Alright, so we saw the surgeon and it looks like I will NOT be having surgery. Most would think this is great news, well, I'm heart broken. The doctor looked at me with sad eyes and said "there's nothing I can do for you here, what you have is real and painful and I am so sorry. Please don't do anything drastic, please do not get your hopes up for the GI."
I'm devastated. This pain is too much to bare... It has taken my life from me. I'm back on home hospital and I'm missing out on my senior year. I'm missing out on my friends. I'm missing out on making memories. I'm sorry I didn't post the past few days, but I was honestly so crushed by the news I didn't know how to form the words until now.
The surgeon gave me an Irritable Bowel Syndrome (IBS) packet and said goodbye. I. B. S. Are you freaking kidding me. I'm angry and frustrated, not necessarily at him, but at life for doing this to me. It's most likely gastroparesis or the lack of muscle function in the stomach now... Which there's no cure for and treatments don't always work. The pain will most likely effect me for months, maybe even years. I could have to go on tube feedings or do other treatments that almost seem worse than the pain... It just seems unfair. And it is. All of it is. I was 14 when I first showed symptoms. I went 4 years undiagnosed with EDS, almost 5 before I got POTS and Dysautonomia, and now I'm 5 months into this new struggle, undiagnosed, and quite frankly, helpless. I'm 18. I'm just a kid... This isn't how my life should be.
I realize this is sounding like a pity party, and I guess it kind of is. And before you jump to judge me about how I'm so negative and I'm looking at it the wrong way, imagine being in my place. Having your life, your friends, your decisions, your DREAMS snatched away by the hands of illness. I'm pissed. I'm sad. I'm bitter. I'll be okay.
Sometimes being positive is harder. It takes so much strength and energy. Strength and energy that I do not have right now and I honestly don't care. It's my disease I can cry if I want to.
yours truly,
broken but beautiful
Thursday, March 24, 2016
Monday, March 21, 2016
Beach Day
Finally got the opportunity to go to the beach today and I did really well. I went through this outdoor animal/hayride/corn-on-the-cob place and I had a really great time with my family and boyfriend. I didn't need my wheelchair and even got to go on the hayride (bumps and all) without getting sick. It was quite the miracle after the week I've had.
Next we went to the beach and I walked down into the sand and boy oh boy...it felt good. I layed out attempting to become any other color but pale and we even built a sand turtle. It was overall a great day.
When it came time for lunch though, I was tired and worn out (figures). I wasn't too hungry, but because everyone else got it, I ordered fish n' chips figuring that the boys could finish up my left overs. I got about 3 fries in and OH. BOY. Was I in trouble. I immediately had a horrendous cramping sensation and felt dizzy as ever. I asked my mom if I could go out to the car and lay down and that was the end of my coastal adventure.
I'm still having a terrible time with food. My stomach was okay today all up until that point. I had a banana muffin and some fruit prior, but nothing heavy like the meal at lunch. It was really discouraging to feel that pain again after finally feeling some relief from it. I see the surgeon tomorrow to make the final decision about surgery... Wish me luck!
Yours truly,
Broken but Beautiful
Next we went to the beach and I walked down into the sand and boy oh boy...it felt good. I layed out attempting to become any other color but pale and we even built a sand turtle. It was overall a great day.
When it came time for lunch though, I was tired and worn out (figures). I wasn't too hungry, but because everyone else got it, I ordered fish n' chips figuring that the boys could finish up my left overs. I got about 3 fries in and OH. BOY. Was I in trouble. I immediately had a horrendous cramping sensation and felt dizzy as ever. I asked my mom if I could go out to the car and lay down and that was the end of my coastal adventure.
I'm still having a terrible time with food. My stomach was okay today all up until that point. I had a banana muffin and some fruit prior, but nothing heavy like the meal at lunch. It was really discouraging to feel that pain again after finally feeling some relief from it. I see the surgeon tomorrow to make the final decision about surgery... Wish me luck!
Yours truly,
Broken but Beautiful
Saturday, March 19, 2016
Feeling Crummy
So, I'm having a hard time the past few days (obviously if you've read my last few posts), but it just feels like I'm getting weaker and worse as time goes on... Whatever is wrong with my stomach is ruining my life. It's like this crampy, achey, burning sensation almost constantly now. It used to just happen when I eat, but now it just flares up when I ingest anything. I'm really starting to worry just because if it's gastroparesis instead of my gallbladder, that means I can't just fix it with a surgery and a change of diet... It's gonna be a long time suffering and doing treatments that don't always work.
Today, I am attempting to go hang out with some friends, though I started getting ready at 11 and am only halfway done because I keep having to take breaks. I'm honestly exhausted. Here's hoping I won't need my wheelchair tonight and if anything I can just use my walker. I honestly hate hate HATE using my supporting devices in public. People's stares don't really get to me anymore, but it's the feeling that I'm inconveniencing the people I am with that gets me. I'm often overwhelmed with the anxiety of the idea that the friends or family I'm with would be having more fun if I wasn't there to hold them back. It's not a fun feeling, honestly.
