Hey yall!

So a bunch of new and exciting (at least to me) things are on the horizon! I'm working on some blog post but these will be my last post on here. But don't worry! It doesn't mean I'm stopping I'm just switching platforms! I'm still setting up my website but if yall could go over and give it a follow and help me transition that would be awesome! I will be working towards self hosting which will help me in the long run. There's this one product that I cannot wait to tell yall about! 

I guess an update is due as well! As yall know that Affordable Care Act a.k.a. ACA a.k.a. Obama Care has been repealed, I'm blest enough to say this does not affect me personally, at least not yet. So that's good news but just don't get me started on the topic! 

I am in the process of being retested for several illnesses that I was tested for in the beginning of this journey. One of which is fibromyalgia which a lot of my fellow spoonies are pretty sure since I have tell tale signs of it. Bittersweet it's another at least I'll have a diagnosis because treatment is complicated and of course, there's no cure. We're dealing with some problems to see specialist but it sounds like we finally spoke to the right people this week to clear things up

I am working on my disability application (ugh!) which is required of me to keep my insurance under my dad coming my birthday this year. I will be under medicaid which is state insurance under disability and then, after awhile I will be put on medicare which is state. Medicaid will become my primary and tricare (military insurance) will become my secondary.  Definetly need prayers there because usually you are denied a couple times before recieving it and you sometimes go to "court" If anyone has any experience with this or you yourself are going through this or will go through this please contact me so we can work together!

As for the family, we're hanging in there. Yet again we have been struck by craziness, our breaker for our AC/heater gave out so we are relying on space heaters and fans in this crazy, let's go through every season, Texas weather. We're having to keep an eye on money but we will survive! It's driving us a little batty that we keep getting punched in the gut finacially but there's not much we can do. We push forward, trust God, and lean on each other. Other than that mom and dad are keeping busy with work and helping me out.

How are YOU doing? oh and here's my new blog link! Still working on everything but at least you can go follow it so you know when I start posting things!

https://chronicalyblooming.wordpress.com/

I am Beyond Broken

God I feel like I'm being dramatic but ask anyone who's been around me lately and apparently I'm doing really good or better than they think someone in my situation would. I feel like that's supposed to count for something but it doesn't feel like it. Honestly, it's kinda frustrating because I feel like no one gets where I truly am. I lasted longer than when I had my first breakdown but since then I just crashed and I crashed hard.... so much so that my emotions and depression are so out of control I don't feel myself

But first a PSA: PLEASE STOP ASKING ME ABOUT MY NEUROSTIMULATOR SITUATION!! Sorry for the CAPS but I just can't deal with it right now and talking about it over and over and over again. If yall have questions feel free to ask my parents, If you have me on facebook my parents are listed as family members and you can message them. If you follow my support page leave a comment or message, my dad helps run the page and he can contact you.

If yall know me yall know I can put a positive spin on anything well, just about anything. As a spoonie we come to terms that our body have failed us and at some point it comes to an epic proportion where we're like ok I get it you can stop now. But rarely does it get so bad that it's like ok the whole world gets the point now....

I met with my neurosurgeon recently and surprise! My nylon stitches were irritating my skin so yeah those suckers came out even if my body wasn't ready, thankfully it was.

I keep flashing back to random things that have been told to me this last year on this neurostimulator journey... coming in at #1 "the good thing is the most natural thing your body can do is heal"-my neurosurgeon. Of course he had no clue that I would be his 2nd patient EVER to reject the neurostimulator but that sentence haunts me. Sure you can argue that my body was still doing what was natural, rejecting something it thought that shouldn't be there, but yeah nope not flying with me right now....

And then there's the typical way people respond when anything bad happens in life. They try to keep you positive and let me tell you it drives me INSANE right now! (Yeah see told ya, it's not me in this body right now) I can't stand it! No I'm not going to let this be a forever pity party but for the love of God can people just let me feel the way I'm supposed to right now? Me not being all sunshine and rainbows right now is NORMAL in my situation. It's also HEALTHY instead of bottling up which will just make at least 3 other illnesses I have flare up. For real though, stress can do some crazy stuff to your body even when you're perfectly healthy.

I'm not saying that you can't try to cheer me up, I'm just saying stop trying to tell me how to feel or act or whatever. To cheer me up send me cute and funny videos or pictures on Facebook or something, talk to me, offer to spend some time with me. Let me decide what to do.

And with that, if I oddly answer your "how are you feeling?" Question it's because I'm tired of saying I'm hanging in there or I'm ok or some other kinda true but still total BS line. So many people use that line to start a convo, sometimes it's hard to tell who's just trying to start a convo or who's really checking in on me. And even then, we spoonies tend to shield yall from the uncomfortableness that comes with an honest answer which I am so done with right now. So if I blindly look at you and spit out some random words, just accept it. Even if I was ok with talking about how I truly feel, it's not something I want to talk about currently.

