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Two days ago my mother collapsed. Today (Feb. 17/2019) we were told my mother is brain dead. She’s on life support in ICU fading away.
On Wed. three days from now, I’m flying home for the first time in years to support my sister through this. I’ve been estranged from my parents do to abuse, but it’s time to go home get closure, say goodbye and be with my sister and nephews.
It’s weird when a parent dies that has been abusive how you feel. I’ve been surprised in some ways by the grief but it’s different then if you have a good family. It hurts that there will never be a chance for things to be better now, that I expected to feel. It hurts that she’s almost gone. That I didn’t expect to feel. I’ve been wanting them gone for many years.
No matter what they’ve done to you or how bad it was (and it was bad) they’re still your parents and you still love them.
It’s a very very difficult decision to make to cut them out of ones life but it had to be made. So I’m going home to deal with all this. My abusive father is still alive but not well either and now weirdly broken as his slave is leaving him.
My parents told my sister not to tell me she was ill. This was back in Dec. so while they’ve all had time to process this to some degree I was shocked with it two days ago. That’s been painful too. They did this last time my mother came very close to death too. Both times I didn’t hear about it until she was on life support and not expected to survive.
At least she’s at peace now never to be abused or abuse again.
So I feel like going home, is going into the dragon’s den but at least I will never again have to listen to or see my father abuse my mother. He will try to abuse us but I won’t have it.
As far as my health I haven’t been well before this happened. The pain is bad, my kidneys are still causing trouble and my stomach is bad but I guess it’s par for the course with autoimmune disease.
Grief on every level. Just grief.
I’m so tired.
Sunshine & Rainbows,
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,
I saw my kidney doc today via tele-health conference. I haven’t let anyone know as of yet about the appointment because it’s hard to know what to say or how to explain it, as I don’t really know what’s up.
They didn’t find any lupus nephritis or mixed connective tissue disease effects on my kidneys which is good I think.
She said in one part they found something a bit weird like stands of the kidney being pulled apart. This can be a rare disease that I can’t remember the name of now but she said if it was for sure the whole biopsy would have looked like that so she’s not sure.
She said all my tests are back to my norm which isn’t completely norm but they’re not at the alarming numbers they were with the one set of tests.
She said things in the alarming tests could have been read wrong, or it could have been this disease that’s known to show up like this out of nowhere and go back to what is my not normal norm.
She also said there’s a possibility that Humira which I’m on could cause this to happen.
I feel like I came out of the appointment with less answers then I went in with and I still don’t know why my kidneys are leaking even some protein and blood.
The Dr. is going to put me on a blood pressure medication but, not for high blood pressure. It’s to see if she can stop the fibers from pulling apart in my kidney and leaking protein.
I’m sure as you read this, you’ll understand why I’m confused and don’t know what to say in updating people. I wish that I could remember the name of the rare disease. I’ve never heard of it before and if you know me at all, you know that I am the queen of medical research.
I will be yet again followed by my kidney doc for the next year (Or as long as I live here) getting blood work done again in two weeks and then every three months there after.
As far as the nerve damage, I’m still in a lot of nerve pain but it doesn’t feel like I’m being stabbed by a hot poker every time I move certain ways now, which at least allows me to get dressed and drive easier. I also still have some numbness. The kidney doc says I need to find out what’s going on with my back and that I should follow up with my Neurologist who never called me back regarding my MRI results. My GP shared them with me.
She said the Neuro should have followed up with me regardless of the results. And I should ask about getting an MRI or a cat scan to figure out what’s wrong with my back. Again I don’t know if a nerve was nicked by the biopsy or if the biopsy triggered my injury into a bad state.
I called the Neuro today and of course I didn’t get anyone in person, so I’ve left a message and will await a callback.
I feel like I’m just getting passed off from doc to doc. Well maybe because I am. I just wish the kidney doc cold have ordered an MRI or cat scan for me rather than make me contact the neuro. The nuero is a 10 hour round trip drive away too and, I can’t make anymore trips. My back, the weather now, and just having had enough, I just can’t do another.
So that’s the update.
Here’s what I know about my body and why I’m not really celebrating…This is the way things always go for me when something is very wrong. It rarely ever shows up in tests right away, and then all of a sudden way down the road what ever is wrong will suddenly start to show up. It happened this way before I lost my bladder and it took 3 years for RA to start showing up on tests..Etc. I knew long before docs that I had RA. I suspect eventually whatever it is will show up. I’m guessing it is related to autoimmune disease be it lupus nephritis or otherwise. I’m guessing the “weird” part she did see will reveal itself further over more time. It just seems I have symptoms always long before it hits my blood or other tests that would reveal the issue. I didn’t bother telling the Dr. that. I didn’t see what the point would be in doing so.
