I forgot to mention in the video that right after I had my first appointment with my new Rheumie, she went on holidays so now I’m yet again in wait to figure out where to go from here with meds for my RA. Hope this finds you all doing okay.
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,
I haven’t blogged since I had my biopsy. It’s been a very difficult journey and emotionally draining.
I was supposed to be admitted to the hospital the night before my trip via ambulance out of town. Everything changed just hours before I was to go.
I got a phone call and told that they didn’t have a bed for me and do I want to sleep at home and come in early in the am. I would then be picked up by the ambulance at 8:30 am. What?! I had a 5 hour journey, have to be there for noon. How will I make it if I’m only being picked up at 8:30??
They then informed me I was being flown. Being flown was good but last I heard I wasn’t so I was confused. Things changed and they didn’t tell me.
Anyway I agreed to sleep at home.
I get up at 5:30 am Monday morning and head into the hospital for 7:30. I arrive and no one knows what’s going on. No one knows where I’m supposed to go or if anything has been arranged. How scary and frustrating.
After a lot of scrambling they figure out who I am and where I’m supposed to go. I have a bed in the holding area to wait for pick up.
While waiting for pick up I was supposed to have blood work done. They forgot. So about a min. before the EMT’s arrive to pick me up I ask the nurse about the blood work. She’s like oh no I didn’t realize. Then I have the ambulance guys there waiting for me while I wait for the lab to come and take my blood. Sigh…
All that gets done and I’m finally taken for transport. The EMT’s are phenomenal.
I needed to have an I.V. put in. To make a long story short they struggled. Really struggled. After three blown veins I talked them into trying one more time. I wanted to be drugged. lol One of them agreed to try again. He finally got it in. He then told me he was new to doing this and it was his biggest fear having so much trouble. He had his nurse mother in his head very disappointed with him. I asked him why. He had just faced his biggest fear and succeeded. He should be proud. So a lot of blood and some very sore arms later I was finally drugged and happy to be.
Now we’re on the road to the airport. We get there and the plane is not ready for us and we’re already running late. They had to add more fuel since we also had to land part way and pick up a second patient. So two of us patients on stretchers on this plane.
We’re finally on our way and all is smooth sailing. Arriving at the airport, I’m picked up by two more EMT’s. One is harsh. I called him on it and learned it’s his culture. In his culture if a person is smiling they are considered insane. Wow! Anyway he smiled and became the nicest man ever. It was a good learning curve for me.
So now where at the out of town hospital. We get in and no one knows where I’m supposed to go. We are really late and we were sent all over the hospital, to different floors and back again. They finally figured it out.
So now I’m left in the care of a nurse and it’s time to get in a gown. It’s not long before I’m taken for the biopsy. I was terrified. Crying and shaking at this point. I’m also exhausted, hungry and dehydrated. I had to go without food or water.
I talked them into drugging me more before the biopsy. And then it’s done. I’m in recovery for a short time and wheeled to another floor.
On that floor I had a great nurse who took really good care of me. I was feeling pain pretty quickly and she was on top of it. I didn’t even have to ask. My back injury was hurting more then it had been too but I just pushed that off as the biopsy pain.
I had made and brought my own lunch with me and a good thing I did or I wouldn’t have had any food except a few arrow root cookies.
So all is pretty good until the second shift started and that awesome nurse went home.
Prior to her going home she had given me some IV morphine. Now I started to get nauseous. Enter second shift who ignored my warnings that I was really sick.
By this time it was evening and no food offered and no water. First shift had given me Gingerale.
I should mention during all this my GP had already stood me up twice and my Nephrologist never showed up at all to check on me.
So back to being nauseous. I kept telling them I feel really sick. They didn’t listen.
Too add more to the madness the ambulance was scheduled to come and get me at 6:30 pm. They did not come. There were a lot of calls made and confusion going on again.
It’s now passed dinner time and later into the evening. Still no food and still sick.
Now the area I’m in is closing down and all the nurses left to another area and I was all alone with a call bell.
Still no food or water offered and still sick.
Then feeling sick went to I’m going to hurl now! I called and I told those nurses off. I’m sick, it’s late, I haven’t been offered food or water. I’m in pain.
The nurse responded to me saying, “You could have asked.” I was mad at this point. I said I did ask and I did tell you I’m sick.
Finally scrambling again they give me IV Zofran that’s supposed to help with the sick. Then she gives me IV morphine. I asked if the Zofran would help with the morphine making me sick. She said yes. Okay fine.
I was told I get no dinner because I’m an outpatient but I could go to the cafeteria. This just after they told me not to get out of bed alone and being really sick.
So no food.
And the Zofran didn’t help much.
Now we’re at 10 pm and no ambulance dudes. The area I’m in is completely shut down now and the nurses are getting ready to go home.
10:30 pm the ambulance arrives. The said they were lost and looking for me all day. What? They were only scheduled for 6:30 pm. I don’t think that they were looking for me all day. And they could have called for directions which they’d already been given more then once. Anyway I’m finally wrapped up and wheeled to the ambulance.
Then from there I’m finally loaded on the plane. Still feeling very sick.
