I’m a CrankyPants…

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,

CrankyPants

Nephrologist Visit…

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.

Soo..

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,

CrankyPants

 

The Madness Continues Part Two…

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.

Dammit!

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 now?

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.

ARGH!

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.

So..

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,

CrankyPants

MRI

Oct. 23/18

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,

CrankyPants

 

Another Kidney Update…

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.

Next…

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,

CrankyPants

More Bad News…

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.

Uh oh…

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,

CrankyPants

 

 

I’m Livid…

 

Sept. 28/2018

So I’ve been waiting for a GI appointment for five months now. I was told five months ago that a referral had been sent.

I worked up the courage yesterday to call the GI’s office. They called me back this morning and told me that a referral had never been sent. All this time I’ve been waiting for a call about an appointment.

The specialist that did this has done this before. It’s not the first damn time. Not only that this is the same specialist that took me in a room shut the door and fondled me.

It’s why I asked for a referral to see a GI rather than have to go back to him again. Not that he ever told me I was supposed to follow up. I heard that from one of my specialists out of town.

The very first time I ever saw him, I thought he was great. He was the first one to diagnose me. After that, things went downhill. Four hour wait times past my appointment to see him, disappearing from the room in the middle of an appointment, treating me really bad just before I had my scopes done by him. Mr. CrankyPants was witness to that one. I had my scopes done after the incident as I hadn’t realized what happened wasn’t just an exam. It’s the scope situation and how bad he treated me that gave me the epiphany. You don’t always realize in the moment what’s happening. Call it freezing or shock. It’s hard to put into words. Your brain can’t wrap around the reality of what’s happening. Having been a sexual abuse survivor, my brain just couldn’t cope with it and when it was ready it hit hard.

Not returning phone messages. Or his staff didn’t answer at all. I had been in process of debating whether to report him for the fondling thing. The reason it’s been a tough decision is because it’s not likely much will be done and I’ll be the one going through hell after reporting it. If it does go anywhere, there could be a hearing. We plan to move out of province and if there’s a hearing I’d have to come back for it. The process can take up to a year.They would pay. You all know how hard travel is, not to mention the stress of a hearing. Even with a hearing, if they believe me there’s not much they will do. They’ll watch him but let him keep practicing.

After this and finding out he’s the reason my neighbour died. I’ve decided to report him. Maybe a mark on his record will be enough to stop him from doing it to someone else. Maybe there’s others like me who are too scared to report or have reported.

Really nice how the bad guy’s off the hook whilst their victims suffer basically for life. I already had a fear of Dr.’s that was pretty extreme for reasons I just can’t talk about right now.

Now this Dr. has made things all the worse.

I’m so very tired of fighting with our medical system. They are supposed to take care of us and have our best interests at heart. Sadly it’s very rarely the case anymore.

I’m weary.

Sometimes I feel like saying to hell with it all in regards to my lack of health and just let nature take it’s course. It seems the meds and the medical system are no better than the diseases.

Sorry guys, I’m just so livid today. They’ve pushed me too far.

To end on a positive note, the GI’s office was great. They very obviously dislike the doc that caused all this. They told me exactly what to do to get a referral quickly. I did that. They said they’ll wait for it and get me in asap and they apologized for the other Docs negligence. That was so welcomed in the moment.

I won’t say I didn’t cry with frustration. And I rarely cry.

What would you guys do re reporting or not? Would you get a Lawyer involved?

Rainbows & Sunshine,

CrankyPants

Housekeeping…

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,

CrankyPants

 

Another Long Trip to the Docs…

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,

CrankyPants

Dr. Appointment Overload..

I’m presently scheduled or waiting to be scheduled to see 6 different specialists. Is it just me or is that insane?!

That’s what autoimmune diseases do. I hate it. I’m a CrankyPants about it.

Three of those appointments are the 10 hour round trip drive away. So…

Two weeks ago I spent a part of my week trying to work that out. I managed with my Nephrologist to talk her into meeting with me via teleconference in a town near me. Let me tell you that was not easy to do. I don’t think I need this appointment. This is just a follow up from a year ago. I’m doing better in this area then a year ago and ironically off the meds that were supposed to help. Things that make you go Hmmmm.. Anyway the doc won’t let me out of it because she’s expected by the College of Physicians to follow up after a year. Well good for her. That doesn’t suit me. If it’s not truly necessary to be seen, I have better things to do. Anyway, at least I don’t have to do the long drive for it. If I had to I would have just cancelled it.

Two other specialist appointments are this far away too. This was a whole other headache. First I was told one appointment was at a certain date and time. When I called to rearrange it, I found out not only did I not have an appointment at all but I was never referred. That was confusing for both of us since I had just got off the phone with the referring Dr.’s office and was told I was. So this took a number of other calls long distance back and forth to work that out.

Then I had to make a number of calls to try and arrange the appointment on the same day as another appointment in the same building. I found out I was also to have a test done I wasn’t told about. Sigh…

So now I have my Rheumatologist, and Neurologist appointment booked on the same day along with a nerve conduction test for the tremor and other neurological things going on. That includes in the same day the 10 hours of driving. A positive here, I’m getting in with the neuro in less than a month. That’s good.

It’s going to make me bad shit crazy. Or already has.

I’m also still waiting to hear about an appointment from the GI for my gut issues. Who knows when I’ll get that call.

Now, I’m being referred to a urologist as there’s something not normal with my stoma and I’m going to ask the doc about the extreme frequency I’ve had to live with for 20 years. I’ve not been seen by anyone even to check up on my stoma/ostomy in 18 years.

And if that weren’t enough…

My GP is referring me to an ENT. I can’t breath through my nose, never have been able to and no nasal sprays help. It doesn’t let me sleep. He said I have a mild deviated septum and swelling up there so he wants me to see an ENT. At least for once my GP took me seriously. That’s a first and it pleasantly surprised me.

The last two referrals mentioned are a 3-6 month wait. Argh! We are trying to sell our house which has been so frustrating so we may not even be here by then.

See what these autoimmune disease do? They attack everything and make us go to tons of doctors appointments many of which are sup-par docs to put it mildly.

And if we’re not seeing docs we’re getting tests done.

I feel like my whole life is consumed with the illness and the medical everything around it. I need to find some balance but I’m not sure how.

I’m overwhelmed with it all. I’ve been so slammed with diagnosis, complications, tests and appointments that I’ve had no time to process what’s happening with and to me. No time to cry. Just no time. The RA, Osteo and Rheumatoid diagnosis’ are not even a year old for me yet.

On a bit more of a positive note, Humira is helping me with the pain so I’ve been able to work out again. I love working out, getting that back for now anyway is a victory.

I went out to the conservation area this weekend for a walk with Mr. CrankyPants and my dog twice. We got to see two momma and two baby deer. I never tire of seeing wild life in the wild. That made me happy.

Being able to do those things helps but I really struggle to be able to get together with any friends because of my limitations. I just feel like I couldn’t keep up and I’d be more of a burden then anything. I haven’t got that figured out yet.

Right now one of my friends is working so hard at fixing up her daughter’s place alone. I listen to all the work she is doing and wish I could go give her a hand, but it’s not work my body would be able to handle more of. It’s work I just finished a while back doing to our own home and I’m just so done. I want to be there for my friends but how?!

How do you all cope with this stuff? Like I said above, I’ve had no time to figure all this out. How to find balance between the disease and living life.

That’s my reality right now.

Sunshine & Summer Days,

CrankyPants