Do any of you have symptoms long before things show up in the Dr.’s text book tests?
Stop the Snow & Bring Back Summer,
I left off with finally being home, having a three hour nap and waking up to my thigh being numb and having excruciating nerve pain. Part one HERE if you missed it.
At first I thought that maybe I just slept funny but when I went to sit up the pain hit so hard I screamed and hit the pillow.
I waited a bit to wake up some more and figure out if this was going to pass or not. It didn’t. So I put a call in to the Nephrologist’s nurse. She called back fairly quickly. She said she’d talk to the Dr. and get back to me the next day. I was kind of thinking maybe just some swelling from the procedure might be pressing on a nerve. I should remind you here that I mentioned in my last post that my back injury felt worse as the freezing was coming out from the biopsy.
I need to mention here as well that I’m supposed to be completely resting for three days after this procedure. That did not happen and here’s why…
I got a call mid morning from said nurse. She told me that the Dr. said if it’s bad or get’s worse that I need to go back to the hospital.
I needed to go to the hospital. It was really bad. I didn’t have a way to get there. Mr. CrankyPants just could not take off anymore time. He’s in busy season at work not to mention he’s the sole provider.
I got a kind offer from a friend in town to take me to the hospital. I chose to go to the small town hospital rather then the bigger city one. The small town one is always much quicker to get in like almost immediate as opposed to an 8-12 hour wait at the bigger one. They are also much kinder Dr.’s and medical staff all around. The downfall is they don’t have some of the big equipment needed from some tests.
So instead of resting I’m crawling out of bed and getting ready to head to the hospital. Once there after being triaged, they told me that they were calling in the Dr. He wasn’t there. That’s the second time in two months they have had to call the Dr. in for me. The first time with my initial back injury.
After a short wait I was seen. The Dr. there and my Nephrologist wanted blood work done immediately as well as a urine sample. The sample part is no easy task for me with having a urostomy and having to be dehydrated to leave the house. Let’s just say that part took a long time.
They wanted to rule out a possible bleed and or infection. I have to say that I was getting good care. A big bleed would mean a blood transfusion and a small would mean watch it and make sure it dissipates on it’s own.
So those tests ruled out both of those so far. Then the Dr. said he figures that a nerve was nicked during the procedure. Oh man! That’s not the worst of it. He then gently tells me that nerve damage takes years to regenerate and this wasn’t going to be better anytime soon. I think I was numb at that point. The pain was so bad I couldn’t wrap my mind around now having to live with this crippling pain. And I mean crippling.
Then the Dr. tells me that he and the Nephrologist want me to get an ultrasound done to check on my kidneys. Guess what?
If you guessed that meant driving close to an hour to the hospital we chose not to go to, you’d be right. The kind Dr. though managed to get me in for one as soon as I could get there rather then waiting until the next day. My friend was more then willing to take me. I was so blessed.
So off we headed to the second hospital. It was a long and painful day and evening but I had no choice.
I got the ultrasound done and it was found to be normal. Then no one knew if I was supposed to head home or go back to the other hospital. Apparently I was supposed to know. After some calls I was told I could go home. Okay but one problem…
What has happened to me and where do I go from here? I can live with the numbness but not this pain.
I went home took pain killers and decided to call the Nephrologist in the am.
Am came and I called.
I was told from here I need to go see my useless family Dr. that this issue isn’t their department even though the issue was caused by their department.
That meant another trip into town and having to ask another friend for a ride there. My GP’s office squeezed me in as an emergency. Another friend was more then willing to take me and again I’m grateful for that! I forgot to add that with this pain I can’t drive.
So while I’m supposed to be resting, I’m yet again getting ready to leave for the Dr.’s.
We arrive at the Dr.’s office and it’s jam packed full. My jaw dropped and my heart sank. How am I going to sit there for any length of time in this kind of pain? The office was hot as hell with all the bodies filling it too.
We waited, and waited…
Finally my name was called by my GP’s nurse. She I have to say is amazing. She’s one of the reason’s I haven’t left my GP sooner. I talked to her about leaving, why and wanting all my medial records in hand. She was stunned the GP had treated me the way he had and was happy to oblige in getting my medical records ready. While talking to her my blood pressure was being tested. I didn’t notice. I forgot that was put on me.
