The Days in the Life of a Young Celiac

Uncommitted to blogging, committed to getting my life back.

I just got so tired of being the sick girl. The sad eyes, the pity oh my god that’s terrible‘s, the inappropriate comments about my body- it all just made me more increasingly angry. But before I had begun to get angry, I had somehow let the sickness consume me.

I was so anxious and frustrated with my life. Being alive in this constant unhealthy state was stressing me out so much that I was having heart palpitations. I was desperately reaching out to both of my therapists just pleading for any kind of coping mechanisms. This anxiety went on for months. I was taking half a benadryl a day to just calm my body down from the overdrive I was stuck in constantly. With a combination of 3-4 coping mechanisms, I could at least get my heart beat to regulate but couldn’t shake the anxiety. So how did I fix it?

There wasn’t an easy fix. All of my secret addictions, unhealthy behaviors, and lack of effort in my therapies was getting pent up inside. I just woke up one day and realized that my choices were only exacerbating my already unsolved health issues- so I quit everything. I finally saw that I was doing myself a consistent disservice by not addressing what was right in front of me the whole time. Stopping these unhealthy behaviors and secret addictions were the final puzzle piece to taming the nausea and giving my body what it needed to heal more than it ever had before.

After a couple of weeks I started to gain weight. I had an appetite again. I felt like for the first time maybe there was another side of this. Now 3 years later I finally feel like I’ve figured out the exact recipe to manage my celiac disease. This was the effect of getting fed up and so angry with being the sick girl. I was determined to find out everything I could for myself.

It made me realize that healing and/or the lack thereof is SO different for every one of us. That the research and knowledge that we’ve been fed is so miniscule. That the more time researchers spend actually looking at it, the more they see that the gluten free diet is not as effective as they’ve believed before. Through my own research of reading an unreal amount of studies I finally felt like I found answers for why I wasn’t getting better. 40% of us don’t regrow our villi like they first thought, and our healing stays stagnant compared to the other 60%. (You can find a lot of these studies at beyongceliac.org)

It was a relief to find studies that addressed the questions I kept asking. I felt like I had just gotten permission to feel like shit still. Like I hadn’t been allowed to from the moment I was diagnosed and now these researchers were proving I wasn’t crazy. All of my doctors made celiacs seem so simple and yet I would go home and feel like it was too complex for anyone to figure out. Cause it is complex and that’s okay.

I was able to go back to work. I felt like I was actually contributing to my life with my boyfriend, to my family, and to society again. I had felt like such a burden when I was sick as much as I shouldn’t have. Working, as much as I do hate it, gave me a purpose outside of myself. It just ended up being the perfect timing as inflation shot up and my bills were barely being covered before on my boyfriends paycheck. Now my bills are barely being covered on both of our paychecks. It’s not a small amount of extra money that I bring home every two weeks now, yet my diet and bills have increased so much it all just disappears.

Going through these ups and downs has felt like tsunamis for me. Losing my feeling of purpose almost as fast as I found it feels so disheartening. Living in a world where daily more and more becomes unreachable for my future. Always putting ourselves last. Gone are the days of putting my body first, as I still have weeks where I feel terrible and have no appetite, but there is no one to cover me if I was to call out so I don’t. I don’t think I will ever get fully better, but accepting it helps me move forward. As the unknown of what’s to come in every facet of our lives right now is terrifying. It feels like I am hurtling into a future that’s never felt so unsure.

And yet I will still hope for tomorrow.

Over a Year Later

They say consistency is key right? Well I guess not for me since it has been a year since I posted an update.

A year later, honestly not much has changed. I fought with so many doctors, specialists, and my body for the last year. I ended up seeing all the doctors I possibly could to deal with each problem to no avail.

The GI specialist and the rheumatologist I ended up seeing brought more disappointment than answers. I feel like I have run a medical marathon. I’ve had overall 12 vials of blood drawn, an MRI, 1 colonoscopy, 2 upper endoscopies, an unreal number of (thankfully) negative pregnancy tests, and a lot of emotional damages from all of this. Still, the stomach pain and nausea will not subside. Over the last year and a half, the only thing I have figured out is: your body will let you know when things have come to a head.

I started this journey in January of 2019. I had just graduated high school a semester early and was ready to take on “real life”. I moved out of my parents house and in with my long-term boyfriend into our first apartment. Then I started working full time for my family’s store and all was well. One day my left hip started hurting. I thought I had picked up a box that was too heavy or pivoted wrong. The pain became more and more excruciating as time went on. I went and saw chiropractors, acupuncturists, and massage therapists. Nothing alleviated my pain. I continued to feel this hip pain for a few months and then the vomiting started. Every single morning. I thought I was pregnant. I really did. But test after test proved my intuitions right- that something much more was wrong. My body wasn’t changing. I felt overall the same other than the vomiting and hip pain. So what was going on?

I had to fight and trudge my way through the healthcare system that we have. I had to advocate for myself over and over and over again. No one listens. No one cares what you have to say when you are a young woman with intestinal issues. No matter what I said, they kept throwing pregnancy in my face as an answer. When I negated that, medication after medication that was making me feel worse. Finally when my boobs started leaking as a side effect of one of the medications, I fought them and wouldn’t settle for any more meds. That’s finally when I got the Upper Endoscopy. Diagnosis. Solution. That should have been it right? I wish.

I’ve done everything right. I talked to a nutritionist, she reassured me I was doing everything right. And yet my stomach tells me it is still somehow all wrong. I’ve thrown out everything, replaced my cookware, sanitized, bleached, all of the tips I’ve read about I have done. I don’t even know where to go next. Everything comes back the same. “You have Celiac Disease, but you already know that.” How do you go to other doctors with such clear results and ask for them to magically make it come up as something else?

The last doctors visit I had was in late November of 2020. It was a follow up with my personal doctor. She asked me if her medical student could join the appointment. I always say yes cause I love to help people learn and maybe very fresh eyes could help me. 20 minutes later, I’m being told I have fibromyalgia. 20 minutes to decide that after over a year of absolutely nothing pointing that direction? I don’t normally discredit anything a medical professional says to me because I’m not the one with the doctorate or experience. But in this moment I had to keep myself from laughing at my doctor. I felt it in my entire heart and soul, that intuition again. No. Nope. Nuh-uh. This isn’t it. This isn’t what it is. Not because I didn’t want it to be. I want answers more than anything else in this world. I could just tell it was a hail mary pass to no one in the end-zone. They didn’t know. That is what that “diagnosis” said to me. They didn’t know what else to do for me other than a huge shot in the dark. All they did know is that they wanted me to start taking an antidepressant that is shown to help combat fibromyalgia symptoms. I just knew deep down through all of my pain, none of what they were telling me seemed right. Now this could be a stretch of my own mind, but to me it felt like the start of the journey all over again. It felt like I was just the young girl who was “pregnant” and it couldn’t be anything else. Now it felt like I was the young girl who was depressed and overstating my pain for attention. So I told them no. I would maybe consider their answer and let them know. I hope they know now, over 7 months later that my answer is still the same.

So with that out of the way, let’s get to the hip pain.

Emotional trauma is an absolute beast. It will tear you apart from the inside out. Remember what I said about your body letting you know when something isn’t right? Well here’s how I know. January 2019 was supposed to be a sign to slow down, take a minute to see what I was holding onto as I moved into the next stage of life. One day in therapy I just broke. I was pissed at all of this pain and torture coming from my own body. I needed anything to help me. That is when I was introduced to EMDR. The acronym for eye movement desensitization and reprocessing. I had a lot of trauma I needed to reprocess. I may be young, but I’ve dealt with a lot. I know we say that a lot, but truly I mean it. I had family emotional trauma, sexual assault trauma, and a lot more that we definitely don’t need to get into today. So in EMDR therapy, I unlocked a lot of my demons and with that unlocking, came pain relief. My hip pain was a lockbox of emotional trauma and PTSD I didn’t know I was holding still. I didn’t believe it at first. There’s no way that therapy could end a year long pain…right? Oh but it can and it did. After 6 weeks of EMDR, my hip pain was virtually nonexistent. Some days even now I feel like I imagined the whole year it hurt so bad.

So that’s been my year. A year of slow moving things. Luckily at least one of my two problems were solved. I can deal with the nausea and feeling like shit everyday on its own, but with the hip pain on top of it? No thank you. So I will just keep trudging along hoping that more and more answers will come no matter how long they take.

As long as I still have tomorrow, there’s something that keeps me going.

May There Be Answers!

Today has got to be one of the best days to happen over the last year. I FINALLY got the specialist appointment I have been waiting for since November 2019. With COVID-19 hitting the world like the disaster it is, everything became uncertain. I got the call a week before my initial appointment in March being told it was cancelled indefinitely.

The hospital where my specialist appointment was scheduled put out an update on Facebook in April that they were going to be calling back all of the patients whose surgeries and other appointments had been cancelled due to the virus, so I waited 3 weeks to get that call. Unsurprisingly it never came, so today I called to see if I could reschedule it. I was expecting another 2 month wait to get my appointment because I figured there would be quite an influx of people trying to get their appointments as early as possible.

Then they told me that my new, long awaited appointment was scheduled for May 28th at 2:30pm! Only a week and two days away! That was the absolute last thing I had expected due to the 2 month wait for my first appointment. I am ecstatic to say the very least.

One of the biggest reasons I am so happy that my appointment is so soon from now is that this week I have felt so so sick. I started a new vitamin regiment and I ended up throwing up one morning so I’m putting that on hold for a few days to see if that could be the culprit. I’ve felt better the last two days without taking them than the days I was taking it. At the same time though, I have been having immense breast pain that I can’t seem to figure out the cause. Of course that is one of the first signs of pregnancy so I took a test, and it came back negative. My period isn’t supposed to start until next Tuesday or Wednesday so I’m going to take another one closer to the weekend just to be sure. Pregnancy is relatively unlikely right now because my sexual activity has been minimal due to a lot of grief and loss that I have been going through on top of always being sick and having crappy joints. My joint pain and constant nausea is still very prevalent in my life and makes just existing difficult.

My joint pain is the most limiting thing though. I’ve been a lot more active with the nicer weather where I live, but even the most chill bike rides kills my knee and hip. The left side of my lower body is the most painful area. My knee and hip that are messed up are both on the left side, which is also my dominant foot too. Yesterday for example, my boyfriend and I were playing catch (he grew up playing baseball and softball with his whole family, they all played competitively and it’s quite intimidating) and it was fine other than my arm was sore from playing catch the day before too. The longer we played though the more pain I felt in my knee. When I said his family played their whole lives I wasn’t kidding, because his sister was actually my softball coach when I was 14. So because of that one whole summer of playing softball, I pitch to my boyfriend sometimes to make my ego feel good hahaha. I nailed the first two pitches I threw, the 3rd one wasn’t good at all, but then came the 4th. It was a horrible pitch due to a lot of different form failures, in which my hip popped and cracked in the worst way. I had to stop right then because I absolutely did something to hurt my hip more than normal, so I’m a little bit immobile on a beautiful 85 degree day today which absolutely sucks.

I wouldn’t normally pay much attention to it because I’m 19, young, and supposedly “healthy” but because of all of my problems, I’m not sure it’s even close to a normal thing. So now I need to go see my chiropractor to try and get some kind of alignment back.

I haven’t made a post in over a month because there hasn’t been any health changes with me since the last post, but a lot of different life challenges that have made feeling well harder.

But hope is truly around the corner, as 9 days from now I will finally be getting the appointment I’ve needed for the last year. I never in my life thought I’d be so excited to go see a doctor, because who the hell likes doctors?

The next time I talk to all of you, hopefully I’ll have more information on what the hell has been happening to me for wayyy too long.

Until tomorrow.

April Showers Bring More Uncertainties

What an insane reality we are finding ourselves in everyday. I wake up everyday, and the new news filters in through every social media, media source, and just the people around me. The stress of the world’s situation is being felt by every human that walks this planet. Existential dread is plaguing the human race more harshly than the actual virus at this point.

And yet all I can feel is sad and disappointment. My whole body is feeling the dread of the world, but more so my own neverending problems. I feel so selfish thinking that way. My stress is through the roof as of late and there’s nothing I can truly do to make it stop or go away.

What do you even do when the whole world is shutting down around you and being alone is getting old. I honestly don’t even know how many months it has been of me living in bed and the couch. I’m so tired of not knowing. Not knowing what it is I’m doing wrong, or not. Not knowing what’s going on inside of me. Not knowing if it really is just Celiac Disease or something more. Just wondering what the answers are to the endless questions I have.

There’s no real reason for this post other than venting. Just having somewhere to let out my feelings other than the few people in my life helps a lot. Writing is my therapy. It’s a real therapy. I never realized how much power lies in writing until I had to write a 10 page paper about it in school.

I’m doing everything I can do right now to keep my stress at bay. I learned how to use a sewing machine just so I can sew masks for myself and the people I care most about, I finally bought the memorial keychain for my dog who died last year, finally signed up for a vitamin regimen, and ordered more elastic so my mask making can go further than just my friends and family.

We’re all going through things right now and grasping at all of things we can do to make a difference in the worst time that most of us have experienced in our lifetimes. I don’t think any of us will experience things like this again, so we all need to do our part. We’re all just trying to survive each day as they come, so whatever it is that gets you through the day- do it.

Even in the midst of all of this, we can only hope tomorrow will be a better day. And as long as the sun comes up tomorrow, then it can’t be too bad.

Disappointment and More Waiting

Yesterday was March 24th. The day when my Gastrointestinal appointment was. The single day of March that I was looking forward to for a month and a half. Then it all got taken away with one phone call.

I got a call from the hospital two hours away, letting me know my appointment was cancelled indefinitely for COVID-19. My heart is with every family and person affected by this horrible virus, but all I could feel after that phone call was disappointment.

How selfish of me to be disappointed that I can’t go to my appointment in the middle of a global pandemic. But my therapist validated that feeling. I was allowed to feel that way because it was the last bit of hope I had and was holding onto for months now. Something so small as a doctors appointment was something that was helping me move forward every single day. Now that is gone. The worst of it is just wondering when this horrible virus will subside so I can have some kind of hope to get better with a new appointment.

All I wanted was answers. Was that so much to ask for? It’s like the universe is always laughing at me. I get close and think a breakthrough is coming, and everything just falls down around me. So I sit in my self isolated state for more months on end and hope things will resolve itself. Although I know that won’t happen, my hope is running out for doctors to fix me. It could be even more months of waiting and that part of my patience is so so thin at this point.

So each day I struggle through more sickness, nausea, joint pain, and the rare vomiting. And each day those things start to outweigh my hope. But how in the hell are you supposed to have hope in a world where everything seems to be falling apart more and more with each minute?

The struggles will worsen when the gluten-free foods continue to deplete due to people who don’t have an allergy or intolerance buying all of it as an alternative. For Celiacs and people with gluten intolerance, we don’t have a god damn choice! I got the last box of so many gluten-free items at my local grocery store, and they have no clue when more of them will come in. You can barely find normal foods online, nonetheless gluten-free. I know a lot of people who are buying gluten-free flour instead of regular because there isn’t regular flour. I get it, but they don’t understand the people they are hurting.

I am hurting in so many ways, but I can’t imagine living in a place with absolutely nothing in the stores and barely enough to eat stocked up. I’ve been trying to help as many people as I can from afar, but I don’t have the means to help others along with myself. This world is testing all of us in ways we can’t even imagine, so with the little bit of hope I have left, it is put in the good people. Look for the helpers in the world, because right now we all need to help and love each other as much as we can muster. We must keep trying and keep refusing to give up.

So spread love, kindness, and as much hope as you have left. Hope that tomorrow will be better. If it’s not tomorrow, it’s the next day, if not then, next month.

But do not give up hope. That’s all I can tell myself, so that’s what we all should be telling ourselves.

Until tomorrow.

What the Hell is Even Happening Anymore?

Well now that is has been over 12 days since I wrote my last post, boy oh boy do I have a lot to talk about. In those 12 days, my world and just the world in general has been completely turned upside down. No one can buy toilet paper anymore kinda upside down. Mysterious viruses are super cool huh?

Let’s start with my life first, then get into what I am doing to protect myself and my boyfriend as COVID-19 is sweeping the country and the first (now second) case has been confirmed in my rural state.

Like I said in my last post I was under a lot of stress because of an upcoming move. Well…We did it! We’re fully moved out of our horribly anxiety inducing apartment and into a quiet calm one. I really didn’t realize how much stress, anxiety, and irritability I was experiencing there. And it turns out I wasn’t the only one. Both of my cats have shown me in the last week and a half that I had them living in the most stressful place I could have had them in. Their demeanors and attitudes have changed from protect and attack mode all the time, to cuddly and sweet. I didn’t know my older cat was capable of cuddles and the amount of purring he has done since moving him.

