Saturday, April 18, 2015

"A Tagline" for my patient experience! WEGO Health Wtiters Challengs April 17, 2015! #HAWMC

My very first thought is exactly what the "title" of my upcoming book is:


"It's Not ME! It's The Disease    "Stupid"!


Well, the first thought was to add the word for description   "Stupid" at the very end. Of course I surely want people to read my book, so the very last thing I would want to do is offend someone with the title.

Of course, everyone that totally "gets" the brain fog, the lethargic fatigue, the times when you are just too ill to put makeup on to go to the market, and all of the other "times" that come with these insidiously mostly invisible diseases.

This is due to the fact, that we have SO MANY that do NOT understand any type of what we call "invisible" illnesses. 

There are times that either "brain fog" causes me not to be able... to probably makes sense to some, yet I feel they just don't "get it!"

Sometimes I would love to wear something around my neck that says "I TRULY AM NOT WELL!! Just because I may "look okay" and run out to the store, yet at home I look like hell! And there are days I DO park in the handicapped sign zone, and sometimes I don't. Yet, I have those that "stare" at me, as soon as I am getting out of my car. They think if I am not on crutches, a walker, cane, or almost crawling into the market, then why would I have that sign?

When I am upset, often it is due to the pain, physical, mental and emotional. So, those that don't "know" me, probably due to NOT listening or seeing what they should, they are mad because I don't go out a certain time, or they wonder why I can't mow my yard.

There are all kinds of things that go into what we call "Invisible Illnesses and Pain". There are days I am in horrendous pain, yet something may have to get done, so yes I go out. Just because I am out, don't think I am "better".... with anyone you know, that has illnesses such as Lupus, Sjogren's, RA, MS, FM, Chronic other back disorders, migraines, chronic pain.... there are MANY of us that walk thru life, and MANY people out there that don't "see" it, yet even with the "invisible" there are symptoms and signs to watch out for.


I now have to make lists, to remember my lists, so I don't forget my list! One day I maybe hand washing my car, the next I maybe on the sofa unable to move. Or Worse, one moment I can "appear" well, and within hours be so severely ill, that I have to go to the Emergency Room.

So, if there was a "tag line" that I could wear, use, put it on my door, or in my car, would be   - "It's NOT ME!  It's the DISEASE!!   - maybe or maybe not with the "stupid"


Also, one other that truly resonates with me is::

  "Life's Too Short! Eat Dessert FIRST!

 

 

WEGO HEALTH Writer's Challenge for April 2015!  "Your Tagline"...

What are 3 Things I am so looking forward to doing this Summer! WEGO Writers Challenge - #HAWMC April 18th, 2015

First and foremost, wearing shorts, sandals and cute Short Sleeved Shirts and Blouses! That may sound silly, but after this cold weather, with always jeans, long sleeved shirts, boots, socks, coats, and so on, I am so ready to NOT to have to put all of those on for a while. Plus I have a few new Summer tops I have bought, so I am ready to take those for a "spin"!

The 2nd activity that really seems to help me physically, mentally and emotionally is being able to get out and walk every day. That becomes my main priority and a great warm weather habit for me. So, I've already been out and about doing some of that, but with the hips and back hurting so badly, I've not been able to do as much as I want. Hopefully after the Transforminal Epidural Steroid Injection into my L-5 space vertebra, and then both hips getting injected next week, that will put me back into the physical goodness I need in order to really get out there and pound the pavement, or usually laps around a local park or my own driveway also!

