Rhiloaded: Smoke And Mirrors
Me
I'm a rock 'n roll ballerina turned podcaster fighting lupus, fibromyalgia, peripheral polyneuropathy, rheumatoid arthritis. To donate please http://www.uncast.net
RHILOADED.COM
Rhi 3.0
I
thought that doing the WEGOHealth daily blog challenge was a good thing
to focus on. I had still not eaten solid foods since February, throwing
up everything including saliva and Auntie Flo would not go away. I got
weaker, blacking out started, it was getting to be 2009 all over again.
We discussed Urgent Care but I was concerned because I am not American.
Hi, this is Daniel. She started bringing up 2009 in early February, when we both caught bad flus. I didn’t brush it off but I did tell her that I doubted 2009 would be creeping back again and even so, we know that demon and we would work hard to keep her levels high so it didn’t happen again. Two months later, we’re discussing the events of this post.
Two days later, my caregivers bring me to Urgent Care. There I get blood drawn, and they come back and put an IV of potassium in me and say that I am too much at danger levels to be treated there, and I am to be transferred to Scripps Memorial Hospital.
I believe the word “Critical” was brought up at least once. They were afraid that Rhi’s heart might stop at any moment and they didn’t have the equipment to give her the care she really needed. Rhi asked if she could ride with me but they insisted on an ambulance because the potassium had to stay running in her arm.
I hear that it’s the best Hospital in the county, and I will be in good hands. A nurse shoves an orange drink in my hands and I have to drink it all. It was another form of potassium. The EMTs arrive, and I am trying to hurry and suck back this vile drink. They put me on a stretcher, and my caregivers follow the ambulance close. The ambulance went 135/mph, but didn’t have the sirens on.
I said goodbye to her from the side door and we tried our best to follow right behind the ambulance but Rhi doesn’t exaggerate. I was doing 85 and they were pulling away like I was sitting still!
I was put right into the ER around 5:45pm and stayed there for a long time. My levels checked again, had an ultrasound, and they said I was waiting on a bed. A bed? Wait, that means I’m admitted, I can’t be admitted, I’m Canadian. They asked why I didn’t go in earlier. Again I said, “I’m Canadian.” They kind of chuckled. I really had to pee but I wasn’t allowed up. They gave me a chamber pot and I said, “Dear God, I am going to electrocute myself with all these wires coming out of me!”
I had a good laugh at that joke and the nurses gave me a look like I was nuts. What? It was funny! In a very not funny situation, moments like that are really important. I headed out to dinner with Victoria and dropped her off at home before heading back to the ER. After following a guy in through the side door and a nurse through the ER doors, I snuck my way back to Rhian where we waited for her new bed.
Eventually I was transferred, and brought up to Floor 6West at about 12:10 am. I was rolled into a room. I had a private room, with a window, two guest chairs, a private toilet room, a small closet, a sink and a mirror. And the bed. The hospital bed was a cadillac. Buttons that moved things up and down, a tv remote that called the nurses and roomy enough to really relax and be comfy and to sleep well, despite nurses waking you every two hours to check vitals.
The room was pretty awesome. Small but very functional and comfortable.
Once I got up to the room, Nurse Sarah helped me get settled and she was so sweet. I had a bag of p10 mEg of potassium and 1000mls of saline and 6 potassium pills. My potassium level went from 1.8 on arrival to 2.1 by the time I was in the room. I was also given Zofram to help nausea. I was in and out of sleep.
I stayed all night, sleeping in a recliner, until 6am when I had to leave for work. RN Sarah mentioned she’d never seen potassium that low. Rhian kept down the fluids they were giving her but at this point she was still quite bad off. Even though she had a staff of nurses to watch over her, I stayed all night with her until I left for work.
Sunday, woke at 5:40 am for an EKG.
I had blood drawn from the top of my hand and Lovenox injected into my tummy to prevent clotting. I had a HIDA test, which came back clear and then an abdominal ultrasound, also inconclusive.
This was quite a busy day for a woman who still could not really stand on her own and certainly not for more than a few seconds. Lots of tests to search for all possible causes for these levels. Phospherous was low late that night and they added that with the last half of the 80 mEq of Potassium they gave her Sunday.
Monday was a busy day. Physical Therapy came to me. I made it to the recliner chair, and then she gave me some exercises to do. I walked 40 feet with the wheelchair as a walker. Everyone asked why I didn’t want a walker - it is too hard for me to maneuver, and it’s heavy. I much prefer the chair.
The Occupational Therapist was next and wanted to see how I walked to the loo, on my own. This was hard but I also had to take IVy with me. Yes, I named my IV machine. She suggested some walking aids.
