Update: Meds, Symptoms, Support Group.

Hi Friends!

   It's 4:00 am now. I woke at 3am to that unmistakable, throbbing, dull aching with shooting pain and miserable joints. These signals mean my pain medication has worn off and my body is pissed at me. Sleep doesn't come easy when you are in pain. Chronic illness or not, I'm sure you can relate to this.

     Its been awhile since I've blogged; and I haven't since I've moved back to Humboldt. Leaving LA was difficult, yet a no-brainer at the same time. At first I found myself wracking my brain with every possible avenue that would allow me to stay. The days of wearing heels are few and far between now, but what if was only for a couple of hours at a time? How much $$$ is worth the pain the moment, and in my back the next day?

Could I join one of the Dungeons in LA and become a professional Dominatrix??

I ruled out dancing. The hours were too long, especially in heels; and it's difficult to fake enthusiasm when you feel like crap. Plus, I did Armature Night once, which is when I found out that I sucked dancing in any sort of sexy fashion..

     Dancing is ruled out. But as a dominatrix I wouldn't need to act cheery at all. And I could get paid to take my pain and frustrations out on a client. I wasn't sure about this avenue, though it's a very interesting thought. I wasn't sure if I could stomach it, even if I could endure whatever physical requirements that come with the job.

     WebCam Girl? That seemed like a 24/7 job in order to make any real money. Plus I was living in the living room of a guest house at the time. No privacy, no door to shut. Not doable in that living situation. Most importantly, You have to be a really good actress who's great at faking enthusiasm. If you don't end up genuinely enjoying it, you come off like this...Which nobody wants to pay good money for.

I think these types of professions take a lot of self-confidence and guts, they just didn't add up for me. Furthermore, I didn't need any added stress --of any kind. That's about the worst thing you can do for Fibro. Bring on the stress, bring the a flare up. But any regular 9-5pm Serving, or 9-3am Bartending was out of the question. 

Back to leaving LA... I denied it would come to that. After a pros and cons list, along with ruling out the aforementioned professions, I came to terms with the fact that I had to move. All of these thoughts of unconventional professions were born out of desperation, mostly. The truth is that I'm still living a horizontal life, in bed 80% of the time. That was not meant to be a "Working Girl" joke. I still have pain and fatigue 90% of the time. But my meds certainly help make that more bearable.   

I can no longer work. I can't stand up for more than about five minutes before my body begs me to sit or lay down. Let alone do the most simple, everyday tasks. I looked forward to being close to my mom and dad, and having their help and support. Ultimately, moving back meant living with my mom; which meant not having to worry about rent. Which meant not having to worry about working hard enough to pay for rent. Which means way less stress, and more time to heal. It's starting to sound better...

 Moving back to a quiet (rarely a siren heard, never a helicopter shining its light in your Venice apartment's window,) easy to navigate, no traffic, lightly-populated County meant less stress. And less noise, which is ideal. We Fibros are very audio-sensitive.

 Then, I actually really looked forward to moving back --it was a relief!

      I went through the five stages of grief. I've been back two weeks now, most of that spent in spent in bed. Humboldt is far colder and much more humid than LA. Fibro and bad joints don't appreciate either of those. But surprisingly, I'm still glad to be here; and in Fortuna no less. And I am soooooo looking forward to getting well! Having insurance is very exciting. This introduces a whole new level of hope.

      I have my first doctor appointment tomorrow (today) since moving back. Not counting the morphine and anti-inflammatory shots I received in the bum during an ER visit last week. The appointment is with my old primary, who first helped me get diagnosed. I'm looking forward to that very much. I can't wait to get referrals and back on Lyrica. Bring on the new blood work, a back specialists to prescribe x-rays and MRIs on my back and ankles. Bring on the acupuncture, swimming therapy, the pain management doc, the psychiatrist, the therapist, --whatever could help and Blue Cross will cover! Here's a fun fact, last year in Humboldt we had three Rheumies; one was great. Now we have ONE. Dr. Heidi Wang. She's about as rude, cold, uncaring, and unhelpful as they come. And she's the only option in Humboldt.

       Her parents must have forced her in the profession or something; as she's clearly unhappy with, dare I say --hates, her job. She'd make a good dominatrix. I wonder what she really wanted to do with her life. Actress? Hand model? Ice Cream taster? 
      During my one and only appointment with her, she told me to bend down and touch my toes, so I did. She then said if I could manage to do that, there was nothing wrong with me. Never mind the fact that I had done gymnastics for eight years, Pilates and yoga for many years; up until I became ill. I left her office pissed off, frustrated, and bewildered. 

      I saw my primary two weeks later. She told me I had Fibromyalgia. I was stumped as to how she came to that conclusion. I came back to her office to get the results from some blood work she had ordered, and I know it wasn't going to show up there. She said Dr. Heidi Wong had diagnosed me with Fibro.

