Please feel free to comment. I’d love to hear from you.
If you’re not interested in hearing a vent stop reading here. Just so you’re warned. There may be cursing. Zero politeness.
I’m fucking sick of the medical world passing the buck. I came out of the biopsy with a nerve injury and serious nerve pain to go with it. Not to mention part of my thigh and groin are completely numb.
I saw the ER doc who consulted the Nephrologist. They tested for any kidney issues like a bleed and when there wasn’t any, they passed me off to my useless GP. He gave me nerve pain meds which I’m too scared to take as you have to be weaned off of them, Then he sent me on my way with no answers.
Then I talked to the Nephrologist again who said I need to contact my Neurologist. I did. It took two calls and three days to finally have her contact me. She is refusing to do anything to help me with this nerve injury. I asked for a cat scan or an MRI. She said I could ask my GP. I told her again I’d already seen him and he didn’t offer. She said I could ask my GP. I said I can’t get physio until I know what’s wrong. She told me get physio. Umm….Did she not just hear what I said?!
She didn’t know that I already knew my MRI results regarding MS testing. She told me that’s all normal. She said I have degenerative arthritis in my neck with some bulging discs but it’s mild. It doesn’t fucking feel mild. She said it like it meant nothing. I guess because someone else in her care living in that kind of pain doesn’t matter to her. I pretended I didn’t already know about the arthritis. Well I didn’t know about the bulging discs. I asked her what about the tremor and weakness in my arm. She said it’s in my head. I’d heard that from her before and didn’t like her for that but I wanted to like her so I pushed it out of the front of my mind. I just remembered she doesn’t think the nerve thing was caused by the biopsy. Well then what the hell is going on or is that in my head too?
When she said it today it was the straw that broke the camels back. I’m bummed. She also says I don’t need to see her anymore since my MRI was clear. I’ve been ditched with a nerve injury and zero answers from the 4 doctors I’ve seen. Not one has offered to investigate or take responsibility for this.
I’m just fucking done.
I’ll call in the physio therapist in hopes I might get some help there. I can’t just live with this pain and numbness. I’ve had this physio in before when I had a problem with my shoulder. She often stood me up for my appointment or was running really late and never let me know until she was already like a half hour late. This time I’m going to tell her if she can’t come let me know. If she’s running late let me know. I have a schedule to keep too.
I wonder how many people are dying because the medical system is a money system now. They don’t give a shit about the sick people they vowed to “Do No Harm” too.
I’m fucking done.
Sunshine & Rainbows,
So things have changed again since last I posted regarding my kidney biopsy soap opera.
My Nephrologist left my hospital admittance in the hands of my asshole GP. I went to see said GP this past week for some script renewals. He didn’t even know that’s why I was there. He wanted to talk about my admittance paper work. He proceeded to ask me why I couldn’t get to this hospital on my own. Why couldn’t I stay overnight there and get myself home.
I told him I’d injured my back. I can’t handle a 10 hour round trip drive by myself let alone as a passenger. He mumbled something about me costing money. Nice eh?! Not once did he acknowledge the fact that my kidneys were in trouble or ask about my back injury aside from asking if er doc scripted me pain killers. My biopsy is an emergency situation and he was clueless. He didn’t ask how I was feeling physically or emotionally. He just went on and on about why I couldn’t get myself there.
Then it got worse. He said well, we might be able to get you there but could you get back on your own? WHAT?! After a biopsy and with a back injury?! He said again can’t you find somewhere to stay? NO! I can’t and how would I get home if you’re getting me there?!
He said well we’ll see what we can do I’ll call you if there are changes. DAMMIT! WHAT CHANGES?! He never said.
I wasn’t about to leave this to him. I never did trust him, and now I really don’t trust him. He doesn’t at all have my best interests at heart.
I came home horribly upset and feeling like a piece of garbage that was just a burden to him and the medical system. I didn’t choose to be sick or to need a biopsy.
I called my Nephrologists office. They were angry with him as was the hospital where I will be taken for this biopsy and very apologetic for him. I let them know he’s not at all supportive. They were also mortified that he was talking cost with me. It’s not the first time he’s done that to me. And he’s done it to my Mr. CrankyPants. It costs him nothing. And Mr. CrankyPants hardly ever goes to a doc so when he does it’s because he’s in a bad way. Doc often blows him off too.
