Going Holistic

Going holistic is much better than going ballistic, I suppose. I made the decision to wean off of autoimmune medications around Christmas, and I’m completely off of everything now.

I decided to go holistic for a number of reasons.

  1. I don’t like medicine. Never have. The only chemicals I want in my body are the ones I choose–namely semi-dry white wines and Old Number 7. I’ve also developed a fondness for rye whiskeys.
  2. I’m terrible remembering to take my medicine. Even when I set my alarm, it doesn’t seem to work like it should.
  3. The main medicine I take (hydroxycloriquine) can case blindness and other eye issues down the road. That’s a side effect I am not willing to risk.
  4. Diet and exercise have a huge impact on health. I’m willing to try adjustments to both.
  5. Massages are amazing, and I will be incorporating more of those into my healthcare routine. It’s great for releasing toxins, in particular…beneficial for pain management and costs less than a doctor’s visit. WIN-WIN! (Hoping it will be good for stress management, too!!!)
  6. Once we move to Central America, I don’t know how available nor how expensive the traditional medications might be.
  7. One of my biggest problems remains my eyes. The medications aren’t helping the dryness. I still can’t produce tears. I still don’t have a sense of smell. The drugs didn’t do me any favors where that is concerned. I’m upping my Omegas (including Omega 7) through supplements and diet. I have been CRAVING avocados for years now. I assume it’s because it’s good for my eyes. (Your body tends to crave what it needs…) We already eat a lot of seafood and I could EASILY be pescatarian. I’ve been pescatarian off and on since I was a teen, and occasionally I really crave a burger or steak, but mostly I’m satiated with tuna steaks, swordfish or salmon–a heavy, meaty fish.
  8. Pain management can be dealt with through medical cannabis. Unfortunately the pain is what I am dealing with more so again, now that I quit taking the drugs that the rheumy prescribed. I qualified for the medical cannabis card in Illinois and it is not illegal for private use in most of the Central American countries. Hopefully the massages will reduce the need for any chemicals, but I feel muchMUCHmuch better with cannabis than I do with medications that can cause me to go blind eventually.

So, there it is. In black and white. Wish me luck!

An Open Letter To Those Without Sjogren’s Syndrome

Sjodry & Parched

I recently came across a site: http://notdoneliving.net/blog/openletter-id which posted an Open Letter to those without Chronic Illness. I noticed that there are several adaptations to the letter that people have made with respect to their various specific medical conditions. Of course I decided that I should immediately create an Open Letter To Those Without Sjogren’s Syndrome. So for any of my Sjoggie friends who may feel the need to share this message with someone, please feel free:

An Open Letter To Those Without Sjogren’s Syndrome..

What I would like you to know is that I have a mostly invisible, chronic illness called Sjogren’s Syndrome. Life as I know it, is unpredictable and changes daily for me. Just because you cannot see those changes or their impact on my daily functioning, does not mean that they are not real.

Most people have never heard of Sjogren’s Syndrome. And for the…

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Puppy Pirates, Belly Dance & 5K time!

My friend Jenni reminded me that I have been horribly neglecting my blog! So, here I am to make amends.

First, Reno & I are beginning the Couch to 5K program again–tonight! This is a great program for beginning runners, or runners who haven’t been out in a while due to illness, injury, etc. It’s easy to follow and breaks down your running routine into bite-size, doable chunks.

We will be Running with the Dogs to support the Paws Giving Independence Program–which is an amazing program that rescues dogs who have not been adopted from shelters and trains them to be service dogs. This year’s theme is Pirates–Reno will make the cutest puppy pirate ever! Here we are after the Running with the Dogs 5K last year–which was Super Hero-themed.

Super Reno

Our other dog, Primo, also loves to run. He is not very social, however, so I’ve been nervous about taking him to run anywhere besides our neighborhood!

The other fun bit of fitness news is that I started taking belly dance lessons with one of my childhood besties last weekend. So much fun! Plus, my friend and I don’t get to see each other nearly enough–now we’ll see each other every week!

Weekend Retreat

So far, it has been lovely. I didn’t get to complete the juice cleanse/fast because the migraine got too intense the first night. Blood sugar levels might prevent me from doing this again. Might just need to eat clean instead.

