Make me more Dizzy Thanks

So after the whole, “I need a different med mess” yesterday between the pharmacy and the Dr.’s things have yet again changed.

I get a call back from the pharmacy today from the first Pharmacist I’d talked too. She called to tell me that my GP had got back to her and sent in a new prescription. It took me a minute to process that after being told yesterday no change because we don’t have a diagnosis yet.

In a sense this is good news..

The good part is it’s a pill form, so no more having to drink powder. Yay. I don’t have to work out taking it around my other meds. Believe me that’s been complicated. Yay! And it’s another option yay! With an extra script on file, it saves me another trip to the Dr.’s. Always good!

The bad part is, even after my benefits cover 80% of it, I still have to pay $33 out of pocket. When you’re on lots of different meds that you’re paying 20% for out of pocket,that adds up. It seems the only meds that help me are the most expensive ones. I’m not even a high maintenance person but when it comes to my medical needs, it seem I’m expensive.

Pharmaceutical companies sure make a mint off poor people. It’s sad really.

Thankfully I don’t have to pay anything for my Enbrel because that would be $1800/month. Who the hell can afford that?! My insurance covers 80% of a generic form of Enbrel. The Enbrel Co. itself is covering the rest and giving me the real Enbrel. If I had to pay 20% for that, it would cost me over $800 a month.

I feel bad for those who really need the med and don’t get coverage. It’s got to be disheartening.

So that’s my update for today. I swear I have my own pharmacy here of meds that I’v had to come off of. It’s a shame they couldn’t go to someone who couldn’t afford them. I haven’t been able to dispose of them yet because it just feels like such a waste. It will feel like a bit less of a waste (At least in my mind) to hand them into the pharmacy when they’ve expired.

Hope everyone is having a light pain day today.

Sunny days & Good views,

CrankyPants 

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Dizzy from the Runaround

It’s been an interesting few days. Where to start…

I was emotionally wrecked yesterday crying on and off all day with all the below going on. I was scared because I was so sick.

This is the raw reality of complicated chronic progressive illness, not just for me but for most.

First I saw my GP and he told me that the meds the Rhuemie told me to take for my gut were bad to be on for long. I’ve been on them months. Thanks for that Rheumie. Body can become dependent on them. Doc gave me a new med, a script.

New med, isn’t working, I can’t leave the house, things are bad. Add in it’s in powder form so I have to drink it in water. I also have no bladder. So..Still can’t leave the house even if it was working because of that frequency. I also can’t take it anywhere close to any other meds I’m on. Complicated? Gets better.

I phoned the pharmacy, and talked to them about other options. They said call the Dr. I called the Dr. The Dr.’s office said call the pharmacy and have them fax in my situation, other med options and that I can’t leave the house and hopefully the Dr. will just sign off on whatever they suggest.

Forward to today. NO calls. I just called the pharmacy to find out nothing had been done. I talked in length with the main pharmacist who knew nothing about yesterday. She said because I don’t have an actual diagnosis yet she’s not comfortable recommending anything else. It might not be safe for me. I understand that.

So I’m stuck with this stupid powder that doesn’t work and I can’t leave the house.

Scene two:

Remember how I was supposed to get a call back about a colonoscopy and endoscopy? Well I never did. Things were so bad yesterday that I called the specialist’s office to find out what’s up. They never answer when I call from my home phone but always answer when I call from my cell. The second call was made from my cell. They answered. (This is the Internist’s office). Don’t ask me why I didn’t call the first time from my cell.

I found out that the Internist had sent in the orders for the tests two weeks ago. That’s good, but why did no one call and tell me as they had promised? The secretary said my best bet is to call outpatient at the hospital and ask about it. It will get me noticed and probably booked. I did that and finally got booked. The squeaky wheel gets the grease, but I’m so tired of having to be squeaky.

The secretary at the Internists office said my Internist has been off a month do to burn out. Sigh…our medical system. He was also supposed to be suggesting other med options for my situation today. No call. Am I surprised? No.

Then there’s one doc telling me to do one thing and another saying that thing is bad. My head is spinning. Why can’t all my docs work together?

My GP has no idea that I’m booked for these two scopes and I don’t plan to tell him yet. He didn’t think I needed them yet. The other specialists did.

I got a call back from my GP’s office yesterday with regards to my recent blood work. They said it’s nothing urgent and just a follow up. They don’t call unless something is found. I said to her there’s another test I did that is due in next week. I want to know about that one. Can we wait until that is in to deal with both. She said sure. She then asked if I have any other tests coming up. I told her about the scopes. She said let’s just book the follow up after the scopes and deal with it all in one appointment.

I agreed but then..

I realized I want the results of the test coming in next week sooner if there is anything found. It will give me some answers. Annnd if there is something found, the scopes are the next step. See?

I have the scopes booked in advance guessing it will be the next step.

Feb. 19th and 20th will be the days. I dread the prep on the 19th. As far as the scope I’ve talked with the nurse in detail, and they are going to ensure that I am completely knocked out for the procedures because of my extreme anxiety over medical anything. Otherwise, I’d be heavily drugged but still able to respond and move for them. I told her my fear will override the sedation if I’m even a bit aware. That’s no word of a lie. I’ve had it happen in other situations like the dentist. I don’t freeze or sedate.

