Thursday, September 7, 2017

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

Thursday, March 2, 2017

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

Thursday, January 19, 2017

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!

Saturday, February 20, 2016

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

Sunday, January 24, 2016

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

Monday, January 11, 2016

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.

Tuesday, August 18, 2015

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.