It’s not long before we’re off. By this time I had been asked by many staff if I’m being admitted to the hospital when I get back. Umm…I don’t know I thought that you’d know. No one knew.
So we’re in the air and I’m feeling sick but was able to sleep for some of the trip. I’m guessing about half way the turbulence got bad and was for the rest of the flight. I’m so glad I was drugged or I would have been freaking out.
Now the wheels are down and we’re headed in for a landing. I wake up and yell, that I’m going to be sick now! Two attendants unbuckle their seat belts as fast as they can while I’m gagging. They grab a garbage can and get it under me just in the nick of time. I was violently hurling as we were coming in for a landing. Not too embarrassing at all.
So we finish with that and I’m taken off the plane to a bunch of ambulance peeps smiling. I looked at them and said you heard right?!
They laughed. They were great.
They take over to wheel me into the hospital. They again ask if I’m going home or staying. I have no idea. It’s 1:30 am by this time. I’ve hardly slept and still no food. I asked an ambulance dude for some saltine crackers to keep from getting sick again. He got a bunch.
Anyway after more confusion it was decided I was staying the night. I was relieved. I don’t think I could have handled another half hour drive home in a truck.
So I get set up in a bed in the holding area for the night.
Part way through I was in pain again. I asked the nurse for something. She had to page my doc to get me something. As usual my GP never responded to the page. So I went the rest of the night and into the morning in pain. I used the call bell in the am to ask what happened to getting something for pain. The nurse felt so bad that the Dr. hadn’t gotten back to her that she put herself on the line and told me to take one of the Perocette I had brought with me. Bless her.
A bit later I told her I hadn’t had any food in a very long time and I threw up whatever I had so could I get some breakfast. She said she had ordered me breakfast. Bless her again!
The doc was supposed to show up to discharge me. He didn’t. The nurse put in a call and the Dr. discharged me over the phone. Nice.
So I call Mr. CrankyPants from work to come and take me home. Yay I’m finally going home.
I got home, took my time unpacking all my stuff then went to bed and crashed for three sweet hours.
A small break before…
I wake up and my thigh is totally numb and I now have excruciating nerve pain. What the hell is happening now?!
This post is very long I know. So I will continue the rest of this story on the next post. It gets crazier.
Stop the madness & Sunny Days,
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,
I hardly have words and yet my fingers type. I just got more bad news today. I’m shocked and devastated. I have an appointment with my kidney doc (Nephrologist) on Tues. She had me do a bunch of blood work and a pee test as usual before my appointment.
I was debating whether I was even going to go to this appointment because as far as I knew it was just a follow up from seeing her a year ago that they insisted I have. I even managed to talk them into meeting with me via teleconference rather than me yet again making the ten hour round trip drive to see her.
Her secretary called me today and told me she wants me to do one more test before I see her. I’m unable to do said test given I can barley walk with my back injury let alone drive. I tried that once this week and I paid dearly for it.
Doing the test before I meet with her was too short a notice.
I asked her secretary why I needed to do this extra test. Was there a problem.
She said she’d try and get the Dr. to give me a call.
A couple of hours later the Dr. kindly called me. She told me that my kidneys are spilling a lot of protein and blood. It’s way worse then ever before and things are showing up in my blood work that never did before. She was as surprised as I. The Dr. thinks that I have lupus nephritis. That’s lupus that attacks your kidneys. (Like Selena Gomez and Nick Cannon have).
Then she said she needs me to get a kidney biopsy asap which meant another long drive and a costly overnight stay. I think it was at this point I started to cry. Between the trip, the bad news and the fear of getting a biopsy, it was all too much.
On so many levels I’m unable to make another trip.
- Number one: My back Injury. There’s no way I could sit in a truck for 5 hours then have a biopsy and travel home after.
- Number two: The weather. We have snow. I can’t make this trip in the snow. The roads are not looked after up here.
- Number three: Mr. CrankyPants can’t take off anymore work to drive me. He’s already taken a day off for the last trip, a day off to look after me with my back injury, and he will be taking a day off to get his own MRI done.
Thankfully this doc understood and has come up with a potential solution. It seems she has some compassion.
She said she’s going to schedule the biopsy today. She’ll let me know the date when she does (It has to be this month). Then she’ll admit me to the hospital and have the hospital transport me to the out of town test and back.
That way Mr. CrankyPants doesn’t have to take off work and drive, and I can travel safely with my back.
This news has been one of my biggest fears. I’m not doing well with it at all. I watched my mother go through the hell of kidney failure and then transplant. I wish this weren’t happening.
I need life to give me a break.
I’m grateful the Dr. is kind and trying accommodate me. I will say that.
Although I can’t, I really just want to remain in denial. I’d almost rather have not known this is happening. The side effects of some of the meds to treat it are almost worse to me then the disease.
I fear I’ll have the “I’m not taking Prednisone” fight on my hands again.
I’m so weary. I’ve barely had time to deal with being told I need to be tested for MS, then I hurt my back badly, now this.
Maybe I need to go smash some pumpkins or something. I just want to scream no more.
Better Days & More Sun,