The Other Side of the Scopes

Where to start..

I think I’ll start with a thank you to all of you for your support. It really meant a lot. It sure helps.

There was good and bad about the whole thing. I’ll start with

The Good

  • No stomach pain or cramps with the prep
  • The prep didn’t taste horrible at all as I’d expected
  • I never felt hunger which is very weird for me, but a gift through this at the same time
  • I got a few hours sleep the night of prep
  • It didn’t cause too much damage, since it’s mostly liquid. (Sorry for the tmi).
  • I made it through the prep and to the hospital with no accidents. That’s a definite worry with the prep. So double win there.

The bad:

  • The nurses knew very little to nothing about some of the medications I’m on, They should know about them
  • The staff knows nothing about urostomies so I had to make sure things were looked after there. Frustrating
  • The Dr. wouldn’t listen to me. He flat out refused to give me Profinal that I was promised to knock me right out
  • I wasn’t finished discussing it or other questions I had with him, but he just turned away and ordered the nurse to proceed. Even Mr. CrankyPants was there saying knock her out and no response
  • I warned them I don’t sedate well but as is usually my experience they don’t believe me
  • As a result I woke up during the procedure crying in pain. I remember them saying we’re almost done. I sure hope they gave me more sedation. I’m not lying that has now traumatized me further. I almost died in another proceedure in the past because docs wouldn’t believe I wasn’t frozen or sedated even though they had done both. I was screaming in pain and they wouldn’t listen until again Mr. CrankyPants spoke up and pointed out my dangerously high blood pressure. Why weren’t they watching?!  So you can see this being one of many other experiences of the like why I have severe anxiety with anything medical. This brought that all back. I even told the Dr. I’d been abused and he didn’t listen.
  • They couldn’t have picked a more painful place to put the IV.  I’m still in a lot of pain from it today.
  • In the recovery room. They didn’t offer me any food or drink and I had gone almost 48 hours without. I was sick and dizzy as hell and they sent me packing that way. It was sub-par care at best. Kind of awful

The Results:

  • I have an inflamed esophagus and acid reflux.  (A total shock to me as I’ve not had symptoms)
  • I have stomach ulcers. (Nice of my GP to assume my stomach pain came from ibs without testing me)
  • I have internal hemorrhoids that nothing can be done with at the moment since they aren’t swelled. Having said that, to eventually get something done, I have to go through a surgeon and be awake for the procedure. I’m sure you can imagine what I think of that right now.
  • I had a number of biopsies done. They are looking for micro colitis, (which is when it doesn’t show up in the scope), celiac, cancer and I hope because I asked for it they are also looking for lupus and rheumatoid since, I’m diagnosed with it but it doesn’t show up in my blood work. Who knows if the Dr. will have actually listened to me and complied though
  • Everything else looked good and clear. So minus what did show, I still at this point have no idea what’s wrong ,and there is something very wrong. I don’t want to have these diseases but I really need answers. I’m still losing weight and I shouldn’t be. I’m at 102 pounds at 5 ‘1. That’s underweight. I still can’t stop the frequency. That’s not normal.
  • So in two weeks time I have to follow up with my GP who doesn’t even know I had these procedures done to get the results of the biopsies. I will also be getting the results of my blood work I had done through the GP a couple of weeks ago.

I’m glad for now that it’s over with, but I wish I had more answers. I wish I could storm into that hospital and give them a piece of my mind. I wish I could teach the medical world about the things I live with like my urostomy. You know the nurse didn’t even know what Enbrel is?!

So today is the day after my scopes. My gut hurts a bit, my throat way down is tender but nothing unbearable. I’m just resting. The laxatives are still working some so, I’m staying home.

Have you had these kind of scopes? What was your experience?

Over & Out,

CrankyPants

 

 

 

 

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Medical Marijuana

What are your thoughts on medical marijuana? Is it legal where you are? Have you tried it, or do you want to try it?

It’s legal here with an mm card. Soon it will be legal to grow. I’m all for it. I’d like to learn how to grow it once it becomes legal to do so. It’s a cheaper option.

The only reason I’m not using it now, is that I’m on Enbrel and I’m fairly new on it. I need to know if and how Enbrel is going to help or not. If I add medical marijuana I won’t know which treatment is doing what.

