Stunned…

I shouldn’t be with how crappy the medical system is but I am. Stunned that is.

I feel extremely bummed and let down.

I called my Internists office today (The only specialist in my town not a 10 hour round trip drive away.) To confirm that they had booked a colonoscopy for me like they said they would three months ago.

Guess what?

All this time I’ve been waiting just believing it’s a long wait, no colonoscopy was ever booked.

Not only that I called and left a message after Christmas about getting an endoscopy with the colonoscopy since I have gut pain too. Well they not only never returned my call as usual, they never booked that either.

What the hell?!

Oh yeah and the secretary read a bit of my Rheumie’s medical record to me. Apparently I’d improved after I was off the meds I thought were causing my gut issues. Umm…Nope! I wish someone had told me that I’d improved.

Good thing I got my family doc to book a colonoscopy. At least I hope that he did. That doesn’t take care of the endoscopy though…

I freakin hate our medical system. It may be “free” compared to the states but, you get what you pay for, and that’s pretty much nothing.

I don’t have the energy to fight with the medical world anymore. I’m just so done. I feel like just letting nature take it’s course at this point. Whatever will be, will be.

Add in my father in law is in the hospital in another province. We last heard before he saw the doc that he has the flu but, we haven’t heard or at least I haven’t heard if that’s what the doc believes it to be. My fil had a very bad stroke a few years back that left him unable to talk and with a paralyzed arm. He also has a very weak hardly working heart so…

Hubby and I are kind of on stand by as to whether or not we will need to make a trip. A very long trip back home. If we were to and my fil has the flu, I will not be able to see him. I’m on immune suppressants it would be dangerous for me. The trip alone would be so hard on me not too mention being around family. My family in particular. Let’s just say that’s not good for me either and leave it at that.

I can’t wait to move out of this hellish area we’ve lived in trapped now for 6 years. The hope is to put our house up for sale and leave before next winter but that depends on a lot of things. Whether we can get what we need out of our house, if my Mr. CrankyPants can find work elsewhere, and if we can find an affordable place to live elsewhere.

Somehow we have to pull this off.  I need out.

One more thing, I’ve been trapped at home all week, thanks to insane amounts of snow and icy roads not taken care of that I can’t drive on.

Sorry this is not a positive post, but this is where I get my frustration and hurt out.

Better days & Less snow.

CrankyPants

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Cleared Up

So the Enbrel rashes have all cleared up. Last week’s injection I got a rash but not as bad. I’m thinking maybe my body is beginning to adjust. My next needle is tomorrow (Friday). I do my injections every Friday.

That will be a tell tale if I’m adjusting. I won’t fully know until a week later since the reactions sometimes happen after the fact.  Although the third one did not, it was within a half hour.

I was thinking the Enbrel was helping but I’m not certain yet. Given the nature of lupus/Rheumatoid has the pain moving. One day my wrists can hurt really bad and the next they’ve eased up but it’s my ankles and so on.

It’s very hard to tell if a med is helping when the disease is forever changing. At least this med is not making me sicker like the others.

How was your holiday? Ours was great! It was actually very relaxed and I’d forgotten what that feels like. Hubby spoiled me with all I’d asked for, for Christmas. It was fun.

Happy New Year everyone! Here’s hoping for a cure.

Sunshine & Rainbows,

CrankyPants

Ticked off

Since I’ve started Enbrel I’m required to see a Rheumie once every three months. That I knew. What I didn’t realize is that they call me and tell me when my appointment is. The Ins. Co. controls that.

Well sorry I told them already I’m not making a trip in the winter. I had to tell them again. Fine they accommodated that and now I’m allowed to go in April instead. Great.

Next issue…

I’m to be there at 9 am.

Umm…NO!

No way in hell can I make a 5 hour trip one way sick as hell with crohn’s sympotms and pain (Maybe I’ll be diagnosed by then who knows) and be there at 9 am. That would  mean I’d have to be on the road at 3 am.  I have epilepsy too. No sleep=trouble.

Mr. CrankyPants has to take off work to drive me. There’s no way we can make it a two day trip. They’re going to make us go broke. He’s the only one working. Plus his work wouldn’t be happy about him taking off two days.

