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.
Okay I’m about to go off a little bit so bear with me…
Something that REALLY makes me angry is when people just don’t know how to act around service dogs. I cannot even tell you the amount of times I have caught people petting my service dog while I wasn’t looking, or making kissy noises at her (those are the WORST by the way) or trying to call her over to them. It drives me NUTS. ALso, you would be surprised at the amount of people who have come up to her and just started to pet her or even PICK HER UP without my permission or even asking for it. This is so extremely frustrating. Yes, she is a puppy and still has quite a lot of training to go through, but she does know her seizure alert command and when I have her out in public SHE IS WORKING. I understand loving dogs and wanting to pet all the dogs that you see because, trust me, I love dogs and I do love to make new doggie friends whenever possible BUT you have to realize that if you see a dog wearing a very clearly marked service dog vest that you should not be distracting that dog or trying to pet it, that dog just cannot be your doggie friend. Also, most of the people will come up to me and say ” oh it’s a service dog and I can’t pet her” and just stand there awkwardly watching me and Disney until I either break and let them say hello or walk away. I have even had multiple people just pick her up while I’m walking her.
The people who do this are not children, they are full-grown adults. Yes, I have had a handful of children come up to me and do these things but they really don’t know better and I was fully expecting this upon making the decision to get a service dog. I did NOT expect adults to be completely clueless on how to behave around a service animal. Even with non-working dogs, I was always taught to go up and ask the owner for permission before attempting to pet a strange dog. That just seems like common sense to me. The dog is unfamiliar and could not be friendly, it could be scared of people and not react well or it could be completely friendly but my point is, you never know. Even service dogs who are so well-trained can have off days. It just is so rude not to ask anyway, especially because you distracting my dog could put me in a dangerous situation. If she is too distracted she could miss an alert and I could have a seizure. I do appreciate people who come up and ask me to pet her and I try to allow as many as I can to do so, but sometimes if I am having a bad day or not feeling 100% I will say no, this only for my safety and my health and I don’t think that people understand this because they get so angry when I say no (which is a rare occasion). I really think that people need to be more educated about service animals and service animal etiquette.
This last one is probably the most awkward and just plain out rude thing ever. There have been multiple times when I am walking with my service dog, whether that be in the mall, at a store, or even in front of my own house, that I will get stopped and be called a faker. I have been told on multiple occasions that I do not have a disability and “how dare I have a ‘fake service dog’ (my service puppy is not fake) when there are people who really need one”. This is such an awkward situation for you to put someone in and it is also very hurtful. Every time that this has happened I have found myself having to defend my diseases and my disabilities because people are rude and think that just because I look “healthy” or “normal” that I am. Let me tell you something, I am absolutely not healthy or normal. I don’t function like a typical person. I have seizures, I have vomiting fits, there are days when I cannot move parts of my body and cannot even go to the bathroom on my own. Please think before you speak and realize that invisible illnesses exist and are absolutely illnesses. Never tell a person that they are a horrible person for having a “fake” service dog or even a handicap sticker for their car because you cannot see why they need one. Most of these service dogs that you are calling fake are very much real and are helping people with invisible illnesses like me. Remember: Just because you cannot see someone’s disability does not mean that it isn’t there.
… Okay I’m done with my rant now