Anyone else? Homesteading and Chronic Illness

[earthkitty]

I'm really sick right now, and just can't keep up. With the help of hubby and the kids everything is being kept alive through this heat, but I just can't do anything.

I have an orphan disease, systemic mastocytosis, which has turned my life from happy productive 30 year old homemaker to a now sickly 41 year old shadow of my former self.

Anyone else trying to deal with a homesteading lifestyle while sick? How do you deal with it?

Anyone who is healthy having to deal with a spouse like me? How do you deal with that?

[whiterock]

I am recovering from two broken legs, when I went in for surgery on them they found I have CML, a chronic form of leukemia, also have stints in heart and bypasses to legs. I am not getting much of anything done yet. Drought and grasshoppers took the garden, lost the few chickens I had left. I am divorced and depend on DD and her DH to do many things for me. Just got the ok today to drive again. Legs are still weak, can nly walk so long before I tire out. Still things could be worse.
ED

[kirkmcquest]

That mastocytosis is a tough one, kind of like an auto immune disease, right? I had lymes disease and it took a long time for me to get treated for it. It is tough when you have so much you want to do but you don't have the strength. It's also tough when you look normal but feel terrible and people just don't understand that.

Good luck, I don't know much about your condition but I know what its like to drag around with a health problem...you're not alone.

[mountainwmn]

I had to downsize. I gave up my dream property to move to 2 acres. I do as much as I can on the good days and try to still do something on the bad ones. I break my day into 15 min bursts of activity, and If something is too hard I just don't do it. I pay the hay guy to deliver and stack instead of doing it myself, and use a 2 gallon bucket to fill water even though I have to make more trips

[earthkitty]

rock, I'll keep you in my prayers.

Yes, things could always be worse. But your reality is your reality, and I just wonder how people stay positive these days in general, let alone if you've got health problems.

I'm sitting here right now wondering if I should go to the ER, but I don't want to upset the kids, hubby's business has declined by 60% AND we had to change to a new health insurance with a giant deductible because we couldn't afford our old insurance. I just don't want to spend the money.

The world just seems really bleak right now.

[earthkitty]

Originally Posted by kirkmcquest

That mastocytosis is a tough one, kind of like an auto immune disease, right? I had lymes disease and it took a long time for me to get treated for it. It is tough when you have so much you want to do but you don't have the strength. It's also tough when you look normal but feel terrible and people just don't understand that.

Good luck, I don't know much about your condition but I know what its like to drag around with a health problem...you're not alone.

Thanks kirk. And you are right about the "looking sick" part. I was deathly thin prior to being on the stabilizer meds that I am on now (which BTW aren't even available in the US...I have to get them from Canada just to keep myself alive but that's a different thread I suppose). I looked more ill then than I do now, but as this thing progresses I feel worse and worse.

It's kind of funny how nameless faceless people on the interwebs can cheer you up. Even when you are an anti-social curmudgeon, right??

Are you still hung up with Lyme disease? I know a couple of people who have had a very hard time with that. One of the main reasons we have guineas.

[DamnearaFarm]

Aw, EK <<<hugs>>>

We discovered by accident one day that there seem to be a LOT of us with chronic illnesses- sometimes multiple (like my fibro and asthma, along with arthritis and a pinched nerve in my back for good measure ) diseases.

One thing that helps me is working smarter, not harder. I figure out the easiest way to get the most work done without stressing my body. For instance, we'll be getting milk goats soon so I intend to build my milking stand to suit whatever position will be easiest on my body. I knew I wouldn't be able to stand or squat for long so I planted bush beans instead of pole and I can sit on my little stool and weed or pick without causing too much pain.
A lot of us try to get as much done in the morning/evening outside and do inside stuff during the heat of the day.
Occasionally you do have to reevaluate and see what just isn't working, despite help from family or smarter ways of working it. And if something isn't working, then look for a substitute that will produce close to the same results that is more feasible.
Oh yeah... I just turned 35 so I know about expecting so many more productive years from your body and then feeling cheated when that number is drastically reduced.

[kirkmcquest]

Originally Posted by earthkitty

Thanks kirk. And you are right about the "looking sick" part. I was deathly thin prior to being on the stabilizer meds that I am on now (which BTW aren't even available in the US...I have to get them from Canada just to keep myself alive but that's a different thread I suppose). I looked more ill then than I do now, but as this thing progresses I feel worse and worse.

It's kind of funny how nameless faceless people on the interwebs can cheer you up. Even when you are an anti-social curmudgeon, right??

Are you still hung up with Lyme disease? I know a couple of people who have had a very hard time with that. One of the main reasons we have guineas.

heh, thanks. Yeah I am more of a soft- hearted curmudgeon ; ) The Lymes hit me hard for 2 years but has faded alot in the last year. If I had gotten the right diagnosis right away...but thats another story.

Sometimes I still feel it and those days I adjust ( small bits of activity), and some days I feel normal and I try to get as much done as possible. For a long time I didn't think it would ever get any better and I resigned myself to being sickly forever. Try to keep hopeful, and try to make the best of a bad situation.