I’ve tried it in the past when I first started getting ill. I also have epilepsy and I wanted to see how it would help with that. Since I never touched it or any drug growing up, I was nervous and uncertain so I never used the full scripted dose. I didn’t find it helped a whole lot. Also I was vaping and I hated vaping. MM is known to really help with crohn’s, colitis, pain, sleep, inflammation, and all sorts of stuff.

If I end up being diagnosed with crohn’s or colitis, I’ve heard so many people talk about how mm has been life changing for them. I will give it a try. I won’t go back to vaping. I just don’t like the taste or smell, or that I have to sit in our cold garage to vape. Mr. CrankyPants also can’t stand the smell. It will leak in the house from our garage if I vape out there.

I am interested in the tinctures mostly. I’m sure some of you have heard of  the “Charlotte’s Web” strain and or Rick Simpson’s oil. Those are the two main ones I’m interested in.

I know for pain, sleep, epilepsy and gut issues, Indica with low thc and high cbd are the best options. To help with fatigue sativa with higher thc and cbd are good options. But the latter is not good for epilepsy trust me on that one. I learned the hard way. I have done my research and talked to the Dr. (Not my GP) and talked with the legal government companies I used to get it from.

I think it’s worth giving it a second chance. If it helps. Especially if I have crohns or colitis. Speaking of which the prep begins Monday, and Tuesday is the day of the scopes. I’m shaking in my boots. I know I need this. I just dread the whole process. The prep will be brutal. Sorry for going off on a rabbit trail there. Back to our regularly scheduled post..

I’d love to hear from you on this. What say you?

Less Wind & More Sun,

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

I Did It!

I gave myself my first Enbrel shot this evening and there was nothing to it. I felt it a bit but not enough to make me worry about the next time. (In a week). So hopefully I’m on the road to feeling better but it remains to be seen.

Enbrel suppresses your immune system so you’re more susceptible to infections, colds and flues so there’s that. The other meds I was on prior did the same thing and I did okay but, I think this does it to a greater degree.

I need to be as careful as I can about staying away from anyone who I know is sick. Having said that I’m also not going to fear going out and doing things.

A small victory for me getting over this hurdle today. Mr. CrankyPants had the day off too so that was nice.

Oh the one thing I noticed with this med is a metallic taste after I did the injection. I’ve not heard of that side effect with this med. but hey maybe I’m a ground breaker. lol I have been before.

Fun Days & Easy Needles,

CrankyPants

Starting Enbrel

I think I’ll be starting my Enbrel injections on Friday and I’m more scared then I thought. I’ve just had so many bad experiences with the meds I’m not wanting more. I’m also not looking forward to the needle. Needles don’t usually bother me, but I’ve heard this med can hurt/burn going in and I’m not digging that thought.

I probably wouldn’t start Enbrel at this point until after Christmas in case there are unpleasant side effects, but the crazy ass pressure from the Ins. Co. and even more so from the Enbrel company is driving me bat shit crazy. They’re always calling to ask if I’ve started yet, even though I told them when I figure I’d be starting, and that I’d let them know the day I do start over and over.

Add in I told the pharmacist not to fill my script until I call and ask them to. I told them I’d give them the notice needed. I told the same pharmacist this over and over. Guess what she did? You’re probably guessing right. She filled my script.

This freaking med better help for all the trouble it’s been to both get on it and start when I’m ready. I don’t know that I’m emotionally ready and that’s not something anyone in the medical world considers.

It seems this med is more about them and money then it is about my best interests, health and well being. It’s so frustrating.

You know it’s a good thing I didn’t fill my script sooner as the Enbrel co. made a mistake that would have cost me $800 had I filled it sooner. I only found out about that on Friday last week.

Anyhow on a side note I’ve been crazy busy with my business which is both good and tiring. I’m thankful for the distraction though. I can tell some of my joints are getting progressively worse like my knees, my feet and my toes. So it shall be interesting to see if Ebrel makes a difference with that.

My eyes have started to bother me a bit more. I’m guessing it’s sjogrens progressing. And I still have the crohns like symptoms with no word on the big scary test I need.

