The joy of walking

General
1

The best way for me to deal with pain and stiffness is to walk. I do not leave home, we have over an acre, and our friendly neighbor has over three acres, so I walk here.

I usually wait until near sunset, so I am not out in the opressive heat and humidity. Tonight there were humming birds through our Mimosa trees that are in full bloom. There is a mockingbird nest in the butterfly bushes.

We have green beans and yellow squash, along with onions and tomatoes in our raised beds my husband made for us, that are ready to enhoy. Hubby spotted an Eagle earlier today.

The flower beds are overflowing, and the zinnias started in the greenhouse are all starting to bloom, along with the crepe myrtle, hydrangeas and many shrubs that I have long forgotten the names of.

So not only am I doing something good for my body, but for my soul. Forgetting the pain, the illness and just enjoying the beauty and wonder.

I know that the possibility of someday not being able to walk is very real, so I want to walk as long as I can, as well as I can. There are good days, and bad, but the walk always does me good.

2

Have you been diagnosed with lupus yet or does your blood work keep coming back negative too?? i cant remember if it was you or not...and its always good to look at the positive things in life.. :))

3

Hi Cammy,

My blood work keeps coming back negative too! I have many of the symptoms, not the rash, but I didn't get psoriasis, but have Psoriatic Arthritis. I also have Raynaud's and Sjogrens that very often accompany Lupus.

It took quite a long time for the Sjogrens to show up, that was the first Autoimmune diagnosis. So many of the symptoms and complaints of Autoimmune are very similar, fibromyalgia is also very similar, but that does not show up on bloodwork. I have that too. Hard to tell which one is acting up sometimes!

It took me 7 years to get the diagnoses that I have, it is not an easy process, but it should not be so difficult!

Hope that helps.

SK

Nothing is showing up on the brain MRIs either, that is okay with me!

4

Beautifully said! I love walking and enjoying all of nature’s benefits to the soul! It sounds like you have a lovely area to do so!

Hugs,
Rachel

5

SK

That was so lovely to read for me first thing morning. Your home sounds wonderful, and I got an amazing mental picture as I was reading this. I love wild birds, and we put out suet and bird seed, and they birds fly right in front of me when I walked out my back yard this morning. It's like they were saying "thank-you" and I heard them singing and flew up to perch on the trees and just chirped away. I haven't been able to walk my little dog for quite away, just because of the fatigue and my foot pain, but I think i will take him for a short one this morning. My energy level is higher in the morning, but on week days, when I work I don't make the time and save my energy for working. Enjoy the rest of your weekend!

Trisha

6

It is definitely a plus to be able to move and observe the beauty of nature - something outside of ourselves! If I awaken in the night with pain and unable to sleep, I grab my roller walker and walk around the house. After a bit I am able to settle back down and sleep.

I definitely miss the three mile walk that was part of my daily routine before my illness. And I'm hopeful some of my ability to walk will be restored. Your walk sounds wonderful seeing the flowers and the veggies. And don't you find that somehow it clears the head and emotions and provides a sense of wellbeing?!!

Photography is one of my "likes" so I take my camera along and snap pictures to look at later, thus extending my outing. Too bad some of us don't live closer; couldn't we have fun encouraging one another along a walking path...laughing as we go! We would surely understand each other.

My walking is very limited now...a few steps out into my front yard is laborious, but I sit on my lovely porch and view the horses grazing, hummingbirds feeding, dogs sleeping, and kitties begging for attention.

Thanks SK for the sweet reminder to do something... to move...with the ability we have. Happy Moving!!

7

Did u see a Rheumy? Or was it just your Ana that was negative or all of your blood work?

8

Hi Susan

What a wonderful place you have to walk. Wow! Mimosa trees in MD? I had no idea!

