I haven’t blogged since I had my biopsy. It’s been a very difficult journey and emotionally draining.
I was supposed to be admitted to the hospital the night before my trip via ambulance out of town. Everything changed just hours before I was to go.
I got a phone call and told that they didn’t have a bed for me and do I want to sleep at home and come in early in the am. I would then be picked up by the ambulance at 8:30 am. What?! I had a 5 hour journey, have to be there for noon. How will I make it if I’m only being picked up at 8:30??
They then informed me I was being flown. Being flown was good but last I heard I wasn’t so I was confused. Things changed and they didn’t tell me.
Anyway I agreed to sleep at home.
I get up at 5:30 am Monday morning and head into the hospital for 7:30. I arrive and no one knows what’s going on. No one knows where I’m supposed to go or if anything has been arranged. How scary and frustrating.
After a lot of scrambling they figure out who I am and where I’m supposed to go. I have a bed in the holding area to wait for pick up.
While waiting for pick up I was supposed to have blood work done. They forgot. So about a min. before the EMT’s arrive to pick me up I ask the nurse about the blood work. She’s like oh no I didn’t realize. Then I have the ambulance guys there waiting for me while I wait for the lab to come and take my blood. Sigh…
All that gets done and I’m finally taken for transport. The EMT’s are phenomenal.
I needed to have an I.V. put in. To make a long story short they struggled. Really struggled. After three blown veins I talked them into trying one more time. I wanted to be drugged. lol One of them agreed to try again. He finally got it in. He then told me he was new to doing this and it was his biggest fear having so much trouble. He had his nurse mother in his head very disappointed with him. I asked him why. He had just faced his biggest fear and succeeded. He should be proud. So a lot of blood and some very sore arms later I was finally drugged and happy to be.
Now we’re on the road to the airport. We get there and the plane is not ready for us and we’re already running late. They had to add more fuel since we also had to land part way and pick up a second patient. So two of us patients on stretchers on this plane.
We’re finally on our way and all is smooth sailing. Arriving at the airport, I’m picked up by two more EMT’s. One is harsh. I called him on it and learned it’s his culture. In his culture if a person is smiling they are considered insane. Wow! Anyway he smiled and became the nicest man ever. It was a good learning curve for me.
So now where at the out of town hospital. We get in and no one knows where I’m supposed to go. We are really late and we were sent all over the hospital, to different floors and back again. They finally figured it out.
So now I’m left in the care of a nurse and it’s time to get in a gown. It’s not long before I’m taken for the biopsy. I was terrified. Crying and shaking at this point. I’m also exhausted, hungry and dehydrated. I had to go without food or water.
I talked them into drugging me more before the biopsy. And then it’s done. I’m in recovery for a short time and wheeled to another floor.
On that floor I had a great nurse who took really good care of me. I was feeling pain pretty quickly and she was on top of it. I didn’t even have to ask. My back injury was hurting more then it had been too but I just pushed that off as the biopsy pain.
I had made and brought my own lunch with me and a good thing I did or I wouldn’t have had any food except a few arrow root cookies.
So all is pretty good until the second shift started and that awesome nurse went home.
Prior to her going home she had given me some IV morphine. Now I started to get nauseous. Enter second shift who ignored my warnings that I was really sick.
By this time it was evening and no food offered and no water. First shift had given me Gingerale.
I should mention during all this my GP had already stood me up twice and my Nephrologist never showed up at all to check on me.
So back to being nauseous. I kept telling them I feel really sick. They didn’t listen.
Too add more to the madness the ambulance was scheduled to come and get me at 6:30 pm. They did not come. There were a lot of calls made and confusion going on again.
It’s now passed dinner time and later into the evening. Still no food and still sick.
Now the area I’m in is closing down and all the nurses left to another area and I was all alone with a call bell.
Still no food or water offered and still sick.
Then feeling sick went to I’m going to hurl now! I called and I told those nurses off. I’m sick, it’s late, I haven’t been offered food or water. I’m in pain.