I’m really looking forward to the Christmas holidays with my Mr. CrankyPants who is taking more than just Christmas off. He’s taking some holiday time he’s owed and he loves Christmas. Since he’s just coming out of busy season at his job, it will be nice to actually get the time with him.

How are you all doing? What are your Christmas plans?

Christmas Trees & Lights,

CrankyPants

Jealousy

So I got hit with feeling jealousy over something I didn’t expect this week. As some of you may have read in an earlier post, Mr. CrankyPants brought home the sick this past week. It’s a wicked cold/flu that really doesn’t want to let up.

Mr. CrankyPants while still coughing and not 100%, is feeling better and back to work. I’m still pretty sick with it. Apparently it hangs on a long time. There are a few people at Mr. CrankyPants’ work that are going into their second week with it.

Don’t worry I’ll bring this around to my title.

I have to gage the norm with this from how long everyone else is sick because of my lupus an rheumatoid. You know, I couldn’t even fully tell when I was first getting sick with this because I never feel well and I always have fatigue. The only way I had a clue was that I was losing my voice and my throat felt funny, which technically could be the disease as well.

Anyway, where I’ve felt the jealousy is that Mr. CrankyPants will get better and move on. Although I will hopefully recover from this flu, I will never fully get better again. My illness will only progress. There in lies the jealousy.

Don’t get me wrong, I don’t wish illness on Mr. CrankyPants and I want to see him recover. It breaks my heart to watch him suffer, but it’s a harsh reality that I will only get sicker when all I want is to recover and move on.

I didn’t expect a flu to slam me with that emotion and the heartache that is attached. Autoimmune disease. The crappy gift that keeps on giving.

Have any of you ever felt that way?

Northern Lights & Moonlit Skies,

CrankyPants

 

Starting Soon

So today I got a bit of surprise in the mail. I was getting candle supplies, so when I opened one of the boxes, my mind didn’t register what I was seeing at first. It didn’t look like candle supplies. It didn’t look like candle supplies because it wasn’t. Well what was it then?!

It’s always fun to get a package via mail but this isn’t the type of package most would want to get. Okay okay I’ll tell you. When you are approved for Enbrel, they send you a free kit. In the kit is a sharps container to dispose of the needles you give yourself once a week. They also send you a case with a small ice pack in it. Enbrel has to be kept cold so the case is for traveling.

Enbrel Kit
              Enbrel Kit

I’m grateful it’s free but it’s reality setting in that I’m about to start another new medication that I hope will help without nightmare side effects. It’s hard to hope to much. I find it hard because I’ve hoped so many times before.

While I’m pretty used to giving myself needles since I had to do intramuscular injections on me for methotrexate, and I had to do subcutaneous injections on me when years ago we went through IVF, I’m always nervous to start. I’ve heard this one can burn. I need to let it warm up to room temperature to help with that before I inject. I’ve always found don’t think, just do it helps me get it done. It’s usually never as bad as your mind thinks it will be hence the “don’t think” part.

I didn’t know this package was coming and I have no idea when the pen needles are coming. I would assume soon. You can bet your ass I looked to see if the needles were included in this package. Can’t say I wasn’t glad they weren’t yet. It will give me a bit more time to work my mind around this next phase.

I would like to video my first injection but my Hubby can’t stand watching me inject. I can’t inject I don’t think and video myself, so no promises made. I will try.

Have you had to give yourself injections for your autoimmune disease? If so how did you do with it?

Sun & Stars,

CrankyPants

 

It’s Relentless

These diseases are relentless I’m sure along with me, many of you feel like we never get a break. I wish I knew what it felt like to feel well again.

Yesterday I struggled to breathe all day. That’s been going on a week but yesterday was the worst. I’m in a lot more pain in many of my joints being off the meds now. Today, I’m still struggling to breathe on and off, my joint pain is bad, I feel fatigued and now I’m having gallbladder pain as well.

I just want to kick this diseases ass right back to the pit of hell where it came from.

This is the raw reality of living with autoimmune diseases. They ambush, they hurt like hell, they’re invisible, and they cause never ending sickness. For me as far as I know, Rheumatoid and Lupus are what I’m living with.

