I spent the better part of the day trying to figure out how to change.
Should I go vegan? Vegetarian?
Should I try getting up at 5am every morning and walk to the end of the block again? Then in a week around the corner? Then in two weeks around the block? Or should I try to get in the pool daily and swim?
Should I cut out dairy? Maybe carbs.
My doctor gave me the ok to try whatever I wanted and gently reminded me nothing would really make a huge difference until I was off all these steroids saving my life.
…off all these steroids saving my life.
I’m not sure about the saving my life part. Sure they are saving my organs, but what life are they leaving me with?
There has to be a happy medium here. I’ve been trying to find it for a long time now and I’m at my wit’s end. I have to LIVE.
I want to enjoy myself not just stay alive. And my situation is not so desperate where I can’t think about doing these things, even my doctor agrees. It’s why he has no trouble with me flying again at the end of the month to see family (so long as my lab results and body are doing well) and it’s why he won’t stop me if I want to try new things.
The question is…what? I know I’m limited. I know I won’t put my body in danger, it has to stay here and healthy for those I love. But I need to have A LIFE. A life that includes romance and outings and friends and socializing and fun.
I feel like drastic changes are needed in order to take control of this situation. I know I can’t take control of Lupus, but maybe I can change enough of my habits and my lifestyle that Lupus will have less of a chance of seeping into every part of my life…as it has.
Right now, post hospital stay, it’s all-consuming and all around us and all a little too much. I can’t push it out of my mind or shield the family because there is too much aftermath to deal with. Hopefully that portion will be over with soon. Then I can go about life for them without mentioning the “L” word for a while.
In the meantime I will formulate a plan to move forward, again. Thus far I will begin school again in the Fall. Enough to keep my brain going so it doesn’t go numb and I work towards a goal.
Physically it’s harder. I have limits to what my body can do, but they aren’t so great that I can’t overcome them and they aren’t so great that every so often I can’t get off my duff and move. It won’t be easy. It will take time. But change has to come.
I can’t live like this. Ideas are welcome.
Well, there is medical cannabis. Not even the kind that gets you high — I’m talking high-CBD stuff that’s powerful anti-inflammatory and non-psychoactive. And it can be made into tinctures that have other ingredients that are actually good for you, like cacao, ginger, apple cider vinegar, etc.
It’s done wonders for my asthma now that I can’t afford the steroid inhaler that I used to need to start my lungs in the morning? Now they work most of the time, it’s insane the improvements I’ve seen.
Non-psychoactive, but kind of like a runner’s high — best way I can describe it. You hardly notice. It doesn’t make you feel weak or dragged down. Some can even be energizing.
I know I’ve mentioned it from time to time in facebook threads and no one really responded, but I have some knowledge on the subject, I work for a collective, and I am the tincture lady. And I think I might be able to help. It’s possible.
But if the subject bothers you and you’ve only been politely ignoring me when I mentioned it before, I apologize. I just wanted to make sure you heard, now I’ll stop unless you want me to go on.
Again, sorry if it was bothersome.
Hiya Babe. Why you gotta go drastic? Gentle and progressive is good.
I’m the last person that should suggest a dietary path but I’m thinking what does your body need that can be supported by a certain type of food plan. Is there someone in the Lupus community that has talked about a nutrition plan that is compatible with your health needs?
I run the risk of being trampled by the Food Police but I’m thinking it isn’t so much the type of diet as much as the diet needs to support your body needs and your current culinary capabilities. It has to be tasty, affordable, doable and helpful. And tasty.
Yoga is always a good place to start. In bed, in the living room or where ever you find yourself.
I can vouch for the walk to the end of the block and back as a starting point. You can use it as a focusing meditative tool.
In any case, what about checking out the sites of Registered RDs or qualified nutrition supportive sites and blogs?
The documentary “Forks Over Knives” made a big impression on me and eventually led me to give up dairy, then meat. My husband wasn’t going to have any part of it, but he’s seen the transformation I’m undergoing and now he’s cleaned up his own diet considerably.
I also am a big fan of yoga and walking.
Best of luck figuring out what’s right for you. It may take some trial and error, but you’ll know when you’ve hit on something sustainable for yourself that makes you feel better.
Vegan is tough unless the whole family goes vegan. You don’t need the extra work of making two balanced meals or eating just whatever is vegan that they eat. I would ease into something by taking a look into inflammatory foods and dropping those from your family’s diet, if you haven’t already. Then tweak here and there where it makes sense for you and your family.
Although I’ve never been either Vegetarian or Vegan, my wife and all three kids have tried one or the other at one point or another. Final result: 2 Pescatarians, 2 Meat Eaters.
Myself and the two meat eaters eat meat at, I would say, way below the National average.
So my advice? Veganism is VERY tough to pull off. I agree with the previous post regarding being the only vegan in the house. Vegetarianism, these days, is much more doable. I like to cook and, over the years and changing eating habits, have found that there is good taste and enjoyable eating experiences in the vegetarian world.
But the bottom line is that I’m not sure it’s necessary to be that radical. You can cut WAY back on meats if you think they’re some kind of evil, but leave yourself room to still enjoy the occasional BBQ or whatever. Call it Vegetarianism with an *
Exercise? You should how I feel about that: #HTFU
Realistically, start slow and build. Make it fun if you can. For me, that is key. If you dread your daily “workout,” you won’t keep at it long term but more to the point, why waste your precious time doing something you don’t enjoy?
Take care. You can do it Erin.
My standard advice (and I wish I could follow it better) is to cut way down on sugar and processed food. If you can do it, you’ll notice a huge difference in energy and mood. Keep your food simple and easy to make. Lots of protein. Vegan is not a complete diet – you need supplements. Start lifting light weights consistently if you can – adding a little lean muscle mass and toning will make you feel better and be more likely to keep going.
You could just dip into it a bit. 1 vegetarian dinner per week. 1 vegan dinner per week. This could be something the whole family can participate in-finding recipes, everybody helping with the preparation, discovering, as a family, new tastes. There are whole societies that practice vegetarianism, might prompt interesting discourse with the kids.
I am a devoted carnivore, but sometimes, I just don’t feel like eating meat. There is a PBS Create show called Christina Cooks, watch a few episodes and you will be inspired! 🙂
Well everyone has jumped in with lots of smart, sensible advice here. I would say listen to them. Unless you have a food intolerance, eliminating a food group – gluten, dairy, meat etc, is probably not going to do you much good.
My advice eat healthy – try to increase the amount of vegetables and fruit and decrease the stuff you know isn’t good for you, but dear gods it tastes so good. Listen to your body when it comes to exercise. If it says, I’m ok to go for a walk, go for a walk, but if it says Not Today, then don’t – but you know that stuff, so just keep listening to your body and doing what it says. Take it slow and don’t beat yourself up about this. You are running your own race, in your own time. If someone tells you you should be doing more of this or that, tell them to butt out of your race. Unless of course that someone is your doctor, then you should listen to them.
You have got this, you can do this.
I hear all of you and am taking it all in. We’ve done a fair amount of cutting back on meats already and certainly red meats but honestly that doesn’t seem to make much of a difference. I have no issue with medical marijuana, neither does my doctor, the only issue is my pain is such that I require very heavy narcotics at this point – like STRONG ONES- so I’m not sure that would work for me either but I’m open to hearing about it.
Exercise is a toss up right now as I’m swollen again (doctor just ran the labs and it’s not from water or the steroids, it’s the inflammation) so I have to keep my feet up. So really water is one of the only options. And that is hard unless the pool is super warm. So here’s hoping my pool is super warm today.
I appreciate all your advice. I plan to look into everything. Nothing is off the tablee.
Have you thought about yoga? There are types of yoga that are really gentle on your body. I live in your area, and at YogaWorks they offer Gentle Yoga, Restorative Yoga and Relax Deeply classes. Most of them are done almost completely on the floor—there isn’t a lot of standing—so it’s gentle on your joints. In these classes they use a lot of props to support your body—bolsters, blocks, blankets—which allows your body to gently stretch without too much strain.
Hey Erin. My dad walks up and down his stairs. He can’t do much more than that, but it is exercise and maybe can be a start for you. You will be in your air conditioning and can start slow and hopefully increase with time to that walk around the block.
Sending warm thoughts your way!
And maybe some light hand weights while you keep your feet up? Raise your arms up and down ten reps and bingo you are working hard! Maybe try to talk to a Physical Therapist for some light exercise ideas.
Control is at the heart of your question. When so little feels like it can be controlled there is intense pleasure in exercising control where you are able.
So food is an obvious place to exercise some of that power and if you enjoy food it is also fun. So experiment. Dive into a region or a way of cooking for a day or two a week. But remind yourself that with experimentation one needs backup meals. So maybe before you start take a few days to cook and freeze some favorite meals 🙂
As for exercise well I am not sure it is really exercise but you could try focused deep breaths. Center yourself and breath. I do this when my low level anxiety is acting up. I am not sure what it does but it seems to help. And more importantly I feel like I have a way of taking control.
Water walking…… sounds dull but so good for you. Walk go and down the lanes. Also, what about adding in foods that cut inflammation. Indians have one of the lowest rates of arthritis because of their foods. A quick search found this..
http://blogs.kqed.org/bayareabites/2013/01/28/5-essential-foods-that-reduce-inflammation-and-optimize-health/
Also be aware the some people, including myself, have a milk protein allergy. This is different than lactose interoleran e. My delayed reaction includes heart burn and other digestive issues, pain and my joints and muscles and post nasal drip. When I don’t eat dairy, I feel much better.