The nurse responded to me saying, “You could have asked.” I was mad at this point. I said I did ask and I did tell you I’m sick.
Finally scrambling again they give me IV Zofran that’s supposed to help with the sick. Then she gives me IV morphine. I asked if the Zofran would help with the morphine making me sick. She said yes. Okay fine.
I was told I get no dinner because I’m an outpatient but I could go to the cafeteria. This just after they told me not to get out of bed alone and being really sick.
So no food.
And the Zofran didn’t help much.
Now we’re at 10 pm and no ambulance dudes. The area I’m in is completely shut down now and the nurses are getting ready to go home.
10:30 pm the ambulance arrives. The said they were lost and looking for me all day. What? They were only scheduled for 6:30 pm. I don’t think that they were looking for me all day. And they could have called for directions which they’d already been given more then once. Anyway I’m finally wrapped up and wheeled to the ambulance.
Then from there I’m finally loaded on the plane. Still feeling very sick.
It’s not long before we’re off. By this time I had been asked by many staff if I’m being admitted to the hospital when I get back. Umm…I don’t know I thought that you’d know. No one knew.
So we’re in the air and I’m feeling sick but was able to sleep for some of the trip. I’m guessing about half way the turbulence got bad and was for the rest of the flight. I’m so glad I was drugged or I would have been freaking out.
Now the wheels are down and we’re headed in for a landing. I wake up and yell, that I’m going to be sick now! Two attendants unbuckle their seat belts as fast as they can while I’m gagging. They grab a garbage can and get it under me just in the nick of time. I was violently hurling as we were coming in for a landing. Not too embarrassing at all.
So we finish with that and I’m taken off the plane to a bunch of ambulance peeps smiling. I looked at them and said you heard right?!
They laughed. They were great.
They take over to wheel me into the hospital. They again ask if I’m going home or staying. I have no idea. It’s 1:30 am by this time. I’ve hardly slept and still no food. I asked an ambulance dude for some saltine crackers to keep from getting sick again. He got a bunch.
Anyway after more confusion it was decided I was staying the night. I was relieved. I don’t think I could have handled another half hour drive home in a truck.
So I get set up in a bed in the holding area for the night.
Part way through I was in pain again. I asked the nurse for something. She had to page my doc to get me something. As usual my GP never responded to the page. So I went the rest of the night and into the morning in pain. I used the call bell in the am to ask what happened to getting something for pain. The nurse felt so bad that the Dr. hadn’t gotten back to her that she put herself on the line and told me to take one of the Perocette I had brought with me. Bless her.
A bit later I told her I hadn’t had any food in a very long time and I threw up whatever I had so could I get some breakfast. She said she had ordered me breakfast. Bless her again!
The doc was supposed to show up to discharge me. He didn’t. The nurse put in a call and the Dr. discharged me over the phone. Nice.
So I call Mr. CrankyPants from work to come and take me home. Yay I’m finally going home.
I got home, took my time unpacking all my stuff then went to bed and crashed for three sweet hours.
A small break before…
I wake up and my thigh is totally numb and I now have excruciating nerve pain. What the hell is happening now?!
This post is very long I know. So I will continue the rest of this story on the next post. It gets crazier.
Stop the madness & Sunny Days,
I met with my Nephrologist yesterday (Tues. Oct 16/18). She said my kidneys are dumping out of control amounts of protein and a lot of blood. The night before my appointment, it came up on the “My Chart” site that she had scheduled the biopsy for next Wed. at 7 am for me as an out patient with no transport. Umm…Let’s just say that was the straw that broke the camels back. I had a complete meltdown. Probably long over due. I needed a good cry. I don’t cry often but when I do I can’t even stand up. I’m thankful Mr. CrankyPants grabbed me.