Nephrologist’s office said leave it with them. They will make sure I’m transferred both ways. The hospital also called my hospital here to let them know that was necessary.
Well I’m sure that you won’t be surprised to hear that I got a call today from my hospital here in town. They said I don’t have a bed at the hospital so if I stay the night, I’d have to stay in emergency where it’s noisy. Would I like to sleep at home and come in early in the morning.
My GP failed to arrange a bed.
At first I said no I need to stay as it’s very early in the am and I need some testing done before I go. Why wasn’t I given a bed with what was supposed to be a weeks notice? No answer.
Here’s the kicker. They said I wouldn’t be picked up for transfer until 8:30 am. Again WHAT?! That wouldn’t leave enough time for me to arrive when I’m supposed to at out of town hospital.
They said it will since you’re being flown. Flown?! Last I heard that was off the table. No one had informed me I was being flown. I just want to scream. I’m grateful to be flown but not being informed, not having a bed, and having a GP who doesn’t give a shit about me or my care, only about money is too much. These kind of constant changes have been going on for the last two weeks straight and I’m so done with it.
So now, the new plan is that I’m sleeping in my own bed tonight. Mr. CrankyPants is going to be a bit late for work in order to drop me off at the hospital tomorrow morning. I will then have the testing I need done before they pick me up at 8:30 am if they’re on time and transfer me to the airport. As far as I know I’m being flown via air ambulance but no one has said.
Whatever I’m being flown in will land at the airport out of town, then I’ll be transferred to the hospital from there. They will wait until my whole testing process is done, transfer me back to the airport and fly me back to the hospital in our town.
Plans better not change again or someone is going to get real hurt. I’m someone who doesn’t cry much but my GP has had me crying twice this week.
My nephrologist is very ticked at him and going to bat for me thankfully.
On that note I got word of a GP in our city who has a very good reputation and is taking new patients. He cares about his patients. The day I heard about him, I drove the half hour into town to fill out the paperwork in order to become his patient. I’ll have to wait to hear from him but that’s okay.
I’m so done with my asshole GP who seems to care more about money and maybe his reputation? I don’t know then the well being of his patients. I’ve been with this present GP for 6 years and it’s like he doesn’t know me. He even asked why I still needed pain killers. Umm…Rheumatoid arthritis, Lupus, no anti-inflammatory meds as my kidney’s are in trouble?! He doesn’t even look at my records or results.
He’s been scripting me pain killers for the same reason for 4 years. I’ve never even used the full dose he scrips me so he knows I’m not addicted but I do need them for quality of life.
Anyway, I’ll be glad when this whole hell is over with. I sure hope the new doc is as good as word has it. I hope he’ll have my back and be willing to script pain killers. I hope he may even support medical marijauna. All things I will be asking him in the meet and greet.
Going back to the kidney thing, my last set of testing the pre-biopsy testing showed that my results were back to my norm. My norm is still not normal but much less worrisome. A good weird, but weird. Maybe it happened just to get this biopsy thing happening so we can get some solid answers as to what’s going on with me.
Better Days & No More Medical,
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,
First I want to wish everyone in Canada a Happy Thanksgiving. I’m not honestly sure that I have any Canadian followers. If I do, I hope you had a great holiday weekend.
My weekend went well until today (This afternoon). Oct.8/18.
Mr. CrankyPants and I slept in a bit and then spent our morning preparing our turkey and all the trimmings. Then of course a nap came in for me. I’m all about the naps.
We had decided that even though it was cold and snowy we wanted to go for a walk in our conservation area. That place is solace to us in our very stressful chaotic lives.
So we got the pooch ready and we headed off to the park.
I was really looking forward to the walk before having that fabulous turkey dinner waiting for us at home.
When we arrived. We leashed up the dog and walked about 20 steps. I had a rock in my boot. I went to pull my boot off to ditch said rock and boom it happened…
I felt something crunch in my back and then excruciating pain hit. I couldn’t walk or stand.
Mr. CrankyPants is trying to hold on to me while dealing with our pooping dog. (Talk about timing).
