Hobbies - #HAWMC - Wego Writers Challenge - April 21, 2015 (this is actually a day early for Wednesday the 22nd.

Over the years I've had many different types of "hobbies". I've always been on the "creative side", thus anything with an artistic or creative flare really suits me.

I learned how to crochet and do counted cross-stitch when I was in my early teens. I love to read books. I love to do all types of flower arrangements. You never know what I may come dragging in the house! From a piece of an old log, that I used to put flowers, ribbons and greenery on. I have 3 of them. I've done Christmas themes with them. I've also done Easter themes, and even one year did a "Shamrock Green" for St. Patty's day. I usually have some type of wicker broom, weather, or even some different very straight types of limbs from trees, that I've made sure are dried, wired those together, and put all types of decor on them. I always have one of those hanging on our front door.

I have oil painted, and was told years ago, I definitely had an "eye" for it. I've played the piano since I was about 7 years old, love to just mess around on the drums, keyboard, and even "write" lyrics and come up with the music for them. Of course writing is one of my all time, best loved, hobbies. It began also when I was quite young, and has been something I've done all my life, through every winding road, on a bus headed for Seattle, a plane headed for Washington DC or Vegas, on road trips, and I've been known to "scratch" down a few words to a poem on a piece of paper or a receipt while sitting at a red light.

I have a "huge" hobby, than really probably is not really considered one. But, it began as kind of a "hobby" for me. Then out of what I felt was necessity, being into research about all types of medical problems, from medications, to illnesses, to research over so many things that effect us on a physical level, along with usually a mental level also. Thus, as a hobby it began, yet now it is not only a hobby, that I absolutely love; it has helped me attain I feel some doctors that I trust, given me direction or suggestions when I need them, and also possibly helped some of my physicians to better understand my health issues at times, more than they do. After all, doctors as a whole, are all too often swamped with other patients, calls, pharmaceutical representatives, prescriptions, and the other 1,001 things they must do in the course of a week. So, I have watched a couple of my specialists truly be almost relieved that I do "have some understanding" of my conditions, so they can then decide of a course of action to take when it comes to treating me.

I am someone who loves to bake! I just absolutely love just about everything "sweet"! So, I am almost in "hobby heaven" when I am in the kitchen preparing for some awesome new recipe, for a new pie, cake, cookies, you name it. I love doing it.

I enjoy "people watching" at times. Not to be nosy, or like I want to say anything to them etc. But at times I find it very interesting the items people buy, whether at the market, large stores like "Wally World" or shopping malls. You can truly learn a great deal about someone by what they may have in their grocery cart,  or what kind of clothing they try on in a department store. Perhaps you are out for a stroll, or you are enjoying the outdoors. It is interesting to see what people are doing when they are outside. Are they exercising, playing with their kids, just having some quiet time, listening for nature in all of its glory. No matter where you are, where you go, people can be so totally amazing to watch.

I do like doing some like gardening. I have LOADS of "house plants". If I counted, I would say at least 80, maybe more. Believe me in the winter when they all have to be brought in, our small home looks like "jungle fever" has hit it. I love to be able to take a small plant, and after a bit of love, food and care, it can grow into something so beautiful. I used to love to mow, rake, do heavier gardening types of things, but now with my health issues, some of those things I am no longer able to do as well, if at all.

I am a "giant" DIY person... (do it yourself). Nothing thrills me more than to be able to "repair something", or fix something. My Mom never ceases to be amazed at all I can "do", "fix"... repair. The DIY is "almost" as good as me saving a HUGE amount on groceries, clothes or whatever it maybe. I NEVER and I mean NEVER EVER pay or will pay full price for anything. I am an avid coupon clipper and shopper. I've saved anywhere from 24% all the way up to 85% on certain things along the way. I watch for those "clearance" markdowns, with an additional amount off, and then all of the coupons I can use also. So, for me, "saving" a great amount of off something I really need or want, is a hobby for me. The MORE I save. the happier I am. Don't get me wrong, I am not the "Queen of Coupon-o-holics. I a not one of these buy 50 newspapers, or dumpster dive for them in recycle bins, but I do get mine of out my own newspaper, and then I frequently print MANY coupons. I also NEVER only in a very rare situation pay for "shipping". I always do and about 98% of the time, I do not pay any shipping. So, that is yet another almost hobby for me.

