WEGO Health Day 10 - Bloggers Challenge - Writing a post (question) about my condition and then "answering it"

DAY 10 WEGO HEALTH BLOGGERS CHALLENGE

Question:

Dr. "Rheumy" If I do more exercises than I've been doing, although I do walk, ride my inside walker/skier, eat more apples, lose 10 pounds, start getting up 30 minutes early and do Yoga, then stay up 30minutes later, and use a calming essential oil, that has citrus, Tangerine oil, Patchouli oil, & Chamomile Blue Light oil in it...oh and for the "brain fog" I use first thing a"Mental Clarity" Essential Oil, with Sweet Basil Oil, Peppermint Oil, Geranium Oil, Jasmine Oil, and follow what I've read exactly for a "diet" that "clears" the autoimmune system, of RA and Lupus, do you feel this will in fact "clear out" my immune issues, and give me back all of my strength, power, brain power, forceful way through life, be able to snow ski, take 3 or 4 week vacations, and be back to my old self within 6 months?

Answer:

As the "doctor" Dr. Rheumy tries not to laugh, or choke while not laughing, then would look me in the eyes as a patient, and at first say, those things are "good" for your overall health and well being. They definitely may give you "more days" that are with less fatigue, but, even with "all" of that work, that is what it could turn into, MORE Work, than your body at this point can stand. Which in turn could "weaken" your autoimmune system. You are already exercising, eating healthy, your weight is fine, and you are taking the medications prescribed for you. "Getting up earlier" and going to bed "later" although to do some "positive" may cause you to have less sleep which also effect your all over health, especially your immune system, that is "weakened". I KNOW there are some VERY excellent blogs, articles, even physicians, experts, and those online who want only to "help" others just like you. Yet, "some of those things" are not sometimes helpful but could cause more harm if mixed in with your regular medications. The essential oils are something you could diffuse and may give you some relaxation and then clarity and focus, or used in a bath, and apples are great for you always, most all types of fruit, and Yoga can help with "training" possibly the brain to not "feel so much pain" or give you more focus and calmness. YET, I along with every specialist, Regular physicians, experts, researchers, ALL will tell you, as of now, there is NO CURE FOR Rheumatoid Arthritis, nor Lupus or any other of the autoimmune illnesses. We have came a very long way with medications that can help the symptoms, and possibly "slow down" the rate your body is effected by these. But, no one at this moment has found a cure. I can ASSURE YOU that YOU AND ALL OF MY PATIENTS WILL BE THE 1ST TO KNOW, and come in FOR THAT CURE, WHEN THAT HAPPENS! That will be a joyful day for hundreds of thousands of patients just like yourself.

I "hope" I've helped clear up some things, as well as give you an idea of "what may" give you a bit of relief, or a tiny less fatigue, or even "more" better days than bad ones.

By the way, keep on "researching" online, BUT make sure you ask myself or your PCP BEFORE you were to try anything out there. There could be some people that want to "harm" more than do good.

#HAWMC

Day 9 - "Happy Hump Day" WEGO Health Blog Challenge - "What would be my "perfect" Day"?

First answer, going to the Casino... to stay overnight and get away from ALL of the illness, medications, cleaning, stress, loss of my Mom, and the grief from dealing with all that comes along with having to take care of everything after losing a parent or loved one. Being the "caretaker" before, while and after they are ill, and then pass away.

OF course that is a "1st" answer and it is extremely true, when it comes to wishing for the "perfect day" for myself right now. When "you" are chronically ill, chronically in pain, and most days you never know if you shall wake up feeling "good", "bad", horrible, or even on those rare occasions "WONDERFUL"; you hope for more of those wonderful days.

That does not mean ones that give me the time to go to the Casino for an overnight stay necessarily, but those or at least one or two, that give me the ability to get up, with pain and illness that is as less as possible. A day that the sun is shining, the weather is not to warm or not too cool, that day I can clean my home, go run errands, go to the market, maybe make a great meal, even in the slow cooker, play with my pups, have time to go outside, trim a few limbs from my trees, tend to my yard a bit, and even at the end of that day, not feel as if a "tractor trailer" had ran over me.

Yet, for many of us, we realize that "good" day, that leads us to be able to do those small or large things we want to do, shall probably lead to the next few days of being in pain, not feeling well, and having to "recover" from that one or two days we felt well enough to go out and feel "normal" for a bit of time.

