A few of my Daughter and Grandkids, My 13 Sleigh Bell Christmas Ornaments, one for every year now since 2004, My Fur-kids, Peanut and Bub's, My Wedding Dress I decided to wash myself (I wore it 10 years ago last April 6th 2005) one of my Mom and more....
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Showing posts with label holiday spirit. Show all posts
Showing posts with label holiday spirit. Show all posts
Sunday, January 3, 2016
Friday, December 11, 2015
"Sharing" My Annual Christmas Letter with Each of You! - And Wishing you a Wondrous Holiday Season Despite Chronic Illness/Pain,RA,Lupus,FM, Sjogren's and More
I debated as to whether to "share" this with everyone here or not... but I feel I truly need to share "my own family, trials, tribulations, and hope that through my own "life's eyes" you can find your own "spirit" to write, email or tell your family, and extended family that "life" can sometimes be not so great, yet the "hope, faith, peace and spirit" can exist in spite of all that life decides to throw our way..... so here it is....
********** And Here’s A Merry Christmas Straight to You From Texas!*********
I feel as if i just completed my “Annual Christmas Letter” and once again, another year is flying by quickly. It is like with each year that passes, they seem to be shorter in length. Yet, it seems it takes me 3 times as long to accomplish anything!
Age, a subject most of us prefer not to talk about in length. Another thing is that with each birthday celebration, I feel like they come around twice a year rather than once. As I have told my son and daughter, Jason (who is 37), and Amanda (who is now 31), enjoy each moment, and savor all of the memories you can soak in, because as it used to feel when we are young, time seems to “drag” by,
Then we become adults with jobs, families, spouses, and the hectic times we live in, and time just flies by, and sometimes our memories of the good things we have seen, done, accomplished, been through, all tend to fade…
The holiday seasons always tend to bring back so many wonderful memories, of those Christmas’ when the kids were little, all of the decorating, baking, cooking, and parties that I had and went to, and how life gives us a great deal of good times, yet we tend to take them for granted. I know I have at times for sure.
Then with age, definitely comes some wisdom, and as I look back, I have had many “fulfilling” adventures, even though at the time I may not have realized it. Yet, when I think about my trips, whether vacations, with my parents, or with my own kids, or the times I took off on my own, and kind of let the wind carry me away… I always knew my “destination”… but it was always the journey to get there that made it exciting, and finally allowed to me look back and see just how “strong” (emotionally and mentally) I’ve been for the most part in my life.
So, as I try my best to “tap out” another Holiday Letter, I find myself almost as a loss for “words of true spirit” and good things from 2015. There is so much that has happened over the course of 20 plus months to my family and myself, that it will take another small “novelette” to give all of you the details of what has gone on.
The accident in 2014, that Jim, my husband was in, and the lawsuit that followed, finally came to a close the first week in November. Much to all of our surprise, it did NOT end on a “good note” for us. Basically, the jury decided it was NOT the truck driver’s fault (even though he completely ran over the back of our car and never slowed down etc.) and even though the other side tried to say our “car” was not in good shape, (they had someone say that the hood flew up while Jim was driving the car”, which I know and all of us know that did NOT happen, and never would have. My car, was in perfect condition to be on the road, and that hood was completely latched down, and did not just “suddenly” fly up. We have no way to “prove” it, but even our own lawyers tend to believe there was some “hush money”, and these “so-called” witnesses, that happened to have been outside in their yard, on a very busy I-45 coming into Dallas, and at that moment “saw” the hood open… that chances of that, you could win the lottery before that would happen. Yet, we have no way to prove that people lied on the witness stand, and I also feel there was something odd about the “jury”… I felt again, someone had been “paid” to keep their mouths shut, OR rule “no one at fault”… anyway, it left all of us devastated, more than you can even know. That accident has “wrecked” Jim’s life, especially physically, but mentally and emotionally. It totally wrecked my life, harmed my own health, and upset of course Mom, and my two children Jason and Amanda. So, due to a “truck driver” who was “on a cell phone with his brother”, and ran over the back of our car, we still basically “lost” any and all help with Jim’s medical bills, his future needs medically, he is unable to work full time due to what they now feel was more of a concussion than they first realized, he is partially paraplegic, and can walk on a cane some, but needs a wheelchair if it is a longer distance… and more than that, he moved back to Seattle 6 months ago. I am still not even sure why, other than he felt he was a “burden” on me… and that my health was suffering, and I was having to do everything, he could not cook, drive, even get down the steps by himself, and then I had Mom’s things I am doing also… thus we are still friends, and talking, keeping in touch… but whether we will ever “regain” our 13 YEARS together, 10 of those married this year in April, is still yet to be seen.