I love having lots of flowers, plants, trees, and I bring almost ALL of my "indoor plants" outside for the Summer. I can usually take them out as soon as we know there will be no more surprise freezes. Then they can bask in the Summer warmth and sunshine, up until sometimes September. It depends on when our cooler weather hits, but they LOVE being outside on my front porch. Now I am talking about 70 plants or MORE that I have in my house in the winter, then they all but a few go outside in the spring and summer!!! I always giggle when I see the little tags that "NASA" puts on houseplants now when you buy them. It tells you how many "plants" per square feet in your home is best for the air. Believe me, my house is tiny, so I have way MORE than enough to "clear" the air in my home. I get bummed because there are many things that I used to love to do outside, that due to the Lupus, RA, joint replacements, Sjogren's and other health problems, my ability to do a great deal of pushing a lawn mower, doing the weed eating, bending too much, even raking, hoeing, and so much I loved to do, now is no longer feasible or advisable by my physicians. But, I can certainly do other things that are not as strenueos to the body as others.

A third thing, that I LOVE to do is put my Hummingbird Feeders out, and we both love to "bird watch" all Summer long! We have SO MANY different types of birds, and we have watched them and know so many of their "habits", why they do things a certain way, and really have an awesome time all spring, summer and into fall watching the birds. Of course the Bluejay? is the Texas "bird". But, we have loads of red birds, wrens of different kinds, finches, woodpeckers, mockingbirds, doves, black birds, and Purple Martins. There are more, but of course I can't name all. We have one pair of very "yellow" birds. They come in every year at the same time. They stay together, and usually only nest in a very thick "cedar" tree across the street. In fact, it is so "sticky" with sap, plus it has such pointed and scratchy leaves, that nothing wants to go into it, but them. I think they use that particular tree because cats, not even other birds will mess them there. We think they are a type of finch, but we find it odd that there seems to be only one pair, that come back each year. So, bird watching, we now look for the nests, and have found several nests that we've watched the little ones hatch, and how the "parents" train them and get them out of the nest within weeks. It is amazing.

I like to be able to "open up" my house and have the fresh smell of green grass just mowed, hear the birds, and just enjoy all of nature that I can soak up this time of year. I am still very much a "people" watcher, so I enjoy just watching people and see what they maybe buying or wearing this time of year. It is very interesting to see the things that others buy, and then "guess" as to watch they maybe doing or where they maybe going. When you see all of the ice chests, chips, charcoal, buns, cokes, beer and so forth, usually a picnic, a visit to one of our lakes in Texas, or on a vacation with their family.

This is also the time of the year, that I want to "rid and shed" my old self, and not just be able to put on summer clothes, but to take an "inventory" over my own home. I like to do away with things that I realize I have not used in a long time, or know for a fact just need to be done away with. As I have gotten a bit older, and as time has gone by with the chronic illnesses, pain, age part that I feel I am no longer able to take care of, like lots of knick-nacks around the house, some old clothes that we feel we just don't want to let go of, but to do an "inventory" of my home, and my life. Then I feel it is time to "spring/summer clean" out my closets, rest of the house; along with some of the "cobwebs in my mind", and from my body! Even though we always have that time of "closure" and "renewal" at the first of every New Year, to me spring and summer are also a time for renewal, to take out what we feel is "weighing" us down, and lighten up the load in our homes, minds and bodies.

I know that as I mentioned above, there are many things I used to love to do inside my home and outside, that I can no longer do, because of my chronic illnesses, joint issues, and so forth. But, I DO have MANY things I CAN still do, to take stock and move forward!

So, there are MANY things I love to do this time of year! I have to "pick and choose" now due to illnesses, and chronic pain. But, I still try my very best not to miss out on what I love the most, as I've written about above!

Happy Summer to ALL!!!









Wednesday, April 15, 2015

#HAWMC WEGO Health Writer's Challenge April 16th 2015 - "Life Goal" - Can you Achieve it ot possibly more than one -

The one goal that I've been working on now since I was about 15 years old, is to be an "author and writer" and have my books published.

That had been a goal that I had committed myself to, back then even as a teenager. I guess I really never gave myself a "time frame", but of course it is something that I want to do, and be able to see if what I write helps to make a difference in someones life.

Of course a "portion" of that goal I have already achieved. I had the honor to have not just one, but two of my books published in 2013. They came out about months from one another. Those were poetry and prose. And each time I hold one in my hand, I am so thrilled at the accomplishment I achieved.