I was really happy when I came in first thing in the morning to find Rhian in the Recliner, all smiles and doing her leg exercises. I watched as she shuffled 40 feet down the hall. OT was recommending dual arm canes, a shower bench vs the chair we have and perhaps a nicer wheelchair. Rhi going to the bathroom on her own was huge and it was this moment that made me realize how far she’d fallen from where she was when she first came here in January.
Social Worker worked hard on trying to see what I could do for insurance to help, she found one that deals with
pre-existing conditions so that is worth trying.
Tuesday - I had a Gastro Elimination Test - eat radioactive eggs and lie perfectly still for 90 minutes. It wasn’t that bad. Better if they let me have my ipod. They took me back upstairs but I was supposed to stay for the Swallow test. Back in bed I was set to rest, but the dietitian on the floor came to check on me and what I could eat. She put me on the pureed diet. The menu was, interesting. Beef Bourguignon with full sides - all pureed. I had pureed potatoes and apricots.
Hahaha pureed potatoes. Mashed potatoes is what they were and with some butter and salt, the bite Rhi made me eat was actually pretty good. Hospital food seems to have gotten much better since I was a kid. Also need to mention that Rhian kept dinner down as well, so this is another milestone! At this point she hasn’t thrown up since Saturday, April 7th.
I had another test, because they couldn’t see clearly my gallbladder. They thought I might have gallstones. My gallbladder has always been camera shy in ultrasounds. I had to lie down and they took pictures of my insides. I can’t remember what this was called, but with the technician, I watched the dye trying to find my insides. Turns out my gallbladder is all clear.
A clear gallbladder cleared out the possibility of surgery. Rhian was very worried and readying herself to refuse the surgery and suffer through the symptoms until she got back to Ottawa. This proposition was scaring me quite a bit and I tried as much as I could to persuade her to allow a surgery if they suggested it but I didn’t feel I was succeeding. Rhian’s quite a stubborn one when she makes her mind up.
Doctor Lugo. What a character. Very kind, fast, man with a huge smile. This man knows his stuff. Also being there, when having to explain what all I have been diagnosed with, they take it very seriously, not brushed off and not confused. Dr. Lugo wanted me to stay on the Pureed diet until the Swallow Test.
Dr Lugo WAS great. As Rhian named off her various illnesses and then allergies, he never blinked or hesitated. It almost seemed like he’d heard this story before. He mentioned this could’ve been started with a Lupus flare up that helped inflame the effects of the flu. The fact that she had started Gabapentin and her period at the same time the flare and flu happened, really made things so much worse and started the avalanche that landed her in the hospital.
He was very glad she didn’t start Tramadol and wondered why Dr Ross hadn’t simply lowered her dose of Gabapentin. Why start on 900mg a day when it would’ve been better to start at 300mg? Three 100mg pills a day would’ve been far easier on her system and may have really worked to ease her pain. He mentioned Lyrica and Rhian’s exact words were, “Uhhh I’m...really leery...about Lyrica.”
Heidi and Tammy were my nurses, I forget exactly what day it was, but they were both such angels. They constantly checked on me and so fun and gentle. Near the end of Heidi’s shift, she told me she didn’t want to see me on her next shift on Friday. She popped in on Wednesday as she was working something else, but pulled my curtain and hung out for a bit and changed my lines. It was kind of fun even.
I don’t have enough kind words for Heidi and Tammy. That is a team of teams. Both of them so friendly and attentive. Their first priority was always the point of their job (to keep Rhian’s levels steady, give her bags and medication precisely on schedule and check vitals and signs of anything negative regularly) and then came the socializing. Spectacular bedside manner and the gentle care they took in every single thing they did from changing her bags or checking vitals to putting the blanket over her when she was cold. I wish these two on all your loved ones in their times of need.
I had visitors! Jules of www.WhatTheJules.com and Karen of @WalkForTheCure on twitter,came to visit, it was great to see them and it was really fun. They gave the Nurse of the day some fun hell. But it’s nice having visitors, but it is wonderful when they are also Chronically Awesome.
I also had an alarm on my bed in case I tried to get up on my own. The nurses had to help me at all times, while even my Caregivers could not. It is still quite degrading, needing so much help, to walk to pull my hospital gown up and hospital pants down.
Even at home, in the privacy of our bathroom and with the door shut, she was still so embarrassed about every single part of the process. This is a very independent person, so used to doing everything on her own and if anything, doing things for others...not the other way around. She is very uncomfortable making anyone go out of their way for her, so while the last two weeks were hard enough, asking strangers for the same help was even harder. I saw this and I did my best to help whenever I was there and allowed but it’s still so very hard.
Dr Lugo flew in, my levels look good. He asked me if I was willing to have a blood transfusion. YES PLEASE!!!
They started the process right away. He had to call the blood bank, order the bags, have the head nurse - Greg - pick them up, while the blood bank came to take a few vials of my blood to the lab.
Greg. Yes Greg. I can’t say I’ve heard quite enough about cute darling hot sexy unbelievably adorable Greg. OK, I’ll admit it, he’s kinda hot but he’s also a pretty good nurse. I’ve never seen a blood transfusion started and so I was pretty interested both to make sure all was well with Rhian and also out of my own curiosity. This is pretty cool!
New ID bracelet with stickers for each bag of blood to make sure they matched, new IV site, and another BP check. My blood pressure was super low, under 100 most of the week. I broke 100 twice perhaps.
Man, that IV Location was so sweet. The last 3-4 days that IV machine alarm would go off if Rhian breathed wrong. Every shift or movement would set it off. This new IV location...maybe once and that’s mentioned below.
4:00 pm - the pump was blocked. Nurse Greg was super excited because this was his first transfusion.
Hey look how cute Greg is! He’s so excited, I could pinch his cheeks!
Thursday
Was woken up twice for vitals and another EKG. Woke at 7ish because I was just up and awake.
8:00 am - Breakfast of Champions - pureed pineapple and peaches, and French Vanilla Yogurt. I am allergic to Vanilla and they had all that information.
That damn kitchen lady never got the order right the first time. She included chicken broth one time and when told Rhian was allergic, brought turkey broth. ALL POULTRY, stupid! Then she asks me one day if she can have cranberry. She’s allergic to tannins. That means no berries! None! Now the vanilla. We all just shook our heads and ate her yogurt.
The OT returned and wanted to see me go to the loo. I just went right before, on my own. I was just about to have a Whore-In-A-Teacup so she wanted to see how I bathe when I can’t have a full on shower. She was pretty impressed with how I can manage that and get fully clean.
I’ve always been amazed at this too, to be honest. I always thought, “no way you can clean yourself well with just a damp soapy rag and some baby wipes.” Sure enough, you really can. Not the ideal way to have a bath but you do what you can with what you have and Rhian is a master at that. I just really wish it wasn’t a skill learned from practice out of necessity.
More bags for the IV, adding folic acid and magnesium.
Dr. Lugo came in and told me I need a Gatorade a day, my levels are good, and he will give me prescriptions for Anti-Nausea, Folic Acid, a brand of Pepcid to take before Lyrica. Yes Lyrica. Dr. Lugo instructed the Nurses to give me Lyrica 3 times a day, and I am to continue that. I am hoping I will be able to because there is such a difference.
Yeah we’ve all been very skeptical of Lyrica due to the TV commercials and some things we’d heard online from former users. Sure enough, it works! It’s not killing a ton of the pain yet but it’s enough to notice and the side effects have so far been non-existent which is strange because Rhian tends to have at least ONE side effect to almost every medication she takes.
Dr. Lugo said he would discharge me that day.
A day out of the hospital, and I feel so much better. I even ate a full meal, and kept it down. That is so exciting.
The Lyrica is surprising. That is that I pretty much can walk on my own, but when I need the next dose it is very apparent. I am still having a bit of trouble getting up from sitting, but that will come once I get more physio under my PJs, and get all the stronger.
It really is amazing what Rhian can do now that she couldn’t do for the last 2 weeks and in many ways, the last two months. I didn’t truly appreciate the importance of taking medication on time until tonight, when right at the 6 hour mark, it became very apparent that Rhian needed her next dose. Every step brought burning slicing pain that I hope will improve as she starts to do her physical therapy a few times every day. The “stitches” and “Sliced in half” feeling in her stomach has not really improved very much but we’re optimistic that by eating soft foods, veggies and keeping her levels steady, the pain will subside and it will become easier to stand, sit and climb stairs.
I even went swimming yesterday, real swimming, not just bouncing around in water. It was amazing, I can do anything in the water. It was so nice. Did some physio in the water, and swam some gradual laps. Even did a dance move - the Scorpion!
It was so great to see her in the pool! Last year we learned that the pool is very much like a miracle spring. She can walk, swim, dance and play in the pool. She still isn’t 100% in the pool and afterwards, the toll all that exercise takes on her body is definitely apparent but for those few minutes, it’s like she’s getting herself back.
I am pretty bruised up, and my tummy feels like razors are slicing me in half from the daily injections. But THIS is the hope that I have. I will need lots of rest and recovery, but I am stronger, and imagine how I am now compared to when I went in last week.
Never know what a week will do. And great bedside manners. And knowledge. And kindness.
Hi, this is Daniel. She started bringing up 2009 in early February, when we both caught bad flus. I didn’t brush it off but I did tell her that I doubted 2009 would be creeping back again and even so, we know that demon and we would work hard to keep her levels high so it didn’t happen again. Two months later, we’re discussing the events of this post.
Two days later, my caregivers bring me to Urgent Care. There I get blood drawn, and they come back and put an IV of potassium in me and say that I am too much at danger levels to be treated there, and I am to be transferred to Scripps Memorial Hospital.
I believe the word “Critical” was brought up at least once. They were afraid that Rhi’s heart might stop at any moment and they didn’t have the equipment to give her the care she really needed. Rhi asked if she could ride with me but they insisted on an ambulance because the potassium had to stay running in her arm.
I hear that it’s the best Hospital in the county, and I will be in good hands. A nurse shoves an orange drink in my hands and I have to drink it all. It was another form of potassium. The EMTs arrive, and I am trying to hurry and suck back this vile drink. They put me on a stretcher, and my caregivers follow the ambulance close. The ambulance went 135/mph, but didn’t have the sirens on.
I said goodbye to her from the side door and we tried our best to follow right behind the ambulance but Rhi doesn’t exaggerate. I was doing 85 and they were pulling away like I was sitting still!
I was put right into the ER around 5:45pm and stayed there for a long time. My levels checked again, had an ultrasound, and they said I was waiting on a bed. A bed? Wait, that means I’m admitted, I can’t be admitted, I’m Canadian. They asked why I didn’t go in earlier. Again I said, “I’m Canadian.” They kind of chuckled. I really had to pee but I wasn’t allowed up. They gave me a chamber pot and I said, “Dear God, I am going to electrocute myself with all these wires coming out of me!”
I had a good laugh at that joke and the nurses gave me a look like I was nuts. What? It was funny! In a very not funny situation, moments like that are really important. I headed out to dinner with Victoria and dropped her off at home before heading back to the ER. After following a guy in through the side door and a nurse through the ER doors, I snuck my way back to Rhian where we waited for her new bed.
Eventually I was transferred, and brought up to Floor 6West at about 12:10 am. I was rolled into a room. I had a private room, with a window, two guest chairs, a private toilet room, a small closet, a sink and a mirror. And the bed. The hospital bed was a cadillac. Buttons that moved things up and down, a tv remote that called the nurses and roomy enough to really relax and be comfy and to sleep well, despite nurses waking you every two hours to check vitals.
The room was pretty awesome. Small but very functional and comfortable.
Once I got up to the room, Nurse Sarah helped me get settled and she was so sweet. I had a bag of p10 mEg of potassium and 1000mls of saline and 6 potassium pills. My potassium level went from 1.8 on arrival to 2.1 by the time I was in the room. I was also given Zofram to help nausea. I was in and out of sleep.
I stayed all night, sleeping in a recliner, until 6am when I had to leave for work. RN Sarah mentioned she’d never seen potassium that low. Rhian kept down the fluids they were giving her but at this point she was still quite bad off. Even though she had a staff of nurses to watch over her, I stayed all night with her until I left for work.
Sunday, woke at 5:40 am for an EKG.
I had blood drawn from the top of my hand and Lovenox injected into my tummy to prevent clotting. I had a HIDA test, which came back clear and then an abdominal ultrasound, also inconclusive.
This was quite a busy day for a woman who still could not really stand on her own and certainly not for more than a few seconds. Lots of tests to search for all possible causes for these levels. Phospherous was low late that night and they added that with the last half of the 80 mEq of Potassium they gave her Sunday.
Monday was a busy day. Physical Therapy came to me. I made it to the recliner chair, and then she gave me some exercises to do. I walked 40 feet with the wheelchair as a walker. Everyone asked why I didn’t want a walker - it is too hard for me to maneuver, and it’s heavy. I much prefer the chair.
The Occupational Therapist was next and wanted to see how I walked to the loo, on my own. This was hard but I also had to take IVy with me. Yes, I named my IV machine. She suggested some walking aids.
I was really happy when I came in first thing in the morning to find Rhian in the Recliner, all smiles and doing her leg exercises. I watched as she shuffled 40 feet down the hall. OT was recommending dual arm canes, a shower bench vs the chair we have and perhaps a nicer wheelchair. Rhi going to the bathroom on her own was huge and it was this moment that made me realize how far she’d fallen from where she was when she first came here in January.
Social Worker worked hard on trying to see what I could do for insurance to help, she found one that deals with
pre-existing conditions so that is worth trying.
Tuesday - I had a Gastro Elimination Test - eat radioactive eggs and lie perfectly still for 90 minutes. It wasn’t that bad. Better if they let me have my ipod. They took me back upstairs but I was supposed to stay for the Swallow test. Back in bed I was set to rest, but the dietitian on the floor came to check on me and what I could eat. She put me on the pureed diet. The menu was, interesting. Beef Bourguignon with full sides - all pureed. I had pureed potatoes and apricots.
Hahaha pureed potatoes. Mashed potatoes is what they were and with some butter and salt, the bite Rhi made me eat was actually pretty good. Hospital food seems to have gotten much better since I was a kid. Also need to mention that Rhian kept dinner down as well, so this is another milestone! At this point she hasn’t thrown up since Saturday, April 7th.
I had another test, because they couldn’t see clearly my gallbladder. They thought I might have gallstones. My gallbladder has always been camera shy in ultrasounds. I had to lie down and they took pictures of my insides. I can’t remember what this was called, but with the technician, I watched the dye trying to find my insides. Turns out my gallbladder is all clear.
A clear gallbladder cleared out the possibility of surgery. Rhian was very worried and readying herself to refuse the surgery and suffer through the symptoms until she got back to Ottawa. This proposition was scaring me quite a bit and I tried as much as I could to persuade her to allow a surgery if they suggested it but I didn’t feel I was succeeding. Rhian’s quite a stubborn one when she makes her mind up.
Doctor Lugo. What a character. Very kind, fast, man with a huge smile. This man knows his stuff. Also being there, when having to explain what all I have been diagnosed with, they take it very seriously, not brushed off and not confused. Dr. Lugo wanted me to stay on the Pureed diet until the Swallow Test.
Dr Lugo WAS great. As Rhian named off her various illnesses and then allergies, he never blinked or hesitated. It almost seemed like he’d heard this story before. He mentioned this could’ve been started with a Lupus flare up that helped inflame the effects of the flu. The fact that she had started Gabapentin and her period at the same time the flare and flu happened, really made things so much worse and started the avalanche that landed her in the hospital.
He was very glad she didn’t start Tramadol and wondered why Dr Ross hadn’t simply lowered her dose of Gabapentin. Why start on 900mg a day when it would’ve been better to start at 300mg? Three 100mg pills a day would’ve been far easier on her system and may have really worked to ease her pain. He mentioned Lyrica and Rhian’s exact words were, “Uhhh I’m...really leery...about Lyrica.”
Heidi and Tammy were my nurses, I forget exactly what day it was, but they were both such angels. They constantly checked on me and so fun and gentle. Near the end of Heidi’s shift, she told me she didn’t want to see me on her next shift on Friday. She popped in on Wednesday as she was working something else, but pulled my curtain and hung out for a bit and changed my lines. It was kind of fun even.
I don’t have enough kind words for Heidi and Tammy. That is a team of teams. Both of them so friendly and attentive. Their first priority was always the point of their job (to keep Rhian’s levels steady, give her bags and medication precisely on schedule and check vitals and signs of anything negative regularly) and then came the socializing. Spectacular bedside manner and the gentle care they took in every single thing they did from changing her bags or checking vitals to putting the blanket over her when she was cold. I wish these two on all your loved ones in their times of need.
I had visitors! Jules of www.WhatTheJules.com and Karen of @WalkForTheCure on twitter,came to visit, it was great to see them and it was really fun. They gave the Nurse of the day some fun hell. But it’s nice having visitors, but it is wonderful when they are also Chronically Awesome.
I also had an alarm on my bed in case I tried to get up on my own. The nurses had to help me at all times, while even my Caregivers could not. It is still quite degrading, needing so much help, to walk to pull my hospital gown up and hospital pants down.
Even at home, in the privacy of our bathroom and with the door shut, she was still so embarrassed about every single part of the process. This is a very independent person, so used to doing everything on her own and if anything, doing things for others...not the other way around. She is very uncomfortable making anyone go out of their way for her, so while the last two weeks were hard enough, asking strangers for the same help was even harder. I saw this and I did my best to help whenever I was there and allowed but it’s still so very hard.
Dr Lugo flew in, my levels look good. He asked me if I was willing to have a blood transfusion. YES PLEASE!!!
They started the process right away. He had to call the blood bank, order the bags, have the head nurse - Greg - pick them up, while the blood bank came to take a few vials of my blood to the lab.
Greg. Yes Greg. I can’t say I’ve heard quite enough about cute darling hot sexy unbelievably adorable Greg. OK, I’ll admit it, he’s kinda hot but he’s also a pretty good nurse. I’ve never seen a blood transfusion started and so I was pretty interested both to make sure all was well with Rhian and also out of my own curiosity. This is pretty cool!