Fast forward to the meeting with the doc. She said her assistant scheduled that and she won’t even be there that day and she wants me in sooner. She will have me admitted to the hospital and transported via ambulance. She said she wanted to admit me to the hospital Sunday evening and have me transported early Monday morning. I’d have the biopsy done and transported back the same day. WHAT?! So a bad back, a biopsy that causes a significant amount of pain, and 10 hours of transport. Ummm…we’ll have to talk about that further. I find it strange she’d send me back same day given the last conversation I had with her where a biopsy was talked about, she said she doesn’t like out of town patients traveling home the same day lest there be complications.
She still has not called me back. It’s Wed. night now and I haven’t heard what the hell is going on. She’s left me sitting on pins and needles and I’m a
little a lot frustrated. She’s the one alarmed, and wanting me in asap yet she’s not getting back to me. She’ll be away as of Wed. for three days.
I will be calling them tomorrow to find out what’s happening. Talk about extra stress I really don’t need right now.
Add in I found out she is refusing to put me out for this procedure. My fear is extreme to say the least with medical anything let alone a giant needle stuck in my back through my kidney. She’s willing to give me local anesthetic, some Ativan which won’t touch my fear and something for pain. The local only freezes your skin not your kidney. I have to be awake for this. Someones’going to get hurt. lol. Well I guess it’s me. All I wanted was to be given enough of something so that I don’t care what’s happening. For me with this kind of fear Ativan is like eating a sugar pill.
And… I did have to have the “I’m not taking Prednisone” conversation with her. It’s their first line of treatment. I took a hard stand. She said she would bring it up again, but if my stance is still the same, then she will have to get creative. I thought good, get creative. Maybe she will learn something that will save me and others from that horrible drug. I can’t wrap my head around how they script such a dangerous, damaging drug like that so freely yet are so closed minded to medical marijauna, which by the way in now legal here in Canada as of today. Well the recreational form. Medical was already legal.
Anyway, I just wanted to be very clear with her from the beginning that Prednisone is off the table as an option for me so I’m not constantly hounded about it. It sounds like I still will be regardless. I’m so serious that even it if meant life and death I wouldn’t take it. Keep me comfortable and I’ll choose quality of life over taking it if it ever comes to that. And it could.
I hope tomorrow that I will actually know what’s going on. This past week has been so very stressful.
I also had another specialist appointment today with an ENT. I was sent for blood work testing for allergies and sjogrens. Thankfully he was really decent to me. Online he has a bad reputation but I had no problems with him at all. He was as helpful as he could be. For that I was grateful.
I don’t need surgery on my nose which is good news in a way. There may not be a way to fix what’s causing so many problems as he thinks it’s a part of having lupus and or sjogrens if that shows up. He gave me a nasal spray that I hope will help. None have in the past. I’ll find out in the next week or so if I have allergies or sjogrens.
Who knew that all you needed was a single blood test to find out what allergies you have now? That’s so much easier then the way I used to know.
I’m practically friends with all the lab girls now because I’m in there so often. I should just move in.
A couple more things…I’m absolutely banned from taking Advil or anything of the like. It damages kidneys and stomach. I’m going to have to get medical marijauna for migraines and (Sorry guys) cramps. Advil was the only thing that helped. I’ve also been taken off all meds about a year ago that are known to help my kidneys which may be why the disease is really showing now. They all made me ill, like damaged my stomach so, it will be really interesting to see what the doc will come up with to treat this if it is lupus nephritis. I’m probably looking at a chemo drug that’s given via IV infusion. That’s not terribly comforting either.
So that’s the update. I hope to know more tomorrow. It won’t leave me much time to prepare to be away. Not to mention recovery after the biopsy is longer than I would have anticipated. My poor guy is going to have a lot to carry through this. I feel for him.
Well this was going to be a short post. That didn’t happen.
Hope this finds everyone having some low pain days.
Happier Days & Better Health,
Hello blog world. How goes your battle? We truly are warriors aren’t we?! I admire everyone waging war with autoimmune diseases. They’re vicious, relentless, ambushing, painful, annoying diseases that too few understand including the medical world.
Anyone else in on hating the autoimmune diseases club?!
