The Battle with the Dr. Cont.

There’s not a whole lot to update you on. I’m still at a standstill with my Rheumie. Tomorrow (Wed.) will be day three of waiting for her to return my call about coming off the Cellcept and wanting to look into biologics further.

I suspect we’re in a standoff. I hope not but I won’t be surprised if she ditches me. If she does it will confirm how I’ve been feeling about her. If she does, she hasn’t been a whole lot of help anyway. If she does, I think I still have my Internist in my corner but he can’t script biologics so..It may mean I have to wait until spring to see a new Rheumie.

Things are so uncertain. It’s a crap shoot being on the meds, it’s also a crap shoot coming off of them. Neither choice is good, but for now I need to know how I’ll fair without the immune suppressants, because I know I’m not doing well on them at all.

Honestly I feel like if the disease doesn’t do me in, the meds will anyway. Which one will allow me a better quality of life? Anyone’s guess. There’s only one way to find out.

Life is about risks. I have to do what I feel is best for my quality of life.

Have any of you ever had a Dr. explain the disease or medications to you? I never have. I’m so thankful I researched a lot before I saw Dr.’s I knew what was going on with me before they did. I knew what meds might be given and I knew all about them. I knew about autoimmune disease.

It would have been a scary shock had I not known. Why don’t Dr.’s give us any information anymore? It boggles my mind.

This autoimmune disease is scary, it’s life threatening as are the meds, and Dr.’s tell us nothing? How is that “Do No Harm?”

That’s my Cranky Pants rant for today. I didn’t even know I had that in me until I started typing.

Sunshine & Sparkles

CrankyPants

Las Vegas

I just want to say that my heart goes out to all those who’ve been affected by the mass shooting in Las Vegas. I can’t even imagine what you all must be going through.

Know that Canada stands with you too. We lost at least two Canadians one from my Province as well.

It’s just so sad.

Love & Prayers,

CrankyPants

No Meds

My last post was talking about the struggle with my immune suppressants making me so ill. Last night I decided to skip taking them for the night. I just couldn’t stand the thought of taking them. I also wanted to see if there’d be any difference, knowing it would likely take time.

Boy was I surprised.

I felt better today than I’ve felt in many months. My gut didn’t hurt, the complications I’ve been having one of which caused severe pain were gone.

In. One. Missed. Dose.

Gone.

This has made my decision for me. I’m done with the immune suppressants. If they are taking my life away more then the disease, they are not worth it too me. I need quality of life. I will still be asking the Rheumie about biologics to help with joint pain. I call her tomorrow. I don’t expect to get to talk to her tomorrow but she’ll call me back.

Keep your fingers crossed for me that she’ll still work with me. She more likes to blame me that my body isn’t tolerating the meds like it’s my fault.

I’m so glad I skipped the meds and felt so much better today because I had an Entrepreneurs market to be at with my business this afternoon. It was also very telling. I hope that I continue to improve from here. Hubby keeps reminding me it could just be a good day. He’s right, I sadly need to keep that in mind because of the nature of autoimmune disease. He doesn’t want me to get my hopes really up and be let down. He sees me hurt enough. I’m blessed to have him.

Hope this finds you enjoying your Sunday evening.

Good days & No meds,

CrankyPants 

Immune Suppressants

Some medications I take.
Immune Suppressants

Can I say ARRRRGGGHHHH?! Well I guess I just did.

These immune suppressants make me so sick. I HATE them. I don’t know how much longer I’m going to be able to stand the one I’m on. I’ve tried Methotrexate, Immuran, now Cellcept. They are making me sicker then the disease.

I feel caught between a rock and a hard place. My Rheumie whom I’m not loving, to put it mildly seems to be blaming me because my body isn’t tolerating the meds. She had me crying after I talked to her last. This Rheumie is all I’ve got. She’s my only hope of getting on biologics and that’s not much hope with her.

It’s such a fine line, between, being seen as compliant and not taking meds that make you sicker.

I honestly don’t know what to do. I can’t take much more of what the meds are doing to me and there is a risk going off them because my kidneys need protecting. They’re not in trouble yet but they are showing signs that they could be. Protein to be a little more blunt.

I worry if I come off these meds that my Rheumie will ditch me. I’ve already been passed around so much, I don’t know where to turn anymore.

Oh and my Rheumie is a 10 hour trip away. The only specialist we have in our area is an Internist and he’s trying to pass me off to the Rheumie.

I’m so done. I’m feeling so lost. We need to move out of here but that won’t happen until spring. That also leaves me very trapped as winters up here are brutal. They don’t take care of the roads. We live on the outskirts of town, it gets dark at 4. I can’t see to drive in the dark, nor will I drive the icy roads.

The Dr.s can sure as hell bite me if they think I’m going to make a 10 hour drive to see them in the winter when there’s technology called teleconferencing. One specialist is willing to utilize this, the other (Ahem the Rheumie) doesn’t seem to be so much. Go figure.

