My Mother is Dying…

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,

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

 

Stop the Madness!

Oct 28/18

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.

WHAT?!

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,

CrankyPants

A Rock in my Boot…

First I want to wish everyone in Canada a Happy Thanksgiving. I’m not honestly sure that I have any Canadian followers. If I do, I hope you had a great holiday weekend.

My weekend went well until today (This afternoon). Oct.8/18.

Mr. CrankyPants and I slept in a bit and then spent our morning preparing our turkey and all the trimmings. Then of course a nap came in for me. I’m all about the naps.

We had decided that even though it was cold and snowy we wanted to go for a walk in our conservation area. That place is solace to us in our very stressful chaotic lives.

So we got the pooch ready and we headed off to the park.

I was really looking forward to the walk before having that fabulous turkey dinner waiting for us at home.

When we arrived. We leashed up the dog and walked about 20 steps. I had a rock in my boot. I went to pull my boot off to ditch said rock and boom it happened…

I felt something crunch in my back and then excruciating pain hit. I couldn’t walk or stand.

Mr. CrankyPants is trying to hold on to me while dealing with our pooping dog. (Talk about timing).

I was in tears at this point and trying to figure out whether the pain would pass or not. I think there was some shock going on too.

He asked me if I want to go home. I said no, just take me back to the truck and I’ll wait there while you walk. I did not want to ruin this for him and poopy pants.

But…

It became evident very quickly that this was serious. I couldn’t even get to the truck.

About this time a brave fall camper happened by. He saw that something was very wrong and came over. This camper was I would guess in his 70’s. Would you believe he and Mr. CrankyPants together carried me back to our truck. Talk about wonderful kindness.

I felt horrible for both wrecking the walk and needing a 70 year old to help carry me crying to our truck. Man the guilt.

Anyway, we did not go home. Well we did, to drop off the dog and get my health card.

Then we headed straight to the hospital. One of the small towns near by has a small hospital and the best care. It’s usually much quicker then our big hospital in the main city. And by much quicker, I mean 8 hours or more quicker with wait times.

When we arrived I got out of the truck still in some shock with the pain and I tried to walk.

That was a no go.

Mr. CrankyPants grabbed a wheelchair and took me in. Not only was I taken through triage immediately but, I went straight to a trauma room. The Dr. wasn’t at the hospital but came in to see me and thankfully one other patient, so I didn’t feel like I was the only reason he was pulled away from his holiday.

Doc checked me over while I was still sitting in the wheelchair and decided to order x-rays to rule out a fracture.

I was given a Torodal shot which technically I’m not supposed to have, but the doc felt in this case it was the lesser of the two evils. I have a lot of medication allergies and this wasn’t one.

Those needles can hurt. I feel like I’ve been punched in the arm.

Then it was off to wait for x-rays. Holy crap on a cracker getting up on the x-ray table and positioned had me in tears all over again. I should stop here and say the tech, the doc and the whole staff were amazing. That helps a lot.

So the good news is there was no fracture. Bad news is he thinks I may have slipped a disc. I also have degenerative disc disease ( which I think is Osteo. If so I knew that. If not add another painful medical thing) and I have scoliosis. I already knew that. Funny how that hasn’t been mentioned by any other docs through out this whole disease process in the last few years though.

This Dr. could see how much I was suffering, and that the Toradol did not touch the pain as I warned him it wouldn’t. He graciously offered to give me another punch in the other arm in the form of a morphine shot. I gladly accepted. I didn’t see any other way that I would be able to get into our truck, or walk into our home with way too many steps.

I’m home now with instructions to take extra Percocette (Aka more then my norm). I’m to take muscle relaxants 3x a day and follow up with my GP in a couple of days to let him know what happened and get a bigger pain killer script. I can’t see how the follow up is going to happen given I can’t drive myself right now, and my other half has to work. My other half is going to let his work know what happened so if I need help at home he can come home. Looking after our very needy stubborn dog is a challenge on an average day, let alone with this going on.

Doc said I should do some moving around so as not to end up with blood clots and atrophy.

I will be very drugged up for the next few days, although that will knock me out it will also help me move a bit. When I do walk my whole body shakes and my teeth chatter. I don’t know if that’s from the pain or what. It’s weird.

I’ve had some pretty bad back pain for quite a few years now but this trumps it all at the moment.

I was so scared. Scared of how I was going to do anything much on my own. I guess you just do what you have to when there isn’t a choice.

I’m going to have to stay on top of the pain since I can hardly move with the painkillers.