What I have done so far while hubs is out-of-country:

  1. Wrote several long overdue pen pal letters complete with mail art! I’m on my 5th letter now and I hope to write 8 total letters before the weekend is over.
  2. Journaled. Not as much as I would have liked to, but I still have all of tomorrow (Sunday) and Monday, too.
  3. Deep-cleaned the bathroom, including the bathtub (grout too) and the light fixtures. Go me.
  4. Shopped for low-carbing at the grocery store. Made bacon-wrapped asparagus for supper tonight. Basked in the glory that is bacon.
  5. Went to the bank. Paid on my credit card. Paid a couple of other bills.
  6. Watched Puss In Boots.
  7. Walked the puppy boys.
  8. Laundry. Lots and lots of laundry. Found articles of clothing hiding in my closet that I should be wearing to work because they fit and they are cute. (Forgot that I lost some weight last year, therefore, I can haz cute clothes.)
  9. Cleaned bedroom.
  10. Did dishes.
  11. Swept & mopped hallway. Swept out vent.
  12. Relaxed. Went at my own pace.

I think #12 is key. I haven’t accomplished a great deal, but I’ve accomplished more than I normally would on a typical Saturday (at least this summer) and I think it’s because I’m allowing myself to take breaks when I need to. I’m going at my own pace. I’m not trying to go at someone else’s pace. I can’t force myself to do more anymore…wish I could, but it just doesn’t work like that with this disease. Wish I could convince my mind of that. Wish I could convince hubs of that. He doesn’t get that when I’m done, I’m DONE. There is no more. When I push myself too much, I get sick. Very sick. I’m still learning…so I guess if I’m still learning, it’s going to take time to teach him, isn’t it?

I’ll try to pop back in tomorrow again. Hopefully I’ll have even more to add to my list, but so far, I feel like this has been a great weekend. I hope the weather will be better tomorrow because I have some outdoor things I’d like to get done.

Buenas noches!

Renewal

I’m on Day #17 of headache. I have officially downgraded this migraine-thingee to headache because I haven’t vomited since Friday. That being said, I don’t have an appetite yet and became nauseous again today. I’m supposed to get Botox injections in the base of my skull, but I am trying holistic therapies first. I have received 2 massages, which are cheaper than my deductible at the doctor’s office (and WAY more enjoyable), plus got me out of puking mode on Saturday.

Hubs leaves for Panama tomorrow, and I will spend five days concentrating on healing and renewal while he’s gone. I will start with a 2-day juice fast because to be perfectly honest, I’ll be “eating” more than I have been for the past 3 weeks on this fast. I’ve done it several times before and it’s a liver, colon & gall bladder cleanse that my holistic doctor recommended. I’m hoping to kick some healing energy in gear. It’s all organic juice & water for 2 days, followed by a day of organic whole fruits and veggies & then eating clean for a few days after the cleanse and flushing with lots of water. Shouldn’t be a problem as we have a bumper crop of yummy tomatoes and cucumbers in our garden right now.

To aid the renewal, I’m thinking of new positive mantras for myself to get out of this negative slump I’m in. I haven’t nailed the mantra yet, so I’m just going with “I’m perfect just the way I am,” for now. It’s a start. I will be focusing on positive affirmations (aka whatever mantra(s) I decide to use) over the weekend as I go through closets and purge stuff we no longer need. We badly need to simplify, especially if we’ll be moving to Central America in a couple of years!

I’m also going to work on yoga and dance. I haven’t danced in so long, I think my body has forgotten how to move. I am not a dancer. I love to dance, but I am definitely NOT a dancer. I practice Middle Eastern style belly dance because it’s the only dance I’m coordinated enough to grasp the concept of. Well, I can salsa a little. (I’m part Cuban…I think our hips just inherently know what to do whenever music plays, or there is a rhythm of any sort. Where I have trouble is with my feet. I think I was born with two left ones.)

The good news is since I’m no longer in a calorie deficit, I have a wee bit of energy again and the pups are happy because I’m able to walk them without feeling like I’m going to pass out, so we’re going for more than just a quick jaunt. Poor babies still aren’t going for runs and Reno & I have another 5k to train for, though! (October, so we still have some time.)

 

Woman Unplugged

imageFirst things first, I want to make clear that I don’t intend this to be a blog of gloom and doom because I am not the gloom and doom sort of person. I’m generally upbeat, definitely offbeat and I will find a way to make lemonade out of the sourest lemons, even if I have to machete an entire sugar cane field to do it! Eleven days (and counting) of a migraine does have a way of depleting your body of serotonin, however. Buh. Today I’ve run the gamut of the headache spectrum. I woke up with little to no headache which is like the best kind of euphoria in my world! By lunchtime the migraine was back, picked its side and I had accompanying nausea. Shortly after I got home from work tonight I was vomiting and praying for a guillotine to magically fall from my ceiling.

