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

The Madness Continues…

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.

However…

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,

CrankyPants

Fatigue

CrankyPants is back and apparently writing in third person. This is the kind of silliness that happens when she’s taken her pain killers before bed.

It’s taken me a long time to recover from those two scopes I had recently. Hey look at that. No more third person. Well pat me on the back and hand me a cookie.

Now what was I saying??

Right recovery. I thought I was going to be pretty much back to me the next day. Pffft! That did not happen. It took 4 days for my stomach to stop hurting from the scope. I’m just past two weeks from the tests and I still now have a cough that won’t subside and I still feel the path of the endoscopy. My voice is raspy and annoying. Is there a conspiracy here? Did Mr. CrankyPants ask them to quiet my voice?!

And where they put that damn IV is still tender. I will karate chop anyone who ever tries to put an IV there again. Medical world consider yourself warned. I know my pain can stop a karate chop but, adrenaline can allow one to happen. Know what I’m saying? Good.

I wonder if between the lupus, rheumatoid, and immune suppressants I just won’t recover as quickly as a healthy person would.

Well now to get off the rabbit trail I apparently went down without intention…

I wanted to ask you all about fatigue.

I know the majority of if not all those fighting autoimmune disease experience fatigue. I wonder if it can be different in some ways for us all. What I was wondering is if you battle fatigue, how does is present for you?

For me most of the time it seems to be like a lethargy. Everything feels like it’s an effort or a chore. Mornings are the worst. I wake up between 7-8 am every day, get my breakie and have a decaf coffee. Once I sit down with my coffee, I just can’t get going. It takes me until between 9:30-10:00 to get the energy to take my shower. Some might see that as laziness. I don’t think it is.

After my shower I have a bit of a boost to get everything accomplished I need to. I then nap in the afternoon. (Pain killers I take then make me sleepy).

After my nap I still have no get up and go, but I have to because things have to get done. So I do them. Including a bit of exercise.

If I have a particularly busy day, I seem to get worn out really quickly. Sometimes I shake my head wondering how I could possibly be this worn out when I’m only doing maybe half of what an average healthy person does. It’s frustrating.

There are times where I feel the extreme fatigue where it’s debilitating and very hard to function. It’s hard to explain, but those who have it will know what I mean. No amount of sleep fixes it. It feels as if you haven’t slept in weeks, but for no apparent reason other then our bodies are trying to kill us and that’s kind of exhausting.

Do you guys experience both? Do you experience one more then the other?

And because it seems I’m full of questions tonight, do you feel guilt with it?

Oh the guilt I battle. I don’t work other than my little candle business. Mr. CrankyPants works hard and long hours. I feel like I have no right to feel so draggy when I compare my day to his. I feel useless often too, even though I actually get a fair amount accomplished. It just doesn’t feel like enough. Like I could do if I were healthy.

On a side note I have my follow up Dr.’s appointment to get my biopsy, blood test and the other sample test results on Tues. I’m a little shall we say nervous. I don’t want to have what I suspect, but I need answers at the same time for what’s wrong, because something is really wrong. I hope my GP will listen to me. He often doesn’t. He’s the type who will give you your results and that’s all he says. I’m left with thinking, well what now?! I hope I remember to ask him the “What now” question. My anxiety is very high when I have to go to the docs.

I should probably write my questions down ahead of time. If he sees my list, he’ll ask me what’s on it.

Anyway I’d love to hear from you all on your fatigue experiences.

I’ll also be waiting for that cookie I mentioned above. Maybe it will fix my fatigue. It’s worth a try don’t you think? 😉

No More Snow & Spring Flowers,

CrankyPants

 

Rheumatoid Awareness Day

Rheumatoid Disease

I thought I’d blog a bit about Rheumatoid disease in light of this awareness day. In part, this is in memory of my Grandmother who suffered horribly from it and died a long slow painful death.

Rheumatoid Arthritis/Disease is not just arthritis. It is an autoimmune disease that can and will attack any part of your body at any given time. Joints in the form of degenerative arthritis are a part of what this disease attacks.

  • RA doesn’t just strike old people. It can strike at any age.
  • Those living with Rheumatoid are at higher risk for heart and lung disease, cancers, organ failure, diabetes. And much more.
  • The side effects of the medications used to treat this and all autoimmune diseases are often just as bad as the disease itself. One of the treatments is low dose chemo therapy.
  • RA is life threatening and does kill
  • More often then not when you have one autoimmune disease there will be others overlapping.
  • I have sero negative RA. That means it doesn’t show up in my blood work.
  • I also have overlapping autoimmune diseases. Lupus, raynauds, and awaiting testing this month for crohns/colitis and I have osteoarthritis
  • RA can run in families.
  • RA causes extreme fatigue that no amount of sleep can fix
  • RA causes pain that would put a healthy person in bed and leave them there, or in the hospital but we go on with life everyday with this pain
  • RA is an invisible disease. We often hear, “You don’t look sick.” We are sick as hell, our own immune system is attacking us and trying to kill us. That’s exhausting. We just get good at hiding it so we don’t have to hear uneducated comments and maybe so we can feel a bit normal
  • RA is progressive. We won’t get better. We will progressively get worse
  • Meds that are helping can at any given time stop working
  • RA is unpredictable as are the side effects of the medications for it. We can be holding our own one day and fighting for our lives the next
  • RA is lonely disease often leaving us isolated at home. It’s not that we don’t want to do what everyone else can, it’s that we are unable
  • We don’t ask for pity. In fact no thank you. We just want people to show some empathy and compassion. When we have to say no, don’t give up on us keep asking or find a way to include us on our terms
  • RA causes chronic pain. We are always in pain. levels can change from bad to worse but there is never a day without pain

Nan, when you were alive I watched you suffer so much my heart went out to you and there was some relief when you passed away because I knew you weren’t suffering anymore. Now I understand just how much pain you were in, because I’m living it. You were a stronger lady Nan then I even realized back then. I miss you today.

If you live with RA I’d love to hear your input and experiences with it. The more we talk about it, the better.

RA Warrior & Better Days,

CrankyPants