I was in tears at this point and trying to figure out whether the pain would pass or not. I think there was some shock going on too.
He asked me if I want to go home. I said no, just take me back to the truck and I’ll wait there while you walk. I did not want to ruin this for him and poopy pants.
It became evident very quickly that this was serious. I couldn’t even get to the truck.
About this time a brave fall camper happened by. He saw that something was very wrong and came over. This camper was I would guess in his 70’s. Would you believe he and Mr. CrankyPants together carried me back to our truck. Talk about wonderful kindness.
I felt horrible for both wrecking the walk and needing a 70 year old to help carry me crying to our truck. Man the guilt.
Anyway, we did not go home. Well we did, to drop off the dog and get my health card.
Then we headed straight to the hospital. One of the small towns near by has a small hospital and the best care. It’s usually much quicker then our big hospital in the main city. And by much quicker, I mean 8 hours or more quicker with wait times.
When we arrived I got out of the truck still in some shock with the pain and I tried to walk.
That was a no go.
Mr. CrankyPants grabbed a wheelchair and took me in. Not only was I taken through triage immediately but, I went straight to a trauma room. The Dr. wasn’t at the hospital but came in to see me and thankfully one other patient, so I didn’t feel like I was the only reason he was pulled away from his holiday.
Doc checked me over while I was still sitting in the wheelchair and decided to order x-rays to rule out a fracture.
I was given a Torodal shot which technically I’m not supposed to have, but the doc felt in this case it was the lesser of the two evils. I have a lot of medication allergies and this wasn’t one.
Those needles can hurt. I feel like I’ve been punched in the arm.
Then it was off to wait for x-rays. Holy crap on a cracker getting up on the x-ray table and positioned had me in tears all over again. I should stop here and say the tech, the doc and the whole staff were amazing. That helps a lot.
So the good news is there was no fracture. Bad news is he thinks I may have slipped a disc. I also have degenerative disc disease ( which I think is Osteo. If so I knew that. If not add another painful medical thing) and I have scoliosis. I already knew that. Funny how that hasn’t been mentioned by any other docs through out this whole disease process in the last few years though.
This Dr. could see how much I was suffering, and that the Toradol did not touch the pain as I warned him it wouldn’t. He graciously offered to give me another punch in the other arm in the form of a morphine shot. I gladly accepted. I didn’t see any other way that I would be able to get into our truck, or walk into our home with way too many steps.
I’m home now with instructions to take extra Percocette (Aka more then my norm). I’m to take muscle relaxants 3x a day and follow up with my GP in a couple of days to let him know what happened and get a bigger pain killer script. I can’t see how the follow up is going to happen given I can’t drive myself right now, and my other half has to work. My other half is going to let his work know what happened so if I need help at home he can come home. Looking after our very needy stubborn dog is a challenge on an average day, let alone with this going on.
Doc said I should do some moving around so as not to end up with blood clots and atrophy.
I will be very drugged up for the next few days, although that will knock me out it will also help me move a bit. When I do walk my whole body shakes and my teeth chatter. I don’t know if that’s from the pain or what. It’s weird.
I’ve had some pretty bad back pain for quite a few years now but this trumps it all at the moment.
I was so scared. Scared of how I was going to do anything much on my own. I guess you just do what you have to when there isn’t a choice.
I’m going to have to stay on top of the pain since I can hardly move with the painkillers.
Despite it all, I’m grateful that:
- A senior stranger in the park was willing to help carry me to our truck.
- I was seen immediately at the hospital
- Doc and tech both came in on their holiday to look after me
- All medical staff was kind
- They believed I was truly in pain and not just drug seeking
- They gave me that morphine punch which helped get me home
- Mr. CrankyPants took me to the hospital
- We had our Turkey dinner all made ahead of time
- We came home to a yummy turkey dinner
- The morphine lasted long enough that I was able to eat our dinner at the table,and then get set up on the couch for the evening
- My back isn’t fractured
- I won’t have to cook for the next week since we have a ton of turkey dinner to eat up
- So much good can be found in bad situations
I don’t know how long this is going to take to recover from and that worries me, but I guess I just have to take one moment/day at a time.