I can tell you and comero96 one reason your lupus tests keep coming back negative. Almost no one realizes this, even lab techs are not taught this. It was a genius Dr. who was both an internist and rheumatologist who had studied how certain tests are done, who taught me this. For the LE cell prep test and a couple other lupus tests, the test must be done within an hour of the blood being drawn, or those blood factors dissipate. Those tests are often sent out of town and even to different states and provinces. If the person who is drawing your blood is busy that day, even if that test is done right in their hospital, if they take more than an hour to get back to the lab, it won't show up. I've often wondered if lab techs wonder why none of the out-of-town blood tests ever show positive for lupus. Also I was told that if you ever haved one positive LE cell prep test, you have lupus. There is no other reason that can be positive.

I'm in a smaller city in Canada where the lupus tests are sent away, so while I've lived here, I haven't had any positive lupus tests, so my doctors legally won't write down that I have it, even though I've had 4 or 5 posititve lupus tests when I lived in the USA. For me, the treatment is the same whether it says positive or not, as they just treat the symptoms either way. Most doctors will just call it lupus-like syndrome or undifferentiated connective tissue disease. The present one won't let me even mention the word lupus. It's fine though, she only gives me a couple of prescriptions a year, and seems to not know much of anything about any chronic condition. I'm so allergic to most prescriptions that I end up finding a natural medicine to replace any prescription she offers.

9

Oh Susan! I just now realized that you are here in lifewithlupus, instead of where I usully see you, in livingwithfibro! I just clicked on the email JC sends out, often not seeing which group it's from. So what made you join lifewithlupus?

Oh yes...nevermind that question. My memory is getting worse. Now I remember that you have lupus symptoms overlapping your other diseases.

10

Hi Sheila,

Terri read my profile when I became a moderator on the Psoriatic Arthritis site, and saw that I had SLE listed first on my overlap syndrome, saw that I also have Sjogren's and Raynaud's (also belong to those sub groups here) that very often link to Lupus, so I did join, and it was Terri who urged me to become a moderator here, so I go between the three sites, good thing I have high speed internet!

I was just telling one of the gals that we had you in common as a friend, I saw your smiling face as I wished her a happy b-day!

Hope you are having a good day Sheila, always nice to talk to you! Did you show the photo of HC to your brother! Please let me know if you discover more on your family tree.

Big Hugs,

Susan

11

How interesting! I have never heard this before, I don't think any tests are done by the Phlebotomist, even in the hospital, but could ask. Any chance you remember the Dr's name?

Sheila W. said:

Hi Susan

What a wonderful place you have to walk. Wow! Mimosa trees in MD? I had no idea!

I can tell you and comero96 one reason your lupus tests keep coming back negative. Almost no one realizes this, even lab techs are not taught this. It was a genius Dr. who was both an internist and rheumatologist who had studied how certain tests are done, who taught me this. For the LE cell prep test and a couple other lupus tests, the test must be done within an hour of the blood being drawn, or those blood factors dissipate. Those tests are often sent out of town and even to different states and provinces. If the person who is drawing your blood is busy that day, even if that test is done right in their hospital, if they take more than an hour to get back to the lab, it won't show up. I've often wondered if lab techs wonder why none of the out-of-town blood tests ever show positive for lupus. Also I was told that if you ever haved one positive LE cell prep test, you have lupus. There is no other reason that can be positive.

I'm in a smaller city in Canada where the lupus tests are sent away, so while I've lived here, I haven't had any positive lupus tests, so my doctors legally won't write down that I have it, even though I've had 4 or 5 posititve lupus tests when I lived in the USA. For me, the treatment is the same whether it says positive or not, as they just treat the symptoms either way. Most doctors will just call it lupus-like syndrome or undifferentiated connective tissue disease. The present one won't let me even mention the word lupus. It's fine though, she only gives me a couple of prescriptions a year, and seems to not know much of anything about any chronic condition. I'm so allergic to most prescriptions that I end up finding a natural medicine to replace any prescription she offers.

12

I am on my second Rheumatologist, the first one didn't even think I had fibro, found no autoimmune diseases, even though Sjogren's came up false positive! My GP, very religious, said BS to that, never heard that out of his mouth. Took him a while before he decided on a second one. My current is board certified in Internal Med, Rheumatology, and is a University Professor. He said I had Fibro, Psoriatic Arthritis, Secondary Sjogrens, and Raynaud's. Right now he is trying to slow the progression of the arthritis. Like the Sjogrens it is a systemic autoimmune disease.