For me, that is a perfect day. Those that come, where I get up, not as in much pain, not so fatigued, and I do feel like taking a shower, dressing up, putting on my makeup, fixing my hair, and going out to do errands, shop, wash my car, and not look "sick". It seems those days are rare. Oh, the shower, and running errands I do, but to really "feel" like dressing up, putting on makeup, getting my hair looking really nice, and then putting that "smile" on, and not looking worn out are the ones that are so far and few between.

At times, I feel that is why maybe I find myself slipping back or shying away from taking that overnight trip away. I may feel wonderful while I am out and about, wherever, Casino, shopping, yard work or whatever, because I realize that more times than not, I will "pay" for that 1 or 2 great days.

A day, two, three, a week, weeks, months.... most of us would give a great deal that we had, if not everything we had just to have a "normal' day, week, month, or year. Without being ill, without needing surgery, without needing many medications, without pain, and time we can spend with family, friends, on a job, in our home, just to "feel well" for a brief and wishfully a "lifetime" of not being chronically ill, or in chronic pain. 

Alas, since yesterday was an "election day" of a "first" ever for this nation or the world for that matter, "FREEDOM" is what I and ALL that are ill wished for a day, that is perfect 'FREEDOM FROM THE GRIEF OF CHRONICALLY BEING ILL AND IN PAIN".

#HAWMC

Strange Emotions, Being Physically Ill again, and something "odd" come over me at my Mom's house....

I just don't feel like speaking about the election, other than the fact I am glad it is over, I did my part and voted, and I pray somehow our country gets united and turned around in the right direction. We need that badly, more than the "battles" that were fought this past 18 months or so. I will say I've been really SICK AGAIN... I've had those cold, horrible sweats, so badly, I had to change all of the bedding, my clothes, and wash everything two or three times since Sunday night. I've not really been able to get off the sofa other than to make myself get up and change, since I was freezing, yet soaking wet from cold sweating, and I've had another one of those horrid headaches, that I just almost feel like nothing I try is working. I did run some fever off and on, but mainly severe, severe joint, muscle and body pain from head to toe, that "feeling" again like my joints wanted to "lock up" almost as if I was having a seizure... but as far as I know, I've done this now about 4 times or so and I don't think it is any type of seizure, it just feels that way, due to the muscle spasms and severity of pain in my joints, muscles and body. I had been really busy for the week or two before this started Sunday night. I got rid of that old loveseat recliner, by taking it apart like I had said earlier, and then I decided to move my television to the front windows and I turned the sofa around where it faces the front windows. I am going to get rid of the rug I have now.... and get a much smaller one that is round, where it does not sit under the sofa at all. 

Then after I see if that helps to stop the dogs from acting out, and peeing on the rug, if it is not under the sofa, and now the loveseat is gone, then I may by a new sofa, smaller and one that had no material close to the floor. Anyway, I had to move two huge glass cases around, that were each beside my television, and I spent the good part of a week, dusting, washing all of my glass things I had in there, and making things free of dust and the collection of that "gray powder" that seems to seep into all of our homes in this part of TX. I still have some things to go, and then I also redone my bedroom some, trying to get ready to bring my HUGE plants in... it is time to "de-bug" them, and get ready to put them in from the cold coming soon. 

They are all houseplants, but they LOVE the outside all spring and summer, so they really go into shock for a couple of weeks or more when I have to bring them in... my fern, my palm (which put 4 huge prawns on it, one of which is still not tall enough yet, but two of them now are at least 7 foot tall!, Then my ginger plant inside is at least that tall, and getting bigger everyday. My fern is about 15 feet around, and then I have several of the airplane plants that are also HUGE, and heavy... so it is a job in itself to get them all cleaned up, and then get them in the house.... It takes me days to clean each one, and then find room enough to put them... but right now I am just trying to get to feeling well enough to even take a shower, so I can get to the market... I need to go, but I am still in such pain, and so totally exhausted from whatever the heck is going on with me, I am not really feeling like even trying to get in the shower, and I know I NEED TO! Anyway, I wanted to touch base, and let everyone know what is going on here.. I know there are a couple of people I know that are also battling some bad illnesses, and like me facing surgeries possibly. 

