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

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

Raw Emotions

So I'm trying to write more in my blog I have a ton of stuff to say like many of yall know but getting on my laptop is such a chore and energy zapper for me. This is something I just quickly wrote and posted to a spoonie Facebook group I'm in and because of it's length figured I'd make it a post here. It's super raw and honest but then again when am I not honest?

I hope it shows you something you need to see or hear. I hope sharing my story my struggles help you not feel alone and helps you feel stronger to keep fighting. Whether you're a spoonie or just going through tough crap in life.

I'm slipping... I can feel it.. just slowly getting stronger and stronger but the real me is fighting and fighting hard but my body is already doing enough without trying to fight mentally and physically...
 I had a neurostimulator put in in October we knew because of all my illnesses I'll be a slow healer but some of my wound hasn't closed fully with the incision for my battery being very sore. Had my follow up with my neurosurgeon after the holidays and I'm on a round of antibiotics hoping that'll help me heal because I might have an infection but he did mention that my incision looks like it could potentially be the start of a metal allergy....

I've been half letting my mind go there and half not, if it is an allergy I would have to get my stimulator taken out... i would have to give up the device that has allowed me to be more human.... I would have to give up all the progress I made and what's worse is I'll have to relive that horrible post op pain all over again without any benefits...

I'm forcing myself to do things, trying to make plans once a week with somebody but I'm afraid that's not enough. I'm scared out of my mind...
But then I see how much I have fought cuz let's be honest sometimes we don't realize how hard we've been fighting because this is our life and so we just live with it so that gives me hope. When I usually get self harm or suicidal thoughts I now am full of rage which my therapist says is a good thing because I'm allowing myself to feel and not just avoid, how I got there no clue.... I'm reaching out and trying to participate at my church more but it's tough for people my age we're a minority...
Today has just been a really tough day and those stupid American crime ads keep clawing at my PTSD malong everything worse... this isn't like me usually I only feel this down for 5 hours tops and then I move on but it's lingering... usually my depression makes me feel numb or I'm moody but I don't notice it or I just sleep, something other than how I feel right now... sure I've been home all day but the colors have become dull.
But I will fight, even though my body is so physically exhausted I'm not a quitter... yes I feel awful but I'm determined to make it through this. So maybe I'll be going through the motions.... but maybe those motions will turn into actions that'll help get me out of this, help me be happy again.

Moments Stolen: My Best Friend's Wedding

Photo Credit: Mrs. Welches Warriors

So this obviously isn't going to be the typical "voice" you hear in most of my post but I think it's a post that needs to be made.
It's really hard to keep friends when you're sick all the time. You go MIA randomly and people just get use to you being in and out of the hospital.
But every once in awhile someone special comes along.
I met Elizabeth at a diocese church camp when I was a freshman but it wasn't until sophomore year that we started to get close.
We would talk off and on between camp, she was one of those people who truly listened to what I said. She understood that me cancelling things wasn't me being flaky or trading in our plans for something better but that I really couldn't do anything. She was always so understanding.

And then there's my 20th birthday. We haven't talked in month but I knew she liked to country dance like me and I invited her to go out with me and another friend for my birthday. At first she couldn't go but then my friend bailed on me last minute and Elizabeth dropped her plans so she could take me out for my birthday. She made my birthday that year. It was the first time since I turned 18 that my brother and his fiance wasn't here to celebrate with me so that meant a lot to me.

So I did everything I could save my spoons for her wedding day. Unfortunately, I woke up that day feeling pretty crappy. I was heartbroken but I wasn't going to tell her I wasn't coming. It was her day and I wanted it to be perfect for her so I waited.

Two days later I sent her a text explaining everything and being the sweetheart that she is she asked how I was feeling and said it was no problem. All of this made me even more upset to miss it. I know she doesn't feel this way but I felt like I had let her down. She's been there for me but I was unable to be there for her big day.

As a spoonie, we miss a lot of  moments. Sometimes it's not that obvious as a wedding, it can be a simple lunch date with a friend, and it always hurts more when the persons /people we made plans with get upset with us thinking it was out of our own free will when it's not. We would do anything to feel normal. For some of us we don't leave our house that often so getting out the house and it not be a doctor appointment or ER visit gets us more excited as you think.

We take every precaution we can take so we can hopefully go but, we are at the beck and call of our bodies, There are and will be times that no matter what we try to do our bodies are telling us no don't go and we have to listen. Why? Because if we ignore our bodies we can pay for it big time. Honestly, we already do even if we're having a good day but when we're not and we go out anyways this can result to a long recovery (a week rather than a day or two) and even a hospital visit.

All we want is for you to understand all we also want yall to let us decide if we should or shouldn't go to something because it also hurts when people decide not to invite us when they know we're not feeling well. We know our bodies best. We know what we are capable and incapable of doing. We may be spoonies but we're still human beings. We long for social interaction and fun.

Neurostimulator Update

Yesterday, I got a letter in the mail and broke down in tears. My neurostimulator was denied. I am heart broken. It took awhile for me to calm down. I'm still processing it all but my parents are determined to get me my stimulator one way or another.

First route is to resubmit but with more info and to include every and all medical record we can. If that doesn't work, we will find a way to pay for it and if we do go that route a fundraiser page will be set up so that yall can donate if you are able to.

This is my first time dealing with this kind of situation, I'm so use to doors being slammed in my face of not having any answers for me, to be a complete mystery. But to have the door slammed when I have an answer to relief, it hurts so much. Every time I think about it, I get tears in my eyes. Stress and crying makes my body go haywire so I'm slowly paying for all my emotions. I'm drained and part of me is just getting numb to the whole situation.

 Since our whole depression med change I haven't felt myself and my psychologist thinks it's because of me waiting on this approval so now not having the approval has me very uneasy. I'm doing my best right now but this is just so much to deal with so hopefully my psychologist will have some ideas to help me cope with everything.

My devotionals have been talking about not focusing on the future but on God which fortunately has prepared me for this situation. But I'm still overwhelmed and trying to figure out how I'm going to deal with this. 

So my readers, prayer warriors, friends, family, whoever you are, this summer I am going to need more support than I thought I would. These last 8 years have been tough, I thought we were over our toughest hours/years but I was wrong. We are so close to me being able to live a more "normal" life but several obstacles have been put in our way.

I'm lost but I'm not giving up, it's just going to take some time for me to get back up and start swinging. It sucks, I'm in one of those moods where I just need to go out and have some fun but I can't. I'm stuck. I can't do the typical "YOLO"/young adult thing and party or drink away the situation right now. I can't even eat my emotions out! Right now, all I can do is cling on for dear life until the storm settles.

It really sucks, I haven't been taking my pain meds that much, not because I'm not in pain but because I was so close to not having to deal with it, I'm just at home where I'm able to lay down all day I honestly didn't understand the need to take them all the time. But now what? I'm stuck even longer with them or my injections. I don't want that, no one deserves to live like this. 

I don't know why I just put up with the pain but I know I'm not the only one. So many of us spoonies just grin and bear our symptoms, I think because we understand there's no relief and unless we're attempting to go out and do something, it's easier dealing with it than getting frustrated with our meds not helping much as it use to or spending more money we don't have.

Sorry that last little bit got a bit scattered! If you want to be up to date on everything you can go like my Facebook page HERE

Am I Allowing God's Will?

Ok so I apologize now if this post is weird, I'm currently working on this on my phone so we'll see how this goes!

Now, I know you're either thinking based on the title this is how to reflect on if you're allowing God's will to be done or you think this is a very bizarre topic for me to talk about but both are wrong.

This is a reflection I just had moments ago which is why I'm taking the risk of writing this on my phone instead of waiting until later. I will say I did take pain meds about 2 hours ago so if I make no sense, thank the meds. Lol

So why am I wondering if I'm letting God's  will be done? (This might be borderline TMI for some of yall) Well, I have been medically on birth control for several female reproductive illnesses I battle, and thanks to a youth minister I was informed the church is ok with women being on birth control if it is for medical reasons and there aren't any other options or those options didn't work out.

Anyway, I get a shot every 3 months for my birth control rather than taking a pill everyday. Unfortunately, these last 2 months my medication has stopped working and my doctor has informed me she wants me not to have a period at all which means no estrogen for me. My birth control has to be progesterone only. So after learning the differences between the two I went to all my spoonie groups and asked for suggestions. Up until one point, it was either stay on my shot or try a thing they implant to the inside of your arm. Well, with that implant there is a wide variety of responses to it. So wide, I wasn't comfortable asking my doctor about it. Everything else I was suggested would most likely be shot down by my doctor because you either still get your period or it has estrogen in it. And the only other option to stop the pain and cycle is to get my tubes tied like many women have to do because of one of these illnesses. One girl was telling me this and I told her that I will not let a doctor do so no matter how much pain I would have to do because I wanted to have have children.

But that is when a lovely lady informed me how to find progesterone only pills. Which thrilled me! I could stay on those pills or go a more semi permanent route and get the implant the pill works out. Yay! Game plan!

Later on, as I'm laying in bed I started thinking about all my dreams in life but I was also thinking about God and how I truly want to be what I feel God wants me to be. And then it hit me, am I being selfish? Apart of pursuing the vocation of marriage, you and your spouse have to be open when it comes to children. You allow God the potential to havr children. For some people, having children doesn't happen and there are differences in feelings with that news.

Everyone who knows me knows I LOVE children, I'm dubbed an aunt to many of my friend's  kiddo, I help with advice when they don't know what to do and it is known that if I'm feeling well enough I'll be a mommy helper or babysitter, and expect very little in return. I have and will always want children. In fact, it is that very reason that I stopped pursuing religious life because I felt called to bare child.

But a lot has happened since then, including my female issues getting worse. Tonight I started questioning if that was a sign from God or if this struggle is something I'm supposed to go through. Am I being selfish? That my dream and want for a child is blinding me from doing what God truly wants me to do? Or am I on the right path in refusing a procedure that wouldn't allow me to have children?

Hard stuff. And frankly, I have no clue! I'm going back and forth in my head seeing signs of both sides. I haven't dig deeper into the church's teaching on vasectomy, I plan on doing so later on so maybe when I read that it'll help me see a clearer  picture. I truly hope so because  I owe it to God, if it wasnt for him, I would be 6 feet under in all seriousness. I may not be what other catholics feel how a Catholic should be and think, but I'm being me. And since having Pope Francis, it seems as if my approach on the world and others are acceptable. The areas I'm not is to be expected though, we're human, we have to mess up/sin somewhere. It's not an excuse but the truth. One I have struggled with while I was in high school but that's another blog post.

So what's the point of all this? Purposely, nothing. This is just me talking about my life, letting yall in and helping myself out. And who knows, maybe there is a purpose! Maybe one of yall have something that will help me figure things out! Or hearing my story will help you!

I'm not saying everyone needs to rethink their dreams and change them because you think you're being selfish. Most likely, if you are of faith and probably several who aren't of faith, your dreams involve the gifts God has given you, and if you are of faith, you have opened yourself to God, you have allowed him in when it comes to what path to take. But we are human and we do mess up. When you think about it, it can be difficult to figure things out. Something bad can be something you're supposed to deal with to reach your goal or it can be the devil trying to stir you away. Same can be said about good things that happen, great things can be happening but that's the devil pulling you in or it can be God saying, "yes! You are doing the right thing and I'm proud of you." That is where prayer and developing a relationship with God comes in handy. And not just the 5 second prayer to ask for a sign, but a true and genuine prayer allowing yourself to have a conversation with God.

I think it is wise to think about your goals and dreams sometimes and question asking if you're doing God's will. But letting it consume you isn't what God wants because that will stir you away from the present which we all should be living in.

Until next time,

Aly

Being human

Lately the media has been surround by a certain specfic topic. What is it you ask? Death. But Aly, death is all around us it happens day to day. Indeed it doe,s but because of some taboo/bizarre cases it's making waves.

