Hoping a better 2018! Lupus flare, RA flare, Flu virus, Chronic Pain severity, epidemic, wishing for a better year than since 2014 wanting to get back to writing, blogging and advocacy work

Putting "hopefully" my writing, posting, advocacy and writing areas of my life back in the forefront. The past two years, really more like since late 2014, seem to have been a nightmare. 

I've had good things happen, but losing two of my fur-babies, my Mom getting ill so quickly and passing away in 6 months, losing my Mom's "baby" sister, losing my marriage and not sure why yet, having a pain pump replaced, having a fractured hip and spending Christmas 2016 in the hospital and inpatient rehab, the a very complicated neck surgery in April 2017 that took me months to just get out of a hard collar with, and now my Lupus and RA are really giving me heck... much more but those are a few of the "highlights" that really put my several years previously in a spot where I felt I would NEVER be able to get back to my advocacy, activism, writing, blogging, posting... and the things I want and love to do... And I am still going through stuff health wise, my neck is really hurting again, and has been, but my shoulder as I say below, that has already had a complicated replacement began acting up, right after the last neck surgery. We have changed RA medications trying to get the RA flares under control, and my lower back and legs really beginning to bother me again...

I am not sure if the ridiculous weather we are having is a huge factor, but generally the WEATHER has always had a huge impact on me, when it comes to chronic pain, and migraines.... way before I could ever get a physician to "agree" with me, I KNEW the weather effected my severe migraines when they were so bad for over 20 years of my early life. 

Now all doctors and health professionals agree that the weather, temperature, humidity, erratic weather, cold one day, hot the next, all of those things and the barametric pressure have sometimes severe effects on many illnesses, especially chronic pain...

I ASK that each of you the "follow me" here, on my daily newspaper, through Facebook, Twitter or wherever to keep me in your thoughts and prayers as the year progresses. I REALLY want to get back to those things such as my writing and blogging... more on the advocacy side, but even sitting here at the computer puts me in such pain at times, there are days it hurts to sit, stand, walk, lie, no matter what I do, it is severe on some days, and here lately MORE days than not....

BELOW is a POST from my Facebook page, where I had been commenting to a friend of mine who is going though some frightening issues with her liver, and her Diabetes. So, as I posted this, I wanted to "add" it here also... my numbers honestly here on my blog have fallen so much, and I know the holidays effects that, but also me not able to post as much, put up as much relevant information as I usually do... I desperately need to update the look and feel... I know it's getting outdated, and it is a matter of having the time to do those things, and those are what I really want to be able to work on....

I APPRECIATE those like yourself, that give back the feeling that "I matter"... I try my best to let others know I do appreciate each one of you that take time to even give a "thumbs up" I realize not all of us have time, or feel like Posting, but I always know someone "cares" by just a heart, a thumbs up, or a "face".... you too I realize have been through so much. I have to "say something" about a "comment" I read the other day. Some one made a comment that Facebook is NOT THE PLACE to "post your personal problems"????? WHY would we "want to connect here at all" if we were not looking for others either like ourselves that "need that extra push up" every once in a while, or to "see" we are NOT alone in this come and when I "post" personal issues, which health is very personal I think, 

I am NOT looking for an answer or someone to totally agree with me, or what, it is MY way, like my blogging and writing (partially)... the social media is a way to connect for many reasons, but since I have "no really close family or friends physically that I can "see" ) my son and daughter are about the only "close family" I have left, and my daughter is 8 hours away and we talk probably at least 3 or 4 times a week, but she cannot just "drop her kids, family and husband" to run 8 hours up here, and although my son lives close by, he has his own things also, he has been fighting with "FM" now for a long while, so he is trying to re-educate himself, by some short classes, where he can do certain jobs, that the ones he used to do, due to the FM he no longer can do, lots of very hard physical labor... even though he is 37, age as many of us know with some of these horrid illnesses, syndromes, chronic pain issues and so forth, AGE has nothing to do with it.... so he sends me messages, and if I NEED him, he could be with me quickly, and we keep up with each other, 

BUT he also knows ME, I really 'don't want" the feeling that I have to have someone doing everything for me. I LIKE doing all that I CAN DO myself... and it is hard for me to even ask for help, because all the years I did everything, from hanging ceiling fans, to painting, any kind of home improvement just about, the lawn, and so many things I've loved to do, I KNOW that even since my cervical neck surgery last April, I have "overdone" some stuff. I PRAY my neck is not messed up again, or my right shoulder, that ever since the neck surgery, it is the RIGHT ONE that has already been totally replaced by a "reverse total shoulder replacement" about 6 years ago, I think, but it has given me hell ever since the last neck surgery... of course I realize 'some things" I had been doing I've had to "stop" and either let my son do it, or my neighbors help some, or I just let it go, knowing it can wait, other than an emergency thing at the house, some things that I just could NOT stand to "let go" I've had to and I am STILL learning to "let them go"... but being alone with the pups now, I do as many things as I feel like, or that I can do, if possible.... yet trying to learn to say "no" I can't, or sit down and say I just hurt too badly today, etc... those are very hard things for many of us to do... not in our "genetic makeup" :)

After "many" strange" symptoms, DO I ADD yet "another diagnosis" to me endless list of crap wrong with me??? "CPRS"????

I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange that add into the mix of it all... I was telling my friends on Facebook about the ordeal and one lady mentioned that I should be seen by a Neurologist who specializes in "CPRS"???? Complex Regional Pain Syndrome! I look it up and guess what, MANY of my weird symptoms "fit the bill" - I am just about ready to scream and run, I am so fed up with health problems and the "list" is endless.....


 I had not even thought about that. could it be caused by a very severe sprain? Actually I've had three sprains in that right ankle. The 1st one when I was 40... I had just gotten home after my 1st heart attack, and went toget out of the bed. That foot was "so asleep" I didn't realize it, so when I stepped up I twisted the hell out of it, and it was bad. In fact I had to make a trip to the ER thinking it may have been fractured. Then about 5 years later I stepped crooked on it, when the wind blew me out of a car door at a store here. I was dressed for work, and had went into a store at lunch. The wind was terrible, and when I opened the car door, the wind caught the door and made me twist it again. 

Then in 2016, the day before Mom's funeral in June, I stepped off my front porch, talking on the phone to my daughter, and my neighbor had called to me, and the grass was so wet with dew, both feet came out from under me, and I sprained both, but the right one was bad again. It was so swollen it looked like I had a softball on it. I had to wait, and that Monday after her funeral, went to have it X-rayed at Urgent Care. It was not fractured, but I pulled it again so badly, for 6 months it continued to swell. It was really after I fell fractured the right hip, and then early last year, I went to a foot specialist. He put an injection of corticosteroid in it, and I went for PT about 3 weeks. It went down and "seemed" fine, after that injection. Then last week, I went to the market, and when I got home I noticed my sock I had a bad indention in that foot and ankle.

 I didn't think much of it until then I noticed this week every time I am up on it, or sit at the computer, with it down, it swells terribly again. And I've noticed it hurting now, yesterday it was huge again when I went to Urgent Care about the Lupus and RA flares. I hoped the injection of corticosteroid for those would help reduce the inflammation, thinking that the Lupus, RA and just the very bitter cold weather, that was swelling my fingers and other joints may have caused it again to swell after it being so injured. 

But it never dawned on me, other than I was fearful my "heart" may be causing it to swell. When I had my 1st heart attack, for about 8 weeks before I had it, every day my ankles both of them would swell horribly. That was when I was in "great shape" watched my weight, exercised daily, and never thought I would have a heart attack, yet I did on Jan 8th 2001! So anytime unless I've sprained them etc it worries me that my heart could be acting up, but I've just had an echocardiogram, and a check up with my heart doctor about 3 months ago or less... 

so between knowing it is so damaged from the sprains, and the RA and Lupus, it will swell and hurt, especially with such very cold weather... my fingers, and every joint feels "swollen" and stiff and hurt like hell. So, last night I took one of the Metoprolol's that is for the "extra beat" of my heart. I had slacked down taking them daily because my doctor felt that they were causing me to have a very slow heart rate. In fact we talked about putting a pacemaker in, so I could take the medication and not have to worry over the heart rate problems. Then I will be damned I had one of the damned very cold, wet night sweats!!! Those are the reason I had cut down on the Metoprolol anyway. 

IF my heart rate gets too low at night, we feel my body compensates, by one of those horrid, cold, drenching night sweats, I was wrapped up all night in a heavy robe, and blanket, because then I get so cold after that sweat, I shiver all night, and I feel so bad, I can't even get up to change my clothes, I am just so cold, it just almost hurts to get up and have to change... I swear I thought 2018 would be "better" and it sure has not started off very well for me... I think I am just freaking cursed....


Strange enough, when I look it up, much of those symptoms are true... for one my "OTHER LEG" from the knee down has hurt now for about 10 days, it wakes me up at night, but it is in the other leg from the knee down into that ankle! Also, it looks so purple, but I thought it was spider veins, I suddenly have them in both ankles, and I've asked before because up until I sprained them, I didn't have those terrible ugly looking things, but that ankle and foot looks purple especially when it swells or I have problems with it... 

it has been injured badly twice... and it will even give way with me at times if I am not very careful with it... the "sudden" swelling was strange to me... unless it has just been swelling due to the Lupus and RA... 

so I guess even my Rheumatologist may not really be able to tell me, nor really the foot and ankle specialist... that does seems and I've heard of it of course due to Barby Ingle and many others that have the problem, I just didn't put two and two together thinking that could be what is going on with the ankle in itself... but now that you have said something, and I read the "symptoms" I am wondering if it may be something else like that  and I will definitely check on it. I see my PCP who was the one who diagnosed my Lupus and RA. He really knows a great deal about "other problems" such as something like this... he is a younger doctor and he is very well educated in other illnesses, syndromes, and things that some PCP may not know much about. Plus if I talk to him, he will know of a Neurologist who could look at me and see.

What is even stranger about this, is that suddenly also i about the past two weeks, I've had severe problems with my left arm, from the elbow down to my wrist and fingers. It wakes me up every night, swollen, and throbbing and like it's "asleep" with that pins and needles type of pain. It did it again last night, along with everything else, needless to say I was up since about 2AM, between everything hurting, the night sweat mess, and such I got up and turned on the television again, and said to heck with it... 

and of course I also have the "autoimmune issues" which I knew often go along with "CPRS" again I guess out of everything, I never put this together with the other problems and symptoms. Of course my first thought it dammit, I DON"T NEED ANYMORE FREAKING HEALTH ISSUES!!!! So, if this is the case then I just "chalk up" one more to the never ending damned list of crap wrong with me... again I feel totally "cursed"!!!!!!!


And here is one link talking about CPRS....  https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet

When a very "Special" Opportunity Arrives be sure to take the steps to help someone....

Happy New Year and the beginning of a very COLD 2018 to MOST of the nation!

I had an amazing opportunity this week. One that I never expected to happen, but the way it did, and how it did, brought tears of joy to my eyes.

Many of you know, that I am divorced. Albeit, WE thought we would be "old and rocking" together in a swing on our front porch, for many reasons, some I feel are senseless and we should still be together, but it takes TWO.

Anyway, my ex husband has a daughter. He has not seen or even known where she was for over 30 years. The last time he saw her, she was about 2 years old. He was young, the Mom was young, and it was just not meant to be at the time. But, things happened, that really should never have, and the Mom caused a great harm to a Dad and daughter, that I hope after all these years, that some of those precious days can be gained back.

I got a private message on Facebook in fact on Tuesday. I "immediately" recognized the name. In fact I had helped "search for her" for years, trying to help him get in touch with her. Once she was over 18 years old, he felt she "may" want to know him, or maybe not. But, he definitely wanted a chance for them to find one another, and see how the other felt. All the while recently she had been doing the same, but it never "aligned" until it so happened that "my name" associated with his, and some of my friends on Facebook were her friends also.

I got the message asking me if I was married to this man. I said that "yes" we were married for almost 10 years and together almost 13. But, things changed and he is now back in the Seattle area. Of course I already knew who she was, but I did ask. It still blows me away how people's paths can cross, when you least expect it.

For one, I will admit, he left, and I honestly never understood, WHY, he didn't stay because he still was in love with me, and him I.. yet he battles with thinking that if a couple "has a disagreement" then something is wrong with the relationship. He came from a very "not just broken" but completely "battlefield" of a home, where the Father was an abuser, and the Mother either mentally unstable, or caught up in some really horrid things and people. In fact she died when he was only about 9 years old. His Dad had been dead for 3 YEARS before he found out! Like I said this was a battlefield of a wrecked home.

Here is the main "scoop" to my post.....