I know that is one issue causing me pain, and possibly making me feel so bad... the stiff neck and severe headaches and back, hip and pain down my legs are all probably from needing the neck and lumbar back surgeries... I wanted to get those done, but it never seems like a "good time" to schedule them... and now here come the holidays and everyone will be busy with those...so I am not sure what the hell to do... I am still waiting to find out about what is going to go on with the other house... I had a very "strange" issue over there Sunday afternoon... I don't want to go into details, but for the very 1st time, when I just drove up into the drive, I had the "oddest" feelings, and then I almost could not "go inside".... I don't know why, I've not felt that way before, and even going and having to put some paperwork in the car, I felt the strangest sensation just sitting in that car.... I am supposed to drive it after I turn my Prius in in early 2017, but now I am not sure I "can drive" that car.... not due to the condition of it etc... it is in awesome shape, just needs tires, but there is something about the house and the car that really gave me a very odd feeling, and I still had "chills" up and down my spine as I drove away Sunday afternoon.. I've been too ill to go over as I usually do to check on it, since then, but something really came over me, that I had not felt before..... just really has shaken me up, plus I had a really horrible night terror on last Friday night, that was the worst in years.... I was so upset, I was not sure I could even stay alone anymore, I was so shaken by it.... alas, I have not much of a choice, me and the two furkids.... but anyway... I am still feeling "off" mentally and then physically still feeling not well either....

WEGO Health Blogger Challenge 2016 for Day 8 "I think I I can" OR "I Know I CAN".....

WEGO Bloggers Challenge Day * 2016 - "I Think I Can OR "I know I Can?"

I "think" I can get over the "hump" of losing my Mom so suddenly, and find a renewed life ahead of me - I need to give myself more time.

I think I can get my home fixed up and it be everything I want it to be.

I think I can get back into my writing and blogging, and make my 3rd BOOK a "Best Seller".

I think I can finally face my cervical neck surgery, and my lumbar surgery and they will relieve more of my pain.

I think I can walk through this life, even with all of the medical issues that surround me, and continue to find people that care about me, I think I can find new friends, and move past all of the loss, of not just Mom, but the loss of a relationship, find understanding, the loss of my dear Tazzy, my Pug, who I still miss daily, and move past the emotional pain that continues to dwell within and make me feel as if all I've seen in life is loss.

I think I can do MUCH of the "renovations" to my home, myself, and then "face the facts" there are some things now, my body no longer will allow me to do.

I think I can become a much better activist, advocate, volunteer and "voice" for those who suffer from such horrendous chronic illnesses and pain.

I think I can live my life alone, with my pups, and find the place where I no longer feel "alone or abandoned".

I think I can continue to make great decisions about my future, and continue the path of knowing more about medical research, chronic ailments, and give others hope through my own research and going through what I have been through. 

"I Know I Can!"

I KNOW I can go back to Washington DC one day, and give Congress once again my own life's issues with chronic illness, chronic pain, and how many of us suffer horrendously, and make A DIFFERENCE!

I know I can find more time to write, to work on my painting, my quilting, my gardening, and be able to get on the path, of feeling good about myself again.

I know I can LOVE, my Kids, Grand kids, and family even more every day. I know I can show them that they are my entire world. 

I know I can get these two pups to QUIT peeing in the floor when they are upset with me!

I KNOW I can continue to make this journey through life by myself, take care of myself physically, mentally and emotionally, and gain more insight to myself in the process.

I KNOW I CAN STOP having HORRIBLE NIGHT TERRORS!

I know that although sometimes others do not say it, they are proud of my "charity" works, and I will learn that I DO NOT have to have a pat on the back from anyone else but myself.

I KNOW I CAN GET THE HECK WELL! I AM SICK AGAIN!

 

I know I now can face my own "day of reckoning" when that time comes, whether soon, or decades from now, and I am NOT frightened. 

#HAWMC

https://www.facebook.com/wegohealth/

Monday's seem to "hit" everyone in some type of lousy way, no matter who, where, when or why it is what it is.... & throwing our Circadian Clocks OFF

Well, between Monday's usual errands etc, I think I finally got caught up on my WEGO Health Bloggers Month Long Challenge! I am still NOT feeling all that well. I know part of my problems with feeling lousy is because I have "overdone" it and probably WAY overdone than I care to admit. I've thrown out old furniture, moved furniture, cleaned, dusted, been trying to get a couple more of my "inside" windows not stuck anymore. I have "storm windows", but before they put them on, I did not get a chance to really make sure the inside old windows were not painted shut, or just plain stuck because of the age of the home. So, it has taken me several months in all to get about 11 or 12 that I can open up the inside windows and then get to the storm windows and open them when the weather is nice, and get inside, in between those also... I have one very, very STUBBORN ONE over my kitchen sink. I finally was hurting so badly I sprayed it down with WD-40 and left it last night. I've not tried it yet today. 

