Oh hey you're here!

So I'm restless and got some stuff on my mind so if you're here, I guess you're gonna listen!
2 basketball teams stayed at out hotel for a tournament that happened starting Wednesday, when they left they gave us a godr card and a lady wrote us a card and had "beauty from ashes" within it. And my mind has been stuck on it since.
Which I guess is very true sure we got dust and ashes currently but at the end of these several months we'll have a "new" house but you have the restlessness of new environment (for everyone including dog) new schedule, figuring out your "space" etc. We're definitely roughing it but we had a slightly beautiful moment last night all of us squished in one bed finishing up a movie my dad put on.
But it's like yeah life happens, it gets rough, soot and smoke get on EVERYTHING but if you have a good foundation, which includes being able to laugh with those people life becomes a little more easier.
Oh and insurance with restoration deal or whatever is going on in that realm is AMAZING just having then to pack up the house itself has been a huge stress relief on all of us I feel.
I love you all and look for links on how to help on our socials
Aly

Depression is a B*tch

Depression is a b*tch
When she rears her head it's unexpected
She whispers in your mind but then,
becomes a loud scream

Depression is a b*tch
She traps you in your bed and confuses you
Is this self care or self loathe?
Am I taking care of myself or babying this wound?

Depression is a b*tch
She makes me feel worthless
Makes me feel unwanted and lonely

Depression is a b*tch
I don't know what to do
Yes! help me but I have no clue how, I'm drowning

Depression is a b*tch
I want to cry and scream
I'm so angry and want to throw things and yet
I'm numb

Depression is a b*tch
Please, someone show me the way I'm so lost in here
Can you hear me?

Depression is a b*tch
No! She won't let me
She covers my mouth so I can't make a sound

Depression is a b*tch
My mind is racing
And yet, there's nothing

Depression is a b*tch
I feel like all eyes are on me
But let's be honest, no one is even looking
They probably don't even care

Depression is a b*tch
She makes me doubt everything
Me, you and what everyone else thinks

Depression is a b*tch
She changes me into someone I don't recongize
She has me trapped, where am I? I can't get out

Depression is a b*tch

Hear Me, Hear Us

My heartaches today... In so many of my different Facebook groups it has been post after post of friends, parents, other family members and even doctors not listening to my fellow chronic illness warriors. Their symptoms get dismissed. They're put and kept on medication that doesn't help. They're told they're taking their symptoms for drugs or attention. When that's not true.
We're given up on, jobs are loss, relationships abandoned all for things we are in no control of. We hate this helpless feeling of being a "waste" which btw we're not but you can't help but feel that way sometimes. Insurance, hospitals, doctors, hell, even our own government fails us. We are sometimes just left to asking our community "what can we do?" And hope someone suggest something we haven't tried yet in hopes it might work. Because just like the severity and symptoms of our illness differ, so does our body's response to different treatment options.
Did you know caffeine can both treat AND be a trigger for a migraine depending on the person? So there is no universal way to treat a migraine. Because of this there are meds with and without caffeine in it.
And often times with chronic illnesses doctors don't know too much because everything is underfunded. What's a doctor to do with a disease that has no cure? It's honestly easier for us as patients to do the research than our doctors because we are not our doctor's office ly patient. They only know things through textbook which, Ooo lucky us, we somehow defy. Lovely isn't it?
Now don't get me wrong there are some truly lucky chronic illness warriors out there who are able to live a functional life and I'm so happy for them being constantly miserable is no fun at all. But for many of us we didn't catch that unicorn. They are in the spot we strive, hope, and pray to all be in someday soon. But for some of us the struggle is unremarkably real. So whoever you are reading this, remember that. And remember that our pain and symptoms are real. All we want is to be believed in.

Being chronically ill and new doctors

You would think being chronically ill we would be masters at doctor appointments but truthfully, we're not. A lot of us get really anxious especially when we see a new doctor.
When you're chronically ill you deal with I guess you can call it verbal abuse by medical professionals. We're told we have a low pain tolerance, it's in our heads etc when our symptoms are very real. We are not seeking out attention we are just seeking help to get back to a "normal" life.

So here I am getting settled in bed trying to calm my nerves about seeing my new GI doctor. Here I am hoping for the best preparing for the worst. Am I going to get relief from symptoms? Is she (my doctor) going to believe my medical history, symptoms, diagnosis etc? Will there be happy tears or will I be stabbed in the back by another health care professional?