Yet, the #1 goal even in the author and writers achievements, is to finally put all of my "life's journey" through the many things I have done, endured, and certainly will have a up close and personal look into my chronic illnesses and pain. I am working on that book, already have "named" it and got a "cover" for it done. I've gotten many of the chapters already completed, so I am on my way to hopefully completing this goal at the end of 2015 or early 2016. I just feel between my blogging, my activist, and advocacy role, and being an Ambassador, I am "giving of myself" exactly what I am supposed to be accomplishing. But, this book is what I hope to truly make others know for sure, they are not alone, they are not crazy, and all they experience it truly not "acceptable" as far as health goes, and we must try to move forward, to achieve victory over Chronic illnesses, such as "autoimmune diseases and others" and chronic pain.

I never fulfilled my greatest "desire" or goal that I had thought might happen very early in my life. That was to be a nurse. I also dreamed of being able to write my own songs, the lyrics, music, and sing them too. I knew a long time ago, I would never be the next "bright and shining" star of the music world, but I can dream about it.

Of course, I've had to "redo" my "course" several times when it comes to completing this 3rd book. I find myself taking on way too many other things that to me are very important. When I allow that to happen, then I have change my course, and get back on track of what I truly feel is the most important, which of course is this 3rd book. I have already decided there maybe yet another to follow it, and give more insight to things I dealt with in life.

        

WEGO Health Activist Writers Challenge!

 

#HAWMC - WEGO Writers Challenge April 15th 2015 - Get Excited!

I find myself seeming to come back to some of the same things I've blogged about over the past couple of weeks.

I know for awhile and I still somewhat still do is get excited about getting to try a different medication for the Lupus/RA. I say that because if I am "trying out" a new one, that means whatever has been going on is just not working. Thus the change in medications. It is kind of exciting and scary at the same time.

Actually when I read articles about the latest in biosimilars, or new research happening, possibly a clinical trial showing promise, all of those make me thrilled that there is a possibility of a complete remission, maybe a cure, or a way to "prevent" many of the autoimmune illnesses. I feel like once we find "why" the inflammatory processes, the body attacking itself, and if we are getting these diseases and illnesses due to a heredity factor, or our own environmental issues, then that will lead to find how to put many other diseases or complete remission. How exciting is it to think if this is something a child in the uterus is already predisposed to, and someday we can "fix" that before they are ever born, would be something extremely spectacular.

On a more personal level of excitement, I always come to the "casino" part of my life. I love the idea of making the reservations, deciding what to wear, and everything that I do to get ready to go (especially overnight), is such a wonderful feeling. Once I am completed prepared, that morning we are leaving, usually pretty early, that first few miles across town, getting on the I-45 interstate gives me a kind of "anxious excitement" in ways. I am already looking so forward to that "McDonald's" where we always grab a quick breakfast. I know when we reach that point, being at our destination is just a few miles away.

I've always found that when you are planning something, whether it be a trip, for a day or more, or you are going to some type of special event, thus the anticipation of that is a thrill to me. Being able to have an article in our local paper about my advocacy, activism and Ambassador status also just gives me a very nice and thrilling moment. I know as soon as I open our local paper, and my article on one of the first few pages, usually the 2nd page, I feel pride, I feel I am giving out to the public, information that is vital to them.

Even planning a day shopping trip out of town with my Mom is always fun. I get excited when I find terrific bargains, and can "clean up" on certain items, whether it be clothing or something for the house, I am thrilled when I see just how MUCH I've SAVED!



Tuesday, April 14, 2015

Sharing" Anothers Bloggers Post - and the Pain that we often fall short of talking about... that relentless endless, intractable PAIN

The link to the post is at :

https://www.creakyjoints.org/no-good-lessons-learned-hitting-ra-pains-rock-bottom/

It is from a "Creaky Joints" post...

RA pain’s rock bottom: NOT a ‘pain made me a better person’ story

 

and it is by: