Hey out there....damn is it HOT. Hope everyone is keeping cool and enjoying their summer. I still haven't got in the pool. The insecurity is frightening. I haven't felt this uncertain about myself as a whole since the 'wonderful' awkward years of about 13-16. I'm so hyper aware of people looking at me, or noticing stuff. I'm sure it's mostly in my head but regardless... I got great new bags that are super light and conceal pretty well but getting dressed is really impossible. NOTHING works but a dress. Having to figure out how to conceal or finding something that will be comfy with the stoma just turns into too much work so I'm basically dressed like the 'People of Walmart' every day unless I absolutely have to go somewhere. So unlike me. At this point I don't care.
I've been pretty lazy this week. Just tired and the lightheadedness is still happening. I'm going to get a FULL blood work up done next week. Anything that could be contributing to it I don't have. I'm not realy anemic, I'm not dehydrated. It turns out I'm NOT hypoglycemic. My results were so low because there was a serum issue with my blood draw. I've had normal glucose levels since. I can't blame it on the heat because I barely leave the house. It's so hot, I'm too lazy and I don't feel like blacking out in public or while driving. I mean, I know that sounds super fun and everything, but I'll stick to feeling like that at home.
I always blamed my black outs and lightheadedness on my anemia in the past but I'm hoping the UC wasn't masking something else. How lucky would I be if there's something else to deal with. Jackpot! (Not a jackpot).
On that note- I just wanted to say how lucky I am to have Hubs in my life. Yes, we are married now, but when I first got sick we weren't and he was there every minute. He could have ditched me because of what a nightmare it was. He's fed me jello when I was too weak to feed myself and that's all I could eat, he's washed my hair when I was too sick and weak to do that. He's carried me upstairs when I couldn't walk. He's made me laugh hysterically when I couldn't see one bright spot in my situation. He's taken care of Daughter#1 like she's his own when I was in the hospital or too sick to do it. He loves me unconditionally even though I'm a pain in the ass and can be a bitch. He's my biggest fan and biggest support. He anchors me in the storm until it passes. He knows every single thing about what's going on and goes out of his way to learn more and research on his own. He stands behind my decisions that I have to make for me, even when they aren't the most convenient for him. He doesn't fully 'get' it of course, but I've never had to over explain myself. If I tell him, 'I'm not getting out of bed today' or 'I can't do dinner', that's it. I don't have to say anything else. He just takes over. I know I am lucky in that regard. When I've been in the hospital he's sat with me even when I was so drugged up I had no idea. He brought his laptop and worked just to be there. He earned the name Saint M a few years ago from my sister and me. It's true. I love him. He's my best friend. He makes my life better in so many ways.
I found some pictures he had from the past when I've been sick. It's from my first hospitalization. I wish I had more. I kick myself for not documenting everything more. I wish I could accurately describe how EVERYTHING becomes a big deal when you are flaring and really sick. THINKING about a shower would exhaust me. Being malnourished, anemic, your insides inflamed and dehydrated all at once is no picnic. When I needed 4 units of blood I was probably not far from death. I just kept thinking I could turn it around. I was stupid.
This first pic is Christmas morning 2009. I had lost a lot of weight in the few months. I had only gotten diagnosed the past summer and this was my first real flare. I spiralled out of control so fast. I was still working FT in pain, and getting sick 20+ times a day. Not sure how I did it. For an idea that's a girls sweatshirt size 14-16. I was small. It's actually ROOMY!
The next day I left work because I could barely stand up and was doubled over in pain. I went home and got in bed. My jello diet started. I ended up leaving my place and going to Hub's so he could take care of me. I was not good. Here's a real good shot of me falling asleep eating jello. What a wreck. Balled up in pain. I think this was the day I left for Hub's. Three days after Christmas.
Finally, we knew there was no option but the hospital. My symptoms started about a year before my first admittance. I went in through the ER but my GI had called me in ahead so I didn't actually wait. The only vital they did was BP and it was so low they stopped and raced me to a room and double IV'ed me because basically my body was going into shock. One IV in each arm. Fluids, and blood and potassium and I wish I could remember it all. I hate hospitals, but was happy it was going to be over. I seriously started thinking I might die. I was probably right. Here's me in the ER. Actually HAPPY to be there.
