"RA" is not a "serious" of a medical issue as before? Really!?

https://creakyjoints.org[mycred_affiliate_link]

The REALLY sad truth from this story, and from others, is that "some" people actually believe this. If we are not limping and carrying a cane, or in a wheelchair, have a walker or even go out in the public looking "half decent" with makeup on and your hair not a mess. The very first thing I hear is WOW, you must be better!" Better from When? Really? Better from when I was almost screaming in pain earlier today with my back and hips? From 2 weeks ago, when I just didn't feel well enough to "dress up with my makeup"? The other sad fact, and I know it to be true... if you are ill, in pain, especially chronic pain, and you are seeing your doctor, at times I have went in, maybe deciding not to look so horrible... so I do put a bit of color on my cheeks and a swipe or two of mascara... you can almost bet the doctor does NOT take you as seriously as they do when you walk, crawl, or come in looking like the "death has been warmed over".... not all of them, but I have seen it more times than not... so, especially if I am going in for something like chronic or new pain, bad enough I am willing to do just about anything to get rid of it.... I sure as heck don't go "looking" okay. I don't put makeup on (I don't usually feel like it anyway)... but I realized years ago, you as a whole may not be taken as being in that much pain, if you are not wincing and in tears.... also MEN are taken much more seriously, as a whole when they go into the doctors office, especially with pain, than women. We, as women have seen it, been there, done it, bought the shirt, jacket and book... Men have it much simpler. As a whole, they go in and tell their physician the issues at hand, and usually they will get the treatment they need. At times women must jump over hoops, and hope for the best. It is better than it used to be, but how many of us have been told... you are too emotional, you think about it too much, maybe it is hormones, are you stressed, maybe you just overdid lawn work, or have you been out and about shopping to much?? Those are just a few.... So, when this story came to me via email, I knew I needed to share it. I will also put this up on my blog..

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