We’re told the Dr. only does morning clinics. Well then tough I can’t be there.

I’m waiting for a call back. Last time the doc accommodated the fact that I couldn’t be there that early. I can’t even make it to docs appointment in town that early. I’m too sick in the mornings.

No one gives a shit about our health, they only care about money and their schedules. I’m tired of not being treated like a human being. I’m tired of being sick all the time and needing all this seemingly more damaging then the disease medications. And medications that force me to take trips out of town I’m not up to taking.

You’d think with all this advanced technology that I could do a Skype appointment but noo… not good enough for the Ins. Co. Rheumie has to see my joints herself.

You’d think the Internist here in town could evaluate my joints and send a report to the Rheumie. But nooo..That’s not good enough for the Insurance Co. They apparently want one to suffer if they’re having to pay out.

I’m just so done. That’s my truth today. I’m just done.

I hope to be able to move the heck out of here even before this first appointment but certainly before the second one. I can’t see the Ins. Co. paying out any longer then the 6 months they’ve allotted me anyway. 6 months is how long this med takes to work. So if I do begin to get relief and they cut me off then what?! I’m in pain again, and now the pain feels worse because I got used to having relief?!  How do the Ins. Co. nurses live with themselves in this kind of job?

Happier days & Less Cranky,

CrankyPants

 

 

The first step

Enbrel Box
                           Enbrel Box

I picked up my Enbrel today. That’s the first step to preparing myself to start the injections. Mr. CrankyPants feels it’s best to start on Friday while he’ll be home for the weekend to keep an eye on me. So I guess I can’t put it off any longer. I get a month’s supply at a time.

I have to keep it in the fridge but take it out about a half hour before I stab myself so it won’t hurt so much.

Good times. I’ve given myself needles before, I can do it again. Here’s a picture of the needle pens. I have to use one a week.

 

Enbrel Needle Pens
                      Enbrel Needle Pens

Happy Days & Fun Times,

CrankyPants

Restless Leg Syndrome

Does anyone get restless leg syndrome? I do but I’ve found a way to combat it. I know this is going to sound crazy but it works and that’s all I care about.

Someone told me about it, and I thought what do I have to lose by trying. Restless leg syndrome that’s what.

If you take any old bar of soap and put it under your sheets at the foot of your bed, it will stop RLS. I kid you not.

I always have that bar of soap now. When Mr. CrankyPants got sick recently, I had to move to another room/bed for a couple of weeks. I totally forgot about my soap and that I had RLS. Within 3 nights sleeping in that bed without the soap, the RLS came roaring back with a vengeance. It didn’t take me long to get that soap. It took about 2 nights with the soap back at the foot of my bed and the RLS is completely gone again.

I’m so thrilled because it’s something so cheap and easy that keeps me off yet another medication. I don’t believe it’s somatic but even if it were, and it works who cares. It works! I hope it can help someone else like it has me. If it does, let me know! I’d love to hear about it.

Warm weather & Sunny Days,

CrankyPants

I Want To Hear From You

I don’t think these autoimmune diseases that we battle get enough publicity. People really don’t have a clue what we live with and how much pain we are in.

So…

I want to hear from you. This post is about Rheumatoid Arthritis/Disease. I’d like to know what your first symptoms were. The very first symptoms if you think way back before you were diagnosed and now can connect it to RA/RD, and the the first symptoms that sent you looking for answers knowing something was very wrong.

I know this can be a difficult question to answer especially if you have more then one autoimmune illness.

For me, as far as Rheumatoid Arthritis goes, I would say my first symptoms were back and hip pain. Neither of which sent me to the Dr. for answers. I just thought that I was getting older and things hurt.

The thing that finally sent me in the fight of my life for answers was severe elbow pain. It started out of nowhere and hurt so bad that I would have tears streaming down my face involuntarily. I could hardly use my arms. It started in one elbow and spread to the other. Then other joints followed in quick succession. I was told for a long time that I had tennis elbow. Even though it was in both elbows out of nowhere one day. I’ve heard many say that their first symptom was extreme fatigue.

Rheumatoid Arthritis/Disease does not always start in the fingers or hands as believed by many. There aren’t always red or inflamed joints. It can even start in your organs. Our own immune systems attack us anywhere and everywhere at any given time. The disease does not fit in a box despite what Dr.’s seem to want to believe.

So where did your Rheumatoid Arthritis start for you? What sent you to the Dr.s? Did the Dr.’s believe you?

Mine didn’t.

My hope is that this will help others in their struggle for answers.

Sunshine & Rainbows,

CrankyPants

A Video on Rheumatoid Arthritis

I prefer to call Rheumatoid Arthritis, Rheumatoid Disease because it’s so much more than arthritis. That is only one symptom of the disease as you’ll see in the video.

One more thing I want to say is that they stress how important it is to be diagnosed quickly. That’s so much easier said then done when it’s hard to get into Dr.’s, it’s often hard to get Dr.’s to listen. And it mimics other autoimmune diseases. It’s taken 4 years for me and my Rheumie still doesn’t fully believe her diagnosis. Yeah figure that one out. I’ve got sero negative RA and Mild lupus symptoms. Sero negative meaning aside from being ANA positive, my RA doesn’t show up in my blood work. At least yet. It could as things progress, but I have many of the other symptoms of RA going on. Blood work is not definitive.

Good Days & Warm Beaches,

CrankyPants

Emerg

It’s getting to the point that those in my life who know about this crohn’s concern are telling me that I need to go to emergency. It’s just so hard to wrap my brain around the wait time and the anxiety that goes with it not to mention the potential exam I might face.

The potential exam would not only be as embarrassing as hell but also painful as hell.

You never know what kind of Doc you’re going to get either. The last one at emergency was amazing. Kind, compassionate and gentle. If I knew I would get him again I might entertain the thought more but there’s no guarantee.

The fear and the pain are taking an emotional tole on me. I want to wish this away.

Unicorns & Rainbows,

CrankyPants

 

I’m Really Scared

I’m really scared that I have crohns. Things are progressing fast. I have a fissure (The last Dr. I saw about it thinks that’s what it is.) that won’t heal. I’ve had it for 6 months. The pain is so mind numbingly bad even with Perocette I’ve not been very functional. Except I have to be. As soon as I don’t have to be, I’m flat out.

Now my stomach seems to hurt more often then not. I’m afraid to eat as it hurts more after I eat. (I’m eating anyways). I can’t eat anything spicy or much of anything with flavour or taste. I’m running to the washroom too much even with bland food. That’s not helping with the fissure.

I thought the meds were causing this but I’ve been off them long enough now that I should be improving. I’m not. I’m just getting worse.

Now I wonder did the meds cause this? Did it start before the meds, and the meds exasperated it? I feel like things with the disease are progressing so fast that I don’t have time to deal with any of it emotionally. I haven’t had time to wrap my mind around any of it let alone this now happening. This being just about my worst nightmare. I watched my father, aunt and a friend suffer horribly from it. I watched my grandma suffer horribly from Rheumatoid. I can’t get those images out of my mind. I don’t want this to be my fate. It seems though that my fate has other ideas.

Hubby wanted to take me out for dinner tonight and he asked me earlier in the day since I need warning. I cried my eyes out because I was feeling so awful but wanted to go, and didn’t want him to feel bad. It seems every time we want to do something I feel to sick. This disease is robbing my life and my Hubby’s. He’s amazing about it. He’s very supportive. I just feel guilty and like a burden. This is not how I saw my life going and I’m not okay with it.

I did pull it together and we went out for dinner. That was a bit of an ordeal because there’s so much that I can’t eat, but we did it, and we hung out in town for a bit after. I could stay at home and be in pain or go out for dinner and be in pain. I opted not to let the disease keep me at home this night.

Aside from my Hubby, I have zero family support and really zero support of any other kind other than a home care cleaning lady.

I haven’t had time to grieve or make peace with it, that is if there is such a thing. I don’t know how much more I can bare.

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

And that’s the raw truth. That’s lupus, crohns, rheumatoid and every autoimmune disease. They steal everything and you never know when they’re going to strike with the next thing. The next thing is usually what you would least expect. There is no figuring this out. It has too many disguises.

Can you relate?

Sparkles & Stars,

CrankyPants