     This came as a surprise, as the only time we talked about Fibro, was when I brought it up as a possible explanation for my symptoms. Her response, "We treat that with Chemo-like drugs. Do you want that? Do you want to basically be on Chemo?" 
      Still to this day I don't know what she was talking about. None of my meds I take have ever described as "chemo-like." And she never even told me she was diagnosing me with Fibro. I also found it very strange that she ended up diagnosing me with Fibromyalgia after giving me such shit about bringing it up. Well Humboldt County's chronically ill, we are stuck with Heidi effing Wong. Terrific.

The Sevella I recently started is akin to speed or Adderall. So I'm upall night. (I take a day and a night dose.) So while wired one night, I managed to get out, and went to Humboldt's only Vape Lounge; located in Arcata. BigFish Vape Lab. I had a good time, and eased a bit of the stir-craziness. 

Carly and I enjoying ourselves at BigFish Vapor Lab

My precious.... 

One of my fav flavors, Mother's Milk by Suicide Bunny. YUM!

I've also been hanging out with a friend who is preggers for her first time. Her body is not responding to it well at all. So we've been hanging out, laying around, drinking ginger ale, sleeping, and watching movies. Thank the Gods for that. Misery loves company! An old high school BFF sent me a Welcome Back bouquet of flowers with a beautiful card. It happened to be on a day when I was particularly ill. She texted me, "If you need a smile, look on your front porch.” This is what I found. Made my day.

      I have a friend from LA coming to visit in 16 days to visit for a weekend. I'm looking forward to that! He sent me a care package that I got a few days ago. He sent phone accessories, lots of movies on a flash drive, a couple vape flavors, and a lovely note --that was cut in half. He didn't even bother taping it back together. That's going in my scrap book! Another thing that made my day. I have two more care packages on the way! One from Del McSoulMate. *Happy*

     BUT, but, here's my most exciting news yet! I've searched high and low for a support group in Humboldt for the chronically ill; Fibro, Sjögren's other; and I didn't find a thing. (that's not the good part.)

 So I've decided to start one!

 I made a Facebook page: Fibromyalgia & other Chronic Illnesses: Humboldt County

And a Twitter: @FibroinHumboldt

And I put up an ad on Craigslist with links to the above sites. My next step is to design, print, and distribute fliers around Humboldt to reach more people. I have five interested parties so far, perfect to get started with! I know the fliers will kick those numbers up, and let more people know that the option for an in-person support group is here now. I, like many others, belong to a few online support groups, but personally, I don't find them satisfying..

I can't begin to express how excited I am to talk with others, in person, about: 
their symptoms, how Fibro or whatever other chronic illnesses have changed their lifes, what meds have and haven't worked for them, what local doctors have helped and who to stay away from, what their pain is like, what their sleep is like, what their energy levels are like, if they are able to work, if so, do they have an accommodating employer, are they on disability, ect. 

     This undertaking has me more hopeful than ever. I can't wait to have a group of others to relate to and network with. I'm excited that this will help me, and others get the support we need from those who know the daily struggles first-hand. 

     On another extremely positive note, my mom bought me Blue Cross insurance! I applied for Covered Ca last year --when enrollment first opened. After about 10 calls, each with 45 minute to an hour wait time, and a few emails --nothing. That's six months of waiting. I had high hopes for the program. I signed up as soon as the website allowed, followed up relentlessly, with nothing to show for it. So, thank you Mom! Thank you for saving my ass and for helping to pave the road to a better quality of life for me!

     Meds I'm Currently on: Cymbalta 60 mgs, Sevella 100mgs, Norco, and Klonopin. I'm hoping to get back on Lryica now that I have insurance. All of these meds help dull the pain some, as well as raise my energy levels some. Yet not to the level that will allow me to return to my former productive life.

    Current Symptoms: Back pain: upper/mid/lower, painful, throbbing, sore legs, weak & painful ankles, weak/painful/stiff/cold hands and fingers, fatigue, lack of balance, worst/most confusing sleep schedule ever (think vampire,) lack of appetite, difficulty swallowing --even water, back becomes a hot/swollen/inflamed brick with spasms, body feel heavy like a lead brick that is getting the flu, painful/weak knees, inside & out (compression braces help,) inability to stand more than five or so minutes as my body feels heavy/tired/painful, forgetfulness, trouble with word recall.

    I've been so active my whole life. A workout fiend my entire life. I usually hold two jobs, and attend school full-time. At this point, this laying around business is driving me crazy!

I'm pretty much living off the interweb, texts, and the occasional company. One thing I promised myself about moving back is that I wouldn't be so much of a recluse. When I could, I'd go out. I'd meet new people. I'd get out into nature and take pictures. And I'm slowly getting there..

     It's going to be a long, slow road to recovery, but I'm out of my mind with excitement. I'm much more hopeful now that I have health insurance.

     To my fellow Fibros & others: Please use our Facebook page like it's yours; cause it is! Post how you feeling that day, any questions you have, information you want to share, inspirational messages or pictures you come across. Use it like your own personal daily journal. Use it to reach out to others. That's why it exists.

Be Well friends,

~Inga

Muppet Baby. Always lookin for love.