That is why partially I almost decided “not” to write this Annual Christmas Letter this year. I feel there is not a great deal of “good” that has happened to any of us over the course of 2015. In fact, Mom has not been well, and she has issues with her lumbar spine, and is getting ready to have lumbar injections in the next week or so. My internal “pain pump” also “stalled”, & I need surgery to replace it. But. 4 months ago I came down with two “lumps” one on each upper thigh, originally thought to be cellulitis. After 4 or 5 weeks of antibiotics, I was sent to a surgeon, to “incise” them, and he was NOT the doctor who should have done those procedures. I now have been going to a wound care specialist for 4 weeks in Dallas every week, so they will get well enough I can even have surgery. I also have lumbar/sacral back problems that need surgery, and without my Rheumatoid Arthritis medications, (they took me off them when I had the increase of infections with the cellulitis), so my pain level, without the pain pump, and even on oral medications do not even “touch” the horrid pain I’ve been in now for 3 or 4 months.
Mom also had some issues due to medications, and had some kidney functions problems, that they feel have been cleared up. But, she is also in pain, with her back, and the sciatic pain, but also she at 80 this year is suffering from arthritis pain several places. She had been on Celebrex, but it is the NSAIDS that caused the kidney function problems, so she cannot take any NSAIDS to help with arthritis pain. She is also on some pain medication, and we hope the epidural injections give her some relief from the back and sciatic pain.
Amanda, Jimbo, Heather, James, and Logan are doing well. I finally got to visit with them during Thanksgiving. It had been a long time since we had seen one another, so I was so thrilled that they got to come up, even though it was not long enough. Heather, their daughter will graduate this year, and already has decided to go into the Marines. She wants to be in the medical field, and feels enlisting will give her the education, the discipline and all she needs to succeed in the medical field. I am so proud of all of them. They are a wonderful wife and husband, Mom and Dad, and Amanda is an awesome daughter!
Jason has a new job, working with some electrical devices that he enjoys. So, he is doing okay. He would like to get a bit more established, and get an apartment up in the area where he is working. So, he is busy working to fulfill his goals, and he also plays guitar and sings with some of the local bands in the Dallas area. He really loves the guitar and playing. He has always been so great at that. I love music, dancing, and singing… and wished I had the talent many years ago, to do something in the music field.
But, I do write lyrics, and still practice my singing and playing the drums sometimes. I just bought a pair of boots and jeans (well waiting on the jeans to come in, I ordered them too large, so waiting on the smaller pair to come in), so I can go out and see if I can still “scoot a boot”. It has been a long time, and have not tried since both knee were replaced. So, I hope I can still love across that dance floor.
From all of us, myself, Mom, Amanda, Jason, and family… we wish you a very Happy and Merry Christmas! May the New Year 2016, bring you peace, good health, happiness, and hope. May you be blessed and overflowing with all things good!
Love you…. Pam (Rhia)
********** And Here’s A Merry Christmas Straight to You From Texas!*********
I feel as if i just completed my “Annual Christmas Letter” and once again, another year is flying by quickly. It is like with each year that passes, they seem to be shorter in length. Yet, it seems it takes me 3 times as long to accomplish anything!
Age, a subject most of us prefer not to talk about in length. Another thing is that with each birthday celebration, I feel like they come around twice a year rather than once. As I have told my son and daughter, Jason (who is 37), and Amanda (who is now 31), enjoy each moment, and savor all of the memories you can soak in, because as it used to feel when we are young, time seems to “drag” by,
Then we become adults with jobs, families, spouses, and the hectic times we live in, and time just flies by, and sometimes our memories of the good things we have seen, done, accomplished, been through, all tend to fade…
The holiday seasons always tend to bring back so many wonderful memories, of those Christmas’ when the kids were little, all of the decorating, baking, cooking, and parties that I had and went to, and how life gives us a great deal of good times, yet we tend to take them for granted. I know I have at times for sure.
Then with age, definitely comes some wisdom, and as I look back, I have had many “fulfilling” adventures, even though at the time I may not have realized it. Yet, when I think about my trips, whether vacations, with my parents, or with my own kids, or the times I took off on my own, and kind of let the wind carry me away… I always knew my “destination”… but it was always the journey to get there that made it exciting, and finally allowed to me look back and see just how “strong” (emotionally and mentally) I’ve been for the most part in my life.
So, as I try my best to “tap out” another Holiday Letter, I find myself almost as a loss for “words of true spirit” and good things from 2015. There is so much that has happened over the course of 20 plus months to my family and myself, that it will take another small “novelette” to give all of you the details of what has gone on.
The accident in 2014, that Jim, my husband was in, and the lawsuit that followed, finally came to a close the first week in November. Much to all of our surprise, it did NOT end on a “good note” for us. Basically, the jury decided it was NOT the truck driver’s fault (even though he completely ran over the back of our car and never slowed down etc.) and even though the other side tried to say our “car” was not in good shape, (they had someone say that the hood flew up while Jim was driving the car”, which I know and all of us know that did NOT happen, and never would have. My car, was in perfect condition to be on the road, and that hood was completely latched down, and did not just “suddenly” fly up. We have no way to “prove” it, but even our own lawyers tend to believe there was some “hush money”, and these “so-called” witnesses, that happened to have been outside in their yard, on a very busy I-45 coming into Dallas, and at that moment “saw” the hood open… that chances of that, you could win the lottery before that would happen. Yet, we have no way to prove that people lied on the witness stand, and I also feel there was something odd about the “jury”… I felt again, someone had been “paid” to keep their mouths shut, OR rule “no one at fault”… anyway, it left all of us devastated, more than you can even know. That accident has “wrecked” Jim’s life, especially physically, but mentally and emotionally. It totally wrecked my life, harmed my own health, and upset of course Mom, and my two children Jason and Amanda. So, due to a “truck driver” who was “on a cell phone with his brother”, and ran over the back of our car, we still basically “lost” any and all help with Jim’s medical bills, his future needs medically, he is unable to work full time due to what they now feel was more of a concussion than they first realized, he is partially paraplegic, and can walk on a cane some, but needs a wheelchair if it is a longer distance… and more than that, he moved back to Seattle 6 months ago. I am still not even sure why, other than he felt he was a “burden” on me… and that my health was suffering, and I was having to do everything, he could not cook, drive, even get down the steps by himself, and then I had Mom’s things I am doing also… thus we are still friends, and talking, keeping in touch… but whether we will ever “regain” our 13 YEARS together, 10 of those married this year in April, is still yet to be seen.
That is why partially I almost decided “not” to write this Annual Christmas Letter this year. I feel there is not a great deal of “good” that has happened to any of us over the course of 2015. In fact, Mom has not been well, and she has issues with her lumbar spine, and is getting ready to have lumbar injections in the next week or so. My internal “pain pump” also “stalled”, & I need surgery to replace it. But. 4 months ago I came down with two “lumps” one on each upper thigh, originally thought to be cellulitis. After 4 or 5 weeks of antibiotics, I was sent to a surgeon, to “incise” them, and he was NOT the doctor who should have done those procedures. I now have been going to a wound care specialist for 4 weeks in Dallas every week, so they will get well enough I can even have surgery. I also have lumbar/sacral back problems that need surgery, and without my Rheumatoid Arthritis medications, (they took me off them when I had the increase of infections with the cellulitis), so my pain level, without the pain pump, and even on oral medications do not even “touch” the horrid pain I’ve been in now for 3 or 4 months.
Mom also had some issues due to medications, and had some kidney functions problems, that they feel have been cleared up. But, she is also in pain, with her back, and the sciatic pain, but also she at 80 this year is suffering from arthritis pain several places. She had been on Celebrex, but it is the NSAIDS that caused the kidney function problems, so she cannot take any NSAIDS to help with arthritis pain. She is also on some pain medication, and we hope the epidural injections give her some relief from the back and sciatic pain.
Amanda, Jimbo, Heather, James, and Logan are doing well. I finally got to visit with them during Thanksgiving. It had been a long time since we had seen one another, so I was so thrilled that they got to come up, even though it was not long enough. Heather, their daughter will graduate this year, and already has decided to go into the Marines. She wants to be in the medical field, and feels enlisting will give her the education, the discipline and all she needs to succeed in the medical field. I am so proud of all of them. They are a wonderful wife and husband, Mom and Dad, and Amanda is an awesome daughter!
Jason has a new job, working with some electrical devices that he enjoys. So, he is doing okay. He would like to get a bit more established, and get an apartment up in the area where he is working. So, he is busy working to fulfill his goals, and he also plays guitar and sings with some of the local bands in the Dallas area. He really loves the guitar and playing. He has always been so great at that. I love music, dancing, and singing… and wished I had the talent many years ago, to do something in the music field.
But, I do write lyrics, and still practice my singing and playing the drums sometimes. I just bought a pair of boots and jeans (well waiting on the jeans to come in, I ordered them too large, so waiting on the smaller pair to come in), so I can go out and see if I can still “scoot a boot”. It has been a long time, and have not tried since both knee were replaced. So, I hope I can still love across that dance floor.