We have really wet, dreary, weather so the wood is also swollen which makes it harder to work with. Then I spent an hour or more yesterday trying to get the small "cracks" sealed up on my front storm door. I had some of the rubber put on the bottom, but it was not really long enough, so I put a new strip on that has the longer rubber on it. Then I had to put one on the outside, plus put a piece on the side where the screen latches. This house has settled so badly, that it also why I have issues with these windows. It needs to be leveled, BUT THE COST OF HAVING THIS HOUSE LEVELED NOW PROBABLY RUNS ABOUT $15,000.00! It was about $10M when we checked on it years ago. They have to get under it, pour concrete posts, then take out the old creosote posts that are under there then try and shim and level it up. It sucks also because this house happens to be on ground that has room to get under it on one side, and then the other is very, very low to the ground. It would be a nightmare.... it was not a true "peer and beam" but just more like the "beams" under it. 

There is SO much that needs to be done to the house, that it makes my head hurt and spin just thinking about the cost of some of those things, like the foundation, and a new fence in the back, that requires cutting down trees MY NEIGHBOR NEVER CUT DOWN WHEN HE PROMISED HE WOULD AFTER TAKING A BUILDING DOWN THAT WAS ON THE PROPERTY LINE, TO BUILD A BIG HONKIN' GARAGE THAT IS LARGER THAN MY OR THEIR HOUSE, AND LEFT THE TREES, ONE HUGE AND ROTTEN. Half of it is laying in my back yard.... and that expense is astronomical to have someone cut down those trees. Some of them are small enough I can get rid of most of them, but about 3 or 4 someone would have to come in with a chainsaw to get them down. As MANY things as I STILL DO, ANYTHING TO DO WITH A CHAINSAW is where I DRAW THE LINE! I do okay with my "pole trimmer/cutter" and most everything else, but the "saw zsaw" and any kind of chain saw I know I would never be able to handle. I've lost so much strength in my arms, hands, wrists, especially my right one, and my fingers, thumb and hand is so swollen it almost kills me to sit and type. BUT, I make myself, so I hope that they don't get even worse, which I need to go back to my Rheumy. 

The MTX is NOT WORKING. and in fact I stopped taking it as of today. I was taking it once weekly on Monday, but I decided it was not worth it, since it's not doing a thing for the RA. It is much worse in my hands, fingers, thumbs, and now my neck, and lumbar spine and hips are just "on fire" they hurt so badly. So, I hope we will try Xeljanz next, but I am not liking my Rheumy's NP at all. She is wishy washy and said that was what she would do last time I was there, and then went back to the MTX after my Rheumy had stopped it a year or more ago, at that time due to me having so many infections.  I NEED the cervical neck and lumbar spine surgery..

A great deal of my pain I feel is due to my spinal issues. But, there are times just like when Mom became so ill, I had to put off having those surgeries, because she needed me during those months. I could not have helped her, had I went ahead with cervical neck surgery, and/or lumbar sacral surgery. So, we do what we can do in life, and at times that means putting up with some unpleasant times, and things. Hopefully making the "sweeter" pieces all that much better!

WEGO Health Bloggers/Writer's Challenge 2016 - Day 7 - How I chose to start my Advocacy Work & How I felt when I made that decision

Day 7 - WEGO HEALTH Blogger/Writer's Challenge 2016

"How I Chose to become an "Advocate" & How I felt about that decision"

I had really already been a "voice" in many ways well before I was diagnosed with RA, Lupus and Sjogren's. Before those came into play, I suffered with Migraine's from the time I was 17 years old.

I was also wanting to be in the medical field almost all my life in some way. Early in life, my thoughts were on becoming a nurse. As time went by, I married, had my son, then a few years later, remarried, and had my daughter, the idea of going to school full time in order to become a nurse was almost impossible. I was mainly the "bread winner" of my home, and my paycheck really needed to be there in order to pay for the house, car, and for all that my children needed as they got older. 

I had a chance when the kids were around early teen years to go to Nursing School full time and it be completely paid for by the hospital I was working at, in the Business Office. I did pass #1 on the Exam to get in, but then it was the "money" issues, of me having my paycheck completely cut out for at least two years, that made me have to decline going to college full time. Although I took classes at night and got my Associate Degree in more of a business light, the medical field has always been in my "blood". 