Despite it all, I’m grateful that:

  • A senior stranger in the park was willing to help carry me to our truck.
  • I was seen immediately at the hospital
  • Doc and tech both came in on their holiday to look after me
  • All medical staff was kind
  • They believed I was truly in pain and not just drug seeking
  • They gave me that morphine punch which helped get me home
  • Mr. CrankyPants took me to the hospital
  • We had our Turkey dinner all made ahead of time
  • We came home to a yummy turkey dinner
  • The morphine lasted long enough that I was able to eat our dinner at the table,and then get set up on the couch for the evening
  • My back isn’t fractured
  • I won’t have to cook for the next week since we have a ton of turkey dinner to eat up
  • So much good can be found in bad situations

I don’t know how long this is going to take to recover from and that worries me, but I guess I just have to take one moment/day at a time.

And that’s my Thanksgiving story. My operation boot and rock removal, ended as operation walk removal.

Better Days & Sunny Skies,

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

 

Yet Another Thing…

Hello blog world. How goes your battle? We truly are warriors aren’t we?! I admire everyone waging war with autoimmune diseases. They’re vicious, relentless, ambushing, painful, annoying diseases that too few understand including the medical world.

Anyone else in on hating the autoimmune diseases club?!

I have a new development as of last week which is now forcing me to see yet another specialist. So presently, I’m booked in or being booked in with 4 different specialists. Yes that sucks but, what sucks worse is three of them are a 10 hour round trip drive away. You heard that right. That’s not only impossible for me, but since Mr. CrankyPants has to take off work every time to drive me, it’s impossible for him too.

I’m presently trying to get out of one appointment that I believe is completely unnecessary. If I thought for any reason at all that it was necessary I wouldn’t be trying to get out of it. Right now as far as I know, I’ve managed to talk them into a teleconference appointment in my own city instead since they’re not letting me away with cancelling. That’s the Nephrologist.

I’m in process of trying to get the other two out of town appointments covered in one day since they’re both in the same building. If I can do that, it means only one trip rather then three.

I know you’re still wondering what the latest development is. I guess I shouldn’t keep you waiting any longer should I?! Well just for a min.

The appointment that is in town already hasn’t been made yet but that’s with the GI regarding my gut. I’ve heard she’s amazing and the kind of Dr. everyone wishes they had so I asked to see her and I’m grateful for the referral to her. I don’t know how long the wait will be.

The other two are the Rheumy and drum roll please…I’m now being booked to see a neurologist.

I have developed a tremor. The Rheumy is concerned and wants me to see the neuro.

I’m grateful to be referred to the neuro as I have other neuro stuff going on aside from this new tremor but, my heart sank when I found out that yet again it was going to be out of town. Geeze we need specialists up here.

If I was doing things the Dr.’s way, I would be making three 10 hour round trip drives in two months to see these docs. Who can afford that financially or health wise?! It’s ridiculous. I hate our medical system and it’s making me a CrankyPants.

Do they not get that we are sick people?! I’m so weary.

I don’t know if I mentioned prior that I’m looking into reporting a Dr. here for a serious situation? The College of Physicians think I need to. If I have already, just an update. I haven’t decided yet whether I want put myself through the stress of it only for the College of Physicians to do very little to nothing anyway. Sad that Dr.’s are so protected but patients aren’t.

Anyway, I’m worried about this new tremor thing too. I hope that I can get some answers. I hope even more that it’s nothing to worry about. While I’m there, I’ll take the opportunity to tell the Dr. about my really bad memory and my struggle to get words out and form sentences that started when I was on methotrexate. I’d really like to get an MRI and maybe a brain scan so I know if anything worrisome is going on.

Or if I have a brain at all. 😉

One more thing. I grabbed the opportunity to ask the Rheumie while I had her on the phone, for an ultrasound on my foot since it’s become so painful I can’t walk on it. Rather my big toe joints. She complied and I’m happy about that because I can’t get my GP to do anything. The bummer is, it’s a 6 month wait for an ultrasound. Grrr…I’ll get myself on the cancellation list I guess.

How are you all doing in your battles? I’d love to hear from you.

Hot Days & Rain Coming,

CrankyPants

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

Fatigue…

Hot damn the fatigue slammed me this past week. I always have some level of it but, this was way beyond that level. It was hard to function and hard to think but I had to anyway. I find when it’s this bad I get overwhelmed really easily. Anyone else? I usually have a number of people messaging or texting me throughout my days, and the phone going off all the time was driving me nuts.

It’s even harder when it’s happening while I’m trying to sleep. And with all that’s going on, I can’t really unplug.

I think and HOPE it’s lifted a little bit as of tonight but wow it’s debilitating.

I’m guessing I crashed from the insane busyness of the past couple of weeks but there wasn’t a choice.

It’s so hard having to function every day as though I’m not sick, when I’m sick.

When people get the flu it wipes them out and they go to bed, rest and recover.

Not only do we not get to go to bed, or rest, we never recover. It only gets worse and then we have to live as though we’re fine.

I don’t know about you guys, but when things get crazy busy for me, I usually get hit after the fact with a flare. I always have pain but I get hit with debilitating pain and fatigue.

Sometimes it’s so after the fact that I can’t even link it to any one thing.

There’s so much guilt attached to it too, but I’m learning to self talk myself out of that.

And this is part of why I’m a CrankyPants.

That’s all I have the energy to blog tonight. Stay tuned for more about a serious subject regarding the possibility of reporting a Dr.

How are all of you doing?

Rainbows & Sunshine,

CrankyPants

 

Please Slow Down Life…

I have seriously had no time to blog. Life is going at the speed of umm…life.

In short I still haven’t started Humira. It’s such a process with the Ins Co. and the Co pay Co. to get on it. I’m now approved, fully covered and it will be ready for me (I hope) to pick up after the long weekend.

I won’t start until next weekend when Mr. CrankyPants is home. I don’t like to be alone when I start a new med.

We have been working hard to get our house ready to put on the market. We wanted it on by now but, we’re getting new counter tops put in and there was a two week delay do to a mistake the store made. I really hope they go in next week.

While we’ve been waiting for that, I’ve been doing some more painting. We bought new sinks and taps and cupboard door knobs.

We have some trim to put up in the bedroom I just painted, gardens to plant, a house to purge of as much as we can before the town clean up next weekend.

And the list goes on.

Three days ago you probably wouldn’t be surprised to hear I went into a bad flare. My neck is in so much pain I can hardly hold my head up. My whole back is in spasms. One day I let myself rest more then not but only because I couldn’t hold my head up without intense pain.

I’m still in a lot of pain but aside from a nap, I don’t have time to stop. I truly wish I did.

This coming week I have a docs, appointment, a dog to take to the vet and I’m sure more. It’s so hard to drive when I can’t turn my head but I’m the only one who can do this stuff. Mr. CrankyPants is in busy season at work, so he’s  working long hours. That means I have very little help at home and boy could I use it.

I have no family up here and even if I did, they wouldn’t be in my life. So…I have to keep going as though I’m well when I’m not. Fatigue is always a battle as well and I think I might be getting a cold.

Aside from all the above there’s also been some personal hard ass battles we’ve been fighting. I’ll just leave that there other then to say one of them involves a neighbour again a different one then the one next door. It’s so stupid what people will fight over.

I’m so tired. I want to know what peace feels like again. I just want to move to a place where home feels like home and I can be at peace when I’m home. Where I could actually sleep in my own bedroom again.

I will end by saying we’ve been enjoying a wonderful long weekend. The weather is perfect, Mr. CrankyPants actually got the entire long weekend off and as a result we are able to get a lot of things done. We’ve also enjoyed dinner out last night.

Mr. CrankyPants is in his happy place because he’s gotten to do some gardening. He’s a summer man through and through. And we’ve taken a nice walk in our local conservation area. So they may be small things but in a tough situation up here they are huge.

I hope you all have been able to enjoy your weekend to some degree.

P.S. don’t forget about my FB autoimmune disease support group. I’d love to see you HERE

Summer Days & Sunshine,

CrankyPants

Keeping Up

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

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

I wish life could slow down some.

What do you do to cope?

Rainbows & Lightening Storms,

CrankyPants

Finally Catching up With You…

I’m finding my way back to posting. Life has been so busy. Mr. CrankyPants and I went away last weekend in part for a small getaway, and in part for a Rheumie appointment that’s a 5 hour drive away.

We were so looking forward to having the getaway as we hadn’t had one in many years. While there was some good about it. It mostly turned into a nightmare. I came back way more exhausted then I left.

We arrived at our hotel at the time they said our room would be ready. It was not ready. An hour later, it was still not ready and my stomach wasn’t going to wait much longer. They didn’t even tell us how long it would be. We arrived at the same time as a wedding party was coming back from a wedding. It was chaos. For me sensory overload. I asked the front desk how much longer until our room was ready, and told them we’d been waiting an hour already. They checked and said it’s not ready yet so they’d upgrade us to a Penthouse room. Good right?!

Wrong!

First, for a Penthouse room there were really zero extras except for a beday and a soaker tub. Yay. That was fun. Second there were problems with the water and the pipes so the water was just spitting out of the shower. I actually got burned in the face with hot water because of it. Then, we ended up right across the hall from the bride and groom who kept coming and going from their room all night. The noise from their door opening and closing kept me awake all night.

We called down in the morning and told the front desk about the water problem. We had a “pipe guy” come up to our room and check. It was something that couldn’t be fixed right away. They said they’d check the other rooms on the floor and did. They said it was only our room. So they had to move us.