From ebola, ISIS, and more, it's hard not to hear something about it.

Recently things has slowly hit home for me. I live in Texas and we've been somewhat a hub for ebola crossing. The first nurse who contracted ebola in fact, went to a church camp I went to before me. Then I saw a heart breaking video about a couple who gave birth to their son who didn't survive a month because of multiple health problems. These parents on multiple occasions saw their son die and brought back to life. Each time it was harder to watch and it looked like it was harder on them as well. It reminded me of my parents but this case was far greater. It stung a little more because I have a great friend lost her baby and she was in a similar situation.

And then we have Brittany.

For those of you who may not know (or suffering from brain fog) Brittany was a California woman who was diagnosed with a terminal brain tumor. Every avenue showed her life was going to end despite what they did. So Brittany and her family moved to a state that has a "Death with Diginity" law. Brittany could take a pill that would end her suffering and life. 

This has been a very conversational topic.

For the record yes, I know the church's stand on life and death. 

I know each life is sacred. 

Yes, Christ suffered agony in a horrible way and died.

 Some religious people would find it honorable to go through something similar. 

But the truth is, not everyone is religious.

And everyone receives God/life/the universe's answer, path, what have you differently.

I'm told me out of all people I should understand the most  when expressing my point of view.

 But that's the exact point.

I am a human being, who deals with chronic pain, meds, doctor's appointments, hospital visits, surgery, treatment etc.

I am a human being who's battle mainly rest on my health.

I, as a human being go through the darkest thoughts because of this (sometimes)

Now, hold on yall don't call 911 on me, I'm perfectly safe and not suicidal. 

 The thing is people have different definition of dignity. 

For the church it's until natural death. 

For others is fighting until their last breath. 

For others it's being sedated to die in peace. 

And for others it's being able to die without pain. 

All these options, I understand.

It angers me honestly when people try to make their case. I wholeheartedly feel that no one can honestly express what they would do in that situation. Yes, this can go against people's morals but when you're in certain situations, big or small, we do things we wouldn't do. 

I keep saying how in bedded in my head seeing people I'm closest to seeing me in agony. I've seen my parents cry because they can't do anything.  I've also seen my parents in pain and it hurts just as much. It's a haunting memory thinking about my sleep deprived parents being up with me when I'm screaming in pain, or waking me up after passing out, the glazed over look of feeling so many emotions and trying to find a way to help.

And what makes that all worse is there isn't. They can pray, maybe rub my back or play with my hair, but most the time, the only true thing they can do is make me take my meds and be with me.

I understand Brittany and her desires. She was told "you're going to die this year and it's not going to be fun" and Brittany did what she felt was what she needed to do. She took life by the horns and fulfilled her bucket list. But that's the thing, this was HER decision. Her family and husband and understood that and their outpour of support for their daughter is admirable and something all loved ones, especially parents, need to take note. But that topic is for another post... 

No, this is not the answer for every terminally sick person. But any and all health decision is the patient's with consultant of their doctor. Brittany and her family sounded like wise people especially since they moved states in order to fulfill her desire. So I think it's safe to say they did their research and weighed out every option including chemotherapy. This also kinda rubs on a topic for later (all medical treatment should be between doctor and patient, changing laws and stuff all because some junkies or prescription happy doctors abuse some meds doesn't help those who truly need it and in fact, makes doctor's hesitant to prescribe these meds) Yes, this isn't a decision that can be made in a single doctor's visit. The only people who are allowed to take the med are those with terminal illnesses, so you won't see someone like me, who's in chronic pain with no risk to my life being prescribed the med.

So I now ask you, with an open mind, how would you feel if your loved ones saw you day to day getting weaker and weaker? Your body is shutting down, you feel immense pain, things happen that you don't remember and all the people who love you can do is be there. They're stuck watching until you breathe your last breath. They're there watching every breath you take and don't. Being so weak you can barely keep your eyes open. They see you crying and screaming in pain. They're there seeing all of this and more.

Having been in that situation minus the terminal side it eats me up. I know they won't abandoned me but I don't want those who love me see me like that. But then again I wouldn't want to be alone. A couple months ago I passed out so bad that I was put in in the trauma area of the ER from passing out luckily I didn't do major damage. I don't remember most of that night. I remember waking up confused and my parents in distress.  They explained what happened and what I did and I denied it because I had no memory of it.

Couple months later I was told there's something wrong with my heart. I've never been so scared in my life. (despite being told it's something minor) Through my 8 years I did wonder if I was fighting for my life but from what I saw and told I was fine so I never gave it much thought until my little heart condition was addressed. Up until my cardio visit I kept thinking "what if" to help me if I was given bad news. Luckily, I was told what I have isn't fatal.

But I'm tired of this "you should know" stuff when implying against this law. 

As a human being who faces chronic pain, yes, I DO KNOW better than most. Which makes me able to think about how people's condition can become worse. I understand not wanting my death to be traumatic to my loved ones.Who wants their loved ones last memory be were nurses and doctors surrounding you trying to bring you back to life or seizing like crazy. Me? Absolutley not. If I was giving the choice to changed that situation would I? I'm not sure. 

Being on bed rest isn't fun and I can't imagine how difficult it would be knowing that I was confined to that bed until I died. I would have wished I done more things on my bucket list. And for people in Brittany situation, being healthy but then falling sick and told you have a terminal illness, it probably would have been a regret of taking those little moments for granted. But she died the way she wanted, she left this world with her diginity. It may be morbid to some people but she died advocating something she was passionate about and felt that people in her situation as human beings and an American, should be able to decide on their own through their doctor and not through politics.  

I completely understand the religion and moral side to this. But I also understand being human in never ending pain. None of us can truly understand being personally diagnosed (not someone you know) with a terminal illness which makes us unable to understand.

Just being truthful

Okay, I know my blog has been negative recently but that's because I'm going through a difficult time. This blog's purpose is to be transparent. I am not going to act all happy go lucky when I'm not feeling that way but at the same time, I'm not going to be a trigger. I am NOT trying to get pity, I'm just showing the truth to my life. I'm showing those who are in my position (aka a spoonie) that they are not alone and for those who don't know what people with chronic illness deal with an inside look. With that, I hope to break the stigmata against people who are chronically ill.