The move sucked so bad though. It seemed like I was tweaking my back, twisting my hip, and giving myself bruises everyday without fail. And yet I couldn’t just stop and take a rest day. We were on a time crunch, and no matter how many times I thought I would vomit or literally just collapse, I kept going. There were so many days I just wanted to give up, cry, and just let my boyfriend do the rest. That was never an option, so I faked it till I made it. God damn, all of that is catching up to me with each day that passes.

To top off the endless trips up stairs that are actually illegally steep (boyfriend’s brother was a contractor and informed me it is in fact illegal to build them that steep anymore) with countless boxes and heavy furniture, I really didn’t feel like cooking. The reason mostly was the lack of a stove, oven, and microwave. (All solved now) So we had gone to McDonald’s because their fries are gluten free (score!) and I was just going to get a double quarter pounder without a bun. Ended up almost getting poisoned by an undercooked patty, but was too tired to raise hell at the small store. Didn’t eat the undercooked part and was fine.

Next night though I really wanted ice cream from them. In my nearly delirious state after that day of more moving, when I ordered two ice cream cones and my brain didn’t register the ass disaster I just put myself in. Thank god for my more conscious boyfriend. Thinking I could just cut off the top of the ice cream without getting any that had touched the cone, I put it in a bowl and just ate the ice cream. I thought I was certain I didn’t get any gluten from the cone, but it’s obvious now how stupid that was to even try.

Next morning the first thing I did was throw up out of my butt, then out of my mouth. I could barely move for that morning, knowing I had glutened myself, the move had to be put on hold for the day. I laid in bed trying my hardest not to move my body. If I did, I would’ve thrown up again, and I had a splitting headache just chilling above my right eye the whole time. My boyfriend came home for lunch and the first thing I said to him is, “Hold on, I gotta go throw up real quick.” Proceeded to just throw up the only thing I could stomach, water. Then when the water ran out, I was left just heaving up nothing and my whole body felt like I was eradicating a demon.

This really helped my validate to a lot of people that I haven’t been glutening myself all along, because at least that wasn’t happening everyday. The second round of vomiting sent my headache away and I did feel a little better, so you know what I did? Completely ignored my body and kept moving crap anyway. Man, I’m so smart. (Sike.) I’m honestly not even sure what day that was at this point, they all just blend together in the mess that moving was.

But we are in our new place, loving every minute, and so are our two kitties. I honestly couldn’t be any happier. I felt the stress melt away as I locked the door to my boyfriend and I’s first, and very stressful apartment together for the last time today. I was hoping to turn the keys in and say goodbye forever today but my landlords office was closed so I bought clay and made an ornament with their imprints instead. I’ll turn them in Monday.

That brings me to the disaster that the world is in right now. Coronavirus. Let me just say, I’m scared to just get a common cold right now because I have basically been in isolation for the last 6 months with no real contact to the outside world, meaning my immune system is basically useless. Nonetheless the possibility of a virus that no one really knows anything about still. The first case in my whole state was confirmed in the county next to mine, which was the last thing I wanted or expected. This is only a concern to me because my whole family and my boyfriend own/work in a retail store with nothing but human contact. I have lectured my boyfriend endlessly about washing his hands and being more careful than he would be if it was just him. And if I’m honest, I’m scared. Not panicking, but just scared. We all should be. This isn’t a joke, shouldn’t be taken lightly, and after my 24 rolls of toilet paper run out- I have no idea where I will get some after that.

So the move stress is gone, and replaced with existential stress and dread. How can you not be stressed when it seems like everything in life seems to be crumbling due to a novel virus? At the end of the day, I am protecting myself and those close to me, and I know we are all doing the same. All we can hope for at this point is the world governments are getting it under control and we wait until a vaccine or treatment is developed and distributed.

I hope all of you are safe and staying safe, and hope that tomorrow we get more positive news and less panic from the masses. Even if that isn’t going to happen, all we have is hope. All of my hope is in keeping my GI specialist appointment and not having to reschedule for an indefinite time depending on how severe it gets where I am. Only a week and 3 days until that appointment, and we’ve all seen how quickly it grows in that amount of time.

Here’s to always hoping. Maybe not tomorrow or the next day, but hoping it all resolves very soon.

