Yet Another Thing…

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,

CrankyPants

P.S. Sorry I’m so Cranky today. I’m overwhelmed and just wish all this would go away.

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Fatigue…

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,

CrankyPants

 

Please Slow Down Life…

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,

CrankyPants

Keeping Up

Does anyone else feel like you can’t keep up with the normal pace of life? The normal pace of healthy people, but you have no choice. You have to keep up? If you don’t get things done, who will?

And the guilt. So much guilt for struggling to keep up, and needing so much sleep, yet still being tired. All. The. Time.

I wish life could slow down some.

What do you do to cope?

Rainbows & Lightening Storms,

CrankyPants

Finally Catching up With You…

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?!

Wrong!

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.

There’s more…

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,

CrankyPants

 

 

 

Wish Me Luck

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,

CrankyPants

 

A Tiny Add On to Yesterday’s “Results” Post

Reminder: I started a Facebook support group for those living with autoimmune disease. I’d love to have you join if you’re interested. Feel free to invite anyone you think may benefit or be interested. I’d love to see you there!   https://www.facebook.com/groups/crankypantsautoimmunediseaesupport/

I forgot to mention that the Dr. said I should consider the FodMap diet to look after my fake diagnosis of IBS (Aka BS). Really?! I was on a candida diet for three years. I took out all carbs, sugar and anything you can think of that wasn’t healthy out. You know where it got me? I got sicker, and I went into starvation mode.

I looked up the FodMap diet and I pretty much don’t eat anything that you’re not supposed to on it now. The only think I’d need to change is going to gluten free bread.

I wish I could wake my Dr. up!

Anyway, hope everyone has a good day. As you can probably tell It’s been a rough haul lately for me.

Sparkly Snow & Sunshine,

CrankyPants

“Results..”

So it’s been a while since I blogged last. I’ve had a hard time processing everything. I’ve since received my biopsy “results.” That’s in quotes since they found nothing so they’re calling it IBS. I call it BS.  This seems to be the way it always goes for me. Something is very wrong, I know in my “knower” there’s more then IBS happening but Docs don’t believe me. I even asked the doc if 8 months of fissures that caused me the worst pain of my life come from IBS? He couldn’t answer me.

I forgot to ask if being on Enbrel might have masked things, since the fissures cleared up when I went on it. They didn’t get to see them. My friend who battles crohns said it could definitely mask things and just because they didn’t find things in the scope or biopsies doesn’t mean they’re not there.

This is how it went before I ended up losing my bladder to IC (aka lupus they didn’t know I had back then).

This is how it went for three years trying to get answers with regards to my joint pain. Nothing showed up in my blood work other then being ANA positive which they decided was a false positive. It wasn’t. Guess what? All along I had RA and Lupus and I knew it. Trying to get docs to believe me was the problem. It wasn’t until Raynauds showed up in front of my Dr. that he finally believed something was very wrong. I had already gone through 2 Rheumies that blew me off and a pain clinic prior to this.Then I was finally offered a referral to the Internist who knew I was really ill as soon as he saw me. He diagnosed me that day and started me on meds that day. Next time I saw him, he changed his mind. And so it went back and forth for a time until I was sent to another Rheumie, who knew something autoimmune was going on but because I didn’t fit her box, she called it mixed connective tissue disease not yet determined. Say what?! In other words, something is wrong but we don’t know what.  Oh and by the way RA is now showing up in my blood work I found out at this appointment. My inflammation markers are up. Add in the doc tells me I have protein in my urine again too. Not as bad as before but my kidneys are being watched closely for lupus nephritis.

Having said that I was also trying to tell the doc I can’t walk on my foot because of my big toe joint pain and locking. He shrugged and said take anti- inflammatories. Ummm..I have strict instructions not to take any since my kidneys are at risk. I’m allowed one Advil a day and that’s pushing it. How does he not know this when I tell him every time I’m in there and he has it in his records. He knows they’re dangerous for my kidneys, not to mention my gut. So even though I’m already on Percocet , he scripts me Tramadol for my foot pain and explains it away as my RA. I know it’s my RA, but what can we do to fix it?! I was hoping to be referred to an orthopedic surgeon, but apparently Tramadol is going to fix things. Not! I told him no cortisone shots but he tried to suggest it anyway.