New ID bracelet with stickers for each bag of blood to make sure they matched, new IV site, and another BP check. My blood pressure was super low, under 100 most of the week. I broke 100 twice perhaps.
Man, that IV Location was so sweet. The last 3-4 days that IV machine alarm would go off if Rhian breathed wrong. Every shift or movement would set it off. This new IV location...maybe once and that’s mentioned below.
4:00 pm - the pump was blocked. Nurse Greg was super excited because this was his first transfusion.
Hey look how cute Greg is! He’s so excited, I could pinch his cheeks!
Thursday
Was woken up twice for vitals and another EKG. Woke at 7ish because I was just up and awake.
8:00 am - Breakfast of Champions - pureed pineapple and peaches, and French Vanilla Yogurt. I am allergic to Vanilla and they had all that information.
That damn kitchen lady never got the order right the first time. She included chicken broth one time and when told Rhian was allergic, brought turkey broth. ALL POULTRY, stupid! Then she asks me one day if she can have cranberry. She’s allergic to tannins. That means no berries! None! Now the vanilla. We all just shook our heads and ate her yogurt.
The OT returned and wanted to see me go to the loo. I just went right before, on my own. I was just about to have a Whore-In-A-Teacup so she wanted to see how I bathe when I can’t have a full on shower. She was pretty impressed with how I can manage that and get fully clean.
I’ve always been amazed at this too, to be honest. I always thought, “no way you can clean yourself well with just a damp soapy rag and some baby wipes.” Sure enough, you really can. Not the ideal way to have a bath but you do what you can with what you have and Rhian is a master at that. I just really wish it wasn’t a skill learned from practice out of necessity.
More bags for the IV, adding folic acid and magnesium.
Dr. Lugo came in and told me I need a Gatorade a day, my levels are good, and he will give me prescriptions for Anti-Nausea, Folic Acid, a brand of Pepcid to take before Lyrica. Yes Lyrica. Dr. Lugo instructed the Nurses to give me Lyrica 3 times a day, and I am to continue that. I am hoping I will be able to because there is such a difference.
Yeah we’ve all been very skeptical of Lyrica due to the TV commercials and some things we’d heard online from former users. Sure enough, it works! It’s not killing a ton of the pain yet but it’s enough to notice and the side effects have so far been non-existent which is strange because Rhian tends to have at least ONE side effect to almost every medication she takes.
Dr. Lugo said he would discharge me that day.
A day out of the hospital, and I feel so much better. I even ate a full meal, and kept it down. That is so exciting.
The Lyrica is surprising. That is that I pretty much can walk on my own, but when I need the next dose it is very apparent. I am still having a bit of trouble getting up from sitting, but that will come once I get more physio under my PJs, and get all the stronger.
It really is amazing what Rhian can do now that she couldn’t do for the last 2 weeks and in many ways, the last two months. I didn’t truly appreciate the importance of taking medication on time until tonight, when right at the 6 hour mark, it became very apparent that Rhian needed her next dose. Every step brought burning slicing pain that I hope will improve as she starts to do her physical therapy a few times every day. The “stitches” and “Sliced in half” feeling in her stomach has not really improved very much but we’re optimistic that by eating soft foods, veggies and keeping her levels steady, the pain will subside and it will become easier to stand, sit and climb stairs.
I even went swimming yesterday, real swimming, not just bouncing around in water. It was amazing, I can do anything in the water. It was so nice. Did some physio in the water, and swam some gradual laps. Even did a dance move - the Scorpion!
It was so great to see her in the pool! Last year we learned that the pool is very much like a miracle spring. She can walk, swim, dance and play in the pool. She still isn’t 100% in the pool and afterwards, the toll all that exercise takes on her body is definitely apparent but for those few minutes, it’s like she’s getting herself back.
I am pretty bruised up, and my tummy feels like razors are slicing me in half from the daily injections. But THIS is the hope that I have. I will need lots of rest and recovery, but I am stronger, and imagine how I am now compared to when I went in last week.
Never know what a week will do. And great bedside manners. And knowledge. And kindness.
10 things - Day 13 #HAWMC
10 Things I cannot live without
1. Love
2. Laughter
3. Music
4. Pretty things
5. to be safe
6. comfort
7. ability to see doctors
8. phone
9. internet
10. Friends
WEGO Health Day 12 - #HAWMC
"Stream of Consciousness Day."
Today I looked into the mirror and I couldn't wait to get out of the bathroom. That in itself is quite the production of late.
Waiting. It's a hard thing but I think I mostly accepted it now. As a super busy on the go woman, waiting is not something I did. I wasn't impatient, just move move move.