We finally have things in place and got the ball rolling to get me "better". The couple of doctors I've already seen have given me hope. They want to help me and believe that I am truly in pain, they aren't giving up on me and want to find out what's wrong just as bad as my family do. 

But lately I've had to accept the way my life is currently. I'm 20 years old (almost 21!) and I walk with a cane. I'm 20 years old and I have a temporary handicap parking permit. I'm 20 years old and looking into getting disability money. I'm 20 years old and my body acts 60.

It's hard for a spoonie to come to terms with their needs. And from what I've noticed, it's mainly teenagers and young adults. For kids, they don't know any better, they think their braces, wheelchair, oxygen tank, etc. is normal most the time. For older folks they may be stubborn but within, they accept that they are getting old. But for teens and young adults we know this isn't normal and that our bodies shouldn't be acting like this. We also are self conscious because having an invisible illness we don't look like we need a cane, wheelchair, or oxygen tank. Sometimes we over react, people see us and just go on with their day without showing any reaction. Other times, it's like everyone is staring at us like you see in the movies for a popular kid, except we don't have wind blowing our hair and instead of in admiration its WTF. We never know what crowd we're going to get.

A couple of weeks ago I went with a friend to a movie and dinner. Before the movie no one really paid attention to me hobbling around and sometimes tripping over myself (yup I'm a klutz) but after the movie there were several groups of teenagers here and there staring at me with the WTF look. Yeah it bothered me inside, I hate any and all judgement, but it didn't make me self conscious. Honestly, I kinda felt like saying something but I ignored them and just kept on wobbling. At dinner I got treated "normal" which made me feel good. I love when people don't treat me differently. I'm still learning how to deal with a cane though, like if I'm at a counter or a table I'm still figuring out how to not let it fall. It's fold-able which makes it easier when it won't cooperate.

Another problem I face is weight gain. I've never been self conscious of my body despite everyone else being. Up until recently I've been naturally skinny, no matter how much I ate I was tiny. But in the last year, especially since summer, I've put on weight. It's so foreign for me, I've always been able to look in the mirror and say oh well. I naturally have a pudgy stomach, and if I'm wearing the wrong kind of clothing or just finished a meal I look pregnant. I even get asked how far along am I by strangers. I've always been able to laugh it off. But now, I look in the mirror and I see my stomach and stretch marks and wish I could loose weight. I've also faced having most of my clothing not fit anymore, my shorts and pants can't button and fitted t-shirts don't fit. I quickly learnt how tiny or average people can feel like an enormous whale.

Some of these issues are because of my illnesses, with any food I get bloated, and because of my medication it messes with my body too. Also, since I'm in bed and not active I can't burn off anything I eat. Getting ready for a doctor's appointment I had the other day I broke down crying because nothing fit besides my athletic shorts. My parents calmed me down but my body is confused. I'm not use to feeling like this. I know plenty of people still wished they were in my shoes. I know there are those who wish they can gain the weight I have and those who just wished they had my body.

I honestly feel selfish. With all those people who wish they were in my shoes and those who don't even have enough food to eat I'm over here uncomfortable in my body. I personally feel that if someone is taking care of their body by eating right it shouldn't matter what weight they're at or how their body looks but here I am being hypocritical wishing I could workout and loose this weight. But you know what? I'm going to continue holding my head up high. I'm not going to let how my body looks consume my thoughts. I'll repeat what everyone has told me and accept that things are ok and once I'm well enough, I can get going and most likely loose the weight easily. If not, I'll workout until my body is back to it's "normal"

The Meltdown

 "Upset" by sexfiend

This is part two of this series. Click here to read Part 1

This is where some people may draw the line, where what I'm about to say is considered "too personal." But then this blog would be pointless.  

I'll admit I tend to be emotional but never dramatic. But for the past couple of weeks I have noticed things building up and for the first time in awhile, I have not a clue what to do, I'm upset, I just want this pain to end and I want it gone now. I want to be able to go to school and work, I want to drive, I feel like I've been stuck at 15 in certain ways and it sucks. I don't want to be treated like a child or an elder, I hate it, I'm sick of my life revolving around my illnesses and it makes me mad.
And it sucks because people try to help me, but besides prayers all they can do is tell me "everything is going to be alright" etc... but right now, I don't want to hear it. Those words get so old so quick. I know people have good intentions but just because they do doesn't require me to take it that way. Surprisingly, this includes my family both biological and spoonie. No words can help. I just roll my eyes at the positivity and have everyone's thoughts and opinions dwell in my head making the subject stuck there even more. Having my spoonies saying they wouldn't be able to do what I'm going through just brought me down even more. Having my family say that they'll support me no matter what made me feel pressured somehow, I'm not quiet sure how but it did.

This is my "darkest hours" this is me, someone who is constantly told how strong she is, crumbling. And you know what? IT'S OKAY. We all go through times of trouble, we're SUPPOSED to. Even the strongest person has to stumble, and in my opinion, it's well worth it. Why? Because when you reach the light at the end of the tunnel you appreciate everything so much more. This is my time to gain new appreciation for the good in my life.

 http://blogs.guardian.co.uk/money/sick.jpg

Whenever I have serious thoughts in my head I tend to zone out real bad. I've been doing it more and more lately. My parent's have noticed this and have been talking to me. It get's really confusing. I know and have always known that my parents will do anything for me. That they know I'm 20, almost 21 so I legally make my own healthcare decisions. They help me with the facts and if asked, give their opinion. But both sides get frustrated and that can lead to heat. We're all tired of me being in pain. No one wants to see their loved one in pain nor does anyone want to be in pain.

Throughout the years I've had times when I was so emotionally upset that my parents know to just let me be. No matter how much they want to help me stop it's best they didn't. It ends much prettier when they do. Thankfully, we all learned that less while going through my teenage years (wow that makes me sound old!)  I'm honestly at a point where I have no clue what to do, I really don't. I don't want to give up but I'm so tired of fighting. I'm not an angry person especially towards others. But with this life (illnesses) I have so much hate, anger, and frustration towards it. It occasionally brings a real ugly side to me that unfortunately only my folks see and are victims of. Which makes me even more upset because I in no way intend to treat them like that especially after all they have done for me.

 http://warriorfitness.org/2012/05/16/muscle-confusion-got-ya-confused/

Recently I lost it after one of my parent's and my discussions. I went into my bathroom, started breathing heavy and just threw everything off of my counter. I stood leaning over the counter just trying to stay calm and doing my best not to cry but then I bursted into tears. I cried so hard that I just kinda crumbled onto the ground and curled up into a ball lying on the floor. Still crying my eyes out, I wanted my dog so I somehow managed to hobble over to my room, grab her, and just laid on the floor for awhile. I either passed out or fell asleep for a bit idk which. When I woke up I went into my bathroom to pick everything up. Of course, my body being the way it is was thrown for a loop by this meltdown and started shutting down, my parents were there to help me up and through it.

 "Frustration" by turnnburnkota

All of this has made me question a lot of things that once were all I wanted from life. I've always wanted a family. I LOVE kids. I just do. Luckily, none of my illnesses or medication causes infertility. But it makes me second guess everything. Do I really want to put someone through living hell? Do I want to make someone I love and care for have to carry me around? Is it worth putting all the burden on someone just so I can have a husband and kids? What if this is genetic and it passes on to them? I wouldn't wish this to anyone. So why should I have kids if there's even the SLIGHTEST chance of them having any of this? Do I want to put more stress on my family to help me and my husband raise my kids because I don't have the strength? The more I think about it, the more I'm against achieving those dreams. I don't want to drag anymore people down.

So often I just want to break down and cry. But crying just makes it all worse. It leaves you drained physically, emotionally and mentally causing your body to shut down. As much as we don't want to admit it, stress triggers many, if not all illnesses. Our bodies are still capable of having symptoms when we're not stressed or upset, but if we are, our symptoms can show up or make existing ones worse. Ever since March my passing out spells has come and gone more frequently and as you saw in my first post, frustration was building up. My approaching procedure didn't help me emotionally either. I went from being able to hang out with a couple friends to stuck in bed because of pain and exhaustion, my sleep "schedule" went out the door, and my appetite would vary mainly because of my several GI conditions. With my increased frustration there were times I wanted to give in. I wanted to cry, scream, and throw things. All I would think is how I wished I was healthy enough to go to the batting cages and release some of my anger. But my true self fought against my negativity. I can get through this, I don't need to waste my energy over something I can't control. That God gave me this battle because he KNOWS I can make it through. So now my body was at war against itself mentally and emotionally as well.

Emotional II Abstract Painting by K. Madison Moore

Thing kept tumbling down, I got new symptoms, "Great!" I thought, "more hoops to jump through. More possible test, specialists etc, I would have to deal with. " But I reassured myself that I got this. This is just my body being fussy. But within myself I was in denial. I was getting closer to breaking and like I tell my fellow spoonies, we all need time to be down in the dumps, we just gotta pick ourselves up before it's too late.  I wished I was in the movie "Click" where I could pause or fast forward anything. I was getting to a point where I just wanted it to end, I wasn't suicidal, but I wanted things to actually get better and have the pain go away.

And then it happened, the scariest moment of my life. I already had my emotional meltdown but this was my body having a meltdown from all the stress and pain. I was in the shower and like usual I had my mom close by to listen in case I fell or passed out. All I remember was stepping out the shower but what we think happened was as I was stepping out of the shower I passed out, my head hit the tub and my right hip hit the toilet. My mom tried to help me up but was unable to, she tried to get me dressed but I was in such agony it didn't workout. My dad felt uncomfortable coming in there since I was naked. I may be his child but I was his adult daughter who deserved privacy. Unfortunately, this was a time where health came before respect. They picked me up off the floor, got me dressed and laid me in bed. I was completely out of it, very lethargic and because my head hurt they were concern I had a concussion.

"I Don't Need Anything" by akirakirai

So off we went to the ER... Apparently I was in such bad shape when we arrived that they immediately put me in triage and then off into the trauma side of the ER. I was wearing a neck brace at one point and they did a work up on me which included a CT and X-ray of everywhere I was hurting. Everything came back alright.
But that wasn't the end, since  I was ok the doctor allowed me to have a shot of morphine. At this point I was out of a lethargic state but wasn't all there. I got confused, I thought I had an IV so I was wondering why they were going to give me a shot. Turns out they just drew blood and didn't put an IV in me. My response to all this was what my parent's call "the devil child" I started crying, screaming and yelling that I didn't want to. My nurse and parents tried to convince me other wise but I wasn't having it. They also tried to calm me down. It's no excuse but I think at that point I was so frustrated that I lost it again. I was tired of needles, narcotics, pain meds, nurses, and vitals. I was tired of, "Everything is normal! But we don't know what's wrong with her." I was tired of it all and at the time I wasn't me so I wasn't able to control my emotions.

During "the devil child" time I passed out several times in front of the nurse. They would wake me up but I kept going, my body had enough. I finally passed out one more time and they just let me be. I woke up later completely confused. I recalled grabbing my towel, remembered random spots of our way to the ER and that was it. I was asking a bunch of questions.
What happened?
How did we get here?
What was going on?
Why was I in a trauma room?
They explained it all, including "the devil child" moment. And for whatever reason, I was in denial, I thought that they were lying to me but I knew my parents would never do anything like that.
I was then presented another chance to have the morphine shot and I took it. Shortly after, the doctor was in to discharge us and off we went.

"Bye" by akirakirai

Since that incident I would break down crying randomly confused and scared about my procedure. Nothing my parent's said or showed helped. I was so scared. The thing that scared me was 1. I had to be awake and 2. a needle would be digging into where I hurted. All I wanted was it to get over and done with. There was much anxiety, stress, nervousness, and doubt. How was I supposed to be completely ok with this situation without the guarantee of success? My parents were concern about my emotional state but like previously discussed between each other, I was desperate for relief and willing to try anything that could potentially help even if it set my emotional or mental state for a loop. I was clinging onto hope that all this hell will be worth it in the end. That this indeed will help me become pain free

Ebola: A Spoonie's Point of View

Disclaimer: I am not a medical professional! I am simply expressing my opinion on said subject from articles I have come across. I have no opinion on if the media or medical professionals are withholding important information regarding the severity of the virus.

Ebola. 

It's a word that makes everyone cringe right now as it should. 

As someone who has a compromised immune system it's even more concerning. It's scary knowing that a virus is fatal and that we are unable to get a shot or medication to prevent us from catching and treatment is still in trial stages. So when a friend informed me that what the media is telling us isn't true I wanted this information.

There has and will always be rumors, conspiracy theories, research and studies that report otherwise to what the public is told.

I'm not saying it's something we don't need to worry about, we do need to worry but to a degree. 

There are studies that talk about airborne transfer between fruit bats, pigs, and monkey. Medically, an airborne virus means the virus is able to stay alive without liquid, this is where the gray area is and people believe this is how the media and medical professionals are "allowed" to say it is not airborne.

. A study was conducted between monkeys and pigs in 2012. All pigs and monkeys were in cages in close proximity but never had contact with one another. A pig had the virus and a monkey was able to contract the virus from the pig. Researches don't know for sure how the monkey contracted the virus., but Dr. Gary Kobinger who was involved in the study had this to say, 

"What we suspect is happening is large droplets: they can stay in the air, but not long, they don't go far," explained to BBC News. "But they can be absorbed in the airway and this is how the infection starts, and this is what we think, because we saw a lot of evidence in the lungs of the non-human primates that the virus got in that way,"

But with that being said, and what we're being told/not told by the media people need to calm down! Hospitals are taking precaution isolating those who have symptoms even if it's thought they just have a flu or haven't left the country. Boarders are taking precautions as well. We're in a 1st world country where we see doctors and have people aware of what is actively around us. We're not in a 3rd world country where the majority of the public fears doctors and has minimal amount of medical centers. We are accessible to things that can prevent the spread of the virus (gloves, mask, etc). And if a death occurs here, those handling the corpse will use gloves, mask etc.. Unlike those in Africa who come in contact with their loved one's corpse and has to bury it on their own.

Is it something to be aware of" Yes. Should precautions take place? Yes. But should we fear leaving our own home? No.  People really need to calm down, ebola has been a virus that has claimed lives since 2009 (that I was able to find). This is why the doctor and aid was in Africa. The reason we're just now finding out about this is because most likely, this is the first time someone from a 1st world country is affected by this. 

Those who have a weak immune system are honestly the only non-medical group who should be concerned.  But this isn't anything new, we always take precaution with anyone who has been around someone who is sick, cold and flu included.

Source: SCG News

The Build-Up

If you know me, or have had any interaction with me you know I am a very positive person. 

I've been told all the things a positive spoonie hears: 

"You're so strong!" 

"I really look up to you."

"I don't see how you do it." 

"It's amazing how strong your faith is."

And honestly, it's comments like those that keep me going sometimes. 

Michael Ancher, "The Sick Girl" 1882

Because the truth is, the people in my life don't see the Aly at home or in the hospital. You get to see the Aly having a good day or the Aly that is pushing herself.

Very rarely will you see at home or hospital Aly. It's not that I'm afraid, I just don't want to make a scene or make anyone uncomfortable. I don't want pity or sorrow. I don't want you to feel even worse for me. But this post isn't about that. 

This is the straightforward and blunt Aly. And the reason as always is, I want to show my spoonie family that yes, we all have those completely blinding dark days that we think we will never escape. I'm here to show those who are healthy that we spoonies honestly hide so much from yall. There's a reason why they're called invisible illnesses. But like I said earlier, this post isn't about that. This is a post about a spoonie being completely honest.

Almost a year ago I went on my journey with my amazing family to Arizona in search of answers from one of the top hospitals in the country. We got some answers and I had a pain med injection which had me pain free. Unfortunately, my body plummeted  after several months, I was back in pain which obviously was very frustrating. Thus started more doctor appointments. I got a pain management doctor where I live, Awesome! I thought, we'll just have them repeat the procedure. And so it happened. But I was still in pain, turns out there was 2 different set of nerves and that x-ray injections are different than ultrasound injections. So due to the second set of nerves that didn't receive relief I got another. My doctor then mention a procedure to burn the nerve that was causing my pain and cease it I was so excited I thought I have found my holy grail! My pain came back less than a month after so we schedule the nerve burning procedure for this coming Wednesday.

Since my pain came back things have become very difficult. The daily frustrations were my "normal" and didn't really affect me that much. However, having a procedure that I had previously that last me 6-8 months barely last me one, troubled me. I did what every human being does during tough times and started asking why. 

Why me?
Why didn't it last that long?

Why am I experiencing intense pain?
Why must I go through this and when will it end?

Credit Unknown

As time went on, my pain became stronger I went from using my cane rarely to using it every time I got up. My pain doctor prescribed me a high dose of hydrocodone and I'm stuck taking them because it's that bad. Even then, it doesn't do too much for my pain and I hate it. I don't like the high it gives me, I try to go back and forth between that and my other pain med that isn't a narcotic. Narcotics scare me. Not only is there a potential for addiction but the side effects can make my GI issues worse. My energy went down the drain. I would sleep through weekends only getting up to eat, drink, and go to the bathroom. 

I HATE this but I keep myself preoccupied so I don't think about it. Needing someone to help you walk around sucks. Not being able to just get out the house with just anyone sucks. EVERYTHING ABOUT HOMEBOUND SUCKS! This isn't the life you're supposed to have in your twenties. You're supposed to struggle surviving school and finding the balance between working enough hours to pay bills but while still having time to study. You're not supposed to struggle getting to point A to point B or questioning if it's really worth getting out of bed when no one is home just in case you pass out. Although not having to deal with the now 100 degree weather is great and probably the only good thing in this situation.