I'm so broken beyond repair you guys it's ridiculous right now. When my neurosurgeon told me I was irritated by my stitches I just busted out laughing because nothing can surprise me at this point. I'm already KO on the floor but I'm still getting hit. So I'm just laying here taking it, waiting for it to stop. The upside is I can't get any lower. (Woo i said something positive!)

I make the effort to be how I've been lately. Why? Part of it is for me and as much as I hate to admit it, part of it is for those around me. If yall see me making an effort maybe yall won't worry as much. If I make the effort, maybe I'll get back to bring myself. So if I continue doing the things I would normally do or were working on before everything happened, maybe I'll find myself standing back up in the process

Which brings me to a semi-random thought, why the hell aren't we more open and honest about the crap going on in our lives? Why do we feel like we just have to share the happy moments on social media? Why can't we be real with ourselves and others? I'm not saying let's let all the skeletons out of the closet but that outfit you hardly ever put on deserves to be worn more and who cares what people think it's an awesome outfit. We're so afraid to be accused of being a drag, negative, dramatic, or even throwing ourselves a pity party that we block the real crap we're dealing from our social media. And when people do, we look down on them which I'm sure some of yall are doing to me right now.
Why are we scrolling through pages envying other's life and not reaching out to people to help us get there? Why are we so afraid of getting help of any sort? We're human! We are social animals and social animals don't do EVERYTHING on their own. We are made to lean on each other and like everything there's a balance. There is such thing as being too independent.

Sorry that random part was written a few days ago while I was still drugged but I still stand by it. This might be the libra in me, but life is about balance and at least from my experience, it's also being honest with ourselves. But a lot of the times we end up dealing with things in an unhealthy way. We numb ourselves by having several drinks so we don't have to think about our feelings, or we bottle them up which notice it or not, does affect you, maybe not right away but it does at some point, you may not notice it but people around you will. Out mental health is just as important as our physical, we need to learn how to properly take care of our mental health and say screw it to the stigma.

I have been in and out of therapy since a year after I got sick thanks to the whole "she's a teenager so she must be stressed out" crap that you deal with being a teen with undiagnosed problems in a children hospital. I often compare my therapist as a friend with an outside view that you see at least once a week who shuts up and lets you talk about your problems and you know what? It's freaking amazing. I've been able to understand not only the way I think. process, and deal with things but others. Sure in my opinion it kinda makes things difficult, I find myself understanding where the person I'm upset with might be coming from but it always sets the light bulb off in my head. No, I don't lay down and get poked and prodded about what's going on in my life, nor am I forced to talk about things I don't want to talk about. And if you are seeing a therapist who do those things and it's not helping you, I highly recommend finding a new therapist.

Anyways, that's my health update and ramble/rant! Thanks for reading

My Body's Betrayal

    Ok the title of this post kinda made me laugh because my body has been betraying me since I was 12 but I couldn't think of anything else..

For those of you who don't know, my neurostimulator- the device that has helped control my chronic pain IMMENSELY, is being rejected by my body. Which means I have to have it taken out. The upside is, after we let my body recover I will be put on anti-rejection meds and we'll get it implanted again and hopefully, all would be good.

But despite all that, this has been a huge blow to us all. I mean, it's pretty obvious that this has affected my parents and me but it has also been a huge blow to everyone who has supported us throughout the years. Which for some reason, is kinda surprising, even my closest friends broke down when I told them the news.

I think deep down inside I somehow knew something serious was going on but everyone else around me wasn't as concerned so I just went with them. But then my pain got worse and what was once 2 open wounds became 1 and that really caught my attention.

I know some of yall might be thinking why did it take so long to come to this, well first, it was the holidays, scheduling doctors appointments around the holidays is really difficult for some reason, all doctors are just booked up. And then, it was because we were giving antibiotics a chance to work to rule out an infection. Oh, and because of all my illnesses we knew I would heal much more slowly so since there weren't any other signs at the time we just thought I was healing much slower than we all originally believed.

So how am I feeling? Oh gosh where do I begin? I hear "I can't believe this is happening," "I can't imagine how you must feel," "I'm so sorry" so much and it's true. I mean, my parents and I don't even know how to feel or what I feel. It's just a continuous flood of emotions with moments of numbness. My depression has obviously gotten a lot worse, in all honesty since seeing my doctor I've been mainly sleeping. When I'm awake I'm trying not to cry. It's a mixture of emotional and physical pain. 

I'm angry, I think this is unfair but I want something to be angry at. I don't blame God and yeah sure this is life but I want something to specific to be angry at but all I can think of is my body and that sounds pretty stupid. 