This morning I was invited out for something, but as had already made plans for tonight I had to say no, so that I can conserve my energy and be able to fulfill my plans this evening. It did however make my entire morning that I was thought of. Even if I have to say no because of weakness, not feeling well, being in medical care, or just because I already am doing something and have to save energy, I will ALWAYS appreciate the invite more than you could know. It reminds me that I'm not forgotten and that people outside of my house still care about me even though I've disappeared for a while to try to get better. So thank you for that today, Lord, because I needed it lol.
I hope you're all having a beautiful Saturday and that those of you with disorders like mine are having a low pain sun-shiny day :)
Yours Truly,
Broken but Beautiful
Today, I am attempting to go hang out with some friends, though I started getting ready at 11 and am only halfway done because I keep having to take breaks. I'm honestly exhausted. Here's hoping I won't need my wheelchair tonight and if anything I can just use my walker. I honestly hate hate HATE using my supporting devices in public. People's stares don't really get to me anymore, but it's the feeling that I'm inconveniencing the people I am with that gets me. I'm often overwhelmed with the anxiety of the idea that the friends or family I'm with would be having more fun if I wasn't there to hold them back. It's not a fun feeling, honestly.
This morning I was invited out for something, but as had already made plans for tonight I had to say no, so that I can conserve my energy and be able to fulfill my plans this evening. It did however make my entire morning that I was thought of. Even if I have to say no because of weakness, not feeling well, being in medical care, or just because I already am doing something and have to save energy, I will ALWAYS appreciate the invite more than you could know. It reminds me that I'm not forgotten and that people outside of my house still care about me even though I've disappeared for a while to try to get better. So thank you for that today, Lord, because I needed it lol.
I hope you're all having a beautiful Saturday and that those of you with disorders like mine are having a low pain sun-shiny day :)
Yours Truly,
Broken but Beautiful
Friday, March 18, 2016
Lonely Home School Girl
I hate being on home hospital. Everyone at my school gets to go to the assembly today and I am out of breath and blotchy skinned with low blood pressure all because I took a shower (with my mom's assistance at that). I miss my friends. It's so, so hard for me being alone all day, everyday in addition to feeling like crap constantly. That's the worst part about being sick, I think. It's hard to have friends.
At school, you can hang out with a lot of different people throughout the day. You get so much social interaction. But for me? I sit waiting for a text most of the day from people who are in classes People who don't always remember I'm waiting. And that's okay. I'm not ever-present in their life during the day anymore. I understand that sometimes life just gets away from you...
People think that being sick gives you some kind of superpower to make friends. Well, it doesn't. The truth is, unless you're dying, no one cares. It's not that they're against spending time with you while you suffer, they're just for themselves enjoying life. It's the truth I've learned in the past 4 years. But that's okay. I accept this truth.
I know I have friends. I have a great boyfriend, too. It's just that sometimes I wish I'd get a random text from one of those friends saying "thinking of you! Let's hang out soon!" It would honestly brighten my days so much being able to hangout with friends. And luckily for them, I get tired really fast so they wouldn't even have to be here more than an hour lol. For now, though, I spend my days reading and playing Sims. Up next I have War of the Worlds, one of my all time favorite classics. Honestly, I love anything by H.G. Wells. He's my favorite author. At least I have H. to keep me company during the days.
Well, sorry for rambling, I know this wasn't really related to my health, but its more about my emotional health and how I'm doing. How I, the person, am doing. Which, for now, I'll say I'm doing okay. (Because we all know that "fine" isn't fine and I don't wanna be too obvious). Thanks for reading.
Yours truly,
Broken but Beautiful
At school, you can hang out with a lot of different people throughout the day. You get so much social interaction. But for me? I sit waiting for a text most of the day from people who are in classes People who don't always remember I'm waiting. And that's okay. I'm not ever-present in their life during the day anymore. I understand that sometimes life just gets away from you...
People think that being sick gives you some kind of superpower to make friends. Well, it doesn't. The truth is, unless you're dying, no one cares. It's not that they're against spending time with you while you suffer, they're just for themselves enjoying life. It's the truth I've learned in the past 4 years. But that's okay. I accept this truth.
I know I have friends. I have a great boyfriend, too. It's just that sometimes I wish I'd get a random text from one of those friends saying "thinking of you! Let's hang out soon!" It would honestly brighten my days so much being able to hangout with friends. And luckily for them, I get tired really fast so they wouldn't even have to be here more than an hour lol. For now, though, I spend my days reading and playing Sims. Up next I have War of the Worlds, one of my all time favorite classics. Honestly, I love anything by H.G. Wells. He's my favorite author. At least I have H. to keep me company during the days.
Well, sorry for rambling, I know this wasn't really related to my health, but its more about my emotional health and how I'm doing. How I, the person, am doing. Which, for now, I'll say I'm doing okay. (Because we all know that "fine" isn't fine and I don't wanna be too obvious). Thanks for reading.
Yours truly,
Broken but Beautiful
What it's like to have a Hida Scan (Gallbladder)
On Tuesday, I had my Hida Scan to check the functionality of my gallbladder. I had been looking online to see if anyone had blogged or posted about the experience, but sadly came up short. So, I thought I'd make a post about my experience to share with the interenet world.