I was in a week with this visit. I cried a lot. I was poked nonstop I looked like a junkie when I got out. Black and blue everywhere. CT's, Xrays, and the worst was a forced water enema for an emergency colonoscopy. I cried the whole time, begging to go home. The nurses aid actually cried because I was bawling and in so much pain. This single event is why I no longer have any shame. After the water enema(the whole thing is like torture), they give you like an old person toilet chair. Just in the middle of the room. That's where you let the enema 'do it's work'. Yeah- nice huh?! Just sitting there so horrified, I think I wanted to die. I will never understand these crack pot people who do enemas or go pay to have colonics ON PURPOSE. Your couldn't pay me.
I have felt excruciating pain so many times it is ridiculous. I couldn't have anything in my system I think for 4 days. Not even ice chips, nothing. Four days. I think I may have a pretty damn good idea what starving really means. The pain is unbearable. You literally start to go crazy in hunger. Your thoughts get irrational. I was alive via IV fluids and nutrients but they kept me sedated because the stomach pain and the thirst was so bad.
Here's me about 10 days after I got discharged. Bones. You can basically see my kneecaps pointing. I was 98lbs when I got discharged.
*side note- how do these chicks get 6 pack abs. Seriously. I was 98 freaking lbs and I still didn't have killer abs. Bitches.
After my discharge I never went into remission. I was in the hospital again by July. Even after that discharge I was still sick. Since my symptoms started the end of 2008, I was never symptom free. I felt the best and had the least amount of symptoms while I was pregnant but was still losing blood daily. I needed 2 units of blood before I had Daughter #2. At some point when I'm stable and not anemic and get past a year from a transfusion I will be giving blood when I can. I've had quite a few transfusions with multiple units per transfusion. I hope one day to give it back. My blood type is B- which is one of the more rare types so I know they need it.
Holy crap this is a long post.
Ok, last thing. I took a random pic to try to see how I looked somewhat normal. The FrankenBelly is healing nicely. I still have a halfway decent belly button so it's not so bad.
I hope everyone has a great weekend. Live your life. Don't put it off until tomorrow. Don't take your health, or your good days for granted. Thanks for reading. XO
Hey out there....damn is it HOT. Hope everyone is keeping cool and enjoying their summer. I still haven't got in the pool. The insecurity is frightening. I haven't felt this uncertain about myself as a whole since the 'wonderful' awkward years of about 13-16. I'm so hyper aware of people looking at me, or noticing stuff. I'm sure it's mostly in my head but regardless... I got great new bags that are super light and conceal pretty well but getting dressed is really impossible. NOTHING works but a dress. Having to figure out how to conceal or finding something that will be comfy with the stoma just turns into too much work so I'm basically dressed like the 'People of Walmart' every day unless I absolutely have to go somewhere. So unlike me. At this point I don't care.
I've been pretty lazy this week. Just tired and the lightheadedness is still happening. I'm going to get a FULL blood work up done next week. Anything that could be contributing to it I don't have. I'm not realy anemic, I'm not dehydrated. It turns out I'm NOT hypoglycemic. My results were so low because there was a serum issue with my blood draw. I've had normal glucose levels since. I can't blame it on the heat because I barely leave the house. It's so hot, I'm too lazy and I don't feel like blacking out in public or while driving. I mean, I know that sounds super fun and everything, but I'll stick to feeling like that at home.
I always blamed my black outs and lightheadedness on my anemia in the past but I'm hoping the UC wasn't masking something else. How lucky would I be if there's something else to deal with. Jackpot! (Not a jackpot).
On that note- I just wanted to say how lucky I am to have Hubs in my life. Yes, we are married now, but when I first got sick we weren't and he was there every minute. He could have ditched me because of what a nightmare it was. He's fed me jello when I was too weak to feed myself and that's all I could eat, he's washed my hair when I was too sick and weak to do that. He's carried me upstairs when I couldn't walk. He's made me laugh hysterically when I couldn't see one bright spot in my situation. He's taken care of Daughter#1 like she's his own when I was in the hospital or too sick to do it. He loves me unconditionally even though I'm a pain in the ass and can be a bitch. He's my biggest fan and biggest support. He anchors me in the storm until it passes. He knows every single thing about what's going on and goes out of his way to learn more and research on his own. He stands behind my decisions that I have to make for me, even when they aren't the most convenient for him. He doesn't fully 'get' it of course, but I've never had to over explain myself. If I tell him, 'I'm not getting out of bed today' or 'I can't do dinner', that's it. I don't have to say anything else. He just takes over. I know I am lucky in that regard. When I've been in the hospital he's sat with me even when I was so drugged up I had no idea. He brought his laptop and worked just to be there. He earned the name Saint M a few years ago from my sister and me. It's true. I love him. He's my best friend. He makes my life better in so many ways.