I have a new development as of last week which is now forcing me to see yet another specialist. So presently, I’m booked in or being booked in with 4 different specialists. Yes that sucks but, what sucks worse is three of them are a 10 hour round trip drive away. You heard that right. That’s not only impossible for me, but since Mr. CrankyPants has to take off work every time to drive me, it’s impossible for him too.
I’m presently trying to get out of one appointment that I believe is completely unnecessary. If I thought for any reason at all that it was necessary I wouldn’t be trying to get out of it. Right now as far as I know, I’ve managed to talk them into a teleconference appointment in my own city instead since they’re not letting me away with cancelling. That’s the Nephrologist.
I’m in process of trying to get the other two out of town appointments covered in one day since they’re both in the same building. If I can do that, it means only one trip rather then three.
I know you’re still wondering what the latest development is. I guess I shouldn’t keep you waiting any longer should I?! Well just for a min.
The appointment that is in town already hasn’t been made yet but that’s with the GI regarding my gut. I’ve heard she’s amazing and the kind of Dr. everyone wishes they had so I asked to see her and I’m grateful for the referral to her. I don’t know how long the wait will be.
The other two are the Rheumy and drum roll please…I’m now being booked to see a neurologist.
I have developed a tremor. The Rheumy is concerned and wants me to see the neuro.
I’m grateful to be referred to the neuro as I have other neuro stuff going on aside from this new tremor but, my heart sank when I found out that yet again it was going to be out of town. Geeze we need specialists up here.
If I was doing things the Dr.’s way, I would be making three 10 hour round trip drives in two months to see these docs. Who can afford that financially or health wise?! It’s ridiculous. I hate our medical system and it’s making me a CrankyPants.
Do they not get that we are sick people?! I’m so weary.
I don’t know if I mentioned prior that I’m looking into reporting a Dr. here for a serious situation? The College of Physicians think I need to. If I have already, just an update. I haven’t decided yet whether I want put myself through the stress of it only for the College of Physicians to do very little to nothing anyway. Sad that Dr.’s are so protected but patients aren’t.
Anyway, I’m worried about this new tremor thing too. I hope that I can get some answers. I hope even more that it’s nothing to worry about. While I’m there, I’ll take the opportunity to tell the Dr. about my really bad memory and my struggle to get words out and form sentences that started when I was on methotrexate. I’d really like to get an MRI and maybe a brain scan so I know if anything worrisome is going on.
Or if I have a brain at all. 😉
One more thing. I grabbed the opportunity to ask the Rheumie while I had her on the phone, for an ultrasound on my foot since it’s become so painful I can’t walk on it. Rather my big toe joints. She complied and I’m happy about that because I can’t get my GP to do anything. The bummer is, it’s a 6 month wait for an ultrasound. Grrr…I’ll get myself on the cancellation list I guess.
How are you all doing in your battles? I’d love to hear from you.
Hot Days & Rain Coming,
P.S. Sorry I’m so Cranky today. I’m overwhelmed and just wish all this would go away.
Hot damn the fatigue slammed me this past week. I always have some level of it but, this was way beyond that level. It was hard to function and hard to think but I had to anyway. I find when it’s this bad I get overwhelmed really easily. Anyone else? I usually have a number of people messaging or texting me throughout my days, and the phone going off all the time was driving me nuts.
It’s even harder when it’s happening while I’m trying to sleep. And with all that’s going on, I can’t really unplug.
I think and HOPE it’s lifted a little bit as of tonight but wow it’s debilitating.
I’m guessing I crashed from the insane busyness of the past couple of weeks but there wasn’t a choice.
It’s so hard having to function every day as though I’m not sick, when I’m sick.
When people get the flu it wipes them out and they go to bed, rest and recover.
Not only do we not get to go to bed, or rest, we never recover. It only gets worse and then we have to live as though we’re fine.
I don’t know about you guys, but when things get crazy busy for me, I usually get hit after the fact with a flare. I always have pain but I get hit with debilitating pain and fatigue.
Sometimes it’s so after the fact that I can’t even link it to any one thing.
