Showing posts with label frame of mind. Show all posts
Showing posts with label frame of mind. Show all posts

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/








Monday, December 28, 2015

Pain Pump Replacement in the wee hours of tomorrow morning,..

IN October 2010 I had the original pain pump put in, which should have lasted 7 years or more... and here we are 5 years and its been in "stall" for months.... LOTS of things have happened between 2012 to 2015... some good, some horrible... and some I am so fed up in dealing with... I am SICK OF BEING SICK, I AM SICK OF SURGERIES, DOCTORS, HOSPITALS, TEST, LAB WORK, MEDS AFTER MEDS... Does it EVER END??? or at least get somewhat better... For some reason I am having one of these "diassociative" realms, where I feel I am here but not here... I've had this a couple of times in the past about 4 years, especially when there is just too much to deal with... and I think that is where I am at... I want this surgery, and the other at least one in my cervical spine taken care of... and I want some kind of freaking normal to exist... Sometimes I guess maybe that is too much to ask for... so my friend Carrie is picking me up at 4:30 AM and I have to be at the outpatient surgery center to check in at 5:30AM I HOPE that means I am "first up" and can get in and get out.... and we don't have to spend a whole lot of time up there, but they will intubate me, and put me under completely due to the type of surgery it is... so keep me in your thoughts and prayers, along with my Mom, who is totally worried, and Jim... and my kids... plus Carrie please prayer that she is able to drive and be safe.... she has also back issues badly, having several surgeries herself... so I am sure this will not be pleasant for her either... I shall post when I can... 


Now here I am facing yet another surgery, and two after this one if my neck and lower back don't improve... 

Saturday, November 21, 2015

More about Wound Care Specialists, Severe Pain that is driving me about insane, too much to do, Mom and what I fear is dementia or Alzheimer's & as always more.....

At this moment my Mother does not know just how upset I am with her. But, I totally intend to tell her today! After she had the issues with her stomach, and some intestinal issues, she lost some weight, because she just would NOT eat! I mean she went for DAYS and would barely eat or drink anything! I took Ensure over there, took everything I could think of, suggested everything I could possibly suggest, and finally took her to our PCP who put her on medication to "increase" her appetite, and some new medication they are using for chronic constipation, especially from certain medications. She has a lumbar spine issue, and had been on NSAID's. That has been going on for months, and the pain specialist even gave her Norco to take every 6 hours when needed. Which at first she refused to take, until the NSAID"S caused kidney output issues, that sent her to a Nephrologist, who took her off NSAID's (which our PCP has already done) and cut back her Lasix some temporarily until she had a kidney sonogram, which has been done last week, and more blood work on Monday next week. Then she follows up with him the first week in December. I feel things will return to normal. I feel it was the generic Celebrex that caused the issues, and now her kidney functions should be fine. But, he made the mistake of coming out and telling her she maybe facing Level 4 "kidney output" which means one step away from dialysis... I had told this before, and how I reprimanded him for even mentioning that word to her before he even knew WHAT was causing the problem, and before he even read the chart from our PCP etc... I was so mad at him... but MOM will NOT ask questions, she will not speak, she just sits there, listens, and then leaves not understanding a word... and having 15 questions, she never asked, and expects ME to figure it out, explain it, and then even at that she is so totally confused, she does not even know "if" she takes her meds now, or "if" she is taking the proper meds at the right dose. I cannot say enough that I have explained, I have a typed out list, of what she takes, when, how much, what it is for, and which doc prescribed it, and she still cannot get it right... she blames the pharmacy but she goes in, takes her "bottles" rather than calling them in BEFORE SHE GOES... and expects them to have them ready immediately even if she has NO REFILLS! Then she gets mad when they cannot get them okayed by the doc right then! I have talked till I am blue in the face, and nothing goes into her thick skull. I spend more time going over there to explain medications, that she cannot get straight... and she will do NOTHING for herself anymore. She won't leave the house for days and days and days, because it's cold, well it is winter! And mu body hates cold weather, and I hurt, am stiff, without my pain pump, with two HOLES in my legs, and I have to MAKE myself, but I get up and move, rather than lay in bed and mope! I even had the doctor put her on antidepressants, she is so totally depressed, and she decided her "breathing" was not right. So, she went in to her cardiologist, that told her the leaky valve was in such good shape now, that she can't even "hear" the leak! She also told her the shortness of breath, the weakness, the stiffness and pain is from having stomach issues, losing weight and muscle too quickly, not eating, and then now not exercising, walking, or something to improve her muscle tone, especially in her thighs... that is why she stays cold all the time, why she feels weak, and walks "slumped over forward"... and she just walks now "shuffling her feet" like she is almost what I see in people with very bad Alzheimer's.... So, Wednesday around noon or so, and had just gotten out of the shower, and my phone rings... my hair was not even dry yet, and she is "mad" again... she let the car sit there for well over a week, and did not even start it and let it run, so the battery was down AGAIN! And she was "out of everything to eat in the house"... so I told her I would finish getting ready, bring the battery charger over, put it on trickle charge and let it sit for a day or so, and I would take her to the store. Well, we get in there, and all she bought was paper towels, toliet paper and facial tissues! Barely anything to eat, but 3 pieces of "salami" she has sliced, and a small loaf of bread... and some already made bisquits and sausage to microwave! I was the one that really did not need much, mainly stuff to clean my dentures, BC powders, more large bandaid's... but I bought more groceries than she did... I bought a ham to put in the freezer, and several other food items... and we got to the front to check out, I looked at her and said, are you now eating paper towels? I thought you said you had nothing in the house to eat? Well, I know what she did... she decided NOT to buy what she really needed, because she was upset over the car not starting, and decided she would not buy all of what she needed at the time... which was totally stupid... here she was, did not even have to carry any of it in... I could help her, and griped the entire time about how heavy a 2 liter coke was, and how everything is too heavy to carry in... it took me only 5 years to finally convince her to use the reusable grocery bags... that are so much easier, hold stuff better, with handles, and you don't have 50 tiny plastic bags that hold nothing to try and deal with... anyway, I had already TOLD her at least FIVE TIMES that I had the appointment yesterday, in Duncanville, with the wound care specialist... and even though I had some idea what they would do, as far as debriding the abscesses... I was not totally sure, and had no clue how long I would be there etc... I never "asked" her to go, but she knew it was a new doctor, something I had never been through before, up in the Dallas area... etc... so even when I left her house Wed. afternoon again I reminded her of the appt the next day at 1PM in Duncanville... I could tell she was NOT going to offer to go... hell she did not even want to go to the grocery store, so I knew her not saying anything was her way of saying I don't want to go with you... but I called her about 11:30 yesterday morning. I was leaving at noon... to tell her I was leaving, and it maybe later that evening before I could take the charger off the car, or even today, Friday before I would get over... well, when I called SHE WAS STILL IN BED!!!! Again for over a week, she stays in bed until almost NOON! She never did that before! She was always up fairly early, may lay back down for a bit if it was too early, but she would get up, bake, do things around the house, and so forth.. she may sit for a time, but she was usually up and about for at least part of the day... now all she does it stay in bed and gripe because her back hurts so bad.. but will not take the pain meds as she can to help with the pain, and then will admit if she "gets up and stirs" around the pain is "better".... but yet, she was still in the bed after 11:30 in the morning... and then had the nerve to tell me, SHE DID NOT KNOW ABOUT THE APPT. she "thought" I was going back to the "surgeon" in Waxahachie!!!! She knew that was NOT true! I had told her when my PCP wanted me to go, what I was going to do and see, a wound care specialist, and she had been told numerous times it meant going to Dallas... so then I don't get home until after 4 yesterday afternoon... so I change, say hello to Bub's, and get things back in order and then call her to tell her, I was not going to mess with the battery thing until today... it was late, I was totally exhausted, and she did not need the car yesterday afternoon anyway... and again, she said, I think I have been "out of it"... I did not know you were going to Dallas, to this specialist... and I said YES, you are out of it, and YOU DID KNOW, because I told you a half dozen times, including Wednesday afternoon, again... that I had to go the next day and be there at 1PM.. and it was in Duncanville... and then she said something about sleeping so much, and again I told her that she is suffering from "disuse syndrome" and that staying in the bed and NOT DOING as her doctors have told her only makes her more weak, feel more pain, and worse health wise and mental wise... and then she said, "well I have nothing to do"... BULL, she is always able to find something to do around the house, she could have been up, dressed and went with me, and at least got out of the house, rather than sleep till noon, and then gripe because she is cooped up, cold, and weak, and in pain.... anyway, I just bit my tongue on the phone, but I totally intend on giving her a good talking to today when I go over... this is totally stupid... to all of a sudden lay down and decide to just give up and wallow around in your own self pity... anyway, I guess I should not post this here, but I am sick of her playing me and I spend more time messing with her stuff, and don't think I resent it, I moved back here to "help her".., BUT not everything... not all that she suddenly has decided she can't do... I already do enough almost daily for her, and the rest (she even decided it is too much trouble to go to church)... my Grandmother went to church everyday, without fail with her sister... so going to Mass on Sunday morning, certainly is not something she can't do anymore... that is just an excuse... okay... well enough griping and being disgusted with her attitude... I have my own stuff to do... I still have to try and see about this bracket on the ceiling fan, along with a billion other things I need to do... more later guys and gals....

More on Mom, pain, and wondering if I am LOSING MY MIND!
I saw it again yesterday... I "told her" 3 times about blood work she needs to have done "Monday"... and when I got up to leave, she said, I can go by myself "tomorrow" to have the blood work done... and we had JUST discussed it was "Friday"! I turned to her ad said, well if you think they are open on Saturday, I guess that would be fine.. and then I said "Mom, you can't even keep up with the days of the week, or what time it is, I am not sure you can go to have lab work done yourself... besides I had JUST ALSO TOLD HER that I had the ORDERS for it! Sometimes it is so frustrating also... because I just feel like I repeat and repeat and remind, and she still just does NOT get it. I walked in yesterday, and she was "looking" for something. I asked her what she was looking for, and she said you know the "stuff" for... and began to make a "circle" with her fingers... I said the "Meclazine" for vertigo... and she said yes, and I thought I had a whole new bottle.. I looked up and it was sitting on the kitchen cabinet... and I pointed and said hey, there it is right there... and she said I don't recall putting it there.... I did not know whether to feel badly, or be just plain mad... honestly... it gets very old... very quickly, and with my own health issues at this moment, and honestly my PAIN LEVEL EXCEEDS "10" at this time, and it about 80!!! if that was on the chart... everything on me hurts today... everything. and my pain meds did not come in yesterday, which concerns me, because the nurse at my docs office called Thursday afternoon and said she got them to the pharmacy... and they usually get those mailed out that same day, unless she did it very LATE in the day, as she does sometimes I think just to be an "arse" to put it bluntly.... so hopefully they will be here today, I will be out of the strongest ones by Monday morning, really Sunday night.. she always does that too, knowing that they come to me from a pharmacy in Dallas, she will cut it to the very last moment, and you pray you don't run out before your new script arrives... it is sometimes just frustrating... LOL... I guess I am a bit upset over everything today.... I have SO MUCH to do, and I hurt so badly, everything I try to do is just so difficult to contend with... my pain level has not been this bad in a long time, but it is surely making up for it right now...

Tuesday, May 12, 2015

When Life changes upon a "dime"... how do you cope? "It is not easy to be... me"...

Further information on our friend and client in Seattle. He may have that portion of his skull that they removed off for even a year. He will have to wear a helmet to protect his brain during that time (which I had also read). They will "freeze" that part of his skull in a special way and then can put it back later after things are settled. They say that even though he is responding and seems to know everyone and so forth, he seems to have no movement in his left side of the body at all right now. What really makes this difficult on Jim, my husband, is that after the accident a year ago, he is also basically left with his left side also the one with the most damage. Of course Jim's is from the nerve damage of the spine being basically "broken" from C-7 through T-7. But he continues to "regain" more use all the time in little ways. The nerves can somewhat regenerate, even though just a few years back, they thought they could not. Researchers now know that some nerves can definitely "heal" themselves, it just sometimes takes months or even years for that to happen. Fortunately it seems that his "autonomic" nerve system is intact. Even though they have him on a vent, he is breathing over and above it on his own. So, it will be a moment by moment watch for him. We never really have gotten exactly what happened, but it appears the brain bleed was probably stroke related. So, only time will tell. I am sure the biggest concern now, is of course the swelling on the brain, and fluid, he is extremely "puffy", his face and all are so swollen that he cannot hardly open his eyes. But, also I am sure they are watching and treating him for another bleed of the brain, or a blood clot would be my guess they would be concerned about now... so please continue to say prayers for them. As I said he and his wife have been "clients" now for over 10 years. Yet, before that Jim and he were friends at least 7 or more years before that. They own an online retail store, and he also has a business set up on E-bay. So that makes this even much more difficult. They were kind of "a family" business and needed to ship out parts daily all over the world. So, his wife is probably just in a terrible state trying to keep up with business and feeling badly she can't be with him all the time also. AGain, much like Jim and I a year ago. I needed to be home taking care of things here, and there was so much to make sure was taken care of after the accident, and then split my time being with his in Dallas at the hospital also. It certainly was not a great time in our lives, and in all honesty, things will never be the same for us. It has really taken its toll on the both of us in so many ways... more than you can know... and more than what we even thought it would. As I had said we would have to find a "new normal"... well that new normal changes from moment to moment. Between my own health issues, and all I have to take care of daily, and then Jim's lack of being able to do so many things, and his disability also, we both are truly at times on overload... I find us sometimes going for days and not really saying much to one another. We seem to get to a place that we are lost in our own thoughts, and tend to keep them to ourselves. I know I feel as if I am walking on egg shells all the time, and I am sure he feels the same. There seems to be "drama" about something every day... and now here I face this very invasive discograph, later in the month, again I cannot drive myself from, and then what if I have to have back surgery?? That is just another issue we face, and how we will get through that? I probably may not be able to drive for a few weeks... and who will take care of the dogs, and feeding us, and doing all of the errands and so on... so you can see, and all of you that have been through or are going through similar issues can relate....


When I think of the song by "David Grey".... that is how I feel these days... "It's not easy to me... me"....