Now I’m exhausted and we had plans to see the massive mall for the day. So they told us to pack our stuff up and they would move us to another room for when we got back.

The mall was amazing but I was so so tired.

We got back 4 hours later and they had just moved our stuff. They moved our stuff to a down graded room. What?! It isn’t that I’m a spoiled brat, it was the principle of it for me.

Mr. CrankyPants had to get to a reptile show. I needed to nap but instead I went down to the front desk to find out why we got down graded with all the trouble we’d had. I had involuntary tears streaming down my face at this point I was so tired. I think all I needed them to say was sorry, how can we make this better for you. Instead she said this is the size room you originally booked.  I said I know but that’s not the point.

I can’t remember the full conversation from there, but I ended up going back up to our down graded room to wait for a call from them. Oh and I was told the only other penthouse room was occupied. Not true. They just hadn’t cleaned it yet.

So I get a call back and I’m told they begged house keeping to stop everything they were doing and get the penthouse room cleaned up for us. Okay great, but it was going to be another two hour wait. There went my only time to get some rest.

Two hours later Mr. Crankypants came back from the reptile expo and we weren’t moved yet but they came shortly after.

So up to the other penthouse we went with the help of a staff member. So at this point we went from penthouse, to suite and back up to penthouse.

Staff dude said he was going to check that everything was working. He got talking and forgot.

Now it’s evening and we’re both hungry and tired. We head to the restaurant in the hotel. It was mostly good and food that I could eat. For that I’m thankful. However…Mr. CrankyPants got served his beer in a dirty glass. He wasn’t going to say anything but decided to kindly let them know. They gave him an extra free beer. That was nice.

We met some nice people in the restaurant who saw my crutches when I was in the mall that day and he asked about them. We got talking a bit and found out both had cancer battles they were dealing with. It was a nice few moments to chat about autoimmune diseases and connect because of them.

Then back up to our room for the evening. At this point all I wanted to do was soak in the tub and veg for the night. I did soak in the tub but that’s when I discovered that we had the same problem in this room as the other penthouse room. The water wasn’t working properly. It wasn’t just one room on the floor.

After my bath I went to make a cup of tea with some tap water. The tap water was brown. AAARRRRGGG!

I called down to the front desk and said I don’t need anything from them, just that I wanted to let them know that the water wasn’t working in this room either and that we have brown water coming from the sink. I told them I was too tired to have anything done about it that night. They said that they were so sorry and could they make it better. I said we can deal with it in the am.

There’s more…

Even though we were 22 floors up, the traffic on the side of the building we were on now, was so loud that even with ear plugs and a pillow over my head, it kept me awake all night long. Now I’m even more exhausted and I have my Rheumie appointment to go to.

So, we talked to the front desk in the am, and told them again about the water. It was obvious the message hadn’t been passed to them. They finally said they better lock those two rooms out until they figure out what’s going on with the pipes.

Out of it, we got a tiny bit off the price of our stay, free parking for the two nights, and a free buffet breakfast each for our last morning there. I do love a good buffet breakfast. I take enough to have lunch out of it too. 😉

Now it’s off to the Rheumie appointment.

They were running quite a bit behind and we still had a 5 hour trip home after.

Long story short with the Rheumie, I’m being taken off Enbrel as it’s not working enough for me. I’m going to be starting on Humira. The doc actually wanted to start me on Rituxan infusions but, because I have sero negative Rheumatoid which means the RF factor doesn’t show up in my blood work, I won’t get coverage for the infusions. Sad because the infusions would help my kidneys that are still leaking protein. Talk about medical discrimination with the Ins. Co.’s.

I swear the most relaxing parts of our trip were the drive there and the drive back.

Before the trip I spent three days making candles for a show I had yesterday. And I worked on getting ready for the trip.

When we got back, I spent my week still getting ready for the show, and dealing with the whole Humira process. The days have been such a blur with the busyness since I got back.

So the show yesterday was a massive one. The biggest one I’ve been too and you know what? I sold two small candles and a couple of bottles of CBD all day. That’s it. It was such a horrible let down after all the work I put in to prepare for it. I was also told that most people sell out early so I had high expectations. It was a Craft and Critter show. It seems most people were there for the livestock not the crafts. That’s it for me with shows. I can make more just selling wholesale like I always do until we move. I totally thought that at least the CBD would sell out there.

The one highlight of the show was that I got to hold and feed a 7 month old baby wallaby. That was wonderful and a once in a lifetime experience.

Now today (Sunday) I’m recouping. Tomorrow I look forward to the start of a less busy more normal week. I hope.

Sorry this is so long. There was lots of catching up to do.

Don’t forget about my FB autoimmune disease support group. I’d love to have you join Here. 

How has everyone else been doing?

Sunshine & Spring,

CrankyPants