If I sat here and gave some "foggy brain thought" a bit more, I am sure I could come up with several more things I so enjoy doing and consider them hobbies.

A piece of why I do advocacy and activist, and volunteer work, is because they are kind of a hobby to me. Yet, I don't want to sound condescending when I say that. I guess what I really mean is from my first experiences of blogging, and getting into Facebook, then later finding out how much I would love to be a "voice" for others when it comes to illnesses, pain, and even other things in life... kind of back then, were a hobby of sorts. Since then it has turned into much more than a hobby. I feel it is truly a part of my life daily.

#HAWMC

WEGO Writers Challenge April 20th, 2015 - Reflection... Your ambitions, hopes and how things have came together for you - Reflection from Life, to Chronic Illness

Each of us, no matter whether we are an activist, voice, Ambassador, Volunteer, all have some set of "what we hope to help do, and what we feel we may gain from doing those particular activities.

Whether you give out lunches in your home town daily to the elderly, or you have a blog that is all about how you want to help others through horrendous illnesses, whether it be mental, physical, or emotional... for the most part, when do you any type of event that is "volunteering" it comes from within your heart and soul.

Most of us "expect nothing" back. We don't expect a "pay check". For many of us, notoriety, fame, being "patted" on the back is really nothing we feel is necessary. We "GIVE" because that is what we want to do. That simple act of "random kindness" gives us feeling enough inside knowing we did something "extra" for someone's day. Maybe that door you held open for someone behind you, helped them put a smile on their face, in the midst of a terrible day. That "E-card" to a friend who is ill, who maybe overwhelmed, who may be feeling like life is a bit too much, and their comes that special card, just when they need it the most.

So, reflection back on my life and all of my "volunteering" even when I was 13 years old and was the only "Candy Striper" at the hospital at that time. Those days there taught me so many valuable lessons about life, people, the medical field, and gave me a chance to give of myself freely.

From there, whether it be a shoulder to cry on, a friend needing a lift due to their car being on the blink, sharing a cup of coffee with someone upset, just telling the checker and the guy doing the sacking at the grocery store, "Thank You!" and that you appreciate their help.

I've had to "overcome" some issues when it comes to I guess you might call it "pride". Before I had all of the joint issues, surgeries, Lupus, RA, and so on, I usually took out my own baskets from the stores. It was just something I did, and of course many of our stores now don't even offer the service. Fortunately, our local grocery store that is here in Texas always offers the assistance, which is a good thing. I know for the elderly people it is a huge help, and when I am having issues with my back, or joints having had surgery, or just not feeling well. It truly does help to have someone take the basket out and put your groceries in the car. A great example for me just a couple of days ago. I noticed our market was really busy. They were trying to keep up with checking and getting the merchandise sacked. So, at first I told them, don't worry about it, I will just take it out myself this time. Well, I should have allowed them to. First of all, the way the parking lot is designed, you are on a slight slope as you come out of the store. Of course that makes it a bit easier to push the baskets. But, when I have a huge bill of items, or heavy items, that basket will try and "run away" from you outside. I had a gentleman that had his two young children with him, stop and help me hold the basket that day. I was so elated to see we still have some awesome people in this world. I commended him with a huge thank you, and I also commended him for having his two kids, and they were younger children with him at the store. Often times, you don't see as many men with their younger children especially at the store. So, it was just an all around "thanks" for everything I witnessed there within a few moments of this gentleman.

So, whether it maybe reflection on advocacy work, or having someone help you out when you least expect it, for me, my reflections are on those that do some wonderful things and their not expecting a "thank you" for it.

My "hopes" are that I also continue to "share" a helping hand or a thank you.  My goals are to become that "author and writer" of a book that truly will help others. Some of those things have suddenly within the last weeks came together.

Then there are many "detours" that come along, unexpected, that can delay all of those ambitions, hopes and what we feel we truly need to accomplish in our time here.

The chronic illnesses of course have all too often caused a delay in some of my goals, dreams and wishes. In fact, there are some of those things, that I may never be able to do again. At times that really bothers me. Yet, I also try and look back to remember when I DID do that thing, or I DID get to go to that concert, or vacation... or something as simple as now I am looking forward to being able to get away for a night, and have my Mom and I take a couple of hour trip to the Casino and possibly spend the night.

I also hope that my own health will hold out, so I can become a better advocate, activist and an Ambassador. I hope to be able to go back to Washington DC next March and once again "give voice" for ALL of us with these horrid arthritic illnesses.

I can also reflect on the facts that I feel I've "built" a very good repoire with the "non-profits" that I advocate for. Or really I should say I feel they have truly "taken me under their wing" and given me some amazing opportunities to be the advocate, activist, Ambassador and Volunteer that I want and will continue to want to be. So, I say a huge "Thank You" to all of those that are so incredible in the realms of health and helping others. 

#HAWMC

Writers Challenge Sponored by WEGO Health April 19th 2015 - IF You Could Travel to.... Where might that be & How to do deal Chronic Health and Travels

WEGO Health has really "hit the nail on the head" with their "prompts" for their April 2015 Writer's Challenge. It seems each one of them brings out things I may have not really written much about. Thus now I am getting new ideas, even for my own book I am working on.

Thus, if I could or already have been "anywhere" I travel to, or I've already been there, where would that be?

I have several "1st thoughts". I LOVED Seattle! The 5 years I spent there was better than fantastic. The city, the people, the food, all of the wonderful views, and spectacular places to go see and do things, it just seemed like the "panacea" of life I was looking for. It has been 10 years since I moved back to Texas, and I still miss Seattle.

Then there is portions of California that I truly loved. Lancaster/Palmdale CA were absolutely where I felt I should be. That was in 2001 that I drove myself all of those thousands of miles, only really "knowing" a couple of people. Yet, within days of being there, I had found a couple of dear friends, a place to live, a job, and felt that was my "home". Then Jim and I lived in San Pedro for a short while. I loved it there also. The weather was perfect, and it was also a beautiful place to be. Although I really miss Lancaster and Palmdale, now I know that is just not where I belonged, and neither was San Pedro.

We spent a week in Hollywood Florida! It was like paradise! I had so hoped the job Jim went to interview for, would pan out. We had found the house of all houses, that was about 3 minutes from the beach! It was also a place I could have seen me settling into. I could see a Sunday morning, $2.00 breakfast on the beach, with a Mango Frozen Daiquiri in my hand. Yet, again as much as I loved it, and I think it was more the unbelievable house we found, I just cannot say it would have been where I wanted to be.

I've now been to Washington DC! It was awesome, and I would definitely enough another visit, and hope to again pretty soon, but it's not my "home" either. Same for Pagosa Springs CO, and the "Wolf Creek Ski Lodge".... and I do wished I could go snow skiing again. Stupid body, has to be jointed "disjointed", with all of my replacements, knees, shoulder, and so on, that part of my life I've fondly had to give up also.

Now Las Vegas 0 Loved it and definitely will go back - hopefully soon. It was like "no other" place I had ever been. I just basked in the glow of "neon" signs, lights, sounds of the slots, and all of the great entertainment, huge Casino's, hotels, it is a place everyone should go to at least once in their life.

I've been on vacation in several different states, and of course all around Texas. I truly felt my "hometown" of Ennis TX (Home of the Bluebonnet Festival, Polka Festival, and the All Concrete Motorplex Drag Race Track, would never be my "stopping off" point in life. I guess life changes and we must "go with the flow" as the saying goes. It is not that I just despise this place. I am not really a huge "city" fan, and am more of a "small town" feel type of person. Yet, when I left on that bus in October 2001 headed for Seattle, I truly felt I would never reside" in Ennis again. At the time I had been through way too much "drama", gossip, not being able to "be me" I guess you could say. If I happened to wear a top and show my belly button ring, tongue ring or a tattoo, I was the "Queen of Debauchery". Thus, after leaving here, all of that melted away. I could show a tattoo, or wear a mini skirt, without feeling like I committed several small crimes at once.

