Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts

Tuesday, June 13, 2023

Chaos, Life, Love, Chronic Illnesses, and Chronic Pain...

Unless you have never used a computer; the internet, IP address... you couldn’t possibly not know how much people GAIN online. Friendships, long lasting relationships, new friends ...yes there are the "rotten ones" who try and screw things you do for people enjoying here or wherever life takes you.

It’s been nothing but, chaos, still in wars, spending budget of a TRILLION DOLLARS Ridiculous! THEN WE allow them to pull these stunts that are driving our good doctors to retire or not see certain Patients.

Due to the DEA and all on FDA, ALL of Congress & House of Reps, for legitimate chronic pain patients of all kinds. Ruining our lives, having no close person who has gone through this.THIS HORRIBLE, at times out of control pain is causing people with extreme pain, to find another opportunity or mode to help with the chronic pain.

I am so totally disgusted with ALL of our supposedly voted officials. They sure haven’t

HEARD THE PEOPLE! We are supposed to have many FREEDOMS!  Yet the government has a say over it one way or the other .I feel the ENTIRE FEDERAL GOVERNMENT need to removed ad we need SMART AND HONEST in D.C.

We; as a nation with all of these highly intelligent people in our 50 states; we could have the best…of the best. PEOPLE NEED THEIR FREEDOMS BACK!

It’s asinine what goes on in the Medical Community. What is so much more disturbing is just HOW deep along are just the the governments untold stories, the lies, the corruption, taking rights away of the people…..

It’s like an earthquake not showing at 1st. It’s the RUMBLINGS we Hear. THIS is ALL of our governmental  bodies. They are rumbling and soon huge fractures will divide many of us. I almost fear (not in my lifetime) another “civil war”…people are getting fed up. 

I’ve seen it, walked through it, bogged down in it, done it, regretted it, been there …literally wrote two published books and I’m working on a couple of new ones. If I look I probably have a T-shirt with it, journals full are filled and over flowing..I’ve been so bowled over; with you & it’s like the rushing water pouring over a waterfall….. fresh, pure, true.

I’ve not touched in this writing piece about my health issues, nor any other personal issues. I DO  and WILL share my journey…

It is long and tedious. It’s time taken away, surgeries, doctors, medications, side effects,  and everything in between.

Chronically Ill people generally have some type of “chronic pain issue” also. They tend to work hand in hand. It began for me when I was about 14 years old. I had my right knee torn up playing baseball with some friends. One kid used me instead of 2nd base. He slid into my leg and tore the cartilage in my knee. I had already had a tonsillectomy when I was about 11 years old.

As I work on finishing my “autobiography” it includes ILLNESS, HEALTH and so forth. It also WILL POUR out what else has happened to me even before the health issues. I have a “hole” in me…I have “scars” I can talk about now…

I’ve been so frightened at 14 years old that I couldn’t even tell my Dad. In fact, I couldn’t go to my Mom at first. I went to our next door neighbor. She was a nurse and like a “2nd Mom” to me.

I won’t go into details here; but I am sure although we didn’t have the term “PTSD”; that is certainly what I had.

Life has ebbed and flowed; it has almost drowned me, tormented me and ‘brings me down to my knees” …sobbing inconsolably. I have stood upon the top of one of the highest peaks in Colorado. I jumped what seemed like “STRAIGHT DOWN” from atop that mountain into snow over head deep if you ever lost a ski or lost your footing.  Those ‘double black diamonds” slopes were THE best! What a rush!

I never had one thought about packing up and moving to Austin, to California… I loved driving trips! I would get in my car, and drive half way from Seattle to Lancaster CA. I have a dear friend there. In fact I lived there about 4 months.

I drove from Phoenix AZ to Nebraska! I thought the drive from Nebraska to just South of Dallas Texas would be endless. There was literally nothing for miles and miles to see. Flat land, no houses, no place to buy anything. I felt like the world just maybe flat and I missed Texas somewhere the drive was so long.

Anyone who has never been to Texas…or you have not driven through Texas, it is one HUGE state. From North to South down to Brownsville and at the Mexico border is a days drive!

Already had 2 major knee surgeries before I was 22 years old. I also already had “signs” of osteoarthritis. Back then the doctors said it was an “old” person’s illness; young people don’t have arthritis. LITTLE did they know then.

I lived my life “bass ackwards” When I was a teenager I was at home, with my music, my writing, dancing, piano and I didn’t do what “normal” teenagers did. My Dad was extremely overprotective. When I was single; in my early twenties, I acted like a teenager. It really continued throughout my entire life. At times I do stuff most grown ups would be what the hell is she thinking? I have to laugh.   ahh…I shall continue……

I have a “soft spot” for others hurting. Whether it is a physical pain, emotional, mental anguish, or someone just needing to “vent” I am always “listening”, “watching” and paying close attention. After some of the things I waded through; my whole purpose I feel is to help others. 

I understand how it feels to NEED someone to just ”listen” let me ramble..and I am over it. You shall see me REALLY get a bit (more than a bit)  peeved when I feel there is an injustice happening to a person or a group of people.

It RIPS my soul to see someone mistreated. As many wonderful people there still are in this world; there are also MANY that have total disregard for others. You will see me come unglued at times; because I just cannot stand the thought of anyone being harmed in any form. 

I wear my heart on my sleeve. I cry much more than I admit. I am so soft hearted; I sometimes “forget” how cruel some people can be. That includes some Doctors and others working in the Medical field. I’ve certainly went through my share of doctors that should remember their “code”.. DO NO HARM! 

I have one that is who did my cervical neck surgery and he did my reverse shoulder replacement well before anyone else in the Dallas/Ft. Worth area. He is an incredible surgeon. But he lacks having a good bedside manner. He also does not like an “educated” patient. He and I got into it over a CT Scan of my neck before my 2nd cervical neck surgery. 

I said something about the CT Scan NOT showing as much damage as was in my cervical spine. He asked me if I was a “Radiologist”! I said “NO” but I know my body. Plus, every time I have ever had a CT Scan before a surgery, when they do surgery the doctors come out and say things were much worse than the CT Scans. He upset me so badly I got up, walked out sobbing. 

After he did the surgery, he came after I woke up and apologized to me. He admitted I was correct. I know he really did NOT want to admit I was right. But, he did. Of course, I am not an expert. I realize that many of us with “chronic health issues and/or chronic pain KNOW how we feel. We also have educated ourselves. We must watch out for ourselves the way things are now.

Everything is so much different than even 10 years ago. I used to go to one doctor who took care of most anything. I am fortunate to have an incredible Primary Care Physician.  I became his patient (one of the first) when he first arrived here. He is brilliant. He knows more about Lupus, RA, and ALL of my other health issues. I can send him a message through the portal and if he is in the office, I have an answer that day. 

Friday, November 11, 2022

How do you Hide the Scars, External and Internal, fight the fears of Showing What Life, Love & Illness has done to you

 It's been a while since I've been able to think about what I needed to say here. After my last what I thought was the Love of my life, walked out and the "checked out" leaving me here to wonder why; to pick up the pieces of my own broken heart, soul, and try to face the fear of even leaving my house to allow anyone to see "me" like this.

I've been "broken" before.... by illness, by others walking out without reason, for trying to survive. So many call me "brave", a survivor. Yet, they don't see the scars, on my body, but worse those on my heart, soul and mind. These days the fear fueled by not only my own illnesses that more than once damned near killed me, but then COVID-19 ONLY FUELED that reasoning for hiding, for staying at home, for hiding behind the mask literally. I am much to scared and scarred to allow anyone in again.

 I am too frightened of what someone may do if they see what the heck I truly look like now. So many surgeries, scars from the past and now even present.  But, moreover the internal pain, fear, and scars that are deep seeded in my mind. What I SEE when I gaze into the mirror, what shadow of a slight person looks back at me. Just when one thing seems to get better, suddenly something else appears. All too often doctors can't explain what I have. They can't give me a reason or rhyme for what suddenly appears out of the black ink darkness of chronic illnesses. They don't know, often WE as patients know more about why, what, and how we find ourselves ill with something else 

So much of me can be explained by music, by lyrics, my about the only thing that motivates me anymore.  I know I am NOT alone. So MANY of us from all over the USA and the world suffer, are driven to so many doctors, medications and yet we find no answers. Only more questions. 

As Keith Urban's Lyrics, "What if I Fall, What if I Cry, And if I get scared, and WHO is my "Fighter"... nowadays my only "Fighter" is myself. 

Saturday, December 15, 2018

2019 - "Doing What YOU LOVE", dishes, laundry can wait, friends passing away, & making sure life does not pass you by...

Great "Lessons" from an awesome writer... I am giving thought to also "rewriting" my two published poetry books.  I want to make them "shorter" and have 4 or 5 "shorter" poetry books. And within those, add some of my Dad's "sayings" that I have here. I had thought I would write a book of his sayings all on its own, but I think it would be more interesting to "add them" into the poetry books.

As I do that, I "hope" to get myself motivated to get up off the sofa at 3 or 4AM every morning and rather than cook, bake, clean, do laundry etc... take that "early" time of quiet and try and put use to it by getting back into where I've just left off with my writing. After all that happened, with Jim's accident, all of my surgeries and illnesses, then Mom becoming ill and passing away so suddenly, then me falling within 6 months fracturing my hip in two places, losing two of my fur-babies in between all of that, and all of the "other crap" of life, I've kind of been "lost" from the things that I loved to do,... the writing, the painting, yet also my "body" at times won't allow me to sit long enough to write (type) and just the 1001 things that tend to interfere... and 'sound like excuses"... and maybe some are, but also, it's very difficult as many of you know to go through "harrowing" issues, and try to do what you love to do... so as the new year is upon us and I've given thought to just how quickly life has flown by. All of the wonderful memories of my own childhood, my Grandparents house with my Aunts and Uncles, cousins... all of that seems like it was just yesterday.

We were in Elementary school, with programs, and the wonderful times that our lives were "simple"... we didn't have to be concerned about getting "harmed" at school, or someone taking us for all kinds of horrible reasons... we could ride our bikes, I rode mine all over town by the time I was about 14 or so, never gave a thought about someone running over us. We could go out to eat, to the Mall, to the movies, out at night to ball games, we didn't have to "worry", things were simpler.... so, now just what seems such a few shorts year later and life is ANYTHING BUT SIMPLE, EVEN FOR OUR OWN KIDS!

So, before I blink again, and I can't see (my eyesight is really getting bad the double vision seems to get worse by the month), or I can't type, or hell half the time I can't keep my thoughts straight now at times... i should "do what I love"... take the time to not worry over the leaves in the back yard, or a tree limb hanging too low... or the roof of my house looking like it "may leak" when for now it's not... so as I enter hopefully a new phase of living, I hope you also find that spot to say, " I'm going to do something I LOVE", and that load of laundry can wait till tomorrow......

Thursday, November 22, 2018

Happy Thanksgiving to You and Your Family and Friends - "Open Enrollment" falls during the holidays.... Decisions to make...

Global Healthy Living Foundation 

Here is a great URL and information for your Guide to Open Enrollment brought to you by the "Global Healthy Living Foundation".....

Along with Wishing you all a Peaceful, Family and/or Friends, Laughing, Eating, Making New Memories, and Recalling the ones past... May you have safe travels if you are traveling about, may there be harmony around the nation & world, and may the Thankfulness in your Heart be filled and overflowing... Whether you are in a room full celebrating, or like myself, at home with my two "fur-babies" Bella and Peanut, having our own small "family" Thanksgiving, may you find the blessings wherever the days take you....

Be Safe, Take Care, and Find Something to Feel Proud for, Thankful For, and to feel Gratitude for during the holidays and reaching into the upcoming New Year....


Saturday, October 27, 2018

Colonoscopy and Endoscopy - Just another procedure to put us through....n Life with Chronic Pain, RA, Lupus & chronic illness

Going through the Ordeal to get Ready for an Endoscopy and Colonoscopy!

Also Barrett's which I have and my Anemia is getting worse every 3 months, and my Parathyroid Labs are all "off" also....

So, I started to see the surgeon on Thursday afternoon, to see about scheduling that endoscopy and colonoscopy... and about the time I was leaving the house, I "felt" one of those drenching sweats coming on, plus they were supposed to put the holter monitor on me for 24 hours while I was there... I almost called and cancelled, but decided I would "try" to at least get into the surgeon... 

and wait on the monitor... because the leads will not stick on my skin if I am having one of those horrible drenching cold sweats... so the doctor was running over an hour late! I knew I was getting worse, but fortunately it was not a terribly bad one, but I did put off the monitor and told them I would try next week... and I did get in, so I have the endoscopy and colonoscopy on November the 14th!!! And now the way they "clean out" your digestive tract is almost silly.... 

rather than drink that "lime stuff" like you used to, you get 2 32 ounce bottles of Gatorade or Pedialyte... 2 bottles of "Miralax"... and 5 Ducolax pills... and mix the Miralax in the Gatorade and drink it like a glass every 10 minutes until you are finished with it, this is at noon and you are "fasting" anyway, with jello, etc the whole day before", and then at 6PM you drink the other Gatorade and Miralax and I think in between take those Dulolax pills!!!! 

Good Lord I hope that does not make me sick... that is a lot of Gatorade, and I guess it helps to "hydrate" you, rather than used to, you would be almost dehydrated doing it the old way.... anyway, I just hope they can do it early in the morning on the 14th and get it over with... I've got to get hold of my son, and see if he can get off work to take me... of course they put you to sleep so you have to have someone to drive you home after it's done.... I still have not heard from the Endocrinologist... but I guess I will call myself and try to schedule an appt if I don't hear from them by early next week....

Wednesday, August 8, 2018

Our "fur-babies" & just how critical they are many of us our Live's, chronically ill, unable to get out, or have little or no family nor friends

I realize many people in the nation and around the globe have "fur-babies"... I know there are a great deal of us that think of them, as a family member, & crucial to our daily living.

When you get a puppy, kitten, or any type of animal that you can "bond" with, that bond can be so tight that either "you" or your "Fur-kid" can be severely upset for one or the other to not be around.

I know for me, if I didn't have my two "fur-babies" I don't think I would survive with all of the health problems, loss of two other precious pups, so much pain, & the "difficulty" in life to survive all we go through.

Those with pets, know they love unconditionally, they are loyal to the "inth" degree, and they treasure YOU as much as you treasure THEM!

It even makes me upset just to have to go away for a day and night, and them not be able to go... I worry like it was another "human" family member, they are who keep me smiling when I want to "pitch life" down the drain and say to hell with all of it.

So, I "lost" two of the most precious pups of my entire life... my dearest Tazzy, my Pug that I got for a Christmas present and she was only about 7 weeks old when I could finally pick her up. She was everything to me, no matter how sick, how much pain I had, how things seemed just out of kilter, there Tazz was to make me smile... Then several years later, I decided to add a 2nd fur baby to my home. So, Bubba Gump, (Bub's as I called him) who was part "doxie" and part "chiquawa" but I didn't see much of the 2nd part in him... they called him a "Chi-weenie" but the "Chi" was not there in looks. Anyway, he also came along at about 6 weeks old, so tiny he could sit here on my desk with me. Tazz was about 6 almost 7 years old, when one morning I noticed she was "acting odd". From the time I got her, about 10 times during her entire life she would get a "seizure like" episode, and would shake, shiver, get tired, and we had to hold her, talk to her, and in 15 minutes she would usually calm down, and be fine and ready to play. One morning, she just acted like she didn't have an energy to even walk to the kitchen. I went to look for her, since she was not coming when I called her, and she was laying beside her water bowl, so weak I had to literally help her put her head up enough to get some water. I almost had a heart attack.... I went into almost the worst panic attack I had ever had, and immediately picked her up, wrapped her up and rushed to our Vet, who thank goodness is only about 3 blocks from me... they took blood work, and Tazzy, just was limp and weak... and my heart broke to see her like that... I will never, never forget that feeling I had... so the Vet said she felt like taking her home with me was the best idea and then bring her back the next morning for more tests... Well, I think the Vet and I both knew Tazz would not go to the Vet the next morning....

It's taken me a while to even try to finish and post this. I still feel the pain from such a great loss, of my two fur-babies. Those that don't have pets, may not understand the way they become a family member. When you live alone, or don't have much family, or many friends around, that one or more pet, whether it be a dog, cat, or others, are what keep you going. The days when the pain is severe or any number of symptoms arise, I can look down at Bella and Peanut, and know that I am "needed and loved unconditionally by those two small tiny fur-kids....

I wanted to get this published, but I will close this one now, and do another in a few days.

Wednesday, November 8, 2017

Trying to "find a new path" and Easier "lifestyle" for me, because i simply am not able to do all the stuff around my house I need to...

Lots going on, and much of it to do with my house, the lease on my car, and trying to "cut down" on my stress level, on my expenses, and get myself where I can spend more of my time doing the things I want to do, rather than drive myself insane with worry over "fixing" something every week at my house, and my own health, and pouring money into it that it is getting out of hand..

I never thought I would "want to live" in an apartment agai, BUT with the ways things are, the expenses of trying to keep a house "together", painting, roofs, inside work, floors, putting walls up in the laundry room, MANY trees that either need to be cut down or trimmed, and more.., the list is endless, and I have to face the fact I can no longer, "hang ceiling fans" and stand on a ladder to paint, or buff hardwood floors, fix a dryer again that has gone out, try to "fix" what the "scam artist" made a mess of with the repair and paint "job" he was "supposed to do on the outside of my house, and again, everyday there seems to be more, that keeps me away from my writing, my blog, my advocacy work, spending time doing the things I "want" to do, rather than a never ending realm of "repairs"..... so after the holidays, I am selling my home, and moving probably closer to my daughter around the Corpus Christi area, in an apartment, where I am no longer having to do ALL OF THE UPKEEP, MAINTENANCE, AND EXPENSE OF LAWNS, AND SUCH!!!

Well Hell, Just AS I THOUGHT! The dryer had the thermostat for some reason "short out" I think by the looks of it... so it (I can see) it "burned one of the tiny connections on the heating element... the element looks "okay" but with that piece damaged, I didn't take a chance. I ordered the ENTIRE ORDEAL, thermostat, the thermo fuse, heating element, and then the wires that go onto the thermostat and heating element. This is just about what happened before. I looked it up and it was in mid 2013 that we replaced all of that before. 

Thank goodness for AMAZON and keeping up with orders. I could go back and see exactly what I ordered then and so I knew exactly what I needed!!! It does piss me off that in 4 years it has gone out again, BUT when I MOVE, if the apartment does NOT have a washer and dryer, I am leaving mine to go with the house, or selling them and will buy a new washer and dryer. I bought them 2005, or early 2006 when we first moved back to Ennis, so they have served their purpose. We did have to replace the parts before 4 years ago just like this in the dryer and then I know there was also the front "button" in the door that broke, and we replaced that, and I "think" something on the washer had also gone bad at one time and we replaced it also.,, SO ON THIS DREARY VERY COOL, RAINY CRAPPY DAY, I'VE been pulling the back off my dryer in that very TINY damned laundry room that has NO light worth a damned, so I was trying to hold the flashlight and the the damned hex screws loose from the back of the dryer, LOL..."Tis done and I've put the order in for the parts, which will come in on Friday! But, of course I may not get them early enough to put it back together until Saturday... 

I was SUPPOSED TO ONCE AGAIN GO TO THE CASINO ON SUNDAY! But, now I am not sure if I will, Bella has surgery next Wednesday bless her little heart...I had to postpone it from this past Monday, I've been under the weather with a headache, sore throat, very hoarse, and my right shoulder and elbow are about to drive me nuts. I guess I've been using it painting outside and putting down that edging that I have to use a rubber mallet to drive the stakes into the ground that hold that edging down... plus cut more tree branches down and still need many more. but today I "think" I am just about through for the day..., I got up again very, very early and didn't sleep worth a damned, and I am exhausted honestly..  it seems to be non stop worry over this house, the yard, how many trees need to either be trimmed or cut down, and I am just no longer able to do even with the "cordless" mower, weed eater, chain saw, and so on...

If my neck and shoulder specialist "knew" what I've been doing he would probably have a cow! I am really taking a chance with much of what I have been having to do myself, between the hip fractures last year in December to the 4 month ordeal getting over neck surgery this past April, along with my lower back, now the shoulder that has been replaced and that elbow on the right side just giving me hell with pain, and the weather does NOT help for sure...,


Tuesday, October 17, 2017

"National Pain Report and a New Book about FM and CFS....


FIBROMYALGIA and New Book You maybe interested in.....

Since I really LIKE what National Pain Report says, here is a new book they are talking about, and it's in regard to FM, (Fibromyalgia) which I know MANY of you have, have been diagnosed with it, or told you "may" have it or what they also referred it as, "Chronic Fatigue Syndrome"... I know MANY years back when I was trying to find answers to my "nightmare of several times a month migraines" I had several physicians tell me they thought I "may have" Fibromyalgia, or then also they referred to it as, Chronic Fatigue Syndrome... 

back then it was so NEW, they really had NO CLUE about it at all what it was, what caused it, or EVEN IF IT WAS A REAL DIAGNOSIS... I know MANY women continued to "hear" it as a diagnosis, when doctor's did not KNOW what was wrong, with WOMEN especially so it was either you have FM, CFS, or you are "stressed" or "depressed".... which aren't we ALL those things, whether we are "chronically ill" or NOT... plus being stressed or depressed it NOT just for women, but MANY men now days also... but since I realize that IMOP (which my opinion is not really a matter here) but I THINK that FM is an "autoimmune illness" just as any other like Lupus, RA, Sjogren's, JRA, and the

Monday, July 17, 2017

How does one find "hope" when your life feels like the meaning is gone... Chronic Illness, and Chronic Pain how it takes its "toll" on your mind, body, life and soul.

Lots on my mind... I miss "life", I miss what I loved so much, that I feel was lost in "translation" somewhere along the way. I've not had much to say, because I cannot stop the tears from falling. I've been trying to pull myself out of this "funk" but honestly, I cannot find motivation to do much of anything.

Living from surgery to surgery, not knowing from one day to the next what will happen as far as my stupid Lupus, RA and such, not having the love in my life that I had, I feel so adrift, so lost... There is so much to say, but I am so choked up that I cannot even find enough words to type, write, and I feel "useless"... I always had something to look forward to each morning, I always had "plans" dreams, had faith, and all of that has just faded into memories... 

I told a friend this morning that now I know why as much as I love music, I find myself almost unable to listen to it... used to I had the radio on, everywhere, all the time, or the I-pod on walking, and now it's too hurtful to listen to what hurts so deeply in my soul... too many of the very songs I loved, bring back too many memories, and I've lost just about everything that I've ever loved, and held so precious. I used to be able to find a way to pull others out of this kind of horrid emotion, yet I cannot find a way to pull myself out of it... I feel so "forgotten".... and I think that is because I made the mistakes, that made others "forget".... I blame me, for much of that....

All that I "lived for", hoped for, had faith in, over the years the constant concern, over my own health, and my loved ones health... then the surgeries, many, and the severity of pain, sometimes even with medications, it seems it is relentless... and then to think that you may "lose" how far your life has come, fighting to find relief, find great physicians, that understand, and try to help make you more comfortable so you can find greatness in life and love again, could be thrown out by the governmental bodies, that have not one clue what we endure on a daily basis.

If someone would have told me in 2004, that I would lose the love of my life, that I would have to endure so much chronic illness and pain, that I would find myself so lost, and feel as if anything that I was ever "worth" or worthy of, no longer am I worthy or worth anything.... not worthy of being loved, not "worth" the paper either of my published books are on, and that all I hoped to do in the future, to help others, I find I am drowning in so much heartache, that I feel nothing, but pain, loss, and see no way I could help anyone, when I no longer can help myself.

I cannot sleep, I live with severe cold night sweats, and night terrors, ever since my husband left me, just walked out after 13 years, and then my Mom passing away in 2016... I've lost all will to "walk on"... to "look forward"... I stand stagnant, I cannot find the words to express the severity of gloom that deems to cover my heart, my soul with a darkness, that I am not sure I will ever get out of... not a "hole" but just an ever surrounding era of darkness, and each day, I used to think it would get better, things would change, I would find the "light" again. Yet, light only makes it hurt worse.

When i look in the mirror, at myself now... I don't see the "young at heart" 50 plus year old I was... I see the older, lonely broken-hearted woman, that who would want to have any longer? The Sjogren's took all of my teeth nearly 4 years ago... that was one of the things in my life, I never wanted to have to go through... it is a "loss" that makes your reflection in the mirror so different... you feel "older", your feel any "beauty" you had has been suddenly taken away... I used to be overly obsessive because my teeth were pretty crooked, but then when you lose ALL of them... and have to try and endure total dentures, at a young age, they never are "like" anyone says that they are... they are just a total pain, in the mouth, in having to deal with them, in you not wanting anyone to see you without them...

I'm also dealing with a different "medical issue" that I have brought up to my doctors several times, but I've still not really gotten an answer, or what to do about it...

I've been having heck with "nighttime cold clammy sweats"...NOT a "hot flash" but I wake up shivering, my clothes, pillow, and bed sheets completely soaked in sweat. I've also had night mares horribly and have an issue about waking up around 3 to 4 am each morning, and not able to go back to sleep. I had quit drinking coffee because of my GERD, and didn't drink any for about 2 years or more. 

But, recently, even with the heat, I've almost "craved" coffee but only early in the morning. I have mentioned these cold shivering mainly happening night sweats to my doctor several times and really expressing that it concerns me. I don't think it is "hormonal related" because as I said above, it's not like a "hot flash" and 99% of the time they come on in the middle of the night almost at the same time. In fact, the past two nights it's been really bad. I had to get up, get my thick robe last night, and as "warm" as it is, I had to put that robe on and sleep in it, because I was shivering I am so cold. About 2 weeks ago, I had one before I went to bed. I felt it coming on, and it usually starts on the back of my neck or my head becomes suddenly soaked, then the rest of my body follows... so I've done some research and it sounds like "hypoglycemia" but a specific one that usually only happens at night, like this causing a cold clammy sweat that soaks your clothes, sheets blankets and all. Plus the waking up at 3AM is another sign of it, and the night terrors I have can be a symptom. I am a huge fresh fruit eater.

 I try and stay away from high calorie foods, I eat whole grains, and try to stay away from white flour products, but I do love sweets. Yet, I bake my own often using whole wheat flour, canola or coconut oil, Splenda, I've not used very much "sugar" for many years. I've done a great deal of research on different types of flour, and as I said most everything I bake I use whole wheat flour, recently I've tried adding some Coconut flour to a few things, but it is really hard to "adjust" to. You don't have to use very much at all, like a 1/4 of a cup, can take the place of over a cup or more of white flour, or even wheat flour. It gets "thick" very quickly, and I use "egg beaters" mainly. I am not a huge beef or pork eater, but mainly chicken, turkey, fish, beans, peanut butter and even though I love cereal of just about any kind, I usually stick to something like plain cheerios, or some such as that, then add just a tiny bit of some other one that is a bit sweet.... 

What I didn't realize is that "hypoglycemia" can be a precursor to diabetes. With my RA and Lupus, I do have a higher chance of having diabetes, thus I watch the sugar intake, etc... try and walk, exercise daily, of course lately with the neck surgery, it's been rather difficult to do other exercise other than walking, plus I've had so many problems with at first my right hip and thigh the one that was fractured causing pain, and sometimes walking makes it worse, but now both of my hips hurt, and I have to wonder if I have bursitis in both of them. 

I've had it before and had both injected, once or twice at the same time. Since I did not have a "complete hip replacement" after the fractures, but a "gamma nail" and screws i found out I could still have "bursitis" in that hip. I've also noticed especially since the hotter weather arrived, I have a very hard time with my "body temperature" inside. I'm either too "cold" with the A/C on, OR I turn it where it comes on less, then I am too warm... like my body just cannot adjust its temperature.... Has anyone experienced this type of problem with the cold clammy sweats, I mean soaked clothes, sheets, blankets and all... and get up and often my clothes are still damp, even if I got up and changed during the night.... and if so, did you get a diagnosis, or what have you done to try and help it?

Friday, February 10, 2017

I was given a "press release" that I am very proud of ;)m- Goes to show ANY Advocacy Work is well worth doing especially for Chronic Pain and Illnesses

I've really been down and out lately at the numbers that are coming to my blog. Used to I would have at least 75-100 and sometimes 300 or over. But, over the past 4 months, even before I went into the hospital I noticed a huge drop in those coming to my blog.

I know "Google" have changed a great deal of their SEO stuff, BUT, I have many of their ideas and recommendations that I use. I've not went through the entire "book" of recommendations, BUT, I usually post everyday, sometimes more than once. I do miss sometimes, such as when I was "out of pocket" due to the hip fracture, but even then I still posted once I was feeling a bit better and had my laptop to post to all of my social media places.

The one thing that I have not done "much" and continue to try and not do, is get too deep into the "political" issues that are invading our lives DAILY! I know many are like myself and HOPED that AFTER THE ELECTION some of the DAILY CRAP WOULD STOP!

Well, I should have known much better than that. With the "Donald Duck" elected LOL, there is NO way to SHUT HIM UP NOR the NEWS. Everything he does, tweets, says, posts, and probably what he eats for his 3 meals a day are NOW LARGER ISSUES ON THE NEWS, THAN THE ELECTION!!!!!

I am SICK TO the point of NAUSEA hearing about "The Duck" this, that and the other.... I cannot even "type his name" it makes me so ill to see or hear about one damned thing he does.

I was a "voter" and I've voted for many years, without missing many. Of course I feel if we "vote" then we do have a right to GRIPE! But, for those WHO DO NOT VOTE, then you do not have the RIGHT TO FUSS because you did not allow YOUR VOICE TO BE HEARD!

I KNOW that my "typical" daily life may not interest you. thus I "try" my best, to put something useful, fun, information that you can use, new items from The Arthritis Foundation, to WEGO, to other health and human information especially for us that remain all too ill, from Chronic Pain and/or illnesses.

I am HAPPY that although I had TWO HIP FRACTURES, now in 3 days it will be 90 days since that 1st surgery, and I am doing very well. Even without a cane, and in fact, I left it at home yesterday and did not even take it with me.

I realize at times, I am still leery about being almost too cautious, in fear that another fall could even be worse. I also am in fear that if I don't try and do all I can to "never cure" the osteoporosis, BUT try and build "muscle" and "put protein" back into my body, I have a far better chance of not being a "fall victim".

The woman that was in the room at the Rehab place with me for part of the time, had already been in the hospital like 3 times BEFORE CHRISTMAS, IN LIKE 3 MONTHS! She had pneumonia a couple of times and was put in for that. She has also been a "Diabetes 1" victim since being a teenager, which I watched even after all these years, especially without a proper diet like she should have had in Rehab, she was always having way too many problems with her Diabetes. Then she had fallen and been in Rehab before Christmas I guess in August or September, then fell broke her pelvis, WHICH SURGERY OFTEN CANNOT REPAIR A BROKEN PELVIS, thus you have to spend WEEKS AND WEEKS IN BED TO ALLOW IT TO HEAL ON ITS OWN! Her pain had to be horrible. I know HOW MUCH PAIN I WAS IN WITH THE FRACTURES TO MY HIP, and I was yelling, screaming, cussing, bitching, crying and my entire neighborhood probably thought someone was attacking me, or I had just lost the rest of my mind. MANY of them came when they saw my son's vehicle here to ask what happened, that I was SCREAMING AND CRYING SO MUCH, they could not imagine what had happened. No one I guess heard me screaming and yelling and crying, while I was still in the house for over 3 hours, being too stubborn to call the ambulance. I "hoped" I had a "bad bruise" NOT a damned brake to my hip. But, alas dammit the news was worse, because I had TWO breaks in it.

I cannot begin to even express "ALL I LOST" in those weeks and weeks, through the surgery, through being an inpatient in a Rehab Center, from my own self-esteem, pride, I felt unworthy, useless, a burden, and just a totally screwed up person to be going through this and making my kids go through this also.

LOTS played into my issues with the entire thing, because of losing Mom to Lewy Bodies Dementia in June of last year, and having to take care of her, the 6 months prior, I was already more than behind on "caring for me"... I cancelled neck surgery at least 4 times, and just put my RA medication on hold, since I just felt I COULD NOT leave and go to Dallas for a few hours.

I AM STILL trying to "clean up" everything that needs to be done, and actually am totally confused, because I feel I did not "grieve" enough before trying to begin taking care of other affairs once she past away, that now I get to a place I am not sure what, what not, which, how, is done, not done, and my own "Christmas Present" to myself, is still sitting in my hallway, along with the new rug for my living room. But, now with the hip thing, I fear trying to turn the old sofa over in order to get the backs off of it. That is what has to be done, before it can be taken out of the house. Once that is gone, I can once again clean the hardwood floor very well, put the rug down and get my new sofa/futon/chaise lounge finally put up and using it.

So, NO the political issues I speak of are usually tied into "medical things".... whether clinical trials, or laws, or trying to get the government to fund certain research projects, and so forth, my "own personal beliefs" in whom should be or not be President, and so on down the agenda, I feel I did my part, I can now bitch all I want, AND then go on with my life and pray we have NO ALLIES by the time one YEAR has gone by with the "Donald Duck"....


Friday, January 27, 2017

After Surviving Two More SURGERIES, fractured hip 2 places, a Hematoma Softball Sized, and my 1ST TRIP out by myself in over 6 weeks!! And Mourning The Loss of By Precious Fur-Baby!

I came in from my 1st TRIP out ALONE earlier this afternoon..made it to the market, to my pharmacy, & to pick up the Angel that ever's had given out in a celebration of our loved ones who passed away last year. I missed it due to the fall resulting in the fractured hip, then another surgery to remove that softball sized hematoma. One of the women at the market, knew what happened, because she was buying groceries also, and came to me, hugged my neck and told me just how much pain I've been thru, that she said she could not be as strong as I have been. I hugged her back, and told her, that inside, you "find" the strength, and from "above" to help you to try and heal, to try and regain your own life, even though the loss has been tremendous. So, I got home, & Peanut was waiting for me, I let him out of his "carrier" (he love the thing and gets in it all the time himself... as I carefully brought one sack at a time in up my front porch that has only two smaller steps, and began putting them up, 

I went to put up some dog treats, and all of what happened that night with Bubba Gump came rushing over me and through me, and I had to come to my desk, as Peanut knew I was upset so he is sitting beside my deck, on the sofa.... so I opened up Bub's beautiful cedar box, and broke down and sobbed.... it is so hard to believe those few ashes, were once my sweet Bubby's..... 

I will NEVER be able to forgive myself, because I feel Bub's would be here, had I not been gone so long... he mourned himself, sick, and stopped eating and drinking, even though my son and my dog sitter were coming by each day to play with them and make sure they had fresh water, fresh food and clean paper...

 but I will never forget the night I held him so close to me, and talked to him, and kissed him, and he licked my face, laid his head on my chest and took a last breath..... all of these losses, are just about more than I can handle... Anyone that has "fur babies" or any pet they become attached to, and that pet attached to them, it is a loss of a family member if not worse. I just heard on the news last night, that a child will say at times, they love their fur-baby more than their parents at times... a pet loves unconditionally... and I know he is with Tazzy... and someday I will be with them, but right now it plain hurts....

Sunday, November 6, 2016

Day 4 - #HAWMC WEGO Health Writer's Blog Challenge - for the Month of November 2016

Day 4 - #HAWMC - A Letter to "Myself" at the time I was diagnosed knowing now what I did not know then....



Dear Rhia (self),

You had already "figured out" that something must be wrong with your immune system. You had been through enough doctors, tests, had so many symptoms resembling Lupus, RA, and several others like Sjogren's and Raynaud's that you really did not know much about.

When the 1st round of labs came back, from my own PCP (who diagnosed me at first), he knew that you needed to see a specialist. Although you come to find out your PCP has been more beneficial with the Lupus and Lupus Flares, that the Rheumatologist, who concentrates more on the RA than the other Autoimmune diseases.

You now can recall the first Rheumatologist, even though he was quite elderly, had just came back to work after a stroke himself, but his diagnosis, just after a thorough examination gave proof enough to show not only did I show signs of Lupus, RA, Raynaud's, Sjogren's, but had findings of probable MCTD, and that was almost more frightening than the Lupus and the others.

My moments that now I wished I had realized that ALL RHEUMY"S are NOT THE SAME, is something I wished I knew when I was first diagnosed. That caused me going through at least 7 specialists, each of which had a different "edge" and look on my diseases, or lack thereof. Most of them were only "blood work" driven. Not anything to do with all of the symptoms I had for years and years.

I could have saved myself a great deal of stress, worry, and getting nowhere, had I known to search for the "proper" Rheumatologist from the beginning. I've also come to find out my doctors here at my local Urgent Care know more about my conditions, than my Rheumy's for the most part. Plus if I am in a severe flare, there is no way I could get into my Rheumy in Dallas quickly. With those at Urgent Care I can be in and out, have the medications I need, and be hopefully on the road to curving the flare, without having to drive 40 miles each way, and maybe not getting what I need.

When I found out that I had 2 or 3 other 1st cousins, all on my Mom's side with RA, then we each began to piece together that this could very well be "genetic".

I wished I had known more about Sjogren's, for one. Maybe had one doctor done more about the Sjogrnen's I would not have lost ALL OF MY TEETH WITHIN A COUPLE OF MONTHS, requiring severe pain, and many dentists visits, to have all of them pulled that were left, and then try to deal with dentures, and the expense of over 15,000.00! Now I am still left with "pretty straight" teeth, BUT "fake" in nature.

So, I also wished I had more knowledge of how I could have been a volunteer and advocate before I myself had been diagnosed. I think had I been involved in some ways with the organizations who help us I may have felt "better" about myself, and not so ashamed of what these illnesses can do to us, our minds, bodies and souls... plus relationships, friendships, and the way people "see" us after we are ill.






Saturday, September 10, 2016

Grieving the Loss of a Loved One BEFORE they are no longer gone but you are a caretaker due to a chronic terminal illness...

I've been going through a really "odd" (pr what I felt was odd) kind of issue since Mom passed away in June. I kept telling others that I almost feel as if I am "still in shock" rather than in the "grieving process" and all these weeks and weeks, I kept "waiting" for those signs to appear, and they have in some ways...

yet I have felt angry and almost ashamed of myself, for "not showing" grief in losing Mom... daily now for weeks, I keep wanting to "call her" or run over to tell her something, and even though I am there almost everyday doing the remodeling, this feels different... then of course I realize no longer can I "talk with her here", call to see if she is okay, and usually have my own set of "life's issues" that I could talk to her about... 

well after much thought about it all, right now I am dealing with a great deal of almost feeling like "her life was dropped in my lap" kind of thing, but, I looked it up, and as I've mentioned, I had been "grieving" the loss of my Mom for months and months way before she was "bedridden"... 

and didn't know me, nor even where she was or who she was... I had that "grief" daily, from moment to moment, it was every changing, depending on what was going on at that time, or on that day... thus although it still sounds horrid, when she took that last breath, I felt at that moment "relief" for HER... no more suffering, hurting, crying, diapers, and lying in bed, she was finally "home" with Dad, and her family.... 

so here is one article I just read and decided I would post it...for weeks now I have felt like I am just "insane" yet what I've been through and am going through is all a part of the process...

Monday, August 8, 2016

A Petition to sign for Chronic Pain and such, along with information on Your Congressional Members and Town Hall Meetings!

Above is a link to Congress a Petition to sign about Chronic Pain and its effects on our soldiers and Armed Force and everyone else....

Also anyone who attends town Hall Meetings in your area, congress is out for the next month and most are doing them. So, be sure to find your s and see the schedule. Here where I am mine is Joe Barton, so here is his schedule for those around in the counties he serves.... 6th District in TX.....

Town Hall Meetings with Representative Joe Barton, while Congress is out for this month... be sure to check on yours if you want to go and give your reasons for anything... from chronic pain and such, to the focus on how horrid our governmental situation is now...

I KNOW SPEAKING UP WORKS!!! It has helped myself as well as many others, so SPEAKING OUT TO YOUR ELECTED OFFICIALS IS IMPORTANT!!!

Friday, July 8, 2016

Texas - And Violence too Close for Comfort just up the road, and an Officer from a Neighboring Town

It seems that no matter where we turn there is little peace on this Earth anymore. We continue to see more violence, more rage, more terrorism, whether from afar or from "home grown" people that sometimes I feel "give up" on the faith of humanity. I realize that ALL of us have a place in us that can "get to the place we have had more than we can take"... I've been there as far as illness, chronic pain, and then watching my own Mom pass away of something horrible that took her within just a few short months... actually weeks honestly. Yet, somewhere we MUST reach DEEPER within ourselves, and FARTHER into our own faith to know, that violence and harm to others is NOT the answer, it just makes things worse for everyone.... it's hard to fathom that "humans" can take the lives of other "humans" yet it is all around us, from small towns like mine to huge towns like Dallas and all over this nation and the world. Answers? None of us have really have "answers" other than trying to "hold onto" what we feel is right from wrong, and what we have been promised by our own "Higherpower"... Lord bless and look down upon all of those families, friends, and co-workers that have lost so much... this will impact many, many right here in our own community, as well as others.... May they find some "peace and understanding" through the wake of such horrific violence.

Tuesday, June 14, 2016

Thank you Extended Thoughts, Gratitude, Life, Lupus,RA, & All of the Health Issues In between...

First of all, I want to extend a very heartfelt Thank You, in behalf of myself, and my family for all of the support, thoughts, prayers, and the many that lifted myself, Mom and family UP, while she went on to be in a much better place last Thursday morning.

It was serene and surreal - both - me there with her, holding her tiny hand in mine, as I "knew" like I said I would that "time" was near, and she was ready to go "home" to be with my Dad, and all of the loved ones, that had passed away before her. As I sang several hymns to her, all of which were songs that she so loved to hear my Dad sing, and did here him sing, many, many times over, and I finished the last of the old hymn "Pearly White City", Mom drew one last breath, and that was it, and it goes "Tis' finished".

There was such a mixed emotion there just the two of us, so silent, yet the moment spoke in volumes that I knew she was at peace, no more pain, no more suffering, no more of laying there, having no quality of life... and I had lost not just my Mom, but someone I had grown very close to over the past 10 years in different ways, and the thoughts of all of our laughs, fears, talks, trips to the Winstar over the years, and all came flooding over me, like some of the floods we have experienced as of late, yet much in a good way.

I suddenly felt "peace" also. I suddenly in my heart of hearts knew, that all we had "endured" over the past at least 8 to 9 months and really much longer, now was over, and we could both rest in the fact, that she moved on to be "better" and my own "job" here on Earth is far from finished.

Not just "things" to do because of her passing, but LIFE to live, that I know now was waiting for this to happen. NOW, is when after things are settled that I shall finish my 3rd book, because "her story" shall be a part of that book.

I want to once again extend such a thank you to our Physician's Choice Home Health Care here in Ennis, as well as our Family First Hospice. All of them, especially that last week with the Hospice people would been so much more difficult had it not been for them. They look this horrible situation, and made it a bit easier to bear.

I am in gratitude of Keever's Funeral Home, Father John from the St. John's Catholic Church here in Ennis also, the Ennis Flower Shop who did such a beautiful job on the casket spray, and everyone else who sent their wishes, flowers, donations, and put their love and arms around my family, as we dealt with and continue to deal with a very sudden loss.

As the days move forward I will now be able to begin another realm and branch of my journey here, in my writing, and in my life. Of course there are still many things on the "list" of to do's, yet as I do those, I will now be able to get more back into my own writing, and pray that my "voice" shall once again speak to me in order for me to complete my 3rd book, and publish it.

I also have more advocacy work to do, since Alzheiemer's/Dementia, especially Lewey Bodies Dementia, will become a huge part of my advocacy work....

I wanted to catch each of you up, and let you know what is happening, give you some links also, and again tell you how much I so appreciate your reading my posts, and continuing to follow this journey we call life.....