Things are Looking UP!

November 26, 2012 at 9:38 pm (Chronic Pain, Disability, Hospitalizations, Living, Living With Chronic Illness, Medical, Mental Health, Spiritual, The Journey Towards Diagnosis, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , , , , , , , , )

I get comments sometimes that this blog has turned into one gripe after another about how negative my life is; a “bitch fest”, “too much focus on the negative, and not enough positive thinking”, etc. So I thought since I’m having a pretty red-letter day that I would take a moment to let all of you know some of the positive things that are going on in my life.

First and foremost, when I was seen for my post-hospital stay follow up, my surgery team jointly decided that there was no need for me to be seen again until my pre-surgery appointment on December 14th. This is great news, and basically turned 4 appointments into one. We decided to leave the drain in until surgery, both to reduce the number of appointments and also to keep the abscess from cultivating more ick before it’s surgically excised.

We’ve found a great service that we’re going to be using to control all the informational traffic around the surgery and aftermath; rather than litter social media and having multiple phone trees, we’re using Wiggio as our sole information stream. We chose Wiggio because it has a ton of features that will be useful for us, including the ability to send mass text messages, have a shared calendar to schedule visits, project folders to organize different things that I or Rave will need help with, and lots more. The way the Wiggio works, you need to send us an email at delandrave@gmail.com to request an invite; we did this so we can know everyone who is on the group and make sure people who are on there are more than just passively interested in what’s going on. There will be some posts made to social media, so if all you want to know is if I’m out of surgery or ICU, there will likely be posts to that effect eventually. On the other hand, if you want to be actively involved in helping Rave with things during my hospital stay, or want up-to-the-minute information on my situation, please feel free to ask us for an invite. If you’re not someone we already know, you may want to include some information as to how you know me and how you expect to be helpful, so we have some idea. Like I said, we want to make sure everyone who is on the Wiggio is someone we trust to be an active partner in what is happening.

In that vein, the house that we’ve been affectionately referring to as “The Squat” is on the market, and the arrangement was that we could stay here until it sells. Well, an offer has been made, and if the bank accepts it, we have 45 days to vacate the premises. But fortunately, we found a perfect place for us right in southeastern Frederick; Rave went to tour the house today and found it to be old and a little beat up, but otherwise totally awesome. It’s on a 41 acre horse farm, a four bedroom house with a master bedroom/kitchen/full bath all on the first floor. I love that we’ll have space for two guest rooms, which will double as a sewing room for Rave and an altar room for me. We should be getting an application tomorrow; we tried to make a deposit because the landlady said she’s had a LOT of interest, but she wouldn’t accept it. So for now, we just ask that you keep your everythings crossed that the application goes through with flying colors and we can solidify a place to live. It would mean a large burden off of both of our shoulders, so we can focus on the surgery without having to split that focus with the arduous task for finding a place to live.

And what’s made that all workable has been the incredibly wonderful response to our request for help. We’ve received so many packages from my Amazon wish list, and a blessed amount of financial assistance. We have enough to make a good deposit on the house, should we pass the application. However, we can always use more help, so if you haven’t had a chance to check it out, please take a look at my entry detailing the many ways you can be of assistance to us.

That’s not all! Rave went down to my old house to pick up some belongings and happened to find a piece of mail I have been waiting on for four months! Yes, that’s right, my name change has been approved, no court date needed! I am so incredibly pleased that my name is finally my own in all senses; I have been told by my Gods that I am *never* to change it again, no matter what. I finally have a name I chose for myself, one that represents who I am and how I move in the world. I took my long-time nickname and nom de plume, “Del”, as my first name. I kept the middle name my parents gave me, because it’s pretty awesome and also as a tie to my familial line, so it stays “Astra”. Finally, I was able to shed myself of my STBX’s last name (which I wasn’t thrilled about taking in the first place, but did it as a token of my love and devotion to him) and take my Clan’s name, something I’ve been wanting to do for quite some time but my STBX was totally against. So my full legal name, which I am unafraid to post on the Internet, is Del Astra Tashlin.

Another great thing is that I am now on a course of drugs to finally treat my latent tuberculosis, and I haven’t had any withdrawal or other terrible side effects. I, by no means, am trying to say it’s been a walk in the park, especially combined with all the antibiotics and other meds I’m on, but it’s nothing like when I tried the Rifampin, twice, so I am so pleased that someday, I will be TB free.

So in all, things have been looking up here at The Squat. We’ve finally hit a streak of good news, tons of support from our friends and family, and are preparing for a surgery that, although it won’t heal *all* the problems I face, will significantly reduce my suffering (especially in terms of infections and repeated hernia surgeries) for some time. There is hope that while I’m in the hospital, they will be able to run a battery of tests to help discover why my immune system seems to be so suppressed/why I seem to get every infection that walks by, as well as possibly transfer my pain management to an office closer to where I live now (the one I currently see is now over three hours away!), and also get more Johns Hopkins doctors interested in my case so I can get some integrated care – where the ID doc knows what tests the neurologist ran, and the pain management doctor can talk to my surgeon about how to administer meds so my chronic *and* acute pain can be treated simultaneously, and the like. This is all very exciting, and a really good reason to live, which is the real thing I’ve been looking for these past four months.

Thank you to all the Gods and Spirits who have been with me patiently while I thrashed through my suffering! May they stay beside me through the trials ahead, but also be able to celebrate with me all the good things that have come into my life! Thank you to all the people who have done the same!

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1 Comment

  1. EVCelt said,

    This is very good to hear…

    Congrats on the name change!

    And fingers crossed for the place near Frederick, as that sounds almost perfect.

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