So, now to the main question, if I could go anywhere, or had been already, where would that be? Well, I've never traveled abroad anywhere. I've not been "overseas" at all. I truly believe if I was able to go somewhere it would be somewhere such as Tuscany. Of course I am not sure if what I've seen on television and in the movies are a true look at somewhere like that. But, to see an incredible countryside, with lush green all around, and ride down a small cobblestone street, with the smell of fresh bread, beautiful flowers, and people taking life a bit slower would be where I would love to be, at least for a while. The look and feel of those huge Cathedrals, and buildings that have been standing for hundreds and hundreds of years, decorated ornately, and something such as a Castle that I could go to and look down over some incredibly beautiful country side and small town would truly be an inspiration for me. I feel I could go to some place such as that, and be inspired to write, to oil paint again, to play music when I could, and I honestly feel that my "body" might even partially "heal" itself. I know just changing your "destination" does not really mean you will be totally healthy again, but I do feel I would have a "better" me in some place such as that. So, through all of the places I've lived and visited, I would consider moving back to Seattle possibly.

Yet, my "dream month" destination, or possibly longer would be some small place in Tuscany. When I go and flip through the pictures doing a search, seeing all of the incredible buildings, cathedrals, artwork, everything just like it was pulled right out of a pictureest view, all of the statues created by those who have long passed away, yet their legacy lives on and on, within the halls and streets of such a magical place... As I said, just the idea of stepping into a scene such as that, almost melts the stress away, as I sit here writing about it.

I do have a few things that I've learned about travel now that I am plagued with this ridiculous autoimmune issues, especially about riding too long and so on.
Wear comfortable clothes, whether it be on a plane, train, bus or traveling by car. Don't set yourself up, where you MUST set for hours at a time. Try to pick a way to travel, and of course by car this is the best, where you can get out every once in a while, stretch your legs, back, and be able to move around. The longer many of us have to sit in one place, it gets to where it just hurts too much. Try to travel as "lightly" as possible. Gosh, when I was younger, I would pack my "entire closet" for a weekend! Now, I've learned to pair down a great deal, pick pants, a skirt, dress, jeans or whatever, but make sure you can interchange several tops, a belt, scarves, or something to be able to have one "outfit" that can be several depending on accessories. I LOVE HEELS! And I take them even when I may not wear them.  But, do your best to wear the most comfortable shoes you can have, and some that you can also interchange with outfits. Again, so you are not carrying around two suitcases full of shoes. Try and keep taking makeup, hair products, (now most hotels have hair dryers and ironing boards), so find out what they do have so you don't have to carry extra items. Find a way that you can do your makeup nicely, but fairly quickly. I tend to carry again every piece of make up product I have, and I am too overloaded and probably don't use it anyway. If you have medications, always have them in their bottles, labeled, and if it is something you must keep refrigerated, be sure to ask for a fridge, or make sure you can get one if staying at a hotel, and also like my medication came with a freezer bag to freeze the solution in, and put my medication in there. It will last a good deal of time, then you can re-freeze it when you get to your destination. I know many guys are not for "stopping" if they are driving on a vacation and so forth. But, just put your foot down, whether a spouse, friend or whomever, and take those bathroom breaks, coffee, soft drink, eating breaks. Don't overdo as I said above being confined for way too long and not getting out if at all possible. Tag luggage well. Plus, if you do have "joint problems" and are flying. Request a wheelchair with an attendant to help you through the maze at the airport. Last year I took that suggestion when I flew to D.C! That was the best thing I could have done. I never would have made it all alone, with luggage etc and walking myself. Having that wheelchair really saved my life. Don't be embarrassed, I decided not to be. I would do it again, if I travel by plane.

#HAWMC - WEGO Health Writer's Challenge!

Stress Awareness Month - WEGO Health #HAWMC Writer's Challenge April 19th 2015

Definitely a great question for ALL of us that have to contend with a stressed filled, everywhere you look and feel world! Daily stress producing items are all around us. Whether you are "chronically ill or in chronic pain" or not, the news and medical world tells us that our daily stress levels are off the charts. This also means that stress effects us in so many different ways, especially when it comes to your physical and mental health.

Then you take all of that into consideration, jobs, families, travel, homes, cars, kids, and just what we see in the news daily, is enough to cause us an insurmountable bunch of stress. We have known for years that stress contributes to heart problems, it definitely effects our immune systems, allowing things that normally not make us ill, to sometimes makes us more ill than we think.

Now let's add in doctors visits, 15 or more medications a day, feeling overwhelmed already, yet due to chronic illness and the pain that comes along with it, the stress levels can be way over the top of the glass, and pouring down all around us in a puddle. Just having to deal with a drive to a doctor in Dallas, maybe two in a weeks time. Making sure all of my medications are filled properly, and with me so I don't miss any. Not feeling well some days, either with some type of "flare"; whether Rheumatoid Arthritis, Lupus, Sjogren's, and the list continues. Add those onto trying to keep a job, do errands, take care of a home, a yard, a car, buy groceries and prepare meals, do laundry, and all of the 1001 things that can pop up at any moment, to distract us from what else we are doing. Then our bodies all too often "revolt". So, now I am dealing with a huge amount of fatigue, severe headaches, my hips and lower back hurting, perhaps like last week for me, having the procedure done on Thursday - even though a "good procedure" to hopefully help reduce the horrid pain in my lower back, hips and legs, was still "stress". So I get up on Friday, with bright pink cheeks, feeling like a train had run over me, seeing everything piling up I need to do, and guess what, here is a flare. I would "assume" a Lupus flare, due to the pink hot cheeks and nose. That all too familiar "Lupus "The Wolf" Mask" we get when one of those comes on

So, I've spent over a week at doctors offices, having that procedure done, then coming home to know I am behind on everything. Now I feel lousy, the weather brings on a new set of stress on it own, and I now have a very low potassium situation they discovered last week when I had the Transforminal Epidural Steroid Injection done in my lumbar spine. My potassium was at an "dangerous" low. Most of the time at what mine was, and they even checked it twice, I probably should be getting IV Potassium to try and get it back up a bit, then follow up with pills. But, I didn't hear from my PCP even after calling at 9:00 A< Friday. So, I followed up with my Cardiologist, who immediately called in a script, told me to take two of them for two days, then one a day, and come in on next Friday so they can check the levels again.

Now, after all that being said, "How do I, did I, deal with all of the stress"? My first way to "deal" with stress is "listing" and writing down, what is "MOST" important to get done quickly, and what may be able to wait a day or two? That helps me a great deal, to literally "write down" a list, and prioritize things. Then I take stock in how I feel mentally and physically. If I am feeling very lousy, then I know I need to do absolutely what has to be done, and save others for later, when I feel better.

From there, I allow "time for me". Even though my to do list might be long, I still need to be able to either go outside, and do my walking. I enjoy baking. So, for me going into the kitchen and making a pie, cake, cookies, or whatever I feel like I might enjoy baking, I do that. There are days, that I may have to do one or two things, then sit down at the computer and write, or take an hour to watch a movie with my two pups. I also very often find if I go over to my Mom's, and just spend some times away, where I can talk, and "gripe" if I want to, Being able to express my stress is critical. If I can't write it down, or say it, or find some type of avenue to be able to "purge" some of the bad stress, then I really find myself unable to get much of anything done. I am too wrapped up in what I CAN'T, thus what I can does not come to me, when I don't just take that walk, talk to my Mom, write on my book, or post on my blog. Summer as I had mentioned in another blog post earlier in the week, tends to help. I can open up my home, and let the fresh air in, get some light streaming in, and I have a "renewed" feeling, that tends to be a great deal stress free.

Being ill with so many of these diseases, syndromes, and such do add a HUGE amount of stress in my life, but my husband, Mom, and others can "feel" that tension in the air. So, between all of us we try to keep me in check with stress. It may mean a day trip to Oklahoma and the Casino. Which in saying that, we are LONG overdue to go. It has been several months, possibly about 4 or more months since Mom and I made that 2 hour journey into "freedom" for a few hours at least.

Just a day trip away from it all, is an incredible way for me to get back to the matters at hand daily, and lead my body and brain into a new perspective.

Writing has always, and will always be one of my biggest ways, that I can "purge" out the stress, remain half sane hopefully, and try to carry on up that "mountain" always reaching out to attain a goal.

#HAWMC

"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!!!

#HAWMC - WEGO Writer's Challenge!

#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.

        

#HAWMC

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!

WEGO Writers Challenge for April 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: 

Kat Macfarlane

 

 I was so truly amazed with this woman's "honesty" about this type of pain. As I "crawl" through some of the exact same pain with my hips and lower back, and legs, I just want to scream, cry, shout, cuss, say everything my head is thinking, yet not want to offend anyone. So, I don't walk outside and shout, dammit the hell I HURT!! WHY Can't this just go away??? Why the hell do I have to live day after freaking day like this...... and so on... it is MUCH MORE Obscene is my mind for sure...

Dealing with Chronic Diseases and Chronic Pain that seems to steal your entire life...

Sometimes I feel as if I write the same old song and dance, over and over again. Yet, as I was glancing as some email newsletters I get, once again for the Thousandth time, there it is in my face, talking about not being able to travel "too far away from home", or how these illnesses take you so far down in fatigue that the simplest things you used to be able to do, now are like monumental achievements.

I always try and bring myself back to "Okay, it could be worse"?! Well, what does that mean for any given person... worse as far as I am not in the bed 24/7/365? Worse that right now I am "well enough" to not be on the sofa for many hours of the day? Worse as in, I can still walk without a cane or a walker, I still have my eyesight, I still can talk, and okay all of that "same old stuff". Worse as in, gosh there are so many others out there that have it "worse"? That is dependent on who is viewing it, at any given time. For one person that might mean a "bad" day or two.
For others it may mean they had to cut a vacation down and come home a day early, or cancel dinner plans for an evening, or decide to order take out because they were too fatigued to cook. I've "entered" a couple of different items for this month. One is sponsored by the Sjogren's Foundation, due to April being Sjogren's Awareness Month. Each day we must think of "ONE" word to describe "Sjogren's". The other sponsored by WEGO Health, is April is "Writer's Challenge Month". Each day they give us a "prompt" and we are to write about how that particular thing effects us. Some medical and some just life as it is stuff.

Over the past 8 or so years, once all of the autoimmune issues came to light, I had high hopes that with a more "specific" diagnosis (or more than one) between the doctors, myself, medications, and taking care of "me" would mean finding a much better quality of life in my future. Now, each day, I come to terms with the pure and simple truth. Unless something miraculous happens in the thorns and arrows slung at all of us with these hideous illnesses, I nor anyone will ever find they have a "better quality of life." I think we "fool" ourselves into thinking, "we must remain focused on the good, on the "half full" rather than half empty glass. We must think that against all odds, look how many others have out smarted all types of "basically deadly" diseases, and are here to witness to us that it can and does happen.

Yet, me putting on that happy face, yet inside deep inside both hips it is like a ball of fire inside, churning, aching, burning, and how do I "ignore" that kind of pain? Then I find out last night, and I mean very late evening, that after waiting 2 weeks to see my orthopedic doctor who has done both knee replacements, and much more now does NOT take my insurance? And the woman on the phone was an absolute witch. When I began to ask about me paying for the visit, she snapped back at me, an office visit is "$175.00"! Well, in the first place they should have KNOWN right away, and in fact when I called and made the appointment, she even looked at my file and saw that I had the insurance and never uttered a word that he was no longer taking it! Well, that leaves me in a world of hurt, now over 2 weeks. If they had told me that in the very beginning, I could have either tried to find another orthopedic doctor, OR just paid cash for the visit and the injections.