I found some pictures he had from the past when I've been sick. It's from my first hospitalization. I wish I had more. I kick myself for not documenting everything more. I wish I could accurately describe how EVERYTHING becomes a big deal when you are flaring and really sick. THINKING about a shower would exhaust me. Being malnourished, anemic, your insides inflamed and dehydrated all at once is no picnic. When I needed 4 units of blood I was probably not far from death. I just kept thinking I could turn it around. I was stupid.
This first pic is Christmas morning 2009. I had lost a lot of weight in the few months. I had only gotten diagnosed the past summer and this was my first real flare. I spiralled out of control so fast. I was still working FT in pain, and getting sick 20+ times a day. Not sure how I did it. For an idea that's a girls sweatshirt size 14-16. I was small. It's actually ROOMY!
The next day I left work because I could barely stand up and was doubled over in pain. I went home and got in bed. My jello diet started. I ended up leaving my place and going to Hub's so he could take care of me. I was not good. Here's a real good shot of me falling asleep eating jello. What a wreck. Balled up in pain. I think this was the day I left for Hub's. Three days after Christmas.
Finally, we knew there was no option but the hospital. My symptoms started about a year before my first admittance. I went in through the ER but my GI had called me in ahead so I didn't actually wait. The only vital they did was BP and it was so low they stopped and raced me to a room and double IV'ed me because basically my body was going into shock. One IV in each arm. Fluids, and blood and potassium and I wish I could remember it all. I hate hospitals, but was happy it was going to be over. I seriously started thinking I might die. I was probably right. Here's me in the ER. Actually HAPPY to be there.
I was in a week with this visit. I cried a lot. I was poked nonstop I looked like a junkie when I got out. Black and blue everywhere. CT's, Xrays, and the worst was a forced water enema for an emergency colonoscopy. I cried the whole time, begging to go home. The nurses aid actually cried because I was bawling and in so much pain. This single event is why I no longer have any shame. After the water enema(the whole thing is like torture), they give you like an old person toilet chair. Just in the middle of the room. That's where you let the enema 'do it's work'. Yeah- nice huh?! Just sitting there so horrified, I think I wanted to die. I will never understand these crack pot people who do enemas or go pay to have colonics ON PURPOSE. Your couldn't pay me.
I have felt excruciating pain so many times it is ridiculous. I couldn't have anything in my system I think for 4 days. Not even ice chips, nothing. Four days. I think I may have a pretty damn good idea what starving really means. The pain is unbearable. You literally start to go crazy in hunger. Your thoughts get irrational. I was alive via IV fluids and nutrients but they kept me sedated because the stomach pain and the thirst was so bad.
Here's me about 10 days after I got discharged. Bones. You can basically see my kneecaps pointing. I was 98lbs when I got discharged.
*side note- how do these chicks get 6 pack abs. Seriously. I was 98 freaking lbs and I still didn't have killer abs. Bitches.
After my discharge I never went into remission. I was in the hospital again by July. Even after that discharge I was still sick. Since my symptoms started the end of 2008, I was never symptom free. I felt the best and had the least amount of symptoms while I was pregnant but was still losing blood daily. I needed 2 units of blood before I had Daughter #2. At some point when I'm stable and not anemic and get past a year from a transfusion I will be giving blood when I can. I've had quite a few transfusions with multiple units per transfusion. I hope one day to give it back. My blood type is B- which is one of the more rare types so I know they need it.
Holy crap this is a long post.
Ok, last thing. I took a random pic to try to see how I looked somewhat normal. The FrankenBelly is healing nicely. I still have a halfway decent belly button so it's not so bad.
I hope everyone has a great weekend. Live your life. Don't put it off until tomorrow. Don't take your health, or your good days for granted. Thanks for reading. XO
Boy, your story sounds lot like my story. Isn't this disease just So.Much.Fun?! ;)
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