Does anyone else struggle with the medications? Have you been passed from Dr. to Dr? Where you told nothing was wrong when you knew there was something very wrong?

I’m so done fighting with Dr.’s.

I’m sick and tired of being sick and tired.

CrankyPants is a bit Cranky. She apparently is talking in third person too. 😉

Fall colours & Happy days,

CrankyPants

P.S Thank you to all those who joined my blog or dropped by for a visit. I can’t tell you how much I appreciate that.

I’m Bad, You Know it I’m Bad.

So I went for my TB read today and as I knew it would be, it was negative. Yipeee! As I’d mentioned in an earlier post, the nurse was also trying to pressure me about getting my immunizations when I got the TB test done. Today they were supposed to pressure me some more.

Guess what?

They. Forgot.

Heh heh!

I didn’t remind them. Hence no pressure.

Except when they remembered after the fact and tried to call me. I was driving.

Damn.

Then I was shopping. Yup shopping again.

When I arrived home my answering machine was flashing. I still haven’t checked it because I know who it is, and what they want.

And. I know what I don’t want. 😉

So that’s it. No immunizations for this CrankyPants.

That makes me not such a CrankyPants.

Now after all the running around I did this morning I need a nap. I won’t be dreaming of immunizations. I can guarantee you that.

I’m bad!

Sweet dreams & No needles,

CrankyPants

Not feeling well

I slept in. That was my first clue.

I don’t feel well today.

The fatigue has got me. Pain has got me.

I can hardly walk because my hip doesn’t want to let me. To use my crutches doesn’t work well around the house.

This is the nature of autoimmune disease. It blindsides you constantly. It’s not a total surprise since I was dealing with a very stressful situation this week. In short, we have a nightmare neighbour who causes a lot of trouble and when he’s around it causes me extreme anxiety. He caused trouble this week, which I think has sent me into a flare. Between that and dealing with Dr.’s (I have a phobia of Dr.’s. I know funny given my situation). It would be enough to cause this.

So, today I have to bow to the disease so to speak. I need to allow myself to be tired and rest. I have to try not to feel guilty.

I wonder if my TB test would have anything to do with this too? Hmmm..

The best we can do for ourselves is listen to our body, if we ignore it, it will likely set us back further.

Hope this finds you all having a better day.

Oceans & Mountains,

CrankyPants

 

Medical Everything

So, yesterday as you may have read I was at the Internist office.

Today, I went for part one of a TB test I have to get in hopes of qualifying for a biologic.

Friday I have to go for part 2 of  said TB test. The read. Then they are pressuring me to the get flu, pneumonia and whooping cough vaccinations.

Umm.. NO, notta, no way, not happening. Period. Wish “No thank you” was understood.

Anyway, I’m getting so tired of my only outings being for medical reasons. Since there’s always a wait, I have no time for anything else, except maybe on a day where I don’t have a medical something, grocery shopping. Such fun.

I hope Friday is the last medical something for a couple of months but I don’t hold my breath. We all know how unpredictable autoimmune disease is. It totally blindsides and messes with ones mind.

Maybe if it’s not too hot or sunny later (because the disease doesn’t like heat or sun), I need to get out for a walk with the dog. I may be just a bit Cranky. 😉

Green grass & Beaches,

CrankyPants

 

A good day

Today was a good day. I got out for a walk in our conservation area and I didn’t even need my crutches today. I have a friend coming over soon for dinner and a movie whom I’ve been to sick to hang out with for the last 4 months. I’m looking forward to hanging out with her again.

Boy can we talk up a storm when we get together.

So today I’m not going to Cranky Pants about anything.

I’m just going to be grateful for a good day.

Hope you have good days you can bask in too.

Wine & Cheese,

Cranky Pants

What most won’t see…

This is the reality of living with autoimmune disease. These are taken more than once a day.  Most will make us just as sick in one way or another. They also help keep us alive. We may not look sick to the world but we are sick as hell.

Some medications I take.
                                                                  Some Medications I take.

Below is my first introduction to medications for what they called lupus at the time, but since have changed their mind on more than one occasion. For now they call it mixed connective tissue disease, because the majority of the medical world is clueless. Apparently the disease has to fit in a box. I wonder, does the disease know this?!

Methotrexate. A chemo med I injected myself with intramuscular once a week for 6 months. A friend taught me how, not the doctors. Caused a lot of complications.  Had to come off it. 

So if you know someone battling one or usually more of these diseases, remember there’s a lot going on behind the scenes. If we/they have to cancel plans, it’s not because we want to, it’s because we have to. I would say that we live on a daily basis with the kind of pain that would put most people in bed. That’s our norm. On a bad day, double or triple that pain.

Sprinkles & Sparkles,

CrankyPants