And that’s my Thanksgiving story. My operation boot and rock removal, ended as operation walk removal.
Better Days & Sunny Skies,
As you know, I’ve recently put this blog to a private setting. The reason being that I have somewhat of a stalker. Not dangerous just doesn’t have boundaries.
That being said, with the blog on a private setting maybe I can start blogging about some stuff I otherwise wouldn’t. You know taboo stuff like sex.
Before I do. I want to remind you all that anyone is welcome to do a blog post on this blog. If you have something you need to vent about and don’t want it on your own blog, or you don’t have a blog. My blog is yours too. Just let me know and I’ll hook you up.
Also I have a FB autoimmune disease support group. It’s growing in leaps and bounds and we’re all really enjoying it. If you’re not already a part of it, you’re welcome to be. Feel free to invite anyone you think might be interested in or benefit from it and or this blog. The link is on the side bar of my blog. ———————->
So what topics would you be interested in addressing on here? Not much is off the table as far as this blogger is concerned. I’d love to hear from you.
Sunshine and Green Grass,
Mr. CrankyPants and I made the very long 10 hour round trip drive to see two of my specialists in one day plus I had a nerve conduction test done. We wanted to get both docs in so as not to have to make more trips. This was on Tues. Sept. 18/18.
I saw a Neurologist up there for the first time. Thankfully she was amazing. I was seeing her due to a tremor I had. The nerve conduction test was normal thankfully but…
She found I had abnormal reflexes. They were too strong. So..
I now have to have a head and spine MRI done to look for MS. It’s not like I hadn’t thought of this possibility before, but when a doc has concern about it, then it becomes more real.
My second appointment was a follow up with my Rheumie. The Humira is helping me which is good. But (Yes again)…
It’s not helping enough and so technically I need to be taking it more often. Unfortunately I can’t do that right now.
I can’t do that because my Rheumie wonders if the Humira isn’t causing some of my neurological symptoms. So we actually had to make a decision whether or not I continue on Humira whilst I wait for an MRI or not. We decided to continue, because when the Humira starts to wear of the pain gets really bad. So we’re not upping it, just staying on the same dose for now.
Having said that I don’t think that Humira is what’s causing my symptoms and here’s why. When I saw a Neurologist as a kid for my epilepsy, I remember him being concerned about my reflexes back then. I was never on Humira then. Also the cognitive symptoms like struggling to get words out and finishing sentences started when I was on Methotrexate and not on Humira. My Rheumie said she’s heard of mxt causing that but she’s never heard of it continuing for people after they came off of it. I’m always a damn ground breaker.
My memory was bad before Humira and much worse after Methotrexate. So to me, the symptoms don’t line up with taking Humira.
I guess I will find out. Who knows when. The wait for an MRI can be a very long one. I don’t know if they’ll fast track it given my circumstances at all but I don’t hold my breath.
I have to say I really like the Neurologist. She was kind, funny, thorough and really listened. She went through my whole list of concerns. I totally trust her with my care. That’s saying a lot coming from me. I’ve had a lot of bad experiences and I don’t trust many docs. I’m glad that I can trust the one looking after my brain.
My Rheumie on the other hand, I’d love to smack her. She’s giving me the meds I need, but she’s arrogant. She doesn’t like to listen and god forbid you might suggest something to her. Or let her know what you’re not willing to put in your body. I tolerate her for now because I need her. I stood my ground and made sure she listened to and answered all my questions and concerns. I pushed for what I needed whether she liked it or not. It’s too bad though that I had to fight for it. It’s tiring. We were up at 4:30 am to make the long trip there so I was going to make sure she gave me the time of day. And I did.
Word has it they will be bringing a Rheumie into our city once a month again. If that happens and it’s a decent one I will switch so I don’t have to travel anymore or deal with arrogance. (Hopefully).
I’m trying not to think too much about what could come of this MRI, but it’s hard not to be scared. Last year I was given 3 diagnosis in one year and I’ve hardly had time to wrap my head around them, now this.
I’m tired and overwhelmed. And ticked off that we’ve had a lot of snow this Sept. Argh! Having said that things have been so busy, I just keep going.
How are you all doing?
Warmer Days & No Snow,