I seemed to "absorb" all things "medical" in nature. After being formally "diagnosed" first with MCTD, then soon that changed into Lupus, RA, DDD, DJD, Raynaud's "Hyper-joint mobility", Sjogren's and that list grew on, I then "knew" first of all, the Heart Attack I had at 40 years old, had to have something to do with the RA and Lupus. Although when I was 40, I was the "picture of health" ate properly, exercised daily, watched every type of food I ate, was the exact weight I should be, yes, I had a heart attack. At the time the doctors said the huge amount of stress I was under had caused it, which I am sure played a role, but I was SURE back then, that my Migraines, joints issues, that had already caused me to have several major joint surgeries, plus other things in my health that just did not add up, yet not one doctor took me "seriously" for another 10 years or MORE, before I finally got the diagnosis of "autoimmune disorders". Thus at 50, I suffered another heart attack. 

Now, back to my advocacy work. I was already writing a book about my "health issues". The doctors that had been great, and those that treated me like I was some "air-headed, over anxious blonde" because as we have come to find out "Chronic Pain and Illness can often be UNSEEN by others in our lives - Invisible to those around us, even physicians". 

Back then women were also kind of considered "off the wall", depressed, anxious, stressed and that ALL of their "illnesses" were basically psychosomatic, rather than being looked upon as most men were. A man walks into the ER or doctor's office complaining and they are taken seriously. Back then and still it happens, woman can do the same, and we get the answer YOU need a "shrink"... this has changed for the better and does not happen as much, but back then most women were just "crazy", when they complained, especially of pain. 

So, when I became interested in finding out how I could get MY voice heard, other than my writing, I turned to Facebook to do some research. I also began doing searches on the different illnesses, diseases and syndromes, and came to find out there was an entire realm of "advocacy" places, where the PATIENT'S VOICE was CRUCIAL!

No longer was it just the professionals that were hailed upon for answers, but us, those that suffered with these diseases had a voice in groups, by jointing some of the organizations, and even going right up to Washington DC (which I had long said I wanted to stand at the White House Steps and TELL MY STORY) ... and I came to find out, that is exactly what patients were doing! That the Arthritis Foundation, WEGO Health, the Lupus Foundation, the IFAA, and so many other of the non-profits were "enlisting" us, everyday, regular patients to tell our stories, and move those that could help us by money for research, by giving people access to clinical trials, helping to get our voices to the experts, thus that is what I did.

I dove in head first, to a couple of organizations, and I was excited, thrilled, terrified, star-struck, and scared all at the same time! When I was able to attend the Arthritis Foundation's "Capitol Hill's Annual Summit" and DID GET TO tell my story to some of the Congressional men and women, I truly felt that I had accomplished a greatness. That is when I also wanted to tell everyone else, that they TOO, right from their home and computer, can also make their voices heard. They are important, and crucial to making the diseases stand out, where we can get answers, get proper diagnosis', get the care, medications and specialists we need in order to survive all of the horrid illnesses, we've had to endure for much too long.

#HAWMC

Day 6 - "Superpower Sunday?" #HAWMC - WEGO's Monthly 2016 Blog/Writers Challenge! What kind of "SUPERPOWER" would I have & How I would use it?

Superpower Sunday! WEGO Health - Day 6 of the Monthly Blog/Writer Challenge! 

What kind of "Superpower" would I have and how would I use it?

Great Question, and one I had to give thought to. If I was able to have some type of superpower, first of all, I would want it to be something that could help ALL who are chronically ill, in chronic pain, and especially in some realm where I could help "diagnose" what was wrong and have the ability to fix it, or possibly stop it before it even happened.

So, I guess I would want the ability to see "behind" as far as years, decades and so forth, plus be able to see ahead in the decades and years to come. In that sight, I would want the ability to "look" at someone, or touch someone and know immediately they were ill, before any symptoms really arose. Then I would want to be able to put together what their future and their past looks like, even forward to their grand kids and all of their relatives ahead, along with all of their years before they were born, and find if their were "issues medically" that they had no clue existed. 

I would want to be able to "see" within my mind's eye, what was coming "medically" in the future, and take that to what had been gathered in the past, such as Penicillin, or the place where the "gene" for a certain type of breast cancer was found, and put that data together to help stop severe medical problems we as humans have, and event some way to "stop" those events before they were even known to exist. I know this sounds like more than "one" superpower, but it is mainly having the ability to "see" ahead and "behind", to correlate that information so "chronic illnesses" such as Diabetes, Cancer, Lupus, Rheumatoid Arthritis, AIDS, "genetic" illnesses that begin in "utero" long before they can be "seen", and the diseases that are to come in the future, able to "halt" their progress well before they are ever in fruition to exist within humans. 

I basically would want to be a "super doctor, medical research expert" and "fix" what is wrong well before it happens, as well as "heal" those who have already been in the "grip" of some of our horrid illnesses that strike down so many thousands and thousands annually.

#HAWMC