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 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

Chasing Life: A Spoonie's Review

So as I said before, spoonies are slowly getting more exposure in the spotlight! With books being turned into movies and tv shows it seems like it's a new trend for viewers to watch medical shows from the patient's view.  ABC Family just premiered their new show called "Chasing Life" 

Can I just say how much I love this picture? It's so true!

If you don't know what the show is about here's what the show's website says:
"Chasing Life follows twenty-something April a smart and quick-witted aspiring journalist, who is trying to work her way up the ladder at a Boston newspaper by trying to impress her hard-nosed editor. When not pursuing the latest scoop, April tries to balance her ambitious career with her family – her widowed mom Sara, rebellious little sister Brenna and her grandmother. Just as things start to look up at work, home and on the romance front with co-worker Dominic, April gets the devastating news from an estranged uncle that she has cancer."

The first episode does a lot of backstory so if you're wanting to see the whole medical side ASAP sorry, you're not going to see much yet. For the most part, Chasing Life is pretty accurate medically. Before becoming spoonies our life was "normal" at some point. We had our crazy family, a drive to follow our dreams, trying to excel at our job (or school), waiting for "the one" and having our crew or best friends to keep up with.

But then, all the sudden, our life comes to a screeching hault. Be it all the sudden getting sick, having an annual check up, or the bizarre incident April has at a blood drive. Life stands still when our body changes and/or getting a life altering diagnosis. In some situations such as April's, everything is FINALLY coming together, we're in the middle of living life. You think nothing can stop you, that everything is finally is in place, life quickly laughs at you and says, "here you go!"

And our reaction to all this? Obviously different people have different reactions, but overall we go through similar steps and the show does great at that. We deny what is happening at first, thinking if we ignore it everything is going to be okay. Then, something happens to where you have to accept that something is going on with our body. This is where you either feel the need to tell those close to you, both so they know and help you, or keep it to yourself, put your brave face and keep on keeping on. April (like many of us) goes back and forth between the two. A mixture of not finding the right time and not wanting to be a buzzkill to those she cares about.

But hey, it's a TV show, they gotta add some drama! Trust me spoonie life isn't that great. You're mainly back and forth between hospitals, doctor visits, and treatments. You don't get out much because you don't have the energy and as much as everyone thinks how awesome it would be to be stuck at home all day you're wrong. Remember summer vacation when you were little? It sounded great but by the 2nd week you're bored to death? Well, it's like that. So April's estranged uncle becomes her doctor, her home and personal life become quiet interesting.

Anyways, like I said, the show is pretty accurate when it comes to her medical journey. By the end of the episode she accepts that she has cancer and is ready to fight. And fight she will! She becomes determined to give it all she has but she has no idea what the road is like in front of her.

Now, I obviously don't know how the show is going to be but it looks very promising. The previews they showed before the show aired made it look really good and the first episode didn't disaapoint.

Have any of y'all seen the show? What do y'all think? Let me know! 

Until next time,
Aly

Staying Honest

It's been awhile since I've posted on here so to remind everyone (or to tell those new here) I remain honest on my blog. I don't tame what I say, I keep it real. I talk about how I'm feeling physically and emotionally. I don't do this to make you feel bad for me. I don't do this because I want attention. I do this for the other people who look at my blog thinking they're alone on their journey.

This is the longest time in awhile I haven't felt good in awhile. Normally I would go through a flare for a couple of weeks maybe a month. I am going on 5 months now. If you know me personally you know I am generally a real positive person. You can tell me we're all dying tomorrow and I would think well at least we have one more day. But these last couple of weeks have been tough. This week I was actually starting to feel good. It made me so excited and happy. But you know how life is.... I guess it truly started when I woke up at 5pm today. I slept almost 12 hours... didn't think much of it at the time. I was a little frustrated but not much.

I went to our churches fish fry and shortly after finishing eating I started to have an upset stomach I thought no biggie I just need to relax and it will go away. So my dad went to get the car and took us home. I rested and started to feel better.

Around midnight I got drank some water and shortly after had to run to the bathroom to throw up. I ended up throwing up alot. I was walking back to our living and I passed out. When my dad woke me up I felt super weak, my dad had to help me A LOT to get me up. I also felt very weird, I sill cant describe it exactly I just felt... weird...

My dad took me to bed and I laid there for awhile and everything slowly went away except the weirdness. I still feel it but  not as intense as earlier. What's also weird is I feel very out of it and exhausted but my body is and looks wide awake (even though I look like death) 

Emotionally, I'm drained...I'm numb...I'm frustrated... I'm stressed... I'm overwhelmed... I sometimes feel like scream, crying and throwing things on the ground. I'm tired.... Sometimes when I can't sleep because of the pain my mind wanders... it goes off and thinks how my life would be if I didn't have to deal with all of this... The education I would have received, the achievements in sports and music I would have accomplished, the friendships I would have made, and then to where I would be right this moment. 

I think about how 50 jumping jacks feels like running 1 1/2 miles.... how playing half of a song feels like I've played for 4 hours... or going to the store to grab a couple things feels like I've been doing errands all day...

I know the people who know me is thinking this isn't the Aly we know. And you maybe right, but we all go through "dark times" I feel this is my time. I know yall think I'm open and honest but truth is sometimes I hide things. I hide how much I hurt because I see how people act if I barely limp in pain or have to hold on to someone or seeing me in a wheelchair. I distract myself and focus on others to avoid revealing how emotionally torn down I am dealing with everything. I had the physical and emotional pain because I see the pain in those I care and love the most and yes in my more naive years I hid it so I won't loose them either. 

Strong people fall, happy people aren't always happy because we're human. If you've ever come to me when you're not feeling a positive mood you know I always say this; We're human we are meant to be imperfect. We're meant to feel both positive and negative feelings. We go through dark times so we can appreciate the good ones even better. That going through rough times make you stronger. so these last couple of weeks I have let myself feel these negative feelings to a degree. Because of all the weight of dealing with everything when I first fell I'll I got really depressed. I would have suicidal thoughts and stuff but never acted on it. So now if I ever get down I make sure I don't get to that point. 

The lesson life has been teaching me recently is to take care of myself. That what I consider being selfish isn't selfish it's my humanness and I need to take care of myself. SO this is me taking care of myself. This is me letting myself go through my emotions. This is me realizing I'm weak and that the only person I should be helping right now is myself. No this won't be an everyday pity party for me... I'm just catching my breath before I pick myself up, dust off, and move on