The nurse told me I could take Ativan before I come and take more there if I need it while I wait. So that has helped put my mind at ease. The biggest stress is the horrible prep and having to be up all night going through it. I’ll be so glad when it’s over with. I’ll hopefully get some answers.

The good thing is, the day of my prep is a holiday here so I will have Mr. CrankyPants home to look after our dog while I go through this prep. There’s no way I could look after him during it.

And…

Hubby has got a paid day off the day of my scopes so he can drive me there and bring me home. Then look after the dog and I. Phew! That will help a lot. He’s the only one I have up here to help me.

Between calls to and from the doctors, the pharmacy and the hospital yesterday, I was getting confused by the end what I was supposed to talk about and to whom. Then there was the constant washroom trips.

You know what I wish?

I wish I could go even just one month without having to deal with any medical appointments. I need a break.

You really do have to be your own advocate or you get nowhere.

What battles have you had?

Better Days & Twinkly Stars,

CrankyPants

 

 

Life with an Invisible Illness

Alyssa says she’s honoured to guest post on my blog but I feel like I’m the one honoured to have her guest posting. Her attitude with her hard fought battle against chronic illness inspires me, helps keep me going and makes me smile. Welcome Alyssa from https://fightmsdaily.com/about-me/  I’m so happy to have you here. I’m sure you will enjoy her posts as much as I do! Don’t forget to drop by her blog! Just hit the green link above. – CrankyPants


I feel so honored to have been asked to do a guest blog for Cranky Pants! I am excited to be able to share my experiences on another blog with hopes that how I deal with my illness will be helpful to others.

Invisible-Illness-AwarenessLearning to master the art of living with a chronic but invisible illness can be fairly difficult at times. I was rather young when the doctor told me that I had Multiple Sclerosis. At 19, I was shocked, terrified and confused because I had only known one person with MS and she was my father’s wife, we are NOT related by blood! All I could think at the time was that I was too young to be diagnosed with a debilitating illness that did not have a cure. I was convinced that I would be in a wheelchair before my 25th birthday and that my life would be over!

It has been almost 17 years since I was diagnosed and I am still alive and walking without assistance! I have had many setbacks over the years, but do find it important to hold onto positive thoughts because the negative will only destroy passions for life. Once I started accepting my diagnosis, I promised myself that I would never allow MS to control my life but that I would control the illness!

In the early years of coping with this illness, I felt shame and did not want anyone to know what I was faced with in life. I felt that people automatically judge others that have a disability, even if it is not really seen! I never wanted to talk about it with anyone and kept all my feelings bottled up inside and choose a bad way to handle my emotions. I started drinking more than I should have, especially because alcoholism runs in my raise awarenessfamily. I thought that if I was drinking, I would not feel the pain and sense of loss of my normal body. My issue with alcohol only continued for a few months and I ended up catching myself going down a really bad road. I think it is normal to try to find an outlet from our struggles and sometimes they are really bad choices. But even if you fall down a bad path, you can correct the issues with strength and courage. I am sharing this to let people know that no matter what you struggle with there is always a way to make the wrongs right again!

Life comes with so many twists and turns through the years that it can get so frustrating. However, I am a strong believer that everything happens for a reason and somehow what is meant to be will be! For some unknown reason, I am the only person in my family that has to deal with MS. I thought maybe it is because I do have the strength to I willfight fearlessly and never give in to the relentless challenges I have to overcome. Or maybe I was dealt this hand in life because I can actually help others battle their struggles incessantly. Who knows? But I will continue to fight until my last breath because we all have only one shot to live our lives the way we want to!

I sincerely hope that you have enjoyed reading the shortened version of my experience with the invisible illness I have been plagued with in life. I hope you can feel in this blog how hard I do fight for my wellness and that I have the determination to win!

Love 2

 

Always, Alyssa

F#%&@n Medical World

Just a heads-up if you couldn’t tell by the title, I’m cranky today. I saw my GP yesterday who is the second Dr. to tell me that he’d book a colonoscopy for me. I come to find out he hadn’t. He said he didn’t know why I needed one. Holy Hell! Number one call and ask me. Number two look at my medical records. My Rhumie thinks I really need one. So do I. I’m not asking for one for shits and giggles. (Pun intended). I really hate the idea so for me to ask means I need it.

My GP never believes me when I feel something is very wrong. It took 4 years for him to believe I had more then Osteo arthritis and tendonitis. You know what I had? Yes Osteo but lupus and Rheumatoid too.

Now I know in my”knower” that I have either colitis or crohns going on. It runs in my family.

Without even examining me my GP tells me that he thinks I have IBS. I wanted to scream, you’re wrong. What’s going on with me is NOT IBS. So now I have to do a stool sample test first. Doc says that it will tell him if something more is going on. I know it is, but I also know he wouldn’t listen if I tried to tell him further.