[earthkitty]

Originally Posted by mountainwmn

I had to downsize. I gave up my dream property to move to 2 acres. I do as much as I can on the good days and try to still do something on the bad ones. I break my day into 15 min bursts of activity, and If something is too hard I just don't do it. I pay the hay guy to deliver and stack instead of doing it myself, and use a 2 gallon bucket to fill water even though I have to make more trips

mountainwmn, are you by yourself, and do you mind sharing what ails you? Maybe we could have some sort of virtual front porch for moral support here on HT for those of us who have health issues.

Honestly the only reason I am here on this property is so that my husband and kids will be safe and fed no matter what happens to me. I have been reading and researching for years and am now able to teach them how to eat without money or grocery stores, so I feel good about that. I just hope I can get enough done for them to be able to do it without me if it comes to that.

[earthkitty]

Originally Posted by kirkmcquest

If I had gotten the right diagnosis right away...but thats another story.[

Boy oh boy tell me about it... I spent over two weeks at the Mayo clinic five years ago, and they didn't catch it. They did test me for Lyme disease though, so if I'da had that they would've found it. *sigh* Sucky thing is, they found my osteoporosis (at 36 years old), and still didn't try to link that to causes other than endocrine. And they have a masto specialist up there too. I lost several years of good bone due to delayed diagnosis.

Sometimes I still feel it and those days I adjust ( small bits of activity), and some days I feel normal and I try to get as much done as possible. For a long time I didn't think it would ever get any better and I resigned myself to being sickly forever. Try to keep hopeful, and try to make the best of a bad situation.

I do try, but sometimes I feel like a burden.

[mountainwmn]

I got everything....sigh...fibro, sjogrens, bursitis, arthritis in my neck, cataracts, and something going on in my back, maybe a pinched nerve, but it's getting worse lately. I live with my bf right now, but he works a lot. I was 26 when it all hit, and west from energizer bunny to bed-ridden. It's been rough, but you think you're all alone until you read things like this- makes me feel better just knowing I'm not the only one.

[earthkitty]

Originally Posted by RamblinRoseRanc

Aw, EK <<<hugs>>>

We discovered by accident one day that there seem to be a LOT of us with chronic illnesses- sometimes multiple (like my fibro and asthma, along with arthritis and a pinched nerve in my back for good measure ) diseases.

One thing that helps me is working smarter, not harder. I figure out the easiest way to get the most work done without stressing my body. For instance, we'll be getting milk goats soon so I intend to build my milking stand to suit whatever position will be easiest on my body. I knew I wouldn't be able to stand or squat for long so I planted bush beans instead of pole and I can sit on my little stool and weed or pick without causing too much pain.
A lot of us try to get as much done in the morning/evening outside and do inside stuff during the heat of the day.
Occasionally you do have to reevaluate and see what just isn't working, despite help from family or smarter ways of working it. And if something isn't working, then look for a substitute that will produce close to the same results that is more feasible.
Oh yeah... I just turned 35 so I know about expecting so many more productive years from your body and then feeling cheated when that number is drastically reduced.

Oh man, you poor thing! Sitting on a stool is a good idea. I usually scoot along on my behind, although last week in a desperate attempt to get the weeds under control before I got really bad, I was pulling weeds laying flat on the ground. Needless to say, my overalls get quite dirty. Oh, and I failed at the weed control btw.

I don't know if there are more AI diseases now or if there are just better diagnostics, or both, but personally my illness is what made me begin studying herbal medicines. How are you controlling your fibro?

If I listed all my ailments, most people would start hearing Charlie Brown's teacher half way through the list. Mast cells are everywhere in the body, so when they misbehave, the entire body, including the brain, takes a beating. I'm allergic to any and all man made chemicals and preservatives whether they are in lotion, cereal, or fertilizer. So my push for all things from the Earth is super important to me.

And I like cats (even though I am allergic to them too), hence my screen name...earthkitty.

[earthkitty]

Originally Posted by mountainwmn

I got everything....sigh...fibro, sjogrens, bursitis, arthritis in my neck, cataracts, and something going on in my back, maybe a pinched nerve, but it's getting worse lately. I live with my bf right now, but he works a lot. I was 26 when it all hit, and west from energizer bunny to bed-ridden. It's been rough, but you think you're all alone until you read things like this- makes me feel better just knowing I'm not the only one.

Oh good, I'm glad this thread made you feel a bit better. :hugs:

How are you with your sjogren's? After I failed the schirmer test for sjogren's (severe dry eye/dry mouth), they thought I might've had that, but I had a negative lip biopsy at the mayo clinic. My eye doc did say he has a patient with sjogren's who mega doses herself with vitamin A and she has gotten much better.

You are certainly not alone.

[Ravenlost]

Wow...another masto victim? I'm so sorry! There are two more on HT that I know of, myself being one of them. Like you, I have a multitude of problems...Rosacea, fibromyalgia (which the doctor now believes may be chronic Lyme since I have now been positively diagnosed with Lyme Disease), arthritis, Mastocytosis, Mastocytic Enterocolitis, clinical depression, chronic bursitis, etc. etc. etc. My doctor just put me on prescription meds for migraine headaches and upped my anti-depressants because I've started having frequent panic attacks.

