Wednesday, June 15, 2016

Me, Ill again, sprained both ankles, yet made it through the funeral, and things are "okay".... more later...

Quickly, of course all went well actually with Mom, the funeral, and so forth. Things turned out nice, but simple as she would and did tell me many times she wanted. So, for that I feel blessed. I will miss her more than you can know, right now, I feel I am still in "shock" because it all happened so very fast. Yet, if it has to happen, that honestly was the best "outcome"... no longer her suffering, no longer her not knowing anything, and I just am "grateful" in many ways, that if this had to be as is, it did as it was... The Lord knows "how much" we can handle... thus He also allowed me to accidentally slip Sunday morning off my own porch in the very wet grass, while on the phone with Amanda Batson- Matheny and I SPRAINED not just ONE ankle but BOTH, the right one extremely bad. I did go and have them X-rayed Monday afternoon after the funeral, and they feel there are no breaks BUT due to the immense swelling, he said I may need to have especially the right one X-rayed again in a few weeks, depending on how it does... Amanda Batson- Matheny, Jimbo, Jason Harber and other friends and family, I am so very appreciative of the kindness. the help, and how many of you surrounded around each of us and Mom so we could find some "peace" in that Valley.... I shall later again tell more about last Thursday when she passed away, her little frail hand in mine, but honestly I AM SICK! I "thought" that us having all the of stress, eating out so much, and I am not used to that, not sleeping, and being so busy with everything had just worn me down but I woke up running fever this morning... so I guess that is God's way of "keeping me off my feet"... I can "endure" the severe ankle sprain pain, BUT I am a baby when it comes to fever, even just a degree gives me the worst headache and just makes me sick as hell. So, I am dealing with that this morning, which for now is okay... we got a great deal of things going and done, and of course over the next weeks and even months there will be more... but for now all of the most important things are done, and we all need a bit of rest and time to reflect... so if you don't "see" me here or hear from me, I am just feeling lousy between all of it and I am not really even online, nor answering the phone unless it is Amanda, Jason or someone "important" for now.... Again from all of my family to all of you our sincerest Thank you's.... Life is truly fleeting.... Rhia

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.....



http://www.jekeevermortuary.com/home/index.cfm/obituaries/view/fh_id/13137/id/3742850










   http://www.alz.org/








http://www.alzquilt.org/








World Blood Donor Day Today June 14th 2016!




Friday, June 10, 2016

My Mom has Passed Away - and some information about that..,

I am sharing this with each of you because I feel my daughter, Amanda is expressing ALL of our feelings emotions, and thoughts at this very, very difficult time in our lives. Life is so very fleeting, and I witnessed that within all scopes this past few months. Mom and I got to go to Winstar one last time in January. I knew about 3 weeks later, that would be our last ride while she slept and I drove to the Casino. :) She "cut up" her player card one day while I was there, and I kind of "scolded" her a bit, and then realized she more than anyone knew we would never make that trip together again, not in this world. Mom had a very peaceful passing at 10:20AM this morning.

 I sat beside her, and in my heart of hearts, I knew it was "time". I sat there, and sang 4 hymns, that she loved to hear my Dad sing.... and everyone loved Dad to sing in church, at weddings, and funerals. When I finished what pieces I could recall of "Pearly White City", she took another breath, and that was it.... Her hand in mine, just us two quietly, and me in "tune" as well as could be expected. That was my "time" to fall apart.... and I did, for a while I sat there holding her hand.... and then so happened the Hospice Nurse stopped by, honestly at the right time. 

Most of everything is arranged, Mom was a very simple person in life, she never wanted a "fuss" over much, so I knew her wishes were "simple" as far as after that. So, as I await for Amanda Batson- Matheny and her family to come from the Corpus Christi area, and to hear from Jason Harber - who I feel right now needs everyone to surround him with their love and support... He and "Granny Steele" had and will have a special bond always, and I know this is an extremely difficult thing for him to deal with.... yet all of us handle this things in our ways unique ways... so He will do the same.... We will have visitation and a Rosary on Sunday, from 4 to 6 and receive family and friends then. The funeral will be held at Keever's Chapel on Monday morning at 10AM with the Catholic Father residing over the service. There will be information on Keever's Website tomorrow about everything and the details. I will post that when I have a URL.

 I want to thank each and every one of you that have "held up me" through this... you are such a wonderful group of friends.... I also want to commend Physician's Choice Home Health here from the Ennis area, as well as First Choice Hospice, who took over last Thursday, and everyone were wonderful through all of this.... Words, I guess now, elude me, again but to say I appreciate and my family appreciates everything and all of the thoughts and prayers.....

From my daughter:

I would like everyone to please keep my family in your prayers, my grandmother passed away this morning. It is never easy to loose a loved one & this time is really tough!Granny was mine & my brothers last grandparent & my mom is her only child! She was the kids only great grandparent that they had left and it is not easy to explain to them that she is gone! ( I know the kids will always remember all the goodies she baked for them when they would go visit her!) I know she is in a better place now and her & papaw are back together again, so that helps ease the pain a little! We love you & will always miss you Granny


Mom's Obituary:


http://www.jekeevermortuary.com/home/index.cfm/obituaries/view/fh_id/13137/id/3742850  



Last photo of Mom, Dad and I in 2004. I was here from Seattle at the time, for my daughter's wedding, and I saw her and Dad then. This is the photo of all of us three, Dad passed away  March 27th, 2005.....
 

Thursday, June 9, 2016

"Dare To Dream" Sponored by Cure Click and About "Dreaming" and Clnical Trials



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Tuesday, June 7, 2016

Mom and Sharing a bit more.....

I was not sure about posting this here but it seems like the very best spot to let those who want to know about my Mom, Henrietta Steele. Of course this is Pam Steele, from the Class of 78, gosh a long time ago, LOL.... and many knew my Dad Minnis, that worked for Ennis Business Forms for 45 years, started at 16, and walked from Byrd/Rankin back and forth until he finally got his Dad's car (Model A) I think... anyway, back then it was still Ennis Tag. My Mom was having signs of "dementia" for a bit, but she is to be 81 in August, so "memory issues" are a part of that anyway. Yet, just this past January, she was still able to do much of her "daily stuff", cooking, cleaning, still in that little tiny house on Anthony Dr. - where I was raised, etc. 
But, within weeks, things went from "okay" to wait a minute something is very wrong. She was not able to "recall" how to put her car in drive, not able to turn on her oven, could not recall how to use the Microwave, and from there she quickly was stricken with what I feel is "Lewey Bodies" Dementia, it moves extremely fast, and her symptoms to be are definitely what I would say "fits".... both my Grandparents Rosie and Joe Svehlak, her parents, had Alzhemeir's/Dementia. So, it is not a huge shock, BUT theirs did not take them down this quickly. Which there could be some "mini TIA's" happening, mini strokes, and we would really not know that for the most part. 
Anyway, rather than drag this out, I know some of you have become "friends" on Facebook with me, and I am of course a friend on our Class of 78 Facebook page, so I also enjoy keeping up with everyone plus remembering "Ennis" and things we had and did as kids here, that are now just memories. Anyone, that may know of someone who would have known Dad and Mom, or myself, as I said I felt this maybe this best way to "inform" the few people we know and most of our relatives have already passed away.I am in Ennis and have been back almost 11 years from Seattle. I know a few did not even realize that. I will of course have something posted on the Keever's website once we reach that place, etc. But, mainly I wanted to get the word out, because this happened so quickly, and we don't have much family etc left, so I felt this would help to get the word out to those who wanted to know..... Pam Ravishing Rhiannon Steele
 
 
The last pic of the 3 of us in 2004, before my Dad passed away...
 

Saturday, June 4, 2016

Moving Forward.... thru the realms of Life, where it takes us, chronic pain, family, and all of the things we "learn" along the way..... Alzheimer's

They did not give Morphine due to Mom being allergic to Codeine, but Dilaudid instead and since I know more about that medication, I am glad they chose it. They also gave me "Ativan" that I can give her, and then a combination of meds in a "cream" that goes at the pulse points for nausea, agitation, and to assist in breathing... so far, Mom has been able to swallow just fine, but they gave me the Atropine because it may get to where she does have problems swallowing, and that is what is another part of the "comfort medications". I am able to give her the Norco just as before, she now has really stopped eating all together, which as they said was "normal"... and she still gets a dry mouth of course the medications themselves can do that, so she will drink of all things it is so funny, Mom never drank any type of "Cola's", or carbonated drinks... but when this first began, she wanted nothing but Diet Dr. Pepper, Sprite Zero, and sometimes Diet Pepsi.... 

so if she does tell me she wants a drink it is usually the Sprite Zero, with some water in it, so it is not so "strong" with the carbonation. I changed her a couple of hours ago, and got her all on clean and dry sheets, and a dry night shirt, and her diapers on, then they gave me some cream I put on the heels where the blisters were... actually the nurse told me unless they are "weeping", to allow them to "dry"... rather than put anything on them... so really the one heel is the only one needing much care... 

most of the other places where her skin is so thin, and like me, she has very huge places that appear almost like "blood blisters" but flat, and not blisters, just more broken blood vessels... and the Lupus causes me to have those... I told her that I had to look at those "new" types of diapers, because it has been so long since I used diapers on my 2 kids I was out of practice... LOL... and I told her that I wished we were at the Casino, and that everyone here online, and around town that knows tells me to say hello and tell her they are praying for her... but I try my best NOT to disturb her... 

I realize she "hurts" all over... and just even trying to roll her gently from one side to the other to change a sheet, diaper etc.. just plain hurts... so I give her the pain drops, and meds, and then I try to clean her good, but not put her through any more misery of being tossed and turned in the bed... and today she said "ouch" a few times, but I would tell her it was me, and that I was trying to do a "better job" that the aide as far as not making her hurt worse... and by the time I had her dry, cleaned up and gave her meds, she was asleep and peaceful again.... I don't know whether I should be "posting" this stuff or not, BUT it "helps" me honestly... have some way to "say" the feelings and emotions.... and then I am not so "frazzled" - thus the posts help.... my back is so messed up, I could sit in my floor, scream, cry, and gripe due to the intense burning in my hips and down both legs.... 

I may have to go to my pain doctor if I can next week and have him "up" my pain pump meds until I can get into surgery.... but we shall see.... As I said in another post, I continue to "learn" a great deal from those from Hospice, and I have a high and new found respect for the people that I have been in contact with so far.... they are definitely Angels... what a difficult "job"... that has to be.... Anyway, back to the sofa for me... I have to try and get my back to calm down a bit... I did not sleep well at all last night, and had severe nightmares all night long... so I am drained......

Friday, June 3, 2016

UPDATES THANK YOU'S AND EXPLANATION AS TO WHAT IS HAPPENING IN THIS NECK OF THE WOODS...

Congrats to My AWESOME GRAND DAUGHTER!!!!!! Heather I am so INCREDIBLY PROUD OF YOU :):) As you move forward in your life may nothing stand in your way, of you following ALL of your Hopes and Dreams! You are truly a Treasure and I could not ask for a better Granddaughter, and those two wonderful brothers of yours ;) Have fun, be safe, and live your life as if you are on top of the mountain! Nana Pam






 

Just a quick "Hello" and thanks all. Today is such a mixed day mentally, physically and emotionally.. I SO wanted to be at my GRANDDAUGTHER'S GRADUATION TONIGHT NEAR CORPUS, but alas with Mom as she is, and the WEATHER making life hellacious for everyone just about, I had to postpone my trip. Then I hate to whine, but MY BACK, LEGS, BUTT AND HIPS ARE ON FIRE!!!! after I got Mom in from the hospital night before last... dumb move on my part, but stubborn I guess shows me I should ask for help... at the moment I did not have one clue who to ask... but she is resting well. The aide came and got her all cleaned up, and I gave her all of her "comfort" medications, got things done there, and I just had to come to "home" for a bit, for the puppies, for me, and I need to get off my feet at least for a while.... love to all... and I am totally more than exhausted... so if I don't post, or accidentally don't answer the phone etc... I am just totally out of any "brain wave" at the moment.... 



Before it slips my mind, A HUGE CONRATS!!! to my incredible granddaughter today!!!! HEATHER YOU ARE SUCH A WONDERFUL YOUNG WOMAN, AND AS YOU STEP OUT INTO THE WORLD OF COLLEGE AND BEYOND, MAY YOU FIND ALL OF YOUR DREAMS COMING TRUE... I SO WISHED I WAS ABLE TO COME, BUT OF COURSE BETWEEN GRANNY STEELE, AND NOW THE WEATHER SO HORRIBLE, I HAVE TO POSTPONE, BUT MY HEART AND SOUL WILL BE WITH YOU THIS EVENING!!!! Love to you... and love to your brothers, Logan, and James... and also to your Mom, Amanda Batson- Matheny and Dad Jimbo! 

Thursday, June 2, 2016

Update on Mom the Alzheimer's, getting home from the hospital and of course hurting my back again, and so forth....

You are all such a blessing, and know you are so loved and appreciated... Mom and I had "hell" getting into the house last night. They did not officially discharge her till like 6PM! And I had to get her into the house by myself, so with her having having both back and front, I chose the back, with two lower steps, and using her walker, we very SLOWLY and with a few "choice" words, LOL, made it into the house, and finally to her bed. Hospice DID come by last night around 7PM, I was so shocked, I did not expect a nurse by, plus they had a courier bring some stronger pain medication for her, and now all of her medications will come via courier.... so that will be easier... of course now Hospice has taken over for the doctors etc as far as the dementia, and anything "to do" with that diagnosis, etc for now.... so I am hoping it will "settle" down a little... I really did a huge NO NO though - I injured my LOWER back, which already needs surgery, between all of the walking yesterday back and forth, our hospital is laid out so stupid, and you have to walk what seems like a mile just to get to patient's rooms, but then getting Mom in the house, I did a real number on my lower back and my neck.... I got her settled in and came home very early this morning to do some stuff done here, that I have to do and then I will head back over there, because her Social Worker, Aid, and so on will be coming sometimes after 8AM I gather... so it will be another day of hell I think, just being up on my feet, and getting stuff in order and so on... but now the Ensure, pads, Depends, and any and all "medical stuff" she needs, they will automatically bring us. and I no longer have to be picking those things up, including I gather most of her "meds" ... not sure if it is all of them yet, but ones that go along with the hospice diagnosis they will get and have brought to me... which is some help... then they have a list of people I can have either come "sit" with Mom in the week, night, day, etc for a few hours, some volunteer, some I will have to pay, but I can still go with ""Home Instead" which is a "sitter service" BUT they will have someone there, and I don't have to worry over if I get sick, or need to be away, and someone HAS to be with Mom, even though it means paying for them, they are bonded and so forth, I've met with one of the main case workers already.... and it is MUCH less although not cheap, than putting her in a nursing home, which means about at the lowest 3,000.00 a MONTH for room and board.... so hopefully we can keep her at home, where she REALLY wants to be, and hydrated, and well enough to avoid the hospital again... I can't say how much I appreciate all of your thoughts and prayers... and I need to get busy getting things done here, etc... but I will post when I can... Love to all of your guys and gals, Rhia Steele "All things Autoimmune"

Wednesday, June 1, 2016

New Clnical Trial for Cluster Migraines sponsored by Cure Click

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