She stopped dead and said my blood pressure is dangerously high and she was very worried. I asked her to let me try going to another place in my mind. (My happy place.) and then try again. We did that. It came down a bit but it was still very high. In this case it was somewhat of a good thing as it gave the Dr. a visual along with hardly being able to move of just how much pain that I was in.
My GP is fairly useless but actually showed some kindness as he could see the suffering. He scripted me Gabapentin for nerve pain and told me whatever is going on is in my L1 and L2 areas of my spine. Right where my back injury is.
What he didn’t tell me is what injury I have, how long it would take to recover from and or offer me any testing to find out what’s happened.
I’m home with this Gabapentin I’m concerned about taking as it’s not good for kidney’s and you have to be tapered off it. I have no idea what kind of damage I’m dealing with, and no tests on the horizon to find out.
I see my Nephrologist via Telehealth conference on Tues. to get my biopsy results. You bet I’ll be talking to her about all this as I’m somewhat crippled now. I’m considering talking to a lawyer at least for a free consultation to see whether this is something worth pursing.
This is life changing. It’s possible that the procedure triggered my back injury into an acute state, but even when it was acute before I’d never had numbness or nerve pain. The Nephrologist said she’d seen this kind of thing happen before where a nerve is nicked during the biopsy. There was never a warning given to me that this could be a risk. You’d think there should be when it can turn out this life altering.
I asked the nurse if the Radiologist who did my test is going to be informed of what happened. Her response was, “I don’t know.” Go figure.
So that’s where I am now. I went to town with Mr. CrankyPants yesterday while he got groceries just to get out of the house to do something non-medical. I couldn’t walk. I had to use the scooters in the store. I was still in unbearable pain by the end of the trip. It was still good to get out of the house.
I’ll update you all with my test results after I get them on Tuesday. And how the conversation about my injury goes. My friend who took me to the two hospital’s the other night is taking me to this appointment on Tues. I’ve invited her to sit in on the appointment. She thinks of questions I may not think of to ask. She’s also not afraid to speak up if it is necessary. She’s a good one to have in on this. She’s also battled some hard health issues including cancer herself and she worked in the medical system for years. I need her in on this with me.
To end on a positive note. I got my MRI results back when I saw my GP. It’s all clear, no MS showing. That is good news! I’d still like to know why I have a weak arm with a tremor though. My tests almost always show up clear in the beginning even when there is something wrong so I’m not fully celebrating that yet. I do hope I’m okay in that way though.
Sunny Days & Ice Cream,
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,
A hopefully short update. Mr. CrankyPants was scheduled to have an MRI today. Just before we left for the hospital I got a call about scheduling my MRI. I told the secretary I was on the way there for Mr. CrankyPants and asked if I could schedule while there. She said that was fine.
When we arrived they checked in Mr. CrankyPants and knew who I was right away and told me they’d look after scheduling me next.
So she pulls up her schedule and tells me that the soonest she can get me in is mid Feb. What?! My MRI was supposed to be emergent which my Neuro failed to mark on the form. So she said let’s book it anyway, and while I’m there I’ll call my Neuro and find out what’s going on.
I went to sit in the waiting room to make the call. As I was dialing, the secretary was talking to one of the radiologists. I hear my name mentioned.
She looked up at me and said, “Today is your lucky day.” They arranged for me to have the MRI right after Mr. CrankyPants’. I felt like a deer caught in headlights. She told me to run upstairs and register quickly. I did that, came back down, was handed paperwork to fill out. As I was doing that the radiologist came out and told me it’s time to get in a gown. I said I’m not quite done the paperwork. She said I could finish after I change. Oh those
lovely ugly as sin hospital gowns.
It all happened so fast. Mr. CrankyPants was through in a half hour and the next thing I know I’m on the MRI table with hat head and trying to hide my unshaven legs.
My MRI is done!
One day after they got the order!
I’m so thankful. It sure is nice to get a break every so often when I’m fighting constant battles with the medical world to get what I need so often. I was a squeaky wheel today. I said it was supposed to be emergent and I’m having trouble using my right arm. I can’t wait 4 months.
They didn’t have to work that out for me at all, but they did. It goes without saying that I thanked them profusely. (I said it anyway. 😉 )
I wonder if they know how much that kind of thing can mean to a person. How much that made my day. I’m so Happy to have it done.
And it’s T-minus 4 days until my biopsy. I’m so anxious. I haven’t been sleeping great because it’s weighing heavy on my mind. I’ll be happy when that’s over but there’s not much reprieve as the results are potentially bad news. It will be good to have the test over with, I just wish that it would be the end of it all.
There is no end to autoimmune illness. Sometimes that reality hits home hard.
Anyway, I just want to sit in this small victory tonight.
Well as usual this post is again not short. lol I try. I really do…
Good Days & Unicorns,
All of last week was spent on the phone with Dr.’s, nurses, or other medical people. It was crazy. A lot of it was arranging this biopsy. To make a long story short. I’m being admitted to hospital next Sunday (Oct. 28th/18) and then transported via ambulance on the 29th, having the test done and being transferred home the same day. They won’t admit me for a night to recover. The Ambulance dudes wait until my procedure and recovery are done and drive me back. Crap. That’s going to be one hell of a long painful day.
I am grateful that the doc went to bat for me and arranged this transport. I have to give her that.
Because the drive is so long they had to rearrange my biopsy time. They are usually done at 7 am no exceptions. There had to be an exception made as it meant I’d have to be driven through the night and then driven back same day. The ambulance dudes are not allowed to do that. I’m glad. That’s dangerous. However that’s what they’d expect me to do if I didn’t have this back injury. So it was either get flown by air ambulance which I was hoping for as it would have made a lot shorter of a day, or change the the biopsy time. They changed the time dammit. Now it’s at 1 pm and I have to be there for noon. It still means I won’t get home until late at night. I hope I don’t have to get Mr. CrankyPants out of bed on a work night to come get me. Something’s got to change up here with this medical system. It’s not fair that they expect sick people to make 10 hour trips, and have painful procedures all in one day.
If Mr. CrankyPants were taking me it would have been a three day thing. Drive one day, procedure the next. Stay overnight and drive home the next. Who can take off that much work?! He’s already taken off work for me one day with my back injury and one day for another recent trip to Edmonton. I know this won’t be the last and it’s all too much.
My stress levels are through the roof.
I found out that a rather urgent brain and spine MRI referral for me was never sent. Now I’ve been on the phone back and forth with my Neuro’s office about that. The neuro issue is getting worse. I had a tremor which is still there to some degree, and now weakness that has traveled all the way from my wrist up my arm. I was told it was possible the meds I’m on could cause some things. I found out after a call from my Rheumie last week that my Neuro doesn’t think what’s happening is from the meds. So..that’s scary. Not only that I was also told said meds can unmask MS. I need to know what’s going on. I’ll likely be back on the phone with the Neuro’s office tomorrow. I’m being tested for MS.
It feels like my whole life now is consumed with medical everything. My only outings are Dr.’s appointments, tests, and maybe errands. I need some balance but I’m not sure how to navigate my way to it. By the time I get done with all the medical shit, I’m tired and I have no energy for a social life. I’m always in pain, and I can’t eat what most people can.
How do you find balance with chronic illnesses? Is it possible?
I will say Mr. CrankyPants took me out for dinner last night. That’s not easy for him or I. He has to gage how I’m feeling. We have to find a restaurant where there’s food I can eat. It’s stressful too. Having said that we did find one and we had a nice time. We wondered around a couple of stores after. It’s very rare that I’m in town where I’m not in a mad rush. Last night was not a mad rush.
Today the weather was beautiful so we went twice for a walk in our conservation area. The second walk I did without my crutches for the fist time in a week.
I also went into town on my own for a short time today to find some new P.J’s and slippers for the hospital stay. That was also not rushed and really nice for me.
Having said that I don’t have the energy to get together with my friends. I feel so bad. I feel as though the world is going on living and I’m just watching it pass me by. Thankfully the friends I have are very understanding but how long can I keep them if I rarely get to spend time with them? I can’t keep up with the things they can do. I don’t want to hold them back. I feel like a burden. (Not that they make me feel that way at all.) I just do.
And now as the Christmas season approaches I dread it. I dread invites to parties. Mr. CrankyPants is already invited to one in November he wants me to come. Again, how do I keep up? I can’t eat the food that will be there and there’s pressure. I may bow out of it. It’s his friend and I think he needs some guy time without me once in a while. He has zero social life. I don’t think he needs me for this one. Last time I went with him to this friends party I sat there all night while they talked about their work. His wife was running around trying to find food for me to eat which I didn’t need but she was insisting. This after she had spent days cooking a huge spread for this party. She wasn’t supposed to find out I couldn’t eat what was there but somehow she did.
How do you guys deal with the holiday celebrations?
As you can probably tell by my blogging this is a journal of sorts for me as well. I hope you don’t mind that.
How are you all doing?
Better Days & Rainbows,
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,