Second video is me actually having success with self injecting. I figured out why it wasn’t working. Real life at it’s best.
I wish I’d experienced one Dr. who I really felt cared about me as a human being, not just another medical case.
I wish they’d explain things to us like what to expect with meds and the disease. I’ve just had a bunch of diagnosis and meds dumped on me and then sent packing with not even a pamphlet. That’s after three years of trying to get docs to believe me and find answers.
Had I not done my own research ahead of time (because I knew before them what I had) I would have been so blind sided and terrified with the illness and side effects of the meds.
I actually liked when my Internist and his PA Googled in front of me. I liked that they were actually fighting to find answers for me, and willing to learn.
Being treated as a person and not just a disease out of a medical book would be wonderful. Bedside manner is huge since we’re already fragile.
Being able to get results over the phone would be of huge help and save us on so many trips to the Dr’s. Even Skype appointments where it’s possible need to be an option. Doctors don’t really think about how hard it is for us being this sick to get to them.
Our time needs to be respected. I’ve had to wait at a couple of appointments for 4 hours. That’s just not right. We need more specialists where we live. There are hardly any. For most we have to make a 10 hour round trip drive. When on certain meds, that means every three months. If we have an emergency situation, there is nowhere to turn since the medical world is pretty much clueless about autoimmune disease.
That’s another thing. The medical world needs to be more educated on the these illness and the meds for them. It’s stunning and scary how little they know. How do we feel safe in their care if we know more then they do?
I wish doctors would really listen to us and work with us on what’s best for us, not treat us all as cookie cutter patients. These diseases present differently for everyone. So we need different treatments.
Doctors, don’t brush us off. We are not hypochondriacs we are in pain. We are not drug seeking. In fact if we could we’d run far away from meds. They are as scary as these diseases.
Get to know us so when we come to see you, we don’t have to start from the beginning every time. It’s overwhelming.
Care. Just care or get out of the job. We are not dollar signs. We are suffering people.
What would you want to teach the medical world?
Summer Days & Rainbows,
Fighting vicious invisible and painful autoimmune diseases are very hard and a daily struggle with pain, fatigue, & unpredictability. They are isolating and make it so hard to make plans as we never know when we will be slammed and with what. Just because you can’t see the illness or disability doesn’t mean it’s not there. For the most part we try and hide it. I can guess if you looked in our eyes, you’d see the pain.
Rainbows & Unicorns,
Hey everyone. It’s been craziness around here. I’ve been busy painting parts of our house to get it ready to put up for sale, and shoveling a shit load of snow. Holy snow batman we’re getting up here. It just won’t let up.
I feel my heart sink every day I get up and see it still snowing. It leaves me trapped at home. I panic driving the winter roads up here since they are not taken care of. Also it’s a long unpredictable drive with a urostomy and gi issues. Sigh. Can’t wait to move.
I’ve been in a significant amount of pain with all the painting and shoveling but I have no choice, it has to get done and Mr. CrankyPants works so I have to do it.
How do you all cope with life when you’re sick? It’s so hard to keep up but it seems there’s little choice. I do get a nap in every day. Whether I sleep or not is iffy. It seems to be when everyone wants to chat, the phone rings, the dog barks..geeze. I at least lay down. The pain killers make me sleepy and dizzy. The fatigue from the illness gets me too at times.
I wanted to remind everyone that I have a Facebook Autoimmune support group going. It’s hard to grow when it’s a closed group but I want to keep it as private as possible so that people feel free to talk about things they would otherwise not. We have a great discussion going about how these diseases affect our relationships today. Drop by. I’d love to see you there. Here is the LINK.
The link is also on the sidebar of this blog.
No snow & Sunshine,
Before I start I want to say that I realize most people have good intentions and just want to help. Having said that, with all do respect please I beg you stop trying to fix our disease. It’s not helpful. If you want to be helpful just listen to us, be there for us, maybe be willing to work around our illness to spend time with us, make it okay for us to ask for help if we need it. Read up on what we are living with. Learn about it. You can’t know how much that would mean to us. Cry with us, laugh with us, walk alongside us.
