Another Lupus Post

     SLE (Lupus for non-Lupers) gives you more than unpredictability and sickness.  It creates a never-ending game of life-force Cat and Mouse; sometimes this game is followed by a round of Who Done It?.

     When I feel less than 100%, I chalk it up to Lupus 99% of the time.  This 99% of Lupus is the game of Cat and Mouse.  I'll chase the headache mouse everyday at 2 pm for a month before it runs into its hole to sleep through the next month.  I chase the lethargy mouse every day.  In and out it runs from the baseboards, snatching at breakfast, snatching at lunch.  I chase twenty other Lupus mice around my body at any given moment.

     I have a mild case.  While Lupus makes me a somewhat unreliable dinner guest, it rarely interferes with the larger picture in my life.  I can hold a demanding full time job, have plenty of friends, a husband, and a social life of whatever excitement I desire.

     It's the pesky 1% that I'm not sure if I can chalk up to Lupus that creates this Who Done It? scenario.  A health issue that comes along that scares me enough to consider seeing a doctor.

     Doctors are mostly useless if you have Lupus.  Lupus is an autoimmune disease (read: my body attacks itself) treated with a mild anti-malarial if you have a mild case.  The drug has not seemed to effect me much one way or another (on or off of it).  Serious cases have the option of much stronger drugs, but come with more serious side effects.  My doctors over the years have helped to educate me on what is known about Lupus, but otherwise have done little other than monitor various levels in my blood and suggest lifestyle adaptations which I already employ.

     BUT, there is still this 1%.  The 1% symptoms that have me asking, "Is this Lupus? or is this something else?  Who done it?".  The times when I am afraid that I may actually require medical treatment.  Then the length and severity of my symptoms battle with my will to hold out seeing or consulting a doctor.  I know you are thinking that doctors are helpful!  I should see a doctor.  Ha!  I only see a doctor for a health issue I truly cannot read well enough myself.

     My seeing a doctor has yet to result in answers or relief.  No, my seeing a doctor results in a string of additional questions and additional health issues discovered through testing which did not yield answers to the original issue.  Recap: no answers/relief, more issues/problems.  I'm also out a bunch of money from unnecessary testing; not to mention the hours spent in doctor's offices, getting blood drawn, waiting rooms, and exposure to radiation and such.  Plus, there is nothing but stress and frustration wading through our healthcare system.  Oh, and Lupus is triggered by stress.  See how that works?  It's like a neat little loop.

     I know my body pretty well.  I've learned to tune in, listen to what it it tells me.  I have three levels of health issues: 1. Lupus (covers any health issue I can stand), 2. Emergency (this is pretty clear), and 3. Um...? which usually involves waiting it out a bit to see how I feel in a day or two.  Still feel on the verge of heading to the ER after 2 days?, then I'll see a doctor.

     Luckily, I'm pretty healthy.  I haven't had any 2 or 3-Doctor level health issues for years.  But every now and then I get a 3-Um...? issue that I have to wait out a day or two.  In these times, I am reminded of how lucky I am to have a mild case.  I'm reminded of how broken our healthcare system is.  I'm reminded that we don't get to choose our trials, just how we deal with them.  And I think that at least I have a trial that I can put a name to, find a community, research, and deal with.  I have a trial that reminds me to appreciate every good day, every great meal, every wonderful person in my life.  And of those, I have many.

Wedding - Budget, Planning, Costs, Tips

   When we set out to plan a budget for our wedding, it would have been really helpful if we had had a realistic look at someone else's budget and cost.  So, friends, here you go.  I'll lay out what we laid out and what we got for the cost and what worked & not.  Hopefully, it'll help some one out there trying to put together their own budget.

Details:
   --Guests: attended 102 (invited 140), includes us
   --Venue: Power Plant Studio, Old City, Philadelphia
   --Date: Saturday night, August 17 (7 - midnight)

   --Caterer: Chef's Table
   --Menu: Pig Roast from Cannulis in the Italian Market & Stuffed Peppers (Vegan/Veg), 2 sides, appetizers, coffee & tea.  All soda, juice, & mixers included.  Buffet-style.
            Dessert: made by a guest, we paid for cost of supplies only which was completely amazing.
   --Open Full Bar - 14 cases of beer, 3 cases of wine, 14 bottles of booze (could have had a few more bottles of vodka & whiskey)

   --Photographer: no. HOWEVER, we did have a "photobooth" by Love Shack Photo & Jackie (the photographer) was amazing.
   --DJ: no.  We just used the wifi & created Spotify lists.

Not included in the budget - dress / suit / outfits for bride and groom, honeymoon, rings, lunches for get togethers to DIY (it adds up), favors (did not do this other than the toys on the tables), thank you notes/stamps (to be sent still, but I expect it will cost about $100).

   We spent our money on the venue, the food, and the photobooth.  Our wedding was more guest-centered, and we really just wanted to throw a great party.

Total out: $14,000 (plus $1000 venue deposit which we've already gotten back).

-Rough breakdown: Food + Alcohol: $7,000  (includes staffing, real plates, glass, & silverware)
-Venue: $4300
-Photobooth: $1300
-Invitations & Programs: $200 (we did postcards for both)
-Marriage Licence: $90 (Quaker licence, so no need for an officiant)
-Extas: $1000 - centerpieces (diy), tablecloths (diy), decoration materials (diy), toys for the tables, tea lights, cake costs, cake stands/table, bathroom baskets (2 @ $50 each) bobby pins, nail polish, little odds & ends.

I'll post about what worked/didn't & thoughts on the process in another post, but wanted to put this out there to help out folks who are planning a budget.

We were fairly bare bones (I didn't get new shoes, my sister did my hair, I did my nails & make-up, I made my dress, & we didn't have a DJ), but in the end, we were glad we spent the money were we did (on our guests) and were overall, happy with the evening.  I just wish it hadn't gone by so quickly!

Here's an image of the program postcard (front):

Motivation, Lupus, and Life

     25 June was the first day of my self-imposed swim challenge.  I had finally decided to take the plunge and get a gym membership (sorry, I just couldn't resist).  In the city, it is difficult to find a pool with more than one lane or two.  I am lucky.  The gym in my 'hood has 4 lanes.  I rarely have to wait as I am unemployed and swim at off-hours.

     I started swimming leading up to my wedding.  I know you are thinking, "To be more fit in her dress".  But actually no.  I made my dress and didn't finish it until the week of the wedding (full disclosure: my mom sewed me into it that day).  So, I could have altered it to fit my shape as needed.  I swim to increase my energy and stamina.

     It's been hard staying motivated even for the 2 months I've been swimming.  Don't get me wrong, I like to swim.  I love to play in the water.  I've been able to swim well since I was a wee bitty girl.  But, I'd rather be in the studio.  I'd rather be reading.  I'd rather be writing.

     Having SLE (Lupus) means that I am tired often.  Swimming helps me to do more of these reading, writing, and art-ing "rathers".  Regular exercise is imperative to an energy level I need to function in a normal capacity on a daily basis.  This is truly my motivation.  The bonuses of being healthier mentally & emotionally are just not enough to motivate me on their own.

     Every morning, I got myself psyched up with inner-commentary: "Go swimming!  You will be able to dance longer at your wedding without being tired if you do!  You'll have more fun!  You only get to do this once, so you'd better enjoy it!" Now that the wedding is over, my inner dialog is something like this: "You are doing great!  You are already stronger!  Don't lose the progress you've made.  You can do it!  Just today.  Just go today.  You enjoy your life better when you swim."  But it's hard.  I struggle every day to overcome my tiredness and desire to do other things to make the time and energy for swimming.

     I try to also set little goals for myself.  The first day I swam, I realized how hard it was!  For those of you who don't swim, I find it to be really hard work.  So, I built up.  I started with Breast Stroke.  I worked up to 30 minutes of laps.  Always giving myself time at the end to play in the water.  I started to do small strength training exercises in the pool or at home.  Then I worked in a lap or two of Free Style.  Then worked up to 2 laps Free, 1 lap Breast Stroke.  Now, I swim for 30 or more minutes of Free Style most days.  It is still hard every day.  I'm still not that strong.  I feel as if I can only swim for 30 minutes of Free Style after 2 months!  Zeesh.

    Maybe the point of this post is just to say that it takes a long time to build up strength.  Stick to it!  You can do it!  Maybe also, to say that if you struggle with motivation to work out - I HEAR YOU.  Maybe that if you have SLE, plan a little exercise into your daily routine if you can (or 4 or 5 times a week), because it really and truly helps.

     There is no shame in starting small.  The smaller you have to start, the prouder you should be.  If you are not super fit, not comfortable in a gym, and have to start small - GOOD FOR YOU to make that happen.  Remember it is you who have the most to gain.  Remember that whatever your level of fitness, every moment you put in benefits YOU.

    Find something that's fun - classes, group running, organizations, pod-casts...and/or find a cause - a benefit race or walk to train for, you and a friend/partner getting healthy together, or an event you will be attending in a few months.

    Do what works for you.  If everyone tells you to vary it up, but you love that one thing, who cares?  In the end, they are not you.  Listen to your body.  It will tell you what is working and when you need a break or to rest.  Eat protein.

     Splurge a little on yourself.  Get clothing you like to work out in.  Indulge.  It'll be a little reward and also might help get you motivated to work out ("You just spent $x on that - use it!").

     And remember to go easy on yourself.  Some days after 15 minutes in the pool, I'm done.  No guilt.  That's just how it is.  Give yourself a pass sometimes.  Give yourself pep talks.  Reward yourself.  

     Pick out all the things you like about yourself.  Remind yourself of your best qualities often.