I thought hanging in there till my procedure would be a manageable. It was at first, because all I did was sleep. But recently it has become increasingly difficult. When I had my appointment to set up the procedure I was in so much pain, my dad was with me in the room because I was crying my eyes out. My doctor was explaiing the procedure but I was unable to think so any questions I had didn't get answered. And either dad was okay with it or felt it was not his place to ask questions. So I reached out to my spoonie community, did research online and learned what I was getting myself into. I was already scared, just the injection procedure hurt so much more compared to how it was at Mayo. I was traumatized by my injections and now I'm expected to go through that again but also have it a little more invasive.

I couldn't find many people who have had this procedure so I was in the dark. But the few I talked to and the ones I found on message boards didn't help at all. All I saw were people who backed out or said the procedure was living hell and at most, had relief for almost a year. I was told that this would give me 1-3 years of relief and the way my doctor explained the procedure was totally different. (But I was looking up the same procedure.) My intent was to find information to help me calm down, not to make me worse.

I'm already scared and nervous at the fact that I have to be awake for the procedure. Sure, I'm sedated and they slightly numb  but no one willingly just allows a needle to be jabbed where they are having pain. My doctor told me I would have to help him find where it hurt the most. I would be less upset if I was guaranteed results but I am not. I'm apparently crazy/desperate enough to let them do it anyways. Frankly, I'm scared shitless, I can't sleep... I just... I can't... I just want to get this over and done with because being stuck here waiting is so intense. My pain is already bad enough but the added, I guess, emotional and mental pain is overwhelming. But of course, my health isn't the only thing I have to deal. There are many things in my personal life going on as well and it's not all rainbows and flowers.

I commented on a fellow spoonie post. The topic was that people think cancer is the "worse" chronic illness out there. But all spoonies know no illness is greater or lesser than another. A lot of "normal" or as I like to call it, healthy people tend to ask if my illnesses are life threatening and when I say they're not they try to be positive and say, "well that's good!" Sorry to disappoint you but it's not. To me they're equal. Obviously having your life at risk is huge but so is your life completely changing and never returning back to "normal." Not having your life at risk pretty much means living hell for the rest of your life. And honestly, if any of my illnesses were life threatening it would make saying yes to every procedure, surgery, medication etc so much easier I feel. Knowing my numbered days are coming quick I'd do anything to stay fighting and have a good day to simply enjoy everything. But this isn't fact because the only way we can know for sure is when we're in those shoes and thankfully I'm not.

Having a non-life threatening illness that you know causes pain for the rest of your life makes you question the things to "help" with pain. Part of me feels like what's the point. What's the point if I'm going to put my body through more trauma for a possibility of it helping me? What's the point if it does help but doesn't last that long? Is it worth trying whatever new thing that's out there? Or something that is questionable? What's the point of wasting so many people's time, energy and my parent's money on something temporary and not long term? I sometimes wonder if I should just stay at home. But that's not fair to my parents. They deserve for me to out of their house and paying for all of my medicines, doctors, etc..

You face a lot of questions being chronically ill. You just have to learn to let yourself feel the proper amount. Life isn't made to be sunshine and daisies everyday, we are made to struggle. But it doesn't mean we should just waddle in self pity forever. There is a time and place for everything. You fall, let your body/mind figure out what's going on and then you pick yourself back up doing whatever needs to be done and move on.

This is part one of a two part series. Click here to read Part 2

The Harsh Truth

So, I decided to start using my blog to be the bridge between spoonies and healthy people recently, and honestly, I had no clue what I've gotten myself into! But I ask all of yall to bare with me. Like I've said in my other post, my blog deals with what I see in my life. It could be completely different for you and in some cases, I hope so. This is not made to attack others but merely open the eyes of one another. It's the bridge between healthy people and spoonies. Neither is greater nor lesser, each side has things they do right and wrong from my perspective. I do use other spoonies input and plan on using healthy people's in future post as well. And unfortunately when it comes to spoonies there's a lot of misunderstanding and isolation.

Photo Credit: Unknown (Pinterest)

So sit tight and hear me out, hopefully this helps to better understand each other and ourselves. Which will then allow us to become more aware of how our actions are received and also how we can help each other .
In this article "We" = spoonies, "You" = healthy people

I was writing what was going to be my focus article for this month which was going to be about how to talk to a spoonie. But then I realized, there's really no correct or incorrect way because there is always the other side of the coin and when it comes down to it, if someone is genuinely trying to make conversation/friendship that makes us happy.

When it comes to spoonies we say so many things such as:

"My illness(es) doesn't defy me"
"I'm not a warrior I'm just dealing with what I was given"

"Don't assume, ask me"

"Don't ask me how I feel"

"We're still the same person"

Now this is where my spoonies need to hang in there. Because this is where I'll probably lose you.

The thing is our illness DOES defy us. Majority of the time we have to change the way we live our life so that we can still be alive. One day we were perfectly fine and the next we're confined by our bodies to bed. All the old trophies from cheerleading, softball, basketball, academics, etc. prove that our life isn't what it use to be and that's okay. But our illness(es) has affected us which then influence how we may act, speak, or think, therefore defies us. For example: I have mainly GI (digestive) issues. People ask if it affects how I eat. It doesn't feel like it has because I've become accustomed to the restrictions my stomach has, I dont even need to think twice before ordering food. That was a different story when I first started to have symptoms.

Photo credit goes to: Scarlett in Disguse

And when it comes to strength, we are a warrior/strong person. We could have just said nope, not doing this anymore and become negative all the time or God forbid, kill ourselves. But did we? No, we're still alive and kicking, we may get knocked down but we get back up. That was still a choice we made. Yes it's not like playing Call of Duty where we have a weapons and attack the bad guys. But there's a big difference between being stuck in bed because we don't feel good and just staying in bed because we give up.
You, my fellow spoonie, may feel weak and others may treat you as such but that's far from true. The fact that you're still here shows you're the strongest kind out there. Our bodies not only does basic functions but a combo of either attacking itself and/or trying to heal itself. Sure it may look like the person who is up and going, always busy and so much more is stronger than us, but the fact that our body still functions despite all the crap it's going through shows strength.