I was still so totally upset by the entire ordeal, that I called his office again this morning and spoke with HIS nurse/office manager. She told me the "visit" for me since I am an established patient is $75.00, then the injections are $100.00 each. So, the lady from the entire doctors building didn't know the circumstances, and didn't realize I had been seeing him for many years. I can also say that if I had been able to get hold of him, he would have charged me less, and did the injections. Him and I have been through several situations involving my own self, and then a surgery he did on my Mom, so he is well aware that when I ask something or say something, then it is something I am extremely concerned about.

Then you take this new stupid insurance, which means if I see another specialist that I've not seen in a long while, then we have to go back to square 1 and get a "referral" done to satisfy the insurance company. Fortunately my neck and shoulder orthopedic surgeon IS taking the insurance!!! So, even though I have to wait another week, which sucks because today is more than pain, hurt, despair... almost intractable pain in my very lower back and especially my hips, that even higher on my waistline hurts, at least I can see someone I know and trust. He has a "jackass" bedside manner. But, if you overlook that, he is EXCELLENT or more than that, THE VERY, VERY BEST Orthopedic Surgeon in the US, as far as I am concerned.

When I was first sent to him due to needing a complete reverse shoulder replacement, of which not many specialists do them, we kind of got off on the wrong foot. He is one that prefers an "less educated" person, as far as their medical situation. He is not thrilled over someone like myself, that comes in, with all of my own home work done, and knowing just about what the issue is with me, then telling him. He is not very happy about a "patient" that he feels thinks "they know" more than he does. Of course I don't BUT, when it comes to myself, my own surgeries, illnesses, and all I've been through in many ways, I am almost an "expert" in some things with my own stuff.  Well, when I went in and seen him for the shoulder, gave him the "low down" on the entire mess I had been through, where the pain way, how many other "scoped" surgeries I had, and in the last my other orthopedic surgeon told me that there was "nothing else" their to repair. The next step HAD to be a "reverse shoulder replacement". And it took weeks and weeks to find one. Then same with my neck. Right after the shoulder surgery, within 3 months I began to have once again a "similar" issues with my shoulder blade. As I again had done, researched it all, and the pain "seemed" to be coming from my cervical spine. Well, he did a special CT on it, since I can't have MRI's, and that CT was terrible. The tech that did it, was not in the right place to do business, and he really was NOT elated at all. He "went off " on me, stating just because I do research online, does not make me an expert, and he really got pissed about my "input". So, I am not sure what happened, but within a week or so, he decided my "theory" maybe right. Since my other orthopedic problems never do "show" on CT's, MRI's... whatever kind of "scan" they do, it is always MUCH WORSE in that joint, than what it showed. So, that was my continued premise. He decided that I could be right, thus he set up to have me on the operating table, and do a 4 level disectomy, and also fusion to at least two of them.

Well, as sure as I am writing this, for the most part, what I had "said" and drawn in my own conclusions, were almost to the "letter" when he opened up the neck and began to see the issues. That is why I say, he is an excellent physician, one of the very best in orthopedics, yet his bedside manner sucks... and once I could look past that, and HE could ACCEPT that in some ways I COULD BE correct, it worked out fine.

Thus, having to wait yet another over a week to get some relief sucks.On top of everything else, I am not so sure about this "forminal" lumbar injection that is supposed to be done Thursday. Now I found out, it is not the "anesthesia that they concern themselves with, as far as the patient driving home. It is the epidural injections in themselves. In that part of the spine, it may make my legs feel a bit "heavy" or numb a bit after its done. Not everyone has that, but some do. Thus the reason not to go alone. But, when you have no one else to drive you, what the hell do you do? Forget it? I mean Mom and Jim both can go, but when it comes to driving, that will be me. Neither of them cam drive to Dallas and back.

So, now I also know this orthopedic doctor could also do those injections too. So, do I hold off, and then have then done later by him...


These are the very examples of why life deems itself much, much more frustrating and difficult when you are suffering from chronic illnesses and/or pain... ALL of it is a "PAIN" in one way or the other....