Wash your hands, stop touching your face, stop buying all the damn toilet paper, and stay safe everyone.

I’m Just Tired Right Now

There has been so many days lately where I am just completely and utterly worn out. I know it’s because I have been pushing myself past my limit almost every single day for the last 3 weeks trying to get my new apartment prepared. I have only a week until I really want to be out of my current apartment and I’ve been so stressed out trying to make that happen.

Stress. That seems to be my entire life lately. Where no matter what it is, I seem to stress myself out about it more than I should. But moving apartments will never stop being a stressful thing. Especially with two cats with very different personalities who are reacting in very different ways to the move, which is stressful for them as well. With this, I think I cross contaminated myself the other day trying once again to eat a gluten free pasta. Barilla, I had higher hopes for you than the stomach gurgling and diarrhea. So this last week has been really difficult.

My irritability has been at an absolute high, and I know I’m testing my boyfriend at every moment so it seems. I’m not sure exactly why things have been so much harder lately than it has in the weeks previous, but everything is catching up with me all at once. Each day getting stuff moved and more prepared seems to take every bit of energy I have left and yet I don’t stop. I’m in such a weird mental place of being so fed up and frustrated by my disease, that I’ve just stopped acknowledging it. It’s so dangerous for the mental part of battling Celiacs. I haven’t ignored the actual parts of it like the gluten free diet, but mentally I just wish I could pack it away in a box and feel normal once again. So I’ve allowed myself to just be consumed with moving just to feel some kind of normality again.

Being that consumed has taken its toll. My joints are screaming with every step and yet I ignore it. The nausea is beyond overwhelming, but I just pretend like feeling that way is 100% and completely normal when it definitely is not. So really I’m just exhausted in every way imaginable. Ways I didn’t even know I could be exhausted anymore, but I can’t stop and let myself heal until this move is over. What a shitty mindset right? I know. But I can’t stop myself when there are deadlines. Like I said in my first ever blog post, I am accountable and I do what I have to do when it has to be done no matter what. And that mindset is probably what gets me in trouble most of the time, and I need to listen to my body, but my brain won’t let me stop.

I want to get better. I want to rest. I want to feel normal again. I have waited for nearly 5 months to get to that point and it hasn’t come. So here I am pushing myself so hard to get that outcome, but it’s only hurting me worse. Does it count that I’m at least self aware about it? Hahahaha, probably not. I know this funk will go away once I move, but I wish mentally and emotionally I could listen to the physical more without letting that inner voice get to me.

Luckily it’s March 1st and that means only 23 days until answers could be had. Soon I know things will get better and the stress will subside, but right now I am just exhausted in every single way.

Once again I look to tomorrow for hope and better days. I hope things are well for everyone else because this world has been absolutely brutal and full of despair lately, so we can all look forward to tomorrow hoping something will be better.

Holistic Healing is a Dream Come True

Of course I have tried holistic healing before and continue to value the treasure that it is, but today was so incredible. Surprisingly in my tiny town we do have an acupuncturist/healing massage therapist/performs Reiki lady who has degrees in all of the above. This is honestly so incredible when western medicine continues to fail you for months on end. Today I went to speak with her again for the first time in months to see if she could help my joint pain. Normally I get acupuncture done, which isn’t really my favorite thing around my hips. It has helped subside my joint pain for about a week at a time, but I haven’t tried anything else from this blessing of a woman. Today I decided to just get a massage to see if she could pulse healing energy through my body as well as just massage the things I’m not sure how to massage myself.

It honestly was the best decision. I felt so much better after I left. But during the massage, with each pass she made over my hips and ever growing amount of knots in my back, I could feel the pain being virtually whisked away from my body. It was the most insane feeling to have for the first time in a year, the moment it didn’t hurt for her to touch or push into my SI joint and bursa sac was the best moment this far. Whenever I’d touch it or try and rub it out, the sharp pain would keep me from going long, but I mediated through this massage and nothing could’ve helped more to get through those initial sharp/intense pains. When she was finished she left without saying a word so for a minute I was confused and just trying to come back to the real world after experiencing the most luxurious massage of my life.

I haven’t felt so refreshed and renewed in over a year. Walking down the street back to my apartment was the best walk ever. Almost entirely left with no pain at all, which is weird to get used to after so long. I then had to paint a few more walls in order to prepare my new apartment for my boyfriend and I to move into, and had no problem squatting and stretching to get all the nooks and crannies. Doesn’t mean I still don’t take a million breaks in between because of nausea.