From all of us, myself, Mom, Amanda, Jason, and family… we wish you a very Happy and Merry Christmas! May the New Year 2016, bring you peace, good health, happiness, and hope. May you be blessed and overflowing with all things good!
Love you…. Pam (Rhia)
Tuesday, November 24, 2015
Trying to Live Life In A Moment... And Trying to Find my Way once again alone... to a "new Chaotic abnormal"....
Once again as the holidays grow near, I find myself struggling for what the true meaning of being Thankful is, what pure love is, and dealing with more heartache than I at times knew possible. I began my Annual Christmas Letter yesterday. I've made it a tradition now for many years to write a letter about life during that year, and share it with the few people, family etc that I send cards to. I always feel it makes even those far away feel "closer" to myself, and family. Yet, I had word this afternoon, a dear friend of mine,
sent me a message, and a spouse of 18 years or so, left. I am not sure of the details, but much like my own situation, not sure of the reasoning behind walking out the door. No truthful explanation, nothing... just walk out and let the door slam... I feel a deep sadness this evening, for my friend, and another friend of mine that also had the same thing happen last year during the holidays. Her husband of 20 plus years, did the same thing, just walked out the door and left... and again, under circumstances of dealing with really severe health problems, and when she needed him the most, he walked out.
When I took my vows in Vegas 10 years ago, and I wrote them myself, I meant every word I said... and for years and years, ever since we had moved into this house and made it "our home" mine, and his he wrote to me, along with our marriage certificate were framed and right here at my desk, plus the bouquet I carried hangs above them. They served as a reminder for me, that I had promised, forever, to grow old together, that we "paralleled one another and then met as one, just like two stars combining and intertwining and I would never allow anything of "life" to break us apart. I almost could say that entire vow, for years... and then, it totally was just "words on paper", "words spoke", mine from the heart I vowed, and I do not give up easily. But, whatever "happened"... I have had to "guess"... was it me, what all did I do to make him walk out the door? We had a few arguments, and both of us would of course in "defense mode" would come out with some terrible and say it to one another. But mine was truly just defending my own self, and not meant in truth. Yet, it was taken that way. But, still, I thought well, it was my surgeries and being chronically ill... not so... I was ALREADY CHRONICALLY ILL AND DEALING WITH CHRONIC PAIN WHEN WE MET! He knew before we moved back to TX, he knew before he proposed... In fact, I had filed for my complete disability about 6 months after we met one another... so "my health issues" although in 2007 through some of 2009 meant lots of surgery... yet, I did not expect to be down for "months" and was usually up and around ASAP... I did not want to be a "burden"...
No different than the accident he was in, March 2014... the 26th day of that month totally changed our lives, in so many, many ways... and even before he came out of the hospital, I told him, we would together find a "new
normal"... and he always talked about us growing old together. and sitting on a porch swing talking and laughing and always being together... Yet, here I sit alone, with Bub's... and he is thousands of miles away, states away... and till yet, I still don't know from him directly WHY? But, I have had to try and put one foot in front of the other, and find another new chaotic abnormal life for me. My Mom really got mad at me, then was in awe that I hung the ceiling fan MYSELF! She knew how badly I was hurting afterward, yet she told me today, she could never be as strong as me, or as intelligent as me, and that as the years pass, I amaze her at all I know, and do, in spite of how badly I hurt every day, and the illnesses try their best to take me down, and I won't let them... I refuse to give into the pain, or Lupus, RA, Sjogren's.. and now I have began to have horrible, terrible headaches again... I fear the migraines maybe back... and they had been gone for years... all but the ones with a Lupus flare... When I told her I put the new "insides" in my kitchen faucet today, she looked at me once again and said, "I would not even know what to do, what I needed or where to get it"... and I just said "Mom, I have lived all my life HAVING TO learn to do things myself.I never had the luxury of getting someone to put up a ceiling fan, or fix my lawnmower, or stop a dripping faucet, or paint the house, and the list goes on and on... change a flat, I just got through charging the battery on her car... and again, she could not believe I knew just what to do.... again, necessity makes you learn to do many things.... Yet, in all of that, I find sadness in the coming weeks. I am trying to get a new fur-kid for Christmas... and the woman that needs to come by for a house visit, will come next Monday...so I hope and pray that everything she sees is fine, and that Bub's gets along with a pup she is bringing... he always got along with Tazzer's, and with other pups at the Vet, etc... so I think he will be thrilled, I hope, and not jealous... He has became extremely protective of me, since Tazz passed away, and James no longer here... as far as people around me, he is not thrilled at all... So, I may have people judging me, I am trying to find things I can do, while I hopefully still can do them, that I enjoyed for so many years. In fact, I even "banged" on my drums for a bit today! