Saturday, January 7, 2017

As Usual NOTHING is simple when it comes to MYSELF and MANY others with COMPLICATED AUTOIMMUNE ILLNESSES!


                            DO COMPLICATIONS EVER END????

Once again, my autoimmune illnesses play a difficult part when it comes to my health, my life, and after something like a major surgery.

Many of you know I had taken a hard fall on my hardwood floor on December 13th - which led to 2 fractures n my right hip. I had staples in it, due to two incisions, but I had a rod and screws put in and did not have a complete hip replacement, which we hoped meant I would be home sooner. SO MUCH for that thought! I should know better by now to :"assume" anything I have done will be "simple".

The surgery, the rod and screws, which I got to see on an X-ray yesterday January 6th, are healing well. I had a complication with my foot, thinking it was fractured, but I found out I have a torn ligament, which probably began when I twisted my ankle back in June so severely, then the fall, in which also involved my foot being "hung up" and caused the fall, then probably tore that ligament the rest of the way, thus now my right foot is in terrible pain, when I am standing or trying to rehab the hip. I've had to learn to work past the pain in my foot, thus the rehab portion on my hip is going very well.

Even my orthopedic surgeon said yesterday, that in spite of my complicated health problems, I am doing extremely well, and past schedule in a good way, compared to what he thought I might be. He was telling his nurse, that due to my attitude and willingness to work with therapy, I am doing very well. Yet, between the anemia, the liver enzymes being high, and now this "hematoma" that developed on top of the main incision after the hip was repaired, I face another surgery this coming Tuesday.

He has to go in and drain the "grape jelly" as he called it, the blood that has accumulated like a huge blood blister under the skin, and put a drain in it, so we can get rid of the huge "mass" right on my thigh, that makes me look "deformed". He said in his report, it is big as a softball. WOW! I knew it was large but "softball size"? So, rather than GOING HOME EARLY NEXT WEEK, I face yet another SURGERY! So, that delays me getting on home and back to my life, as I wanted to.

It certainly takes the idea of my neck surgery that I need so badly, completely out of the picture, and makes me want to "run" if I could somewhere that not a soul could touch me, and just be totally alone, perhaps with my puppy, Peanut, and the new puppy that awaits me once I get home.

Here are a couple of pics of my new little boy


who awaits me: He is apart of what keeps me on focus to hurry up get well and GO HOME!!!! along of course with Peanut also a Fox terrier....

Friday, January 6, 2017

Fearing...Home...Falling Again...Loss..Bad Blood work...Grieving, and more.... So Many Questions - Looking for Answers

I can't "fuss" too much about the care I've received in both the hospital and now the Rehab Hospital. Thank Goodness, it is NOT anything like a nursing home!

Although they have "long term" patients, there are 4 "Halls" of which each serves a different type of patient. So, those that like myself, are trying to "rehab" so they can go home and be able to care for themselves, we are all in one hall.

The others are for Dementia/Alzheimer's patients, and those that are probably here for the rest of their days.

I really have not encountered much that I would say was "wrong".... I usually get my meds when I ask within a reasonable amount of time, even though there are times, they have patients coming to to be admitted, or things get crazy, and I may have to wait a bit, or remind them. Most of the time, the nurses are apologizing to me, because they were not "prompt" in getting me my pain, muscle relaxers and my diazepam in a timely manner.

I've been able to shower by myself the past two times, and I am getting around MUCH better this past 4 or 5 days. Enough so, I am READY TO GO THE HELL HOME, I am SO BORED WITH IT ALL NOW!

But, complications, like a huge hematoma, at the repair site on my hip, has caused a delay in getting the staples out, my liver functions are all high, and my anemia really was a very huge concern. So far, it appears after the 3 units of blood at the hospital were given to me, my red blood cell counts have gotten better, but I look for them to bottom out again, once I am not here and on the supplements, besides I still feel that I have pernicious anemia, which is an autoimmune illness, plus even the liver issues, probably have to do with Lupus and the RA, causing the issues with my red blood cells being so low.... etc....

I realize I face yet another surgery my neck surgery,if I can recover from the hip fractures (or actually WHEN I recover enough to go and have it done...plus my lower back has to be fixed also....my lower back and neck both were already needing surgery, then between trying to take care of Mom, and now the "jolt" from the fall, both are worse than ever.

ALL OF YOU, PLEASE stay with me!!!! I am certainly NOT giving up on my blog, my advocacy, writing and my other things I participate in so I can HELP OTHERS understand they are NOT alone.....

I am trying to find ways to increase my readers here on my blog, but I know I really need to make sure I have interesting and valuable information here for everyone, or all of you will get bored with it.

IF YOU have any ideas of what you may like to read, hear about, or have me talk about, PLEASE let me know. You can always email me at: ravishingrhia@gmail.com

Thursday, January 5, 2017

#WHATTHEHEALTHCARE - Your "pet peeves" or worse with Doctors and the Medical System

#whatthehealthcare

HOW MANY OF us have dealt with wrong diagnosis, doctors with NO bedside manner,having tests we did not need, dealing with labs done but you don't get results until weeks and weeks later, doctors who make you wait 4 or 5 hours or more when you had a scheduled appt, not getting things billed properly to insurance...

... having a doctor make you wait, then the nurse comes in and says there was "an emergency" and you have to reschedule. go to:

http://whatthehealthcare.info/?spMailingID=16126899&spUserID=MTQwOTExNTk2OAS2&spJobID=921335017&spReportId=OTIxMzM1MDE3S0


WE KNOW HEALTH CARE CAN BE FUNNY AND EVEN FRUSTRATING AT TIMES…

LET’S HASH THROUGH IT!

 

 

Wednesday, January 4, 2017

Talking about "enduring" ALL of the "complications" & Nightmares of being in the hospital after breaking my hip, surgery, Rehab and "conflicts" of other illnesses #WhatTheHealthcare


 #WhatTheHealthcare

To understand this, I fell and broke my right hip n 2 place the Tuesday before Christmas. I am STILL in the Rehab Hospital and everyday there is some kind of "kink" or some complication, and guess who suffers for it???? ME, the PATIENT!!! Here is the latest example.... besides being Anemic and having 3 UNITS of blood before, during and after surgery.... I've had a ROUGH 24 HOURS AGAIN!

They decided to do that liver sonogram and I didn't know I could not eat, drink or even have meds (which I was told they would come somewhere around 3AM or so do to the scan. Well, 3 passed by, then 5AM passed by, then 6AM and nothing to eat, drink, no medications, and by 6:30AM I was about a basket case... well over time for pain meds, my Valium, my muscle relaxers and so on. So, everyone was checking to find out why the scan was not done sometimes in the early morning.

He FINALLY SHOWS UP about 11:00AM.... now this is like 20 HOURS SINCE I've had anything.... the sonogram did not take long, and I was "buzzing" for ALL OF MY MEDS, and some orange juice as soon as he got through. So, thank goodness I got lunch, and of course my stomach is so "small" that I can't hold a great deal of food or drink at a time.

But, I got my meds, and drank the juice, then ate some of my lunch, and now I am just worn out from lack of sleep, and lack of meds on time.... so it's been a heck of a day and night before.... I gather he did the sonogram of my spleen, liver, kidney's etc...so if anything is causing the blood work to be "off" hopefully they will find out.

Saturday, December 31, 2016

Trying to Move Past the "bad" of 2016 & look ahead to a Hopeful 2017... (Resolutions?, Revelations, Lessons from life's past, reaching within the depths of my soul to make sense, out of a "senseless" world and all that we must endure)

"Trying to Move Past the "bad" of 2016 & look ahead to a Hopeful 2017... (Resolutions?, Revelations, Lessons from life's past, reaching within the depths of my soul to make sense, out of a "senseless" world and all that we must endure) "

Alas the "title of this post" is a great deal longer than usual. I felt in order to bring the message to all of you I needed to try and title this so everyone will know how crucial this post is, and just how I've had to pull every ounce of whatever bit of faith I have to bring you the truest feelings of this past couple of years.

Life deems to bring us many things that we cannot possibly "see" the good out of it, whether it is loss of a loved one, a fur baby, chronic illnesses and pain, watching others suffer, when so often whatever is happening seems useless and a waste of what little time we have here on this Earth. I never said or pretended to understand why so many horrible events happen to those that are good, gracious, loving, nurturing, and are decent people. Yet, others that are horrible, frightening, terrible to their own kind, are not decent, not caring, and often tear others down, rather than build them up.

Most people find themselves trying to put a list of "New Years Resolutions" together at the beginning of each year. Other similar words, "revelations, settle, make a pledge to do something a different way, such a quit smoking, work out more, eat healthier, we pledge to ourselves to do some things in a manner more positive, than hold onto our old ways, that may not have been the best way to do things...

thus rather than resolutions, I try and use a different term, such as "throwing out the old, torn and tattered ways, and beginning a new way with new "material" and a hopeful heart. I also know many of us "keep" some of those "resolutions", and some find themselves settling back into their old ways, which brings a guilt to our heart, thus too many "difficult" changes within a short amount of time, leaves us to NOT be able to keep them all. We get upset, feel so useless, see others making their goals, while maybe we cannot keep our own.

Below are a  few synonyms that could be used to mean "Resolutions":

intention, resolve, decision, intent, aim, plan;
   They have became a "tradition" like black eyed peas at midnight for good luck in the coming year, we have many traditions, we keep or try to keep during holidays and so forth, like mistletoe, the Christmas tree, sending cards for holidays, celebrating birthdays, anniversaries, and so forth.

I guess I would say that I shall "pledge" or commit to a few things that I feel I need to change and have a fresh start for the new year.

As always all too often we have "unexpected" roadblocks, happenings, events, whether it be family, illnesses, accidents, jobs, and so on, that change that path of good intentions we set up for ourselves at the 1st of the year.

For me my good intentions tend to get put aside for family, or for the chronic illness and pain I suffer with, that in a moment I can go from feeling great to being in the hospital... having surgery etc. None of us can truly "predict" the exact things that will happen from one moment to the next.


So, as I, along with many of you try to "have the promises" to ourselves duly noted and ready to start anew, remember WE ARE HUMAN! We will have issues come up that causes us not to be able to keep some of the very things we so want to do, change, stop, start and so forth...

As I write this tonight December 31,2016 from my hospital bed, hoping to be out of here and home very soon, again, never did I think 3 weeks ago I would fall, fracture my hip in 2 places, have other complications arise, and spend both Christmas and New Years in a hospital.

Try to keep yours a list of things that are not too complicated, or just write down a few, lie 4 or 5, rather than 10, 20 or more, and be proud of the progress you make even if you don't complete them all. If you get "some" of them done, or just a piece of several that you are working towards a goal on, give yourself a "well done" and push forward, knowing even a baby step, is a definite positive for the New year and YOU!

A piece of me feels as if I am blocking out all that we went through with Mom, then losing her in June so suddenly. Then the ordeal of paperwork, and all that happens even after the funeral is over.

Then I've went from one issue such as both ankles severely twisted, to sinusitis, to pneumonia, to Lupus flares, then to take such a horrible fall. and break my right hip in two places... to wind up being in the Rehab on Christmas, and maybe for awhile after the 1st of the year.

I just know that things have to get better. I am so terribly tired of being ill in one way or the other. I tried so hard to NOT allow this to happen to me. I knew my chances of a fall could lead to a break of a bone or joint. That is one of the very last things I wanted r needed. But, when I hit that hardwood floor two weeks ago the coming Tuesday, I knew it was not good.

I wanted to believe that it was bruised badly, yet when I could not drag it on the floor without screaming out in pain, I knew then it was bad.

I've been in a turmoil over the state our nation is in. Now with the "person" that is to be our new President, totally terrifies the hell out of me. I cannot fathom him having enough tact with out own Congress, much less any other nation.

I am having to almost "hide" my feelings this season. Here I see many families, together, excited about kids, Christmas, and this very special time of the year, yet I feel left in a "dark fog" wondering once again why I feel "punished", why did I have to take a fall as I did, and break a hip. And what are the chances that I wind up having another surgery if this hip does not work without an entire replacement since the osteoporosis could cause issues.

Frankly, this is one of the very 1st times I've been this worried about my own health issues. I watched my Grandmother and my Mom be able especially my Grandmother take care of themselves for YEARS alone. Now, I fear everything, from just getting out of the bed to going home. I've always been so bound and determined to do my stuff myself. Now, between the Lupus, the RA, the Osteoporosis, and now a broken hip, that I will lose some of my independence, which that thought bothers me badly.

Then to have one of my fur kids pass away suddenly night before last in my arms, here in the Rehab, just seemed to put the entire last almost 3 years into a world of such hurt, for myself, and also my kids; I keep trying to "hold onto" what little faith I have to sustain me, and try to over the sinking into sand, peeking upward, and asking for another half ounce of courage, strength and ability to try to "understand" the reasons I may NOT understand, not now, but someday I shall know the why's of this life, and the grief it brings to us within a matter of moments.




Hoping that 2017 "pushes" out all the grief, sadness and illness and brings peace, wellness and secuirty to myself and everyone!

I have been "quiet" - but I had more terrible stuff going on... Bubba my Chiweenie, got suddenly ill, and passed away in my arms night before last. All of the loss surrounding myself and my family is really taking its toll on all of us. I've had all kinds of complications, from the anemia, to a huge hematoma just where the surgery on my hip was done. I look "deformed" because that hip looks like it is 4 times bigger than it should look, then my liver enzymes and lab work was high and all messed up. 

Then I still have this place on my right foot that I swear has to be fractured. I cannot stand to put any weight on it, which hinders my therapy for my hip. I just want things to get back to some kind of normal so I can go home. Even though everyone is extremely nice here, I don't want to stay one moment more than I have to. I had hoped I would be home by January 1st, but looks like that is not happening. My doctor wants to leave the staples in another 5 days or so, due to the large hematoma where the surgery and the staples are... 

PT is going fine, other than me having such heck with that right foot. They re-x-rayed it last night, and the woman doing the X-rays showed them to me, and said she was not the doctor but it didn't appear to have a fracture, and she mentioned a bone spur... but I still insist that due to the pain, the "redness" where it hurts and the pain and swelling from it kind of around and down my foot, something is wrong, and they have not found it. Anyway, wishing everyone a Safe and Happy New Year's eve and Day... I hope is 2017 brings more happiness, peace, and security, and wellness for myself and everyone.... Rhia

Thursday, December 29, 2016

How to Move forward with severa Systemic diseases, Lupus, Sjogren's, RA & knowing when everything feels so out of sorts, even with the New Year Upon me....

A piece of me feels as if I am blocking out all that we went through with Mom, then losing her in June so suddenly. Then the ordeal of paperwork, and all that happens even after the funeral is over.

Then I've went from one issue such as both ankles severely twisted, to sinusitis, to pneumonia, to Lupus flares, then to take such a horrible fall. and break my right hip in two places... to wind up being in the Rehab on Christmas, and maybe for awhile after the 1st of the year.

I just know that things have to get better. I am so terribly tired of being ill in one way or the other. I tried so hard to NOT allow this to happen to me. I knew my chances of a fall could lead to a break of a bone or joint. That is one of the very last things I wanted r needed. But, when I hit that hardwood floor two weeks ago the coming Tuesday, I knew it was not good.

I wanted to believe that it was bruised badly, yet when I could not drag it on the floor without screaming out in pain, I knew then it was bad.

I've been in a turmoil over the state our nation is in. Now with the "person" that is to be our new President, totally terrifies the hell out of me. I cannot fathom him having enough tact with out own Congress, much less any other nation.

I am having to almost "hide" my feelings this season. Here I see many families, together, excited about kids, Christmas, and this very special time of the year, yet I feel left in a "dark fog" wondering once again why I feel "punished", why did I have to take a fall as I did, and break a hip. And what are the chances that I wind up having another surgery if this hip does not work without an entire replacement since the osteoporosis could cause issues.

Frankly, this is one of the very 1st times I've been this worried about my own health issues. I watched my Grandmother and my Mom be able especially my Grandmother take care of themselves for YEARS alone. Now, I fear everything, from just getting out of the bed to going home. I've always been so bound and determined to do my stuff myself. Now, between the Lupus, the RA, the Osteoporosis, and now a broken hip, that I will lose some of my independence, which that thought bothers me badly.

The latest is I have a huge hematoma where the surgery was done on my hip. I knew it had been looking like a I had "2nd hip" and was sticking out but I just thought it was swelling. But when the nurse went to put a new dressing on it yesterday she found it was much more than swelling, and they took pics of it, and sent them to my doctor. Sure enough it is probably a  huge hematoma, and they are putting ice packs on it 4 times daily, and I won't even get the staples out for another week.

My foot still hurts and I still think I have a hairline fracture in it. I guess I should ask for it to be X-Rayed again. I am just so sick of being poked and prodded on, I hate to say that anything hurts.

I have to wonder if anything in my life will ever become "normal" again?


Friday, December 23, 2016

Perspective....during the rough times of life....

As I sit here in Rehab after a bit over a week since I fell, broke my right hip in 2 places, had surgery, and all within the holidays, I am so full of mixed emotions that I m not sure how or what I feel. I look around at everyone patient here. and ALL of them I have seen so far are at least 12 plus years older than me. I must say the entire staff are great. from the nurses to be rehab gals and guys. We had a really good morning in Rehab this morning, even had one of the guys playing the guitar and singing Christmas songs, and many were joining in.

 I wish all of you a Blessed and Safe Holiday - the weather appears like it may not be the greatest so all be careful if you are driving ... be sure to watch out for those in too big of a hurry or already have had too much "holiday cheer"... My Greatest Hope for the days ahead are for everyone to be at Peace, Harmony, and learn how tolerance can balance out life, and give all a better perspective of people, all people surrounding you daily that we are all the same... all pure humans, in an "Earthly World" that sadly has gone astray from their viewing others with new eyes and a renewed heart.

Monday, December 19, 2016

I FEEL totally CURSED!!

Most of u already are aware of my situation. Thank U ALL fir th well wishes, thoughts and prayers. When I am a bit more out of pain I will post more. Worried about my r. foot, think it may have a hairline fracture, so we may be going for another X-Ray This really put a kink in the holidays, and me having neck surgery. I will not be able to have that done now until the hip is healed more.... I am going to try and still write,blog, and do my advocacy work Again to you that have been so supportive to Amanda, Jason and myself - you guys and gals rock - guess this means my dream of snow skiing 1 more time in my life is over darned it..

Yes, this has been quite a shock to everyone to say the least. I WAS SUPPOSED to have cervical neck surgery BEFORE the end of the year. Last Tuesday, about 9AM or somy daughter, & I were on the phone talking. 

I walked out to the front porch, to see how"cool" it was outside & then walked back in the house & was going to step over 1 baby gate I have up between my Living room and bedroom. I have several up to keep the dogs out of places they just don't need be. I started over the gate & the toe of my shoe caught either the tip of rug out of the living room, so it is all hardwood floor right side, from my head/neck to my toes. 

It hurt so badly I dropped the phone & I WAS SCREAMING to the top of my lungs - I HOPED it was just sprained badly...but I got the phone , told Amanda to let me try and see if I could find out what I had messed up. I remembered that I had my crutches in the spare bedroom & also an extra rolling desk chair back there also. 

So, I put my heavy robe under me & was able to scoot a little at a time to that room. and then get up on the chair,grab the crutches & with my left foot I slowly rolled myself to the office.By about 2PM I KNEW something was broken but honestly I did NOT want to admit it. So, when the pain was unbearable 

I knew I had to call 911. I had no choice so, I made the call. Sure enough the CT& X-rays confirmed 2 breaks in my right hip. The Orthopedic surgeon , (Dr. Roye) who had also done surgery on my left shoulder & elbow, so he is familiar with my physical ailments. I can say this is the very last ordeal myself and my family needed- after losing Mom about 6 months ago.







 when it rains, it pours......

Friday, December 9, 2016

WEGO Health Blog Challenge for Monday 28th, 2016 - 5 Challenges and 5 Victories

Challenges and Victories (the WEGO Blog Challenge from November for Monday 28th, 2016)


As many of us have faced, it always feels as if the challenges tend to stick out stay with us, rather than the victories. I feel that is more likely about "Human Nature". As humans we tend to "dwell" on the things that feel lousy to us.

Challenges

As far as "Challenges - the 1st Challenge was truly facing the fact, I DID have not just ONE but "several" possible Autoimmune Illnesses, of which any or all, could cause all kinds of havoc in my life.


2) Facing the tests, all the labs (my 1st go round with lab work, they took 18 TUBES of blood, I am a difficult stick anyway but had to go back 2 or 3 times because some of the blood did not get to the lab quickly enough and was ruined before those tests could be ran.

3) How many so-called "Rheumatologists" do NOT have the "same thoughts and mindset" on Lupus, RA, Sjogren's and all of the other Autoimmune disorders. I found that some did not deal with "ALL' but possibly only dealt with one or two of them. I also found out that MANY doctors (specialists) ONLY went by "blood tests". IF you did not have a "positive lab on RA for example) some of them really were not convinced there was a "sero-negative" RA. I went through at least 7 or 8 Rheumatologists BEFORE finally finding the Rheumatologist that fit my illnesses and needs.


4) Trying to "find" the right medications, then trying to get the doctors to allow me to try them, and the insurance to pay for them, and then finding that medication or medications that even worked for my particular symptoms.


5) Losing my own "caretaker", then becoming a caretaker twice, all the while letting my own illnesses, continue to deteriorate my joints, and body. After putting off surgeries, now I facing further degeneration of my cervical and lumbar spine. I've come to find out that losing all of my teeth, all of the joint replacements, surgeries, many of my other illnesses, are ALL due to the autoimmune diseases and medications also. It seems there are so MANY different health problems that can be caused by AI diseases and/or the medications.


Victories     


1) Finally getting "diagnosed after MANY years of not one physician "getting" that it was Autoimmune related issues. 

2) Becoming aware that I was able to take my illnesses, become a "voice", advocate, Ambassador, for some of these, and that my blog, writing, and my books; along with Social Media really gave me a chance to MAKE A DIFFERENCE!

3) Getting to go to Washington DC in 2014 with the Arthritis Foundation! That was a dream come true. All my life, I had said I wanted to stand on the White House steps, and TELL MY STORY! Basically that is what I truly was able to do. I was able to "tell Congress" what my own personal journey through hell and back was like.


4) Finding the ONE Rheumatologist who has helped me, along with my Primary Care Physician, who Thank goodness was the physician who actually "found" my Autoimmune Issues.


5) Continuing to be able to slowly but surely "move forward". At times these diseases are "dammit the hell" bad, and put me on the sofa for even a week or more. BUT, so far, I am able to put one foot in front of the other each day, and even though the pain, and all of what comes with these illnesses can get horrible, I so far am able to do some things myself, realize when I can't, and be "smart enough" to admit that I need help with certain things. 

continuing with another "Victory"

For the most part, I feel "fortunate" to have somewhat of a "victory" over whatever happened to me in 2010, when I was so extremely ill and in the hospital for over 6 weeks having several surgeries, even a 2nd Heart Attack, yet survived to come home, take months to really "get better" and still be here right now to "tell about it"!!