I started the night before by not eating anything after midnight (My test was at 8 am so that wasn't too hard). Once I got to the hospital, the first thing they do is bring you into the test room where there's a big machine (similar to an MRI, except that it's open) and have you lay down on the table. I had a pillow waiting for me, though I had brought my own just in case, and a pad to support under my knees while I laid there for an hour or s for the scan.
Next, they started an IV (Guess what, it took 3 tries, 2 nurses, and 2 heated blankets) and injected a radioactive highlighting solution. (Doesn't hurt at all). After that, they slide the table under the machine and have you lay still for about 45 minutes to an hour. I chose to sleep for a bit and got in a little nap, YAY!
Then, they'll start a drip of a medication that makes your gallbladder contract and makes the muscles work so that they can look at and watch how much it is actually functioning. Now, I'm not going to lie, this part was very uncomfortable for me. I had a cramping sensation that lasted the rest of the procedure until after I ate something an hour later. It wasn't that it was painful, it was just a discomfort with an aching sensation. However, the whole test was pretty easy for me, all I did was lie there doing nothing. (and snoozing!)
If you're having a Hida Scan anytime soon feel free to ask me questions via email (Comment for info) or call your clinic as I'm sure they'll be happy to help!
Stay well and have a low pain day my friends.
Yours truly,
Broken-but-Beautiful
I started the night before by not eating anything after midnight (My test was at 8 am so that wasn't too hard). Once I got to the hospital, the first thing they do is bring you into the test room where there's a big machine (similar to an MRI, except that it's open) and have you lay down on the table. I had a pillow waiting for me, though I had brought my own just in case, and a pad to support under my knees while I laid there for an hour or s for the scan.
Next, they started an IV (Guess what, it took 3 tries, 2 nurses, and 2 heated blankets) and injected a radioactive highlighting solution. (Doesn't hurt at all). After that, they slide the table under the machine and have you lay still for about 45 minutes to an hour. I chose to sleep for a bit and got in a little nap, YAY!
Then, they'll start a drip of a medication that makes your gallbladder contract and makes the muscles work so that they can look at and watch how much it is actually functioning. Now, I'm not going to lie, this part was very uncomfortable for me. I had a cramping sensation that lasted the rest of the procedure until after I ate something an hour later. It wasn't that it was painful, it was just a discomfort with an aching sensation. However, the whole test was pretty easy for me, all I did was lie there doing nothing. (and snoozing!)
If you're having a Hida Scan anytime soon feel free to ask me questions via email (Comment for info) or call your clinic as I'm sure they'll be happy to help!
Stay well and have a low pain day my friends.
Yours truly,
Broken-but-Beautiful
Thursday, March 17, 2016
IV Vent
I just had the worst day... (Well not my worst but for a normal person it would've been the end of days) I went in for fluids because I've been throwing up all day and unable to consume anything orally without it causing a major stomach fit. Even water made me spew. I couldn't even take my nausea medication! Lol. But the first nurse that tried to do my IV spent 25 minutes only to get 2 bad sticks, one of which blew the vein (my hand is throbbing as I speak of the event), and the other which is on my wrist bone and so, so bruised. The second nurse tried in my forearm and wound up 'fishing' for a good 10 minutes before moving to my other arm to FINALLY get a good stick on my hand!!!BUT it was right up against a valve so even SALINE hurt and burned like hell leaving me irritated bumps going up my forearm.
(Mind you I was still nauseous and flu-feeling this entire time because the dissolvable zofran they gave me didn't do shit. Plus, I hadn't had my pain meds ALL DAY. So I was trying not to cry from frustration as they failed over and over to get a good stick.)
At that point in time I basically said "please I think I'd rather just get a Phinigrin injection and go home to chug Gatorade in peace". So that's what they did for me and I was sent home covered in holes and bruises. The sad thing is, I can't even blame a nurse or the universe because it's just how my stupid EDS body treats needles. My veins slip around and hide or blow (very easily, apparently).
I'm at my wits end, honestly.
I had my HidaScan for my gallbladder on Tuesday and I see the surgeon for the results this Tuesday. It seems I get worse every day. The attacks are more severe each time and almost always include a low grade fever. I'm ready for this to be done and over.
Yours truly,
Broken-but-Beautiful
(Mind you I was still nauseous and flu-feeling this entire time because the dissolvable zofran they gave me didn't do shit. Plus, I hadn't had my pain meds ALL DAY. So I was trying not to cry from frustration as they failed over and over to get a good stick.)
At that point in time I basically said "please I think I'd rather just get a Phinigrin injection and go home to chug Gatorade in peace". So that's what they did for me and I was sent home covered in holes and bruises. The sad thing is, I can't even blame a nurse or the universe because it's just how my stupid EDS body treats needles. My veins slip around and hide or blow (very easily, apparently).
I'm at my wits end, honestly.
I had my HidaScan for my gallbladder on Tuesday and I see the surgeon for the results this Tuesday. It seems I get worse every day. The attacks are more severe each time and almost always include a low grade fever. I'm ready for this to be done and over.
Yours truly,
Broken-but-Beautiful
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