Hello Beautiful People.
My symptoms have not gone away, they have in fact gotten worse. A few days ago I was able to hold down some goldfish crackers or some soup. I am extremely distraught to announce that this is no longer the case. I haven’t been able to hold down any food including cheerios, goldfish or soup in 3 days. My entire days have been spent throwing up and feeling extremely weak. Leaving my house to even go to Petco is a pretty large endeavor. I get tired easily from walking around and being outside in this heat. I feel very defeated right now. I don’t know what to do anymore. I tried to stay strong through this, I really did…but I feel myself breaking. Today when I couldn’t hold down my soup, I looked at myself in the mirror and cried. I cried so much. I am beyond frustrated at this point. I am depressed and upset and just done with dealing with this. It’s incredibly hard and I am only 20 years old. Sometimes it feels like no matter what I do to ease the symptoms or whatever my doctors are doing to try and help, just doesn’t work. It’s like my own body hates me and is at war with me. This is the worst I’ve felt in a long time and would really appreciate and kind words anyone could give. I’m just really not doing well.
Hello Beautiful People!
Today I am feeling a whole lot of love. As you guys know, I’ve been really sick. I still can’t eat anything and feel pretty down and have no energy most of the time. I can’t hold any actual food down and it’s getting so frustrating for me. I’ve been SO upset recently BUT I have some pretty amazing people in my life who pulled off a really awesome thing today:
I have a best friend who lives about an hour/ hour and a half away from me, which absolutely sucks. I never get to see her but we constantly text. She knows how upset I’ve been from being so sick so she decided to come up with a plan to cheer me up. She texted my boyfriend on monday and asked him if he thought she would be able to come to my house and surprise me and if he thought it was a good idea. Obviously he knew I would love that so he gave her my mom’s phone number and they worked on this plan for like 3 days. I HAD ABSOLUTELY NO CLUE. I came home from therapy today and was just hanging out in my room watching YouTube and I get a text from my friend and she says “go open your front door” and I was like “why would she tell me do that nothings gonna be out there she’s messing with me” and THERE SHE WAS. She was right at my front door with two bottles of Gatorade and some goldfish crackers (which are the only things I can hold down). I CRIED. She told me that she knew I was feeling so bad so we were gonna spend the day hanging out and watching a Disney movie marathon. This was the absolute BEST surprise/pick me up I could ever ask for. I have some really amazing people in my life and I’m so grateful for it. I feel so much love right now, even though I’m still sick I feel like I’m on top of the world.
Hello Beautiful People!
So it looks like I’m not really getting better. My Gastroparesis has flared up the worst it has been in almost 5 years. I can’t have anything besides Gatorade, saltines, a small handful of Cheerios, half a banana and chicken broth. I’ve lost 18.6 pounds in 14 days. My doctors are very concerned about this flare up and so am I. I’m heading into a state of depression. I can’t eat, I can barely move around, I have trouble sleeping. Right now, to put it frankly, life sucks. I got up today to have a training session with my dog and my dog trainer, I was outside, not really doing much but instructing my dog, for about an hour and we decided to go on a 10 minute walk because my service pup in training can sometimes get nervous around cars and gardeners (obviously something we’re working on). I should not have gone on this walk. I over exerted myself.
Since that really short walk I have felt possibly the worst I have felt in about a week. I’ve been completely lethargic since then, to the point where my mom is literally going up and down the stairs to bring me things because even she knows I physically just can’t do it.
**NOTE: my mom is wonderful but she also has issues with her lungs so going up and down the stairs is not easy for her and she won’t go up and down the stairs a bunch of times willingly unless something is really wrong with me**
I feel like everything has been drained out of me. My strength, any sort of hydration I had, and my spirit at this point is kinda broken. I just hate being stuck inside all of the time. I hate feeling this way. I still have to keep a barf bucket next to my bed because I’m throwing up nightly and still sometimes during the day, even without eating anything. My doctors have decided to put me back on Ensure so that I get some type of nutrients into me. This is literally the diet that I was on in 9th grade when this whole thing started. It’s so frustrating that things got better for such a long time…and now I’m just going in reverse. I’m tired, I’m grumpy, I’m depressed and oh man am i hungry. This really sucks.
I’m hoping that within the next two/three weeks I’ll keep regaining strength and I’ve now learned that I absolutely cannot push myself, I don’t think I’m going to recover from today’s mishap until MAYBE late tomorrow night. BUT even though I am stuck in my bed and am feeling rather miserable I am trying to keep myself busy as best as I can by watching movies and coloring and even just playing games on my computer so I can try to focus on the positives that WILL come my way.
Gastroparesis may have knocked me down but that doesn’t mean I won’t get back up.
Hello Beautiful People!
I apologize for not posting much recently, but if you have read my past two posts you know that I haven’t been feeling well. I unfortunately, am still sick. At this point I can not tolerate any food and I threw up tea this morning. I am extremely frustrated and in an immense amount of pain. This morning I woke up and my brother made me some tea, i took maybe about 5 sips ( in 5 minute intervals) and all of a sudden felt extreme pain in my stomach and the nausea that I was already dealing with, worsened. I began to vomit. This vomiting episode lasted for 45 minutes straight. I could not hold down anything including water or Gatorade. Obviously at this point I needed to be rehydrated. As of right now I feel a little bit better, but not much. I still have to take one sip of gatorade every five minutes because I cannot tolerate more than that. I am also fighting off another infection that requires antibiotics. These antibiotics need to be taken with food, so this is a problem. I just held down about a quarter of a banana with extreme pain and nausea, but I really need to keep down this medication. I’m waiting for my Zofran to kick in and hopefully feel just a little bit better. I’ve fainted about 4 times today due to dehydration and just lack of any sort of nutrition. I really need to take a shower but can’t stand long enough to do so, therefore I think my mom will have to help me take a bath later on. This is not something I am happy about, all of my independence has been taken away from me the past week because of this illness. I have needed help with just about everything and that’s just so frustrating for me. I am so sick of being sick. This absolutely sucks but I am going to try to stay positive and hope that I will be better soon.
Hello Beautiful People!
This is an update on my post Gastropareis Flare Up from a few days ago. It has now been about 5 days since these symptoms began and they have not gotten better at all. I still cannot hold anything down besides Gatorade and I think yesterday I was able to hold down half of a sliced up banana. I tried rice, soda crackers (saltines), pretzels…nothing worked. This is extremely frustrating and very painful. I cannot get out of bed except to go to the bathroom. Today being the 5th day of this, my mom and I went to urgent care after finding out that my gastro and my regular physician were away for the weekend and would not be back until monday. Urgent care obviously does not have any of my records so it’s a long process explaining all of my chronic illnesses and then trying to find out what is happening with my current symptoms. After explaining everything this doctor was very concerned because obviously I am losing a lot of fluid. If this doesn’t stop by tomorrow I will need to go to the ER to get IV fluids. She told my parents that I just need to stay in bed and not do anything because I just physically can’t afford to. It’s painful and we can’t really risk losing any more fluid. She also told me to get Pedialyte pops and chicken broth and see if that will down. Honestly, I just feel like absolute crap and want this to go away already. I’ve been stuck in my room for 5 days and can’t do anything. I’m in constant pain and just extremely uncomfortable. Gastroparesis and stomach viruses are an absolutely awful combination.
Hi Beautiful People!