Last night I had to hand out candy without Hubby’s help as he worked late. Holding the candy bowl hurt, getting up to answer the door hurt, dealing with my out of sorts dog was exhausting. The disease takes the fun out of everything.

I’m so done with it, but it’s not done with me. 😦

Do any of you find you get worse at night? I’m worried today feeling this rough because evenings are always worse.

No sugar coating this illness. It sucks.

Side note it’s snowing so I’m trapped at home on top of it. I had so much I needed to get done today but I can’t make the long drive on icy roads. I’m too scared and it would hurt to much to drive.

I also for the third time in the process of going on Enbrel got grilled about my Rheumatoid Disease. This time from my Ins. Co. At least they’re approving the Enbrel. Sad how they only look at the joint issue of the disease and are oblivious to all the systemic deadly issues of it.

Sunnier Days & Halloween Candy,

CrankyPants

To work or Not to Work

This is a tough subject. I am on disability but I got disability after a three year battle long before I was diagnosed with MCTD. I fought for it because I have a urostomy that fills constantly and insanely fast. For those who may not know what that is, I don’t have a bladder. I lost my bladder many years ago to IC (Interstitial Cystitis). Now all these years later I’m told it was probably the autoimmune disease that caused it.

Anyway, for my own sanity I make and sell candles and melts. I use the sanity term loosely because as much as I love to make said candles, it causes me a huge amount of pain to do so. In the beginning it wasn’t so bad, but the disease is progressing very fast for me.

I also didn’t realize when I went into this, that I would have to go to craft shows and markets. Oh how I’ve always disliked them. Add in it does me in to be at them so I miss many. I was at the market for a time and that was not fun on so many levels but try doing it when chemo is hitting you hard. Yes they use chemo drugs to treat this disease.

I don’t know how much longer I will be able to continue unless I have help. Even then It would be really hard. However I don’t want this disease to beat me, and take away EVERYTHING that I love. I’ve lost so much already.

I’ve had this for many years but I’ve only been diagnosed in the last 3. I haven’t had any time to process all that’s happening because I’ve been to busy fighting the disease and fighting with doctors. Many many doctors.  Man don’t get me started on that. I may not be able to stop. Suffice it to say it’s been a long, hard, exhausting process that is never ending.

Just for extra shits and giggles, all but one of my specialists are a five hour drive one way. So whenever I need to see my Rheumie or Nephrologist, my Hubby has to take off work to drive me. Ten hours of driving and a Dr.’s appointment in one day. That would be exhausting for anyone let alone when we’re sick as hell.

Add in winter driving in the far north and well, it’s just not going to happen. Try to tell the Dr.’s that and then you’re being non compliant. Damned if you do, and damned if you don’t.

What’s your experience been?

Blue Skies & Unicorns,

CrankyPants

Granny Cranky Pants

I hate this disease (MCTD) with a passion. In short it hurts, it ambushes, it kills, it causes you to suffer in silence because no one can see it therefore no one can believe it. It takes away your social life, or life in general.

I feel like a granny caught in an 40 something body. I wake up most days never knowing how the disease is going to attack me today. Walking hurts, my hands, wrists, shoulders, neck, elbows and back hurt. I can’t do what most others my age do. Oh and I can’t work. Some days the pain gets so bad that I have involuntary tears streaming down my face.

Did you know that these diseases attack your organs too? Oh yes. I can’t breath often, my kidneys are at risk, and I lost my bladder years ago which now they tell me is from this disease. We can’t forget neurological so let’s add in Epilepsy for good measure.

And just when I thought I was done, then there’s Raynaud’s. My fingers love to turn blue and white like I have frost bite. What the hell?! Cold and or stress causes that.

Don’t get me started on the medical world. That’s another post or maybe 100. All I’ll say on that right now is that they’re clueless.

I’m sick and tired of being sick and tired. I hate you disease. Go back to hell where you came from.

This Cranky Pants rant brought to by none other than Cranky Pants. Surprised?

If anyone else needs a judgement free place to post a Cranky Pants vent visit my contact page and I’ll get you set up.

Rainbows and twinkling stars,

CrankyPants