Now, I wait. I wait for help. I wait for people to come home. Sometimes I have to wait to pee. I wait at endless doctors' offices, for tests to be over, wait for fun times to happen, wait for results.
It is something I have learned to do. Again, I am not impatient, I find myself waiting for life.
I am waiting for that magic day to arrive when I can do things for myself. For others, to not feel so bad.
I have my ipod, and books and company as I wait for appointments. I wait to get appointments and wait longer for specialists.
Part of being sick is learning how to master The Waiting Game.
WEGO Health Day 11 - Theme Song - #HAWMC
I have many theme songs, depending on the day however pertaining to this blog I have chosen Bif Naked's "Sick". She is a Canadian rocker who battled her own health turmoil. She is writing it to and for all kinds of illnesses.
5 years ago today I received the diagnosis and was told I had 2-10 years to live. I honestly never thought I would make it to the halfway point. No idea what is coming next but who does?
*Warning, some images in the video have fast flashy lights*
WEGO #HAWMC Post Day 10 - Dear 16 year old me,
Today is so exciting! You are competing yet again, have all the usuals, eat well, lots of water, don't get make up on your costumes - you know all this. Head's up though, during the large tap group number, you will fracture your ankle on stage in the floor part. Make sure you pack tensor bandages and ice packs too. Don't worry, you will plow through it with a smile on your face as you always do, but you will be upset thinking you ruined it for everyone. Guess what? Noone in the audience will notice! It's gonna hurt alot after and there will be tears, you'll be in that brace for over a year. Your dance exams are coming too, but they'll be worked out by BATD to make sure you get what you need. You've been Highly Commended status all this way right?
This incident today is very telling how you walk through life. You have already been through alot and you have survived. You will face a very hard journey ahead. You will go through very hard and dark times but keep people close to you that are good, don't waste your time on the bad ones. Keep going, it's what you do, but try not to put so much pressure on yourself. I know I know, 'perfectionist', but the pressure is far worse. Trust in yourself, and your ability to be strong because how you fight for others right now - you will be in the fight for your life. And what happens? Yes, still pressure, the need for perfection, the crushing blows, and somehow, like you always do, you rise up again and smile.
Believe in YOU. You are something special. Don't you hear that at every competition?
We're in for a ride honey, trust and love.
WEGO Day 9 "Keep Calm and Carry On"
"Create your own Keep Calm and Carry On"
These are words that are very important to me, and what I strive for. Especially being chronically ill, we need to adapt how we go about each one.
Live - Sure, sounds obvious but really, and some days it is hard for me to remind myself of it. Some days I want it all done, but somehow I keep pulling out and going day to day.
Love - We all need love. We need to show it to those that love us, and express it as often as we can. Someone you love doesn't want to hear it 50 times a day? Too bad, they will get it knocked into their skulls one day.
Laugh - I am very lucky to be surrounded by hilarious people. The act of laughing also has it's benefits to the body but also the soul. Seek out what makes you laugh especially on hard days. Call a funny friend. Watch something silly. Watch kittens in a youtube spiral, whatever gets your giggling.
Dream - We all need to dream. Keep the dreams alive - they will have to be altered, but it important to dream. Dreams also can rest your soul, but to dream about future is important too.
Dance - From ballerina to wheelchair, why did I include this? Dance has been so important in my life. Yes it is devastating to not be able to do it, but it is still inside me. I can chair dance. I can finger dance. I can't do what I used to but damnit, I am STILL me.
So who wants a t-shirt?
Live - Sure, sounds obvious but really, and some days it is hard for me to remind myself of it. Some days I want it all done, but somehow I keep pulling out and going day to day.
Love - We all need love. We need to show it to those that love us, and express it as often as we can. Someone you love doesn't want to hear it 50 times a day? Too bad, they will get it knocked into their skulls one day.
Laugh - I am very lucky to be surrounded by hilarious people. The act of laughing also has it's benefits to the body but also the soul. Seek out what makes you laugh especially on hard days. Call a funny friend. Watch something silly. Watch kittens in a youtube spiral, whatever gets your giggling.
Dream - We all need to dream. Keep the dreams alive - they will have to be altered, but it important to dream. Dreams also can rest your soul, but to dream about future is important too.
Dance - From ballerina to wheelchair, why did I include this? Dance has been so important in my life. Yes it is devastating to not be able to do it, but it is still inside me. I can chair dance. I can finger dance. I can't do what I used to but damnit, I am STILL me.
So who wants a t-shirt?
What's in a word? WEGO Health Day 8
The best conversation I had this week?
This is tough because it's been a hard week, so it's been lots ouches and a few tears along the way.
If I were to pick one good conversation it was something that was hilarious to us, however it was very inappropriate so that I probably shouldn't post it.
I will leave that to the podcasts we do
How's that for a teaser
The Little Things #HAWMC WEGO Post Day 7
When you are sick, perhaps you miss a week, some work, some fun and let the world rotate without you for a while before joining the rat race again.
When you are chronically sick, it is very very easy to want to fade away. We often are unable to work, can be in bed for days or months or years, require help to do the simple things - cook, bathe, pee. It is hard not let go of parts of your own dignity.
Using a phone is hard physically sometimes. It just hurts. I never want to feel like a burden but I do often get the feeling I will be forgotten, or just brushed aside.
It is important to have people around you that are gentle, kind, slow if you need to be, but also getting a note that says "I'd love to come visit, do you need anything?" is wonderful. I still matter! I AM still me!
These very little things and more make such a difference. It adds us back into the world even though - often for me- I have thoughts of how useless I am, how dependent, what I've lost. And this spiral continues down. Unless you live with me you won't see the depths of how bad bad is.
I keep trying. Somehow I always find that rope and pull myself up - with help from people in my life of course. I couldn't go through all of this alone.
Again, thank you. And thank you for the little things too, a little nice word, bringing a box of kleenex closer, bendy straws, sharing music, laughs.
We are alive, we are sick, but we are still here.
Sister Moon - #HAWMC WEGO Post Day 5 - Ekphrasis
"Today’s challenge is one for the eyes. Go to flickr.com/explore.
The webpage automatically generates a random photo (or you can refresh
your page to see a new photo). Look at the image…the color, composition,
style, details, location. What feelings does this evoke in you? Are you
reminded of anything significant in your life? Can you imagine yourself
in the photo? Can you relate the image back to your health topic?"
When I was little, I was afraid of the moon. I felt like the moon was watching my every move, ready to judge me. Very slowly, I decided I should try to talk to the moon. See what she was really like and maybe we could be friends.
She kept watch over me on sleepless nights, she heard all my dreams and wishes. She became like a protective sister or mother figure. We have this understanding, the moon and I.
As it turns out, she wasn't judging at all. She checks in in her gentle luminescence. We still have our chats, and of course wishes and dreams change but it's never been for a new car or lottery win - usually it was for others.
When I got really sick, I didn't see the sun, I saw the moon. The nighttime always felt a little better - that moment of PEACE. The world goes to sleep with a heavy sigh, and it is me with the night. The moon has her job to do, but she is still always there. A beacon of gentleness, hope, renewal is coming. My body can relax just a little bit for tomorrow's fight.
When I was little, I was afraid of the moon. I felt like the moon was watching my every move, ready to judge me. Very slowly, I decided I should try to talk to the moon. See what she was really like and maybe we could be friends.
She kept watch over me on sleepless nights, she heard all my dreams and wishes. She became like a protective sister or mother figure. We have this understanding, the moon and I.
As it turns out, she wasn't judging at all. She checks in in her gentle luminescence. We still have our chats, and of course wishes and dreams change but it's never been for a new car or lottery win - usually it was for others.
When I got really sick, I didn't see the sun, I saw the moon. The nighttime always felt a little better - that moment of PEACE. The world goes to sleep with a heavy sigh, and it is me with the night. The moon has her job to do, but she is still always there. A beacon of gentleness, hope, renewal is coming. My body can relax just a little bit for tomorrow's fight.
Why do I write about my illnesses? Day 4 - WEGOHealth
I decided to blog about my health experiences from a friend. The very first entry is very telling. I don't remember writing along the way, and I never intended to publish is, yet I shared my story with a few people. The more that heard it, the more encouragement I received and as disjointed and all over that first post it - there is a reason for it. It reads as chaos, which is what I was going through in my personal hell.
I am a very open person, blunt and I don't tend to sugar coat the truth. With AutoImmune diseases especially, there needs to be more voices saying yes - this does exist and yes it IS serious.
I am just but one more adding to the voices - there is so much misunderstanding and misinformation still all over the place - the fight for our lives needs to be pushed to the forefront too.
If in some way I can educate, just a little bit - I am happy. Offering a peek into my life if you want to see it. Thank you for all the support along the way.
I am a very open person, blunt and I don't tend to sugar coat the truth. With AutoImmune diseases especially, there needs to be more voices saying yes - this does exist and yes it IS serious.
I am just but one more adding to the voices - there is so much misunderstanding and misinformation still all over the place - the fight for our lives needs to be pushed to the forefront too.
If in some way I can educate, just a little bit - I am happy. Offering a peek into my life if you want to see it. Thank you for all the support along the way.