Today my Gastroparesis has absolutely gotten the better of me. I feel horribly sick and (SLIGHTLY GRAPHIC SORRY) have not been able to get off the toilet for a few hours now. Gastroparesis is “the literal paralysis of the stomach, characterized by WebMD.com as a condition that inhibits the stomach from emptying properly. Gastroparesis affects stomach contractions, which move food from the stomach into the large intestine where digested food is emptied. If stomach contractions don’t work to empty the stomach properly, gastro-discomfort can occur (i.e., nausea, bloating, vomiting)”. To put that in simpler terms, my stomach does not contract the way it is supposed to and my stomach doesn’t empty properly. Sometimes it does not empty at all and I end up vomiting or other times having diarrhea, sometimes both. I constantly feel stomach pain and nausea. I take Zofran and Hyoscyamine for those symptoms and they do help but lately haven’t been as effective. So today my stomach is just having a major battle with me and will not hold down anything. I’m at about a level 9 of 10 on the pain scale and the nausea is extreme. I know from the constant vomiting and bowel movements that I am getting dehydrated and water, believe it or not, actually makes my symptoms worse. I know that that’s really weird but that’s how my body is. When I don’t feel well it rejects water, it literally comes right back up. The only thing that I can tolerate is Pedialyte or Gatorade. I actually did not have either of those when I started writing this post but my wonderful friend just brought me some from work because she is awesome. Hopefully I will be able to keep this down and be okay by morning. I’m trying to keep myself distracted from the pain by watching YouTube videos and texting friends. I guess we’ll see how I’m doing in the morning.
Today I had (another) endoscopy. It’s been two weeks since my last one, but they wanted to do another biopsy and just have a second look at my intestines. I was nervous going into the procedure even though I’ve done it many times before. I really just don’t like hospitals or needles. However, with multiple chronic illnesses those are things you have to deal with very regularly. So I barely slept last night, like, AT ALL. I went in to the hospital around 9:30 and we went through the usual admitting stuff. We went through the magical long list of medications that I take on a regular basis, checked my vitals, and I signed off on what seemed like a thousand papers. While all of this is happening I’m extremely nervous, anxious and my stomach is in a whole lot of pain.
Finally the nurse came over to put my IV in place (reminder: I HATE NEEDLES), he was actually a very nice guy. I told him that I am very afraid and that I am the biggest baby he will probably ever meet. He told me that he believed in me and asked if I wanted “this really cool numbing spray” (his words not mine) to help numb the area so I didn’t feel the needle go in. The fact that he had offered to do this made me absolutely LOVE him. I had a nurse who was my regular ER nurse at a different hospital who always used the spray and she was the only person I’ve ever felt comfortable letting stick that stupid needle in my arm. Since I left that hospital, when i ask for the spray they never let me have it because “oh come on, that’s for kids you’ll be fine” and no, I am never fine. So I automatically liked this nurse. He was super patient with me and was actually really good at putting the IV in (the past few times I’ve had it they’ve had to re-put it in about 3 times). He gave me a fist bump when he was done and told me I did great. These are the kind of nurses every hospital needs. He made me feel so much better about the needle and honestly, I didn’t really feel it at all.
After that, the anesthesiologist came over and went over the procedure with me and what anesthesia he would be using. He was nice too, he told me that if I felt uncomfortable at any point while getting the meds he’d go slower so I didn’t feel it as much. Of course the second he starts putting it in my system, I made him slow down but hey, he said I could do that and he wasn’t mad at all. The team of nurses and doctors I had today were all super nice and made sure I was comfortable every step of the way and I really wish that every hospital trip could be like that. They even let my mom come in the OR until I fell asleep.
I woke up after it was over and they gave me cookies and a ginger ale for when I felt like eating/drinking. The nurse ( a new nurse now) talked with me about puppies and Disney world and kept telling me how good the cookies were that she brought me. I have to admit, they were amazing. My Gastro came over and filled my mom and I in on the situation that is my stomach. It turns out along with gastroparesis, I have chronic gastritis. Great, another thing for me to be worried about. This part really sucked. He said we won’t know anything from the biopsy for a few days. I was instructed not to do any physical activity today. The only thing I was allowed to do was get up to use the bathroom. I think the nurse could tell I was a little upset so when she wheeled me out to my car and helped me get in we talked some more about her dogs and my dogs and just happy things, and then I went home. The whole ordeal took about an hour and a half which isn’t too bad. I still feel really weird from the anesthesia, I feel like my body is jelly or like a noodle or something and I’m still pretty loopy. Hopefully I’ll feel a lot better when I wake up tomorrow. Goodnight my beautiful people! (this took me so long to write, and I’ve edited it about 5 times LOL)