap of boring stuff for my personal records, GO. My health is poop. The maybe-you-have-fibromyalgia along with your other 10-gallon bucket of other diagnoses has turned out to be pretty much, yeah, you have that. I couldn’t open my jaw for about 5 days and it was really painful for about 2 weeks. My headaches are nuts. I feel my ovaries 24/7 with some hours making me want to poke my eyes out. I have pain all over no matter what position I’m in, which has been going on for years, but this flare up has been outstanding as far as high on the pain chart goes. I’m frustrated I can’t do all the things I’d like to do. I’m not as helpful with Gma as I want to be. And I have a healthy dose of shame and regret that my current condition is taking any of Joe’s concentration and energy away from Gma Jean. Bahblahblah. Notes to self = Approach as of April 1, 2011 – incorporate yoga, acupuncture and massage. Perhaps increase Lamictal and/or Trazedone or possibly add something else back in to the cocktail. Vicodin does pretty much nothing and acetaminophen works about as well with less risk. Heating pad is my constant companion. Let’s just keep moving forward because A, what other choice is there? and B, when you reach 77 different diagnoses, which surely I have at this point, they all kind of run together, the names become meaningless, you decide labels don’t matter, it’s all about how you feel and quality of life, and you qualify for a party, right? Since your frequent buyer punchcard is full?

Fraud

We’re cleaning up after dinner and I get a text from Sprint. The text says ‘Here is your new temporary password’ followed by a string of numbers. I shrug and show Joe. He logs in online using the temp password and creates a new real one. Our fear? That possibly someone is trying to hack our phone account. We’re both a little bit concerned because we just got a piece of odd mail from sprint the other week showing someone else’s name on our account.

This morning I get a second text from Sprint. This one says ‘Please use this validation number to complete your registration/add phone process.’ Now I’m really worried because it looks like someone is trying to add a new phone to our account.

I call Sprint and wait for literally over thirty minutes for a guy in the fraud department to answer the phone and say ‘Yello!’ which was kind of a shock since I’m used to them answering with their whole I’m so-and-so can I help you thing. I explain to him what has happened. He cuts me off to tell me that no, in fact those texts are from Sprint trying to get me to log in online and create a question and a password to cut down on fraud.

Why, Sprint? Why couldn’t you just let me know what you were doing? Why are you texting me with 140 characters that don’t explain the whole process and your intent and freak me out? How about a phone call? Using, oh I don’t know, a Sprint phone line?

Shoes

I seem to frequently wear the wrong shoes. I’ve done it time and time again. You’d think I’d learn, but out of the 40 pairs I own, and of the four I can find, only 2 are comfortable enough to wear for any length of time without blistering and one of those is a pair of tennis shoes. So, why do I keep grabbing the wrong pair? Why??

A few weekends ago I went down to San Diego to see friends. I hugged my hellos to Margot and she exclaimed on how cute my shoes were. The cuteness factor is in direct proportion to how much they will hurt later. I guess the only thing to figure out is how long you have before your toes are curling and bloody. Someone should come up with a formula. Anyway, we were walking into the closest furniture store and I had just got done telling Margot about how amazing it was that my shoes didn’t hurt at all and how wonderful it was to wear shoes that didn’t hurt my feet that were ALSO CUTE and she said something about how that was so nice because she had a very similar pair to the ones currently on my feet that she could only wear for an hour or so with limited actual walking before they hurt her very much, and then it happened. It was like someone turned the switch to PAIN and my feet started hurting. Besides embarrassing, because of my most recent platitudes, it was painful and required an extra trip to her house so I could swap the cute shoes for my flip flops.

And this is just one incident of many. Too many to tell. But I’ll tell you one more. Over the weekend I wore my flip flops for an extended amount of time while we walked all downtown Santa Barbara, all the while pinching my big toe and the one next to it in a very particular fashion to keep my shoe on my foot as we walked. I didn’t notice until we were about a half mile away from home how much my ankle hurt. I started paying attention, as I walked, to the particular pinching of the toes thing and how it was hurting my ankle but even as I concentrated, I couldn’t stop. I just forged on and kept walking and wincing. The next morning, my right ankle was swollen and had a lovely shade of blue going on the outer side.

All day Saturday I reaped the fruits of my labor and wore a pair of tennis shoes that look like this. Good thing I didn’t waste time and money on a pedicure that no one would see. I wore them to the beach. No sand between my toes except the sand that made it inside my shoe, inside my sock and exfoliated the tender skin in between my toes as I walked home.

I seriously only wear four pairs of shoes. My tennis shoes, one nice pair of black pumps for skirts, my well-worn flip flops and the cute shoes that hate me. I used to wear an awesome pair of green and black checked Vans but I stepped in gum and couldn’t get it off the side so I don’t wear them anymore. But I haven’t thrown them away, either, even though I know I won’t wear them. I haven’t even been able to find the huge box of shoes that my daughter packed for me when I moved. It’s somewhere in the garage hiding under other items I don’t use. An entire box, 4-feet high, full of shoes I’m not wearing. I don’t even miss them because if I did have them out and in my closet, I’d just do what I used to do – try them on, decide they are cute, walk around the room a few times looking for my wallet and my necklace and then take them off before I even go downstairs because they already hurt, replacing them with my flip flops or my tennis shoes.

Someday, when I finally find that box and give those shoes to Goodwill, I’m going to make a person with size 10 in women’s shoes very happy. But their toes will hurt and they will have blisters.

(As Far As I Know) Bloglines Sucks

Hello, you weary traveler. You’ll know I’m talking to you if you are one of the hundreds of people that get pinged each and every day with this old entry, this old entry or any number of other old entries. I’ve contacted Bloglines a few times and the very most cooperative they have been is to tell me it’s not their issue (when it VERY CLEARLY IS). The very least was the time they ignored me. Oh, and the other time they ignored me, too. Frustrated much?

Basically, I would suggest not using Bloglines anymore. People that read my feeds via other means, as far as I know, have not had any issues. But for the 159 Bloglines users that have contacted me, and the many others of you out there that just try to ignore it every day, let me just say – I’m sorry and I wish there was something I could do about it.