In the Spoonie/chronic illness community it is common for people to have PTSD from medical professionals which in itself is sad. So many of us already deal with our peers, school and/or boss to believe in our illness but on top of invasive test the way some medical professionals treat us makes you unsurprised that there is trauma
.
So how do we handle it? Honestly I have no clue. I just make sure I have my anxiety pills and I'm blest to have my dad come with me to all appointments cuz hes the only one in our family that drives. He's also really good at calming me down so there's that. You stay as busy as you can in the waiting room and pray to God they aren't behind, but when they call you back and you're put in your room I swear time stands still. Minutes go by but you've already gone through your Facebook twice. Your phone battery is trickling down... finally your doctor shows up and you get to talk about your lengthy medical history and you can sometimes see their own heads explode or be completely clueless as you name some of your rare illness. An especially scary sign if they specialize in the part your illness is apart of.

Hopefully by the end of your appointment your doctor is able to help you some and give you things to try that you haven't yet or they order test to find out what's wrong and give you a diagnosis.

Being afraid of new things, even something as simple as a doctor appointment, is nothing to be ashamed of. Spoonie or not. And you deserve a pat on the back each time you do something that's scary. So give yourself a high-five if you go to that specialist you've been needing to see. Get yourself some ice cream after that blood draw (did they really need that many tubes??) After that procedure or surgery get that movie or video game you've been eyeing especially if you have recovery time. You deserve it because not only are you facing your fears or doing something difficult, you're also taking care of yourself

Love and spoons,
Aly

My day to day life

Ugh! I hate how I have neglected my blog so much! I have a review I need to get done for a company but the saga of difficulties continue for my life.
I'm dealing with one of my "I can't sleep but I have some energy" moments so I decided to write a post!
Recently things have happened in my life that has shown me how unaware people are about my life as a spoonie (someone with a chronic illness) just some ignorant comments on Facebook, which there is nothing wrong with ignorance I am happy to expand your mind and hope you can expand mine! Rare diseases day was within this last week, the typical awkwardness of a Catholic during lent and March being endometriosis awareness month (one of the illnesses I battle).
Of course just like most of yall things change at times, different cycles come through and yeah...
Waking up- so currently I wake up anywhere from 12pm- 3pm I take Chimmey out, I use the ladies room, if my parents are home and awake go say hi, go into the kitchen and try to find something to eat but lately I've been so nausea that I usually just grab a drink and hobble back to bed. I scroll through my Facebook, turn on my tv or netflix and just chill, I take pain meds if I need to but because I'm in bed I try not to take anything since they can make my GI symptoms worse. Not moving does a lot for pain relief even though my normal pain level is a 7-8.
I usually fall asleep and I'll wake up at 5 or 9, wide range I know, I'll get in "awake mode" and go in our living or stay in my bed and go back to Facebook and watching something until my dad gets home 10:30 or later and we eat and hang out and hopefully, I don't pass out.
When I just can't stand sitting up anymore usually 2pm lately, I go to bed, fumble around Facebook more, more tv/netflix, bug my dad by texting him, and pray I don't pass out if I have to get up throughout the night.

On "errand days" which are typically Sundays and Tuesdays because it's my dad's day off we usually have at least one doctor appointment and whatever errands I can put up with. When we come home from those days I take a good 3-4 hour nap!
On days I have to make business hours stuff I hope and pray I wake up and feel alert at a decent time but most the time it's like 4 and when they return my call the next day I don't even hear my phone because I'm out cold.

Awesome life huh? This is my reality with multiple dehabilitating chronic illnesses. I'm not doing this for pity but to share awareness about my life and the life of many others who are afraid to do so because of the way people react.

But I am also doing this for me, my mental health has taken a major toll and I could use some people to hang out with. And by hang out just going to your place is perfecting fine with me but if we do go somewhere guess what, I get premier aka handicap parking so yeah, one upside to hanging out with me. So contact me let's get reacquainted with each other and do something some day!
And please, reach out to a fellow spoonie in your life, genuinely check on them and offer some SPECIFIC help! Like doing their laundry, getting them some snacks/food, picking up groceries, picking the kids up. When you say "let me knowif you need anything" we don't know what's reasonable for you. We don't want to ask for too much.


Anyways thanks for listening to me ramble! Wishing you all love and spoons!
Aly

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