God knows I don't need lupus, but it is very possible. My GP told me it could show up at any time, but after learning what Sheila just told us about the testing, who knows, might not!

camero86 said:

Did u see a Rheumy? Or was it just your Ana that was negative or all of your blood work?
13

It was one of 2 doctors that first found my lupus. One, Dr, Fox, passed away soon after my diagnosis. The other was rheumatologist & internist Patrick Knibbe. (pronounced Ka-NIB-bee) He's either in Boise ID or Seattle WA now.

SK said:

How interesting! I have never heard this before, I don't think any tests are done by the Phlebotomist, even in the hospital, but could ask. Any chance you remember the Dr's name?

14

And their word is not good enough for Canada?

15

Nope. Here each doctor has to take the tests and treat only what the tests show positive, to save the government's money.

16

What a wonderful way to enjoy life! I used to love to walk, but have nephritis now, and carry too much water, especially in my legs, so there is pain when I try to walk. But, keep it up as long as you can, and keep the great descriptions of your place coming!

17

Thanks RJQ!

We have 2 crabapple trees, one with a gala looking fruit, and one that looks like a red delicious~ the birds love them! There are 2 Walnuts, about 6 stories tall, a Hackberry at least that tall, we had to have all of the Ornamental Elms taken down, unfortunately, they were also about 6 stories tall. We have tried to plant various Cherry and Dogwood, but they just do not seem to like the soil, even when we put all new soil in the holes we dig. We have a small strawberry patch for the kids, they love to pick them and eat them right then and there in the spring, the ones the chipmunks don't get. I have kitchen herbs, chives, parsley, rosemary, thyme, mint, oregano, basil. My husband built a beautiful grape arbor, and we have 3 kinds of grapes. There is a huge old lilac, a bleeding heart, azaleas, peonies, petunias, gerber daisies, margaritte dasies, salvia, coreopsis, dianthus, white and purple alyssum, lobelia, one red rose, the frost got the others, assorted marigolds, impatients, zinnias, vincas, begonias, cock's comb, hydrangeas, which sould have been planted closer to a water source. There is a flowering bush with tiny pinkish white flowers and another with an orange-yellow flower that I cannot remember the name of anymore. We have toads, usually only see them when it rains excessively, a frog that lives in a drainage pipe near the road, hopefully no more groundhogs. A red pepper patch, green beans. Locust trees that line the back side, and my husband has a good size patch with bamboo, that is growing by leaps and bounds. When we bought the place it had some apple and peach trees, but the were planted directly under large trees, and a type of hornet would literally hollow them out, they looked normal, but they were hollowed out, just the outer skin was there. We took those down for both reasons. Don't want them after me or the grandkids. There are a variety of big trees to the side, not too sure what they are, and my favorite is an eastern Redwood, very simialr to a Hemlock.

18

Wow, it sounds like you live in a sort of paradise! I live in the high desert, at around 4,000'. So we get some snow, and rain, but not enough to really water much. But, the bugs here are not as bad as I suspect yours are. Right now, we seem to be having an explosion of black and brown widows. Every year some sort of bug explosion happens.

19

We like it, not perfect, and right now hubs has been digging around building sprinklers, his own invention, work pretty well, keep me from having to drag a hose or tote water in containers.

Oh yes, sure do have lots of bugs, when we took the boys out for fireworks on the 4th, I had to really soak them with mosquito repellant from the health food store, plus we get those gnats through the lawn, You have to be afraid of all the chemicals you COULD use outside, not only because we have a well, but because of the kids and even us. You just never know...

I imagine if you look hard enough you will find copperheads and Rattlers further up. Surely you have those besides spiders, but, little humidity, and it is so opressive here, all seasons.

20

I like that you dwell on the positive. I know many days I have to look long and hard for a silver lining, you stated it beautifully. Thank you for sharing.