I wish I could workout because before I fell ill when I had all these emotions stuck inside I would just workout really hard and it'll help release everything. But I can't do that unless I wanna be in the ER or hospital... 

Oh and to top all of this off I'm battling a cough/cold haha yeah I just can't win right now... 

There's been a lot of questioning right now... Am I doomed to just suffer the rest of my life, should I just do what I did before and do my best to ignore all my symptoms and try to live the life I want? And what the heck is God trying to do in my life right now? 

I'm frustrated because I don't know the answers to the questions I have right now. I mean, I know I shouldn't just try to push through because after doing that for a little over a year I became home bound/bed ridden for so far, 2 years and counting.

I'm confused because I see other people with disabilities and illnesses defying the odds and yet I can barely last a day without a nap. It makes me feel worthless but then I see the amazing and crazy amount of support I'm getting and that silence those doubts. Which btw, what took yall so long?!?! I knew I had support but for the most part, it was very silent most the time. 

I don't understand, for the most part I believe I'm a good person and it upsets me that I and other good people in the world are dealt a pretty shitty deck of cards. Despite never giving up, busting our ass and staying positive we hardly get anywhere. I know it sounds childish but it's just not fair... 

I was, finally able to try and make my life the way I wanted it to be. I had plans I was putting into action, I started physical therapy, was reaching out to people to hang out with and get out of the house, etc. But then it came to a screeching hault and now I'm stuck trying to figure out what to do again.

I've been going crazy being stuck at home! 2 years of hardly getting out the house really gets to a person who loves being around people.

So anyways this is where I'm at right now, I was hoping 2016 would be my year and who knows, maybe it still will be and Januaray just isn't my month. I just want to thank everyone for their love and support. The best thing yall can do right is just show me you're there. If you're friends with me on facebook shower me with cute and funny videos or memes or start a convo with me and try to distrat me from the hell I'm dealing with. If I need anything else I'll let yall know.

Aly

Coming out on the other side... slowly

Hey yall! Well if you follow me on instagram (@alyfilipino) yall know today I've FINALLY started to feel "human" today. I have some (keyword there) energy and being super stubborn grinning and baring my pain not taking my pain meds.

Also on instagram I'm getting in touch with people who suffer similar if not the same chronic/invisible illnesses as I do and I'm amazed! We all live in different states let alone countries but we unite as one. There's always someone online that you can talk to. To those spoonies reading this I thank you! I've been going through a rougher time as many of you know and having unconditional support and not just the typical "feel better" or "hang in there" I get from non-spoonies (no offense yall) I get "I'm right there with you and we'll get through this TOGETHER"

I know some of yall are thinking, "but what about me?" all I can say is I truly appreciate it from the bottom of my heart but it's different when people are literally in your shoes than supporting. I know it may feel like you're going through it just as much as I am but again it's different.

But back to business! I've been having problems with my sleep schedule I'm on a completely opposite schedule than what's "normal" which has been frustrating.  Saturday I woke up at 10pm and wasn't able to sleep till 11-12pm SUNDAY. I have no idea why this happens sometimes but it most the time gets my sleep schedule on track but when I wake up I have a migraine from hell.. I woke up sunday night around 9pm?? Hung out, ate with the family, took my rescue medicine for my migraine and went back to sleep at midnight; slept off and on till 5pm today (Monday) because I'm just exhausted and have a pain med "hangover"

But since I've been up I'm managing and feeling "human" Tomorrow I meet with my pain management doctor which some of my doctors and now even me are concerned about. Apparently most pain doctor's first plan of attack is narcotics.

1. Narcotics most the time can cause constipation which I already suffer from so that will make me worst
2. There's something called Narcotic Bowel Syndrome which in a nutshell means not only does it make my stomach problems worst but also the narcotic medication doesn't help at all
3. A 20 year old on constant narcotic is just a recipe for disaster because well people get addicted to it
4. I HATE the way narcotics make me feel even though I seem to be immuned to it somewhat  Narcotics = a big no no

With that being said when I saw a pain doctor at the Mayo Clinic they gave me a steroid injection via ultrasound so we're going to be persistent saying NO to narcotics and YES to pain injection. We also are getting a referral to see my surgeon again because my dad believes I have my adhesions again which is causing my pain. So hopefully afterwards I will be back in either tolerable pain mode where I can act like I'm in no pain or be pain free! 

Last week I also saw my psychologist and was point blank that I'm going through a rougher time. She noticed that I had a dry mouth and asked about what meds are new and discover I'm taking 3 meds that can make my mouth dry and other neuro problems so she's changing my meds sorta. You see, treatment for migraines and other neuro are low dosage of depression/anxiety meds. So we're cutting out my depression med and increasing a med I was using for migraines that will now double up as migraine and depression treatment. 

Well that's all I can think of for now! Hope everyone is hanging in there!

Short Update!