There’s so much guilt attached to it too, but I’m learning to self talk myself out of that.
And this is part of why I’m a CrankyPants.
That’s all I have the energy to blog tonight. Stay tuned for more about a serious subject regarding the possibility of reporting a Dr.
How are all of you doing?
Rainbows & Sunshine,
Time. What’s that?! If anyone knows, let me know.
Things have been so incredibly busy I think that I’m in survival mode. We have spent the last few months tearing first our bathrooms and kitchen apart to have new counter tops installed. We finished that got it all put back together and thought we could breath. You see, we’ve been getting our house ready to sell.
Once the counter tops where in and I had done a ton of painting in other areas of our house, we called the real estate agent to come in. The night before she was do to come, I was doing some “touch up” painting in one of our bedrooms. Well, that led to the paint totally stripping off the wall four layers down. So the next morning a nice neighbour came over and helped me finish stripping and scraping the wall. Then patching. The goal was to have it done in time for the agents visit. It wasn’t. I was a mess when she came, the room was mess, and I had to leave my friend to continue my work for me and have the meeting with the agent.
So we talked.
Then the next day I painted two coats on that damn wall, cleaned everything up and put the room back together.
We had been tossing back and forth the idea of laying new flooring in our kitchen since it had a lot of broken tiles. Our real estate agent agreed so here we went again.
We tore up all the tiling and sub-flooring in our huge kitchen in one day. The next day Mr. CrankyPants laid all the new flooring while I painted all the trim. (The trim as was didn’t match the new flooring). And we put back together the whole kitchen again. And we cleaned and purged and cleaned.
Can you say tired and in awful pain?! Ugh!
You’d think we could rest after that but no.
Now it was time to list the house. And list it we have.
We are now having to keep the house looking perfect and staged at all times since we’ve been warned that real estate agents can show up at any given time without notice to show our house. There is no rest for the weary. And I’m weary.
Tomorrow, we have an open house from 2-4 and if that’s not enough then there’s a showing from 6:30-7:30. Mr. CrankyPants’ only day off this week.
We have no place to go because we are in the middle of heat wave and we have to take our dog with us. We can’t leave him in the truck. So basically we sit in the truck with the air on for all that time. It’s crazy.
Getting out of where we live is good. Moving is so stressful and not good for autoimmune disease. I’m worried when all this is said and done, that I’m going to crash. I have no choice but to do all this as we have no help. No family where we live.
We’ve had one family come through and they are interested. I hope there’s more interest come tomorrow! A bidding war would be great!
After we sell though we are on to the next stressful part. Finding a new home out of province, and Mr. CrankyPants will have to find a job. Then the move.
This is why I’ve had so little time to blog. You can always follow my FB autoimmune disease support group. I’d love to have you join! Just click on the blue.
Hot Days & Big Changes,
I have seriously had no time to blog. Life is going at the speed of umm…life.
In short I still haven’t started Humira. It’s such a process with the Ins Co. and the Co pay Co. to get on it. I’m now approved, fully covered and it will be ready for me (I hope) to pick up after the long weekend.
I won’t start until next weekend when Mr. CrankyPants is home. I don’t like to be alone when I start a new med.
We have been working hard to get our house ready to put on the market. We wanted it on by now but, we’re getting new counter tops put in and there was a two week delay do to a mistake the store made. I really hope they go in next week.
While we’ve been waiting for that, I’ve been doing some more painting. We bought new sinks and taps and cupboard door knobs.
We have some trim to put up in the bedroom I just painted, gardens to plant, a house to purge of as much as we can before the town clean up next weekend.
And the list goes on.
Three days ago you probably wouldn’t be surprised to hear I went into a bad flare. My neck is in so much pain I can hardly hold my head up. My whole back is in spasms. One day I let myself rest more then not but only because I couldn’t hold my head up without intense pain.
I’m still in a lot of pain but aside from a nap, I don’t have time to stop. I truly wish I did.
This coming week I have a docs, appointment, a dog to take to the vet and I’m sure more. It’s so hard to drive when I can’t turn my head but I’m the only one who can do this stuff. Mr. CrankyPants is in busy season at work, so he’s working long hours. That means I have very little help at home and boy could I use it.
I have no family up here and even if I did, they wouldn’t be in my life. So…I have to keep going as though I’m well when I’m not. Fatigue is always a battle as well and I think I might be getting a cold.
Aside from all the above there’s also been some personal hard ass battles we’ve been fighting. I’ll just leave that there other then to say one of them involves a neighbour again a different one then the one next door. It’s so stupid what people will fight over.
I’m so tired. I want to know what peace feels like again. I just want to move to a place where home feels like home and I can be at peace when I’m home. Where I could actually sleep in my own bedroom again.
I will end by saying we’ve been enjoying a wonderful long weekend. The weather is perfect, Mr. CrankyPants actually got the entire long weekend off and as a result we are able to get a lot of things done. We’ve also enjoyed dinner out last night.
Mr. CrankyPants is in his happy place because he’s gotten to do some gardening. He’s a summer man through and through. And we’ve taken a nice walk in our local conservation area. So they may be small things but in a tough situation up here they are huge.
I hope you all have been able to enjoy your weekend to some degree.
P.S. don’t forget about my FB autoimmune disease support group. I’d love to see you HERE
Summer Days & Sunshine,
I’m finding my way back to posting. Life has been so busy. Mr. CrankyPants and I went away last weekend in part for a small getaway, and in part for a Rheumie appointment that’s a 5 hour drive away.
We were so looking forward to having the getaway as we hadn’t had one in many years. While there was some good about it. It mostly turned into a nightmare. I came back way more exhausted then I left.
We arrived at our hotel at the time they said our room would be ready. It was not ready. An hour later, it was still not ready and my stomach wasn’t going to wait much longer. They didn’t even tell us how long it would be. We arrived at the same time as a wedding party was coming back from a wedding. It was chaos. For me sensory overload. I asked the front desk how much longer until our room was ready, and told them we’d been waiting an hour already. They checked and said it’s not ready yet so they’d upgrade us to a Penthouse room. Good right?!
First, for a Penthouse room there were really zero extras except for a beday and a soaker tub. Yay. That was fun. Second there were problems with the water and the pipes so the water was just spitting out of the shower. I actually got burned in the face with hot water because of it. Then, we ended up right across the hall from the bride and groom who kept coming and going from their room all night. The noise from their door opening and closing kept me awake all night.
We called down in the morning and told the front desk about the water problem. We had a “pipe guy” come up to our room and check. It was something that couldn’t be fixed right away. They said they’d check the other rooms on the floor and did. They said it was only our room. So they had to move us.
Now I’m exhausted and we had plans to see the massive mall for the day. So they told us to pack our stuff up and they would move us to another room for when we got back.
The mall was amazing but I was so so tired.
We got back 4 hours later and they had just moved our stuff. They moved our stuff to a down graded room. What?! It isn’t that I’m a spoiled brat, it was the principle of it for me.
Mr. CrankyPants had to get to a reptile show. I needed to nap but instead I went down to the front desk to find out why we got down graded with all the trouble we’d had. I had involuntary tears streaming down my face at this point I was so tired. I think all I needed them to say was sorry, how can we make this better for you. Instead she said this is the size room you originally booked. I said I know but that’s not the point.
I can’t remember the full conversation from there, but I ended up going back up to our down graded room to wait for a call from them. Oh and I was told the only other penthouse room was occupied. Not true. They just hadn’t cleaned it yet.
So I get a call back and I’m told they begged house keeping to stop everything they were doing and get the penthouse room cleaned up for us. Okay great, but it was going to be another two hour wait. There went my only time to get some rest.
Two hours later Mr. Crankypants came back from the reptile expo and we weren’t moved yet but they came shortly after.
So up to the other penthouse we went with the help of a staff member. So at this point we went from penthouse, to suite and back up to penthouse.
Staff dude said he was going to check that everything was working. He got talking and forgot.
Now it’s evening and we’re both hungry and tired. We head to the restaurant in the hotel. It was mostly good and food that I could eat. For that I’m thankful. However…Mr. CrankyPants got served his beer in a dirty glass. He wasn’t going to say anything but decided to kindly let them know. They gave him an extra free beer. That was nice.
We met some nice people in the restaurant who saw my crutches when I was in the mall that day and he asked about them. We got talking a bit and found out both had cancer battles they were dealing with. It was a nice few moments to chat about autoimmune diseases and connect because of them.
Then back up to our room for the evening. At this point all I wanted to do was soak in the tub and veg for the night. I did soak in the tub but that’s when I discovered that we had the same problem in this room as the other penthouse room. The water wasn’t working properly. It wasn’t just one room on the floor.
After my bath I went to make a cup of tea with some tap water. The tap water was brown. AAARRRRGGG!
I called down to the front desk and said I don’t need anything from them, just that I wanted to let them know that the water wasn’t working in this room either and that we have brown water coming from the sink. I told them I was too tired to have anything done about it that night. They said that they were so sorry and could they make it better. I said we can deal with it in the am.
Even though we were 22 floors up, the traffic on the side of the building we were on now, was so loud that even with ear plugs and a pillow over my head, it kept me awake all night long. Now I’m even more exhausted and I have my Rheumie appointment to go to.
So, we talked to the front desk in the am, and told them again about the water. It was obvious the message hadn’t been passed to them. They finally said they better lock those two rooms out until they figure out what’s going on with the pipes.
Out of it, we got a tiny bit off the price of our stay, free parking for the two nights, and a free buffet breakfast each for our last morning there. I do love a good buffet breakfast. I take enough to have lunch out of it too. 😉
Now it’s off to the Rheumie appointment.
They were running quite a bit behind and we still had a 5 hour trip home after.
Long story short with the Rheumie, I’m being taken off Enbrel as it’s not working enough for me. I’m going to be starting on Humira. The doc actually wanted to start me on Rituxan infusions but, because I have sero negative Rheumatoid which means the RF factor doesn’t show up in my blood work, I won’t get coverage for the infusions. Sad because the infusions would help my kidneys that are still leaking protein. Talk about medical discrimination with the Ins. Co.’s.
I swear the most relaxing parts of our trip were the drive there and the drive back.
Before the trip I spent three days making candles for a show I had yesterday. And I worked on getting ready for the trip.
When we got back, I spent my week still getting ready for the show, and dealing with the whole Humira process. The days have been such a blur with the busyness since I got back.
So the show yesterday was a massive one. The biggest one I’ve been too and you know what? I sold two small candles and a couple of bottles of CBD all day. That’s it. It was such a horrible let down after all the work I put in to prepare for it. I was also told that most people sell out early so I had high expectations. It was a Craft and Critter show. It seems most people were there for the livestock not the crafts. That’s it for me with shows. I can make more just selling wholesale like I always do until we move. I totally thought that at least the CBD would sell out there.
The one highlight of the show was that I got to hold and feed a 7 month old baby wallaby. That was wonderful and a once in a lifetime experience.
Now today (Sunday) I’m recouping. Tomorrow I look forward to the start of a less busy more normal week. I hope.
Sorry this is so long. There was lots of catching up to do.
Don’t forget about my FB autoimmune disease support group. I’d love to have you join Here.
How has everyone else been doing?
Sunshine & Spring,
If you read yesterday’s post Here you will know I decided to report to the hospital that I woke up during a very painful procedure to me a month ago. I warned the doc I would if he didn’t put me right out and he refused. I woke up in agony.
I got a call back this morning bright and early. It was nice that they got back to me so quickly. They took my report and passed it to the proper department.
That department has already called me as well. I just got off the phone with them in fact. So this is where they’re starting. They are going to find out if there was a disconnect in information given to me. Aka the nurses telling me all I had to do was ask to be put out, and they would put me out when that was clearly not the case.
We are not yet going to make this about the Dr. Only because he is the only specialist I have the option of seeing up here in his field and if I need to see him again it would be awfully awkward if he’s made aware that I reported him.
Having said that we’re not ruling that out yet because he also treated me poorly. We’re just looking into some other things first. I told the hospital that I thought there would be communication between the nurse I’d talked to about being knocked out and the Dr. There was none.
They just want to see first if I was given some false information. So they are investigating. I have asked them to keep me in the loop to which they agreed. I have offered to educate them on people with ostomies because I have one that needed to be watched during the procedure and no one watched or looked after it,even after I made it clear it needed to be watched. No one knew how to.
So first,they’re looking into whether there needs to be some policy changes within the hospital. More communication, proper communication, and an option put in place for people like myself who don’t sedate well or at all if one doesn’t exist. After that’s all looked into then we’ll decide where to go with the Dr. side of things.
Health Services was very kind, compassionate and seemed to want to help and make things better. If that’s true then I feel like I did the right thing. Maybe, just maybe it will bring about some positive changes in the hospital for others as well.
Rainbows & Sunshine,
I’ve been thinking a lot about what I went through with my scopes a month ago. Some will know the story from This Post but long story short I was supposed to get Profinal and be put right out for the procedures. My fear is such that it will override sedation. The doc on the day absolutely refused to do so. He completely blew me off actually turning his back to me and refusing to discuss it further or answer any other questions I had for him.
He had the nurse chasing me around the room with freezing spray for the endoscopy and I wasn’t done asking questions. Doc refused to talk to me further.
This is all while Mr. CrankyPants and I are standing in the middle of a dumpy room in my gown carrying all my stuff, because apparently there were no stretchers to be found.
When one finally did come, they got me on it, and I started to cry. The nurse didn’t try to comfort me, she just wanted to shut me up to get the mouth piece in my mouth and knock me out.
For those who don’t know I warned them that my fear would override the sedation. It did. I woke up in the middle of my colonoscopy in agony. He was hurting my stomach so bad. I was promised that if I were to come to that they would give me Profinal. I’m pretty sure that didn’t happen given I could clearly hear the Dr. say and I quote, “We are almost done.” He said this twice. I remember the feel of the scope being taken out.
The pain was horrible I was rocking back and forth saying it hurts, it hurts.
The doc never came to see me after or address this.
I was sent packing from the hospital throwing up.
I’m so done with being treated like shit by the medical world. This has really done a number on me. There’s reasons I won’t go into why this is more traumatic for me then maybe some. I made the doc aware of those reasons and he still ignored me. He didn’t even acknowledge I had said anything.
I also still have a lot of pain where it hurt when I woke up from the procedure. I know I have ulcers but they didn’t hurt this much before. I wonder if the doc did damage.
I’ve had a few people tell me I should report this. I’ve had another Dr. say I should never wake up during a procedure, and I’ve had some tell me to ditch him as my Internist but he’s my only choice up here. Not that I want to see him again at this point unless it’s to call him on all this.
All this to tell you that after a lot of thought, I’ve decided to report it to the hospital. I haven’t done it sooner because I’ve been to scared of being black listed but, I’m tired of the medical world getting away with bad treatment. I’m done letting fear stop me from reporting it.
I called the hospital today. I found out that they have a complaints department. I’m going to start there. Unfortunately, I called at 4:32 pm only to find out that they close at 4:30 pm. I did leave a message for them to call me back, and I probably won’t wait for them too. I’ll call them tomorrow.
The above situation is one of quite few up here I’ve had to deal with. No wonder people develop phobias of medical anything (Mine is bad). It’s not what they like to call “White coat syndrome.” It’s fear of being abused or blown off. If I don’t speak up, who will. Maybe I can stop this from happening to someone else.
I’m only one person but it only takes one to start the process of change and awareness. I’m scared, but I’ll make the call anyway.
So wish me luck!
Warmer Days & Rainbows,