Please don’t say things like:
If you ate healthy you wouldn’t have RA.
I swear if I hear that one more time I might slap someone. Healthy eating might, and I say might help with inflammation but it neither causes or cures autoimmune disease. That kind of comment actually blames us for getting these diseases. The last thing we need is guilt for being ill.
If you eat healthy you’ll be better.
No we won’t it’s a chronic progressive illness. Babies get these illnesses so it can’t be blamed on food. Period.
My father’s sister’s brother’s uncle has “lupus,ra…” and he’s doing just fine.
Who the hell cares. Don’t compare me to someone else. Everyone is affected differently. Many hide the pain, and things can change in a nano second.
You are lazy.
You’re ignorant. No we’re not. We’re sick. We have a fatigue so extreme it’s debilitating. No amount of sleep can fix it. Walk one day in our shoes and you likely wouldn’t be able to handle it. Our body is trying to kill us. That’s tiring. Not to mention the wicked side effects of most of the meds we are on.
You just need to get out more.
Don’t you think that we know that? Furthermore don’t you think that if we could, we would? Damn if only we could.
You need more exercise.
You need to shut the hell up. You cannot imagine the kind of pain we live with and many of us still do exercise. Imagine every joint in your body feeling severely sprained, never getting better and only getting worse. Add the fatigue, breathing issues, gut issues…and much more. Now you exercise. Get back to me on how that goes for you. Dr’s I’m talking to you too.
You need to lose weight it’s hard on your joints.
I thankfully haven’t had to hear this one. I’m underweight because I’m ill. Case and point right there. My joints are very painful. Weight isn’t causing it. Again, Dr’s listen up. And please Dr’s while we’re at it learn about these diseases. I had a Dr. tell me I don’t fit the box for lupus. What box?! We’re all different. Get your heads out of your text books and be willing to learn from your patients.
You don’t look sick.
What does sick look like prey tell? Someone could be dying with heart disease but you wouldn’t physically see it. Just because we don’t look sick doesn’t mean we aren’t. We become very good at hiding it, in part to avoid all these kinds of comments. This is a particularity tough one when using handicapped parking without any aids. It’s very likely it’s taken every bit of strength and energy for us to even get up and or shower in the morning. You have no idea. You won’t see that when we’re out and about. You won’t see the extreme suffering we go through when we’re at home. If we happen to get out once in a while it’s a big deal. Oh and you won’t see just how much we pay for said outing later.
You should try a homeopathic Dr. everything starts with the gut. Or try “abc” diet. It helped/cured so and so..
This one ticked me off today. Just know that when one is this sick we will likely have tried just about everything out there to get better. I did a two year candida diet. I went off all carbs, sugar, and anything you can think of that wasn’t healthy. You know where it got me? Sicker. That’s right sicker and very underweight. I did all the so called right things to no avail And if it all starts with the gut then again, why do young children get these illnesses? Again these diseases affect us all differently. Keep the “you should’s” to yourself.
If I tell you I have RA, and Lupus and you say something like, “I have a sore pinky finger.”
I understand it hurts. I’m sympathetic to you, but you will recover. Maybe if someone tells you they’re battling an illness like the above, listen show interest learn. Don’t automatically jump to telling them about your pain. It’s hard for us to talk about it, so when we do we likely trust you and want to be heard. We want you to take interest. Don’t confuse that with wanting pity or attention. It’s not what we’re after. Sometimes we just need to share our pain. They are lonely diseases.
I know there’s many more but since this is getting long I’ll stop there. Please add the things you hear that drive you bat shit crazy in the comments. Wherever there’s a chance to educate others let’s take it!
What do you hear that is upsetting? If I get a good list from you guys, I’ll post it with your permission.
Sunny days & Getting out,
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,