(Off with my head!)

After a nap I felt better. After macaroni & cheese and pain medication, even better still, and now it’s back to an annoying moderate migraine again with much milder queasiness than before.

My Vitamin D levels are even lower now than they were in June and I finished prescription strength D about three weeks ago. I thought I was going to have to get the injections, but luckily instead I’m back on prescription D at twice the dosage and three times longer. Since I have lupus, I’m supposed to avoid prolonged exposure to the sun, but when I saw my rheumatologist the other day, he recommended I take ten minute bursts outside whenever I can. (Have a call in to neuro to see if this could be why I want a guillotine so badly right now.)

Back to making lemonade. I am an avid journaler. I’m guessing a lot of writers are. It’s how we flesh out story ideas, how we play with words, how we make sense of the world around us…how we stay sane. I love “how to” books. It isn’t as though I don’t know “how to journal,” but I love learning about other people’s processes. A few of my favorite concepts have come from these books and one I have felt drawn to (again) lately is Sarah Ban Breathnac’s Simple Abundance Journal. I need to get off my Woe Is Me Merry-Go-Round and remember that I really do have a lot to be thankful for, and that I am and will always be a work in progress.

I have strayed from the path of self discovery, and I wonder how that plays into my health. I feel like when I am in tune with the vibrations of the world, I’m more in touch with myself, thus healthier. Or maybe when I’m more in touch with myself, I’m more tuned into the world around me.

This is only one of many reasons why I will be unplugging myself from the electronic world this weekend. Sure, blogging is great, but there is something so organic about putting pen to paper, that typing can’t provide. Journaling by hand is an instantaneous thought to paper connection. I feel more like I can free associate and be more authentic when I write in a beat-up old notebook. Then, there is the obvious: looking at a computer screen, a moving television or cinema screen, etc., puts a strain on the eyes, which causes more headaches. There is also a certain level of stress… I don’t know if stress is exactly the right word, but expectation, perhaps, to answer emails, or pay attention to your friends’ status updates and things of that nature when you’re on a computer. It’s silly when you really think about it, because on the weekend, it’s a self-imposed expectation. Your existence [job] doesn’t depend on how many images of cute kittens you “like” or statuses you commiserate with on a Saturday morning. I also feel compelled to work. Whether it’s working on our websites, or writing, it’s still “work.” I need to have a “not work” day.

I need a day to unwind, unstress, unworry, unsick, unhurt, unhurry, unwork and unplug.

Migraine Brain

It’s been a while, eh? Like almost a year, eh?

A lot has changed, but not a lot.

As in, I have an entirely new diagnosis but the same damn symptoms.

New diagnosis is Temporal Lobe Epilepsy. Sounds fancy, doesn’t it? I share it with some pretty famous people, too. Most notably, Lewis Carroll, who wrote Alice In Wonderland (interestingly, I refer to quotes from his books quite often when I am suffering from migraines and have always related to his analogies all too well, especially the “off with the head” references, but mostly as they refer to my own head, most unfortunately…) I also suffer from a secondary syndrome that is closely related to this, called Alice In Wonderland Syndrome, which explains why I relate so well.

I’m on pretty much Day #9 of a migraine right now. I had a fabulous ten hours of relief on Sunday, but not so much the rest of the time. I’m about to carve an entire section of my head out. Seriously. Can I donate it to science, so they can study it? Save someone else the agony? I’d like to maybe live another day, but not with this…I’m not puking right now, and not as nauseous, but I had three days of pure hell. I’m still dizzy and still not right. Working is pretty much impossible, but I don’t have another choice because I so badly need the insurance. My hands are really fucking tied right now, and I really hate this Catch-22 we’re in.

Too sick to work, but too sick not to? What breed of BS is this anyway? I am making mistake after mistake after mistake at work. My confidence has hit an all-time low where that is concerned. I don’t even know what I’m good at anymore, other than writing. I still have people skills too, I think.

My Vitamin D levels are non-existent, so that doesn’t help matters. Is this what rock bottom feels like? I now have chronic migraine, temporal lobe epilepsy, lupus, Sjögren’s syndrome, fibromyalgia, chronic fatigue & chronic pneumonia (chronic other stuff too, but that’s like chronic UTI, sinusitis, etc.). Is this when I fill out my paperwork for disability? =( Can I just say that I am feeling a wee tad defeated today? Just last week I actually thought I might still have a marathon in me, so I signed up for an informational phone call. I don’t want to lose that hope. I just can’t. Y’know?