I have a wonderful story to tell and this was just incredible for this to happen right at the brand New Year! Someone reached out to me, that thought I "may know" from the searches the person done online. They found my name along with someone's name and reached out to me on private messenger here yesterday. I KNEW immediately who this person was, and that actually who they was looking for had been searching a very long time to find them also.

So, I of course said yes I know them, and yes I can contact them. I told them that they had been searching for a long while and in fact several years ago, I helped someone search for this exact person. So, I made a couple of phone calls, and the two that had not been in contact with one another for something like 30 years almost, "connected" yesterday. Both had been so concerned that the other would not want anything to do with them, but it was just the opposite, they both had been looking for each other. 

So, I got a beautiful message from them yesterday evening, telling me that they were so very appreciative of me finding out and helping to get them together after all these years. It is "close family" so when anyone is searching for a very close family member that they had "lost touch" with and had been searching, hoping and wishing it would someday happen, yesterday that miracle unfolded right in front of me. So, even if "my New Year" sucks, what happened yesterday was the BEST New Years blessing I could ever hope for. I realize all too often now, some get so caught up in their own situation, that they may not take the time and effort to do something like this, but of course it was never in my nature to not reach out and try to help. I am so totally blessed, and I now also "found" another person who I also was wanting to find for a long time also....

"2018!" HOPE for better health, less pain, yet it's not beginning very well, Lupus, RA flares possible & weather is literally I believe reeking havoc with me!

Praying for RELIEF, from Lupus, RA, Chronic Pain, and trying to remain hopeful that being in pain does NOT keep me from doing the things I want to do for 2018

The weather here like many places has been down right bitter cold! We were in the teens' night before and last night, at 17 this morning when I first got up. Fortunately, so far there has been no falling precipitation, or it may have been really bad here. I know I've heard the ambulances etc going out off and on now for days, I am sure many people ill, or get too cold etc. I am having a very difficult time "coping" with everything. I've so wanted 2018 to begin with new things to do, to accomplish, and pray that pain and illness don't plague me. Yet, I've been suffering with a severe headache off and on now for really 2 weeks, and when the weather got so cold, I believe every bone in my body hurts. I "may have a Lupus and/or RA" flare.

I feel like after they took me off the Methotrexate, that keeps the other medications from working as well. We did it due to me having infections so much back a good while ago, and now that seems to be somewhat "better" BUT the pain has been so horrible, almost unbearable, and for me to say that, and I am talking about over and above all of my medications, the pain pump and so forth. I FEAR going to the doctor's, one fear is that my neck could be messed up again. If I were to go to Urgent Care they could give me an injection of a corticosteroid along with a 14 day supply of a huge dose of prednisone, and if it is the Lupus and/or RA, then that would definitely help the pain, stiffness and inflammation.

Then I've had hell with my left elbow for a long while. In fact the Orthopedic Surgeon who did my knee replacements etc, told me several years ago that my left elbow really needed another surgery on it. Well, he injected it and it went a long while without giving me hell. But in the summer when I was doing all of the windows, getting them open (the old windows that someone painted shut inside) so I could open windows when the days were nice, plus I can clean them better, and be able to paint them etc... and it took a couple of weeks, but I got all but about 3 in the house that so far I've not been able to get open. One of them has a crack in it, so I didn't want to be messing with it, I JUST put in the one glass pane that the hail broke out, 2 or 3 years ago!

But, I have a couple more than NOW since I know I can actually do them myself, when the weather warms up I want to replace any that are cracked. Many of them have the initial glass that was put in them in 1950 when the house was built, so the glass is very brittle, after so many years... anyway, I had surgery on the left elbow in about 1998 or so. In fact, Dr. Roye who had just began practicing in Waxahachie, did the surgery. He fixed the elbow and had also done work on my left shoulder. But, the elbow has kind of like pins or screws in it, and they have always "poked" out so you can see them.

But, they had been right "above" the upper part of my elbow, and I accidentally was working on one of those windows and it was very loose, rather than so tight as most of them. I knew I had to prop it open in order to do what I needed to do, so it would not come crashing down on my fingers... I had placed a piece of board under it, but I was trying to get a screen in where that storm window had been used for an A/C unit. When it went out and I got the new one I moved it out of that window and wanted to put the screen back in it... but it is harder to do than you think, the way that screen has to go high up, then slide down into that window is difficult when you are having to go under the old inside window. Well, I started to put the screen in and try to get it up high enough to go into the window, but you also have to push on the outside of the storm window in order to get the screen to go in correctly. So, I knocked that darned board down and down went that heavy wooden window right down on that elbow where those screws are...

once that happened I was in so much pain, plus the screws actually MOVED down towards the bottom of my elbow than where they had been... well of course the hip fracture, then the neck surgery etc. and although the elbow pops now and then, it really has not hurt that much. Up until the past about 4 or 5 nights... it wakes me up every morning about 2AM from my elbow down to my fingers "numb" yet "on fire".... like it has fallen asleep so badly, and now as it "wakes" up that PAIN that comes with it! At first I thought it was my wrist because I have carpal tunnel, and I had the right hand fixed, but other things came up so I left the left one alone.... but I know it is not "just" my wrist down, and actually starts right above the elbow and radiates down into my thumbs and two sometimes 3 fingers on the thumb side. I believe I have Cubital tunnel syndrome which it what I think I had when it was repaired in the late 90's....

and after hitting those screws and it was already giving me problems, I feel that really did a number on it.... BUT, then for 2 nights beside HORRIBLE NIGHTMARES. I am woke up by my left LEG from my knee down with a very deep terrible ache! Bad enough it woke me up again last night. I got up took some meds and laid back down, but by 4AM I was up with the both of them hurting again.... What truly irks me about all of it, is that I've prayed and prayed to just have "time" to not be in so much pain, to not have horrible health issues, so I CAN BLOG, WRITE, AND DO SOME THINGS I WANT TO DO! IF between not sleeping due to severe pain, and then the weather really making it worse, and maybe some type of a flare, I hate to being griping but I pray the rest of 2018 is not like the 1st couple of days have been. I am almost embarrassed to "whine" about these things but damned it's just so hard to live with and not be able to talk to anyone about it....

May The New Year of 2018, bring a renewed peace, better health, less stress, added hope, and a feeling of "life worth living" to all....

My hopes are that everyone had a wonderful Christmas holiday, and everyone got to where they needed to be both going and coming, without delays from weather, illness or anything else...
I also bid you a very Precious and Special 2018! My heart has hope, that we find Tranquility, A Faith to withstand and to triumph over evil and those who wish harm upon others. May there be a LIGHT that adds warmth to your soul, and may we all find the beauty in all things....

I realize that MANY of us had yet again, a "terrible" 2017, whether it be family, loss, health, jobs, finances, or "harm" from others, most of us will try and find that renewal of faith come midnight 2017/2018...

Wishing each and every one of you a SAFE, HAPPY, and GRAND New Year! My hopes and prayers are that WE as a person, as families, as friends, as workers, and as a state and nation find more hope, more peace, less stress, and a brand new outlook on our lives. 

I "try" to always find "hope" deep down inside this time of year. I am not "one" to have a "New Years Resolution" list, but a I usually have a "few things" down that I might like to "try" if I haven't done it before, "OR" change an old habit, find a new friend, or a new hobby, pray that my health gets no worse, and wish for peace most of all, in these times of trials, tribulations and suffering we see or hear about almost daily... May we be blessed with a New Outlook...

Wishing you much in blessings, hope, strength, better health, family, friends, jobs and so much more....

Wishing You and Yours a Beautiful, Peace filled, loving, and blessed Christmas, and May 2018 bring much needed "good events" to us all!!!

I realize MANY MANY of us have been "touched" by severe weather, threats from those who wish to harm us, Mother Nature's wrath, from fires, to hurricanes to tornado's... people that "abuse" others, and just now after MANY years they have the "courage and voice" to speak out...
So, as you gather around friends, family, the table, food, trees, gifts and more... Remember to keep "HOPE" Alive and burning brightly in your heart, say a prayer for those less fortunate, even though many of us are on that "list" of misfortunes also... hold your head high, and don't allow others to take over your life... PRAY that somehow the WORLD finds "PEACE" and always hold onto those you love and let them know everyday that you do...

Many blessings I wish for all of you and again hoping that the New Year of 2018, brings much goodness to us all!!!! Below is a "montage of photo's of myself, my daughter and her family, my 3 Grandkids, and my 2 Fur-Babies Bella Doxie and Peanut!