If the sample shows what I suspect then I will have to have a colonoscopy. Why not just do the test that will tell them and take care of any hemorrhoids and or polyps I have as well. Also they could do a biopsy that would tell them if I have crohns/colitis. It may even show them lupus too.

Oh yeah doc also had me do some blood work to test for celiac.  Umm..an endoscopy would tell him better. I don’t know why I can’t get this GP to believe me when I proved him wrong with the first two diseases.

I’m so tired of getting the run around in the medical world.

If any Dr.’s read this, for the love of God listen to your patients. Trust their gut instincts. More often then not, they are not hypochondriacs. Work with us not against us. We want to feel that our Dr.’s have our back. I haven’t known what that feels like in years.

What happened to your oath of do no harm?!

I’m so weary. Weary from the diseases, and even more weary fighting the medical world. We need validation not to be exhausted further by doctors.

Listen to us. Just listen.

Sunny Days & Rainbows,

CrankyPants

 

Why?

Why do we who live with invisible diseases that cause excruciating pain, feel we have to live most of our lives hiding our pain? Who are we protecting ourselves or others?

We want the word out, and a cure to be found so why do we hide?

Sweeping things under the carpet isn’t going to bring about change or help to find a cure.

What if we got real? Real honest with ourselves and with others?

Those who would leave because we were real, aren’t worth having in our lives.

We need people who will stand by us when things get bad, when we have to say no over and over to invites because we’re too sick or in too much pain to go.

Why hide?

Why?

Shimmering lights & Being real,

CrankyPants

Anyone Interested?

I’m tossing around the idea of starting and autoimmune disease support group on FB. I’m hesitant because a lot of drama can take place in those kinds of groups, but on the other hand it would be nice to have a group that’s closed so private where we can talk freely about these diseases.

We could learn from each other, support each other and just have a space to put the struggles of living with chronic illness.

What do you guys think?

Would you be interested in something like that?

I’d love to hear feedback and what you’d want to see a group look like if you were interested.

Full of ideas & Sunny Days,

CrankyPants

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

Thoughts Illness Make You Think…

I’ve found myself thinking about my own mortality. In the past year I’ve been diagnosed with not one but two chronic progressive illnesses. I’m facing a possible third and fourth. All being life threatening. Lupus, Rheumatoid, and possible crohns and or colitis.

With all three I feel like I’m dying a long slow painful death. I think they are as life threatening as cancer they just present and progress differently. Even chemo is used to treat these diseases.

I know that sounds morbid, but I don’t mean for it too.

It’s me facing reality, and thinking the scary thoughts because I need to. I need to process all that’s happening, and there hasn’t been much time to do that. I’m so busy battling the diseases and the Dr.’s.  I need time to feel sad, and mad and scared. I need time to grieve what I’ve lost so I can figure out from here what I can gain in a new way. It’s a death of sorts to what my life used to be, how I wanted it go that will never be.

Since I stared looking for answers to what was happening to me four years ago, I’ve been going down hill quickly. Treatments up until now have not been helping if anything they’ve made me sicker.

Obviously I’m still not sure about Enbrel as it takes time. There are no guarantees it will help, and if it does help, it’s known to only help for a time. It’s not a cure.

These thoughts illness have made me think I don’t believe are a bad thing.

I think about what’s important to me. What do I want to accomplish while I’m on this earth. What do I take for granted. What could be missing that I should grab hold of. I think of getting a will together. I wonder if Mr. CrankyPants will be okay if something happens to me. Right now I don’t think he would be.

Mr. CrankyPants is both my biggest pain in the ass and my greatest gift. I tell him I love him often. I always make sure that I tell him when he’s going anywhere so if anything were to happen to either of us, I know that the last thing he heard from me is that I love him.

One thing I know is that my candle business is my heart. I started it when I knew I was quite sick, but didn’t have answers yet. Starting my own business was always a dream of mine. I’ve had a couple business’ in the past but they weren’t what I wanted to do. When you’re sick and the disease is taking things from you fast, you don’t have time to just dream, you have to go after those dreams or never see them come true. I did go after my dream; And that’s one thing that I thank lupus and Rheumatoid for. They gave me the kick in the butt I needed to go after my dream now.

There are always reasons and excuses why one can’t follow their dreams, such as no money, fear, the “what if’s.” I’m too sick… We can choose to let the excuses aka fear stop us, or we can take a chance and go for it. I can’t tell you that as hard as it’s been how happy I am that I went for it.

I would have missed out on so many experiences and lessons had I not done that. I love my candle business. I hope one day when I’m gone it will still be here. Sparking Hope. That’s the name of my business. Sparking Hope Candles.

If I had “failed” at least I tried.  I don’t think trying is failing. Failing is simply part of trying and it provides you with lessons you’ll need to try again. You can choose to give up, or you can choose to try again. It’s only failure if you don’t try, or if you give up.

I never imagined three years later I’d still be running my business. I’m in a bunch of stores and I couldn’t be more grateful for that.

This post went in somewhat of a different direction than I had planed but not a bad one.

Sick or not, never let fear rob you from going after your dreams. Believe you can. Don’t believe you can’t.

What is your dream?

Candle Light & Sparking Hope,

CrankyPants

 

 

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