We so often tell others not to judge us but we ALSO judge them. We assume we're a bother if we text, call, message someone or that they're busy. We assume that they don't want to talk to us. We assume that their life is so awesome just cuz they're not stuck at home or in a hospital when they could be going through a different kind of living hell. After all, my spoonies, just like our invisible illness(es), we can hide our emotional pain, and so can healthy people, they are fighting a battle of their own too. So spoonies, I ask you to keep this in our foggy brains and time to time realize when we do make assumption. 

Photo credit: Unknown (thanks Pinterest)

When I asked for other spoonies input "Don't ask me how I feel" was said a lot. I get it, it's such a complicated answer but, if someone decided to talk to us out of the blue, asking how we feel is the EASIEST way to get a conversation started. So let's give them some credit, at least they're making an effort. Besides, just cuz they asked how are we feeling doesn't me we HAVE to tell them the truth or go in detail. We can say we're "hanging in there" or "could be better" and if we want to be honest, we can even say "I feel decent today" or "I feel like death." We don't have to focus on how we feel physically even, you can express how you feel emotionally. They mean well when they ask how we're feeling and most the time they're concern for us.(But all you healthy folks let's maybe go for a "how are you doing?")

And kinda relating to my first point, when we stress that "we're still the same person" sorry yall, we're not. Yes, you still have the same passions, likes and dislikes you've always had and always will but, throughout the years you became that strong warrior we also talked about earlier. In your healthy life you were an athlete, musician, or AP student but for the majority of us because of the pain, meds, and so much more we normally end up "retiring" We pick up new hobbies, like, and dislikes being stuck in bed or at the house.

One time I was hospitalized I met this girl who survived a traumatic accident, her parents were told when they arrived to the hospital that she wasn't going to live. She ended up surviving and is alive to this day. But something happened, her personality changed.
Sure, in her case it could have been all the trauma to her body, but with us, it was all those needles, nurses, medicines, and hospital stay. It was those long nights in agonizing pain wondering if we'll survive tomorrow and when will we get a diagnosis. It was those asshole doctors who thought we we're just mental and wanted drugs or attention. We had to deal with that and so much more. You may not notice the difference but the people around you did. Now, this change could have been minor or it could have been major, but just like everything else, the "side effect" varies person to person.

Personally, I've become more bluntly honest. I am more sharp and have lost some patience. It's not like I wanted to, it just kind of happened. 

So what about healthy people? Where are you in this web of multiple sides?
Well for starters, when we run into you and you say things like, "I miss you! We should hang out sometime!" and then you never make the effort.. that hurts. Especially when we're first going through all this or if you're a person who we had a close relationship with. And I know, you say that to everyone so we shouldn't be butt hurt but we already feel isolated and unwanted. So when someone says something like that we perk up like a dog being asked if they want to play outside.

And when you tell us that your friend's other best friend's mother has our illness assumptions are made and advice is given. Sure you're trying to help out and suggest things, but that's like us saying that test you're cramming for our brother's roommate took and when he studied for his test  he was upside down and aced it. We so often get unwanted input and for the most part, let it in one ear and out the other but when it happens to you it becomes a problem. Different people respond to different situations, including body wise which includes symptoms and treatment. So maybe instead of right off the bat giving us advice let us know that you know someone with our condition and let us decide if we want your or their input.

Something else that is high on the list, "I'm here for you if you need me" what makes it even worst, "It doesn't matter what time of day you call/text/message me!"
Again, this is something people throw around when they're trying to be helpful. The truth is, the time we need someone tends to be whenever it's dark out or right in the middle of the day. So you honestly have to think before you say something like this. How busy is your life really? Are you a deep sleeper or light sleeper? Are you just saying this because you don't know what to say?
Answering these questions can help you truly figure out if you can "live up" to what you say. And don't feel bad if you can't honestly say that. We spoonies understand that yall have crazy lives and we're okay with that. If you're just saying that because you have no idea what to say tell us! One thing spoonies crave is truth and honesty. We realize most people have never been in our situation so we don't expect you to be a pro at this.

Photo credit: Unknown (Pinterest)

Healthy people also claim to understand what we're going through. But we're not going to go in detail of that right now. Right now, we're focusing on hypocrisy and in this case, it happens when we're an inconvenience. We do our whole "hanging out speech" to you about our pain and energy levels, you respond by saying you understand. But if we bail last minute or even in advance you look down on us. Sometimes you get mad and complain how much of an inconvenience it is for you. We're not in control of how our bodies behave. Trust us, if we could we would. We hate having to cancel plans, we want a life outside of medical buildings and our house!

Kind of relating to that last point, when we do push through whatever plans we have, you tell us "do what you need to do" and when we take that step, we get the same reaction as if we cancelled plans. Frankly, it's already embarrassing enough having people stare at us for freezing right  in the middle of a crowd as we turning paler than a ghost. But if you're acting like you don't know us, freak out excessively, etc. It doesn't help the situation. No, we don't expect you to be as cool as a cucumber but freaking out like we're holding a grenade doesn't help us at all. (hahah yes! That was a "The Fault in Our Stars" reference.) We get it, you're frustrated, so are we, and in the moment, it's hard for both sides to control our feelings. But maybe now that you're aware we can help each other through this situation.

So that's all I have for right now. What do yall think? Is there a situation I missed? I really want yalls feedback! I truly hope this post helps both sides see the errors in our way. I for one did and will strive to overcome that. Again, this post isn't made to point the finger at one side or another, it's made to help make relationships better between healthy people and spoonies.
Also, if you have any advice regarding my blog or writing please feel free to tell me! I'm currently diving in on how to make my blog successful and user friendly. If you have any suggestions on what I should do, topics I should cover, anything please let me know!

Till next time,

Aly