My hubby has chronic pancreatitis, muscular distrophy, arthritis, etc. Seems like he has surgery at least once a year.

We just do the best we can. It's tough. I tire so easily that my house is in a constant state of chaos. I can only go out in the evenings because I have severe reactions to sunlight so the garden suffers greatly. We're okay with that. We enjoy sitting on our front porch in our rockers or down at the pond in the evenings and just soaking in the sounds around us...birds, frogs...insects.

[mountainwmn]

It all comes and goes. Well, most of it anyway, the back issue seems to be here to stay. Most pills make me nauseous so I don't take much. From what I understand a negative biopsy isn't 100% conclusive. They told me it was a waste of time to even do it. But it can also be a symptom of fibro which you can get just from the stress of being really sick, from what I understand. I'm deficient in a few vitamins so I was taking double doses of multivitamins and that doesn't seem to help. Avoiding stress helps but I'm sure we all know how impossible that is.

[akaRach]

Wow, funny how things work.

I can't touch my skin without raising a hive that last for hours, altho reactin helps. Which the doctor prescribed. And the whole time he was talking about mast cells, questioning me, trying to figure out if my internal organs were involved. I don't think they are.

So, thanks for posting. I'm not in your situation but thanks to you I found out a little more about a personal situation. Good luck to all who've posted.

[mountainwmn]

Thought I would add something... for depression and for fatigue it doesn't hurt to get your b12 levels checked. Especially if you take heartburn meds or don't eat a lot of meat. I had to get a shot and wow. My mood and energy are better than I remember in the last year. Without shots you can just eat Marmite, but most people in the US would prefer not to.

[earthkitty]

Originally Posted by Ravenlost

Wow...another masto victim? I'm so sorry! There are two more on HT that I know of, myself being one of them. Like you, I have a multitude of problems...Rosacea, fibromyalgia (which the doctor now believes may be chronic Lyme since I have now been positively diagnosed with Lyme Disease), arthritis, Mastocytosis, Mastocytic Enterocolitis, clinical depression, etc. etc. etc. My doctor just put me on prescription meds for migraine headaches and upped my anti-depressants because I've started having frequent panic attacks.

Hey Raven, how odd to have several people here with mast cell issues!

Through all of my research, I did learn that one reason I can tolerate valium for panic/anxiety is because it works on the fourth histamine receptor. Most vitamins and medications I can't take as they either do nothing or make we worse.

There is also research being done on mast cell degranulation in the brain. I have a drug called hydroxyzine on my list to ask my doc about next time I go, to see if it is something I can tolerate AND something that will help with the mental issues. That drug has been shown to stop degranulation in the brain by up to 70%, but the study was done in regard to MS, but mast cells are mast cells and all research regarding systemic mastocytosis is experimental anyway.

I'm bi-polar, and I assume it is all related. When I get worse physically I get worse mentally and vice-versa.

I tire so easily that my house is in a constant state of chaos. I can only go out in the evenings because I have severe reactions to sunlight so the garden suffers greatly. We're okay with that. We enjoy sitting on our front porch in our rockers or down at the pond in the evenings and just soaking in the sounds around us...birds, frogs...insects.

I hear you sister. My house used to always be so clean. And I too can't be out in the heat/sun (or extreme cold, for that matter...impossible to deal with this disease). I get itchy rashes and blisters on my hands if they are in the sun, so I wear gloves whenever I am in the garden, long pants long sleeves and boots too.

My husband is a healthy guy (although he did have back surgery, and also has pretty severe OCD), and sometimes I just feel sorry for him having to deal with me. In sickness and in health, right??? Doesn't stop me from feeling like he got ripped off in the wife department.

But you are right, sitting on the porch at night listening to the frogs and cicadas, watching the bats, those are worhty sounds and sights, and I am lucky to be living in a place where we can do such things.

So thank you for reminding me how good I do have it.

[earthkitty]

Originally Posted by mountainwmn

It all comes and goes. Well, most of it anyway, the back issue seems to be here to stay. Most pills make me nauseous so I don't take much. From what I understand a negative biopsy isn't 100% conclusive. They told me it was a waste of time to even do it. But it can also be a symptom of fibro which you can get just from the stress of being really sick, from what I understand. I'm deficient in a few vitamins so I was taking double doses of multivitamins and that doesn't seem to help. Avoiding stress helps but I'm sure we all know how impossible that is.

Maybe you are like me, in that I can't take vitamins in pill form. I have to get what I need from food sources, one of the many reasons I am trying to grow everything I eat, from apples to eggs to milk. Don't have the sheep producing milk yet though, and I hope I can count on my kids to do the milking because my hands are crap, as are all my joints.

I chose sheep for milking because the vitamin content of sheeps milk is way better for someone like me than any other milk.

[Ravenlost]

You are more than welcome! Sometimes we just have to let go of the things we can no longer do and enjoy the things we still have!