The thing that I am getting the most tired of in this process is; waking up feeling like I could puke if I move even an inch and after eating a meal feeling more nauseous than I was before. I’m not sure what those two things really mean, and I’ve mentioned them multiple times to my doctors, but it doesn’t seem to make a difference. It’s just so frustrating for doctors to not take you seriously due to age, gender (not being sexist but women get treated like shit by a lot of doctors), and how they perceive if you are so nïeve to a point where they just keep throwing short term medications at you.

So today was fantastic because I got to experience the best massage ever and have someone who listens to and considers everything I say to her. She is better than any doctor I have seen in the last year because I actually feel heard, not just looked over because I’m just a young 19-year old whose just “pregnant” (Still no baby, I must be overdue based on the doctors accusing me the first time over 11 months ago and are still resilient that pregnancy is the answer.) and I have no idea of what I am actually feeling so just try this medication. Oh that didn’t work? Try this one! Not that one either? Here’s another one! And the vigorous cycle continued on for what has seemed like an eternity. So boy oh boy I can’t wait to see the GI specialist on March 24th who will probably be just as angry as I am at the utter incompetence these doctors seem to have.

Tomorrow is always better as long as you believe it will be. And that doesn’t always have to mean the next day, because the tomorrow that will be better to me will be the end of March. Time is a construct, but that’s a whole different subject. So if the sun rises again when I wake in the morning, then the day is already great.

Here’s to all of the tomorrows’ you are looking forward to.

Another Week, Still No Change

I have got to be one of the least accountable bloggers for someone who is just starting out. But the problem with blogging every day to every 3 days is hard when there is nothing changing with my symptoms.

In the last 6 days I have felt the same almost everyday. But I am also in preparation to move apartments so I’ve put my health on the backburner once again. For the last 3 days I have completely thrown myself into preparing the new space, that I have been completely disregarding my own health. I didn’t really realize how hard I was pushing myself to finish all of the things I need to do until I woke up this morning and felt like 6 trains hit me all at once.

I hadn’t even done that much, or so I thought. But after painting a whole wall, replacing 8 awful light bulbs, and cutting new light covers just to break one of them I needed, it all came crashing down on me. Reminding me that I am still sick. That my body will not do the things I want to do. Reminding me that for the last 6 months I have been absolutely useless to the world because I can’t even do what I think are simple tasks. So many people ask me if I can do something for even an hour, and I want to say with confidence, “Yes!” But truly I cannot without feeling insane nausea. The amount of breaks I have to take in between one job to the next within an hour is stupid high.

It definitely doesn’t help that the chronic joint pain living so happily in my left hip will not go away or lessen no matter how long I have eaten gluten free. (I’m at 4 months of a successful GF diet) So on top of the endless nausea that will never subside, the chronic joint pain is what adds the most frustration to my life. I sleep like shit because of an inflamed Bursa Sac and jacked up SI joint. This makes sleeping on my left side and back nearly impossible due to uncomfort. You don’t realize that you never get off of your hips until a chronic pain in them can never be relieved because you are always on your hips. Standing, sitting, and sleeping, all of your weight hangs out on them.

So for the last 6 days I’ve just been so frustrated and entirely too exhausted to function. Pretty horrible nausea and excruciating hip pain that only seems to increase each day that I am alive. Just existing hurts me. “So Em, why don’t you stretch?” “Why don’t you work out?” “A. B. C. could help if you just do it.” Tell me, would you want to go work out if you felt like you could vomit at literally any second? How about trying to do a workout with so much joint pain you don’t even have a real range of motion anymore? And I do stretch. I am constantly stretching and doing light yoga poses to try and bring some kind of relief to the pain. At this moment in time, I am doing almost everything I know how to for both my hip and my nausea. I’ve spent 14 weeks total in Physical Therapy for my joints, so I’m well versed in the exercises I need to do. I have spent weeks researching different remedies for nausea and I have tried them all to no avail.

If I hear one more goddamn person tell me I am not doing enough to help myself, I might snap. I am doing everything I can that is in my power. And now I just wait for March 24th to come to see if I can get real answers from a specialist.

There is always tomorrow I guess.