It gets better (Insert sarcasm). He asked me who scripted me Viberzi for my gut. Again say what? I looked at him and said, “You did.” It’s like he doesn’t know me at all after having been his patient for 6 years. So for now I’m still on Viberzi and left with nowhere else to turn for help even though I know something is wrong.. I also had to ask him about the ulcers they found in my stomach during the scope. He actually asked me if my stomach hurt. *By this point I wonder if I was visibly shaking my head.* Yes it hurts hence the damn tests. So he gave me ppi’s for that. So far they haven’t helped but we’ll see.

I guess as usual I will be waiting until I reach a crisis to actually get answers for what’s wrong with my gut. Sad that the system works this way. I would have asked for a referral to specialists but I know my GP would not have referred me. When I first asked to see the Internist about my joint pain the doc said and I quote, “He won’t be interested in you.” Gee thanks.

So I know unless my GP has something visual he won’t refer me to any specialists.

I told him about my gallbladder pain and he ignored me. Arrghhh. Why can’t I just get a Dr. that listens and wants to actually help? That shouldn’t be too much to ask. We can’t just switch Dr.’s up here or I would.

On a bit of a different note. I have now set up an autoimmune disease support group on FB. It’s s a closed group so there will be complete privacy and freedom to share things we otherwise wouldn’t. If any of you are interested in joining I’ve posted the link below. If you know of anyone you think might be interested or benefit. Feel free to share the link. I’d love to have you join.

https://www.facebook.com/groups/crankypantsautoimmunediseaesupport/

You will be asked three questions before approval.

Better Days & Where’s spring,

CrankyPants

 

 

 

Fatigue

CrankyPants is back and apparently writing in third person. This is the kind of silliness that happens when she’s taken her pain killers before bed.

It’s taken me a long time to recover from those two scopes I had recently. Hey look at that. No more third person. Well pat me on the back and hand me a cookie.

Now what was I saying??

Right recovery. I thought I was going to be pretty much back to me the next day. Pffft! That did not happen. It took 4 days for my stomach to stop hurting from the scope. I’m just past two weeks from the tests and I still now have a cough that won’t subside and I still feel the path of the endoscopy. My voice is raspy and annoying. Is there a conspiracy here? Did Mr. CrankyPants ask them to quiet my voice?!

And where they put that damn IV is still tender. I will karate chop anyone who ever tries to put an IV there again. Medical world consider yourself warned. I know my pain can stop a karate chop but, adrenaline can allow one to happen. Know what I’m saying? Good.

I wonder if between the lupus, rheumatoid, and immune suppressants I just won’t recover as quickly as a healthy person would.

Well now to get off the rabbit trail I apparently went down without intention…

I wanted to ask you all about fatigue.

I know the majority of if not all those fighting autoimmune disease experience fatigue. I wonder if it can be different in some ways for us all. What I was wondering is if you battle fatigue, how does is present for you?

For me most of the time it seems to be like a lethargy. Everything feels like it’s an effort or a chore. Mornings are the worst. I wake up between 7-8 am every day, get my breakie and have a decaf coffee. Once I sit down with my coffee, I just can’t get going. It takes me until between 9:30-10:00 to get the energy to take my shower. Some might see that as laziness. I don’t think it is.

After my shower I have a bit of a boost to get everything accomplished I need to. I then nap in the afternoon. (Pain killers I take then make me sleepy).

After my nap I still have no get up and go, but I have to because things have to get done. So I do them. Including a bit of exercise.

If I have a particularly busy day, I seem to get worn out really quickly. Sometimes I shake my head wondering how I could possibly be this worn out when I’m only doing maybe half of what an average healthy person does. It’s frustrating.

There are times where I feel the extreme fatigue where it’s debilitating and very hard to function. It’s hard to explain, but those who have it will know what I mean. No amount of sleep fixes it. It feels as if you haven’t slept in weeks, but for no apparent reason other then our bodies are trying to kill us and that’s kind of exhausting.

Do you guys experience both? Do you experience one more then the other?

And because it seems I’m full of questions tonight, do you feel guilt with it?

Oh the guilt I battle. I don’t work other than my little candle business. Mr. CrankyPants works hard and long hours. I feel like I have no right to feel so draggy when I compare my day to his. I feel useless often too, even though I actually get a fair amount accomplished. It just doesn’t feel like enough. Like I could do if I were healthy.

On a side note I have my follow up Dr.’s appointment to get my biopsy, blood test and the other sample test results on Tues. I’m a little shall we say nervous. I don’t want to have what I suspect, but I need answers at the same time for what’s wrong, because something is really wrong. I hope my GP will listen to me. He often doesn’t. He’s the type who will give you your results and that’s all he says. I’m left with thinking, well what now?! I hope I remember to ask him the “What now” question. My anxiety is very high when I have to go to the docs.

I should probably write my questions down ahead of time. If he sees my list, he’ll ask me what’s on it.

Anyway I’d love to hear from you all on your fatigue experiences.

I’ll also be waiting for that cookie I mentioned above. Maybe it will fix my fatigue. It’s worth a try don’t you think? 😉

No More Snow & Spring Flowers,

CrankyPants

 

The Other Side of the Scopes

Where to start..

I think I’ll start with a thank you to all of you for your support. It really meant a lot. It sure helps.

There was good and bad about the whole thing. I’ll start with

The Good

  • No stomach pain or cramps with the prep
  • The prep didn’t taste horrible at all as I’d expected
  • I never felt hunger which is very weird for me, but a gift through this at the same time
  • I got a few hours sleep the night of prep
  • It didn’t cause too much damage, since it’s mostly liquid. (Sorry for the tmi).
  • I made it through the prep and to the hospital with no accidents. That’s a definite worry with the prep. So double win there.

The bad:

  • The nurses knew very little to nothing about some of the medications I’m on, They should know about them
  • The staff knows nothing about urostomies so I had to make sure things were looked after there. Frustrating
  • The Dr. wouldn’t listen to me. He flat out refused to give me Profinal that I was promised to knock me right out
  • I wasn’t finished discussing it or other questions I had with him, but he just turned away and ordered the nurse to proceed. Even Mr. CrankyPants was there saying knock her out and no response
  • I warned them I don’t sedate well but as is usually my experience they don’t believe me
  • As a result I woke up during the procedure crying in pain. I remember them saying we’re almost done. I sure hope they gave me more sedation. I’m not lying that has now traumatized me further. I almost died in another proceedure in the past because docs wouldn’t believe I wasn’t frozen or sedated even though they had done both. I was screaming in pain and they wouldn’t listen until again Mr. CrankyPants spoke up and pointed out my dangerously high blood pressure. Why weren’t they watching?!  So you can see this being one of many other experiences of the like why I have severe anxiety with anything medical. This brought that all back. I even told the Dr. I’d been abused and he didn’t listen.
  • They couldn’t have picked a more painful place to put the IV.  I’m still in a lot of pain from it today.
  • In the recovery room. They didn’t offer me any food or drink and I had gone almost 48 hours without. I was sick and dizzy as hell and they sent me packing that way. It was sub-par care at best. Kind of awful

The Results:

  • I have an inflamed esophagus and acid reflux.  (A total shock to me as I’ve not had symptoms)
  • I have stomach ulcers. (Nice of my GP to assume my stomach pain came from ibs without testing me)
  • I have internal hemorrhoids that nothing can be done with at the moment since they aren’t swelled. Having said that, to eventually get something done, I have to go through a surgeon and be awake for the procedure. I’m sure you can imagine what I think of that right now.
  • I had a number of biopsies done. They are looking for micro colitis, (which is when it doesn’t show up in the scope), celiac, cancer and I hope because I asked for it they are also looking for lupus and rheumatoid since, I’m diagnosed with it but it doesn’t show up in my blood work. Who knows if the Dr. will have actually listened to me and complied though
  • Everything else looked good and clear. So minus what did show, I still at this point have no idea what’s wrong ,and there is something very wrong. I don’t want to have these diseases but I really need answers. I’m still losing weight and I shouldn’t be. I’m at 102 pounds at 5 ‘1. That’s underweight. I still can’t stop the frequency. That’s not normal.
  • So in two weeks time I have to follow up with my GP who doesn’t even know I had these procedures done to get the results of the biopsies. I will also be getting the results of my blood work I had done through the GP a couple of weeks ago.

I’m glad for now that it’s over with, but I wish I had more answers. I wish I could storm into that hospital and give them a piece of my mind. I wish I could teach the medical world about the things I live with like my urostomy. You know the nurse didn’t even know what Enbrel is?!

So today is the day after my scopes. My gut hurts a bit, my throat way down is tender but nothing unbearable. I’m just resting. The laxatives are still working some so, I’m staying home.

Have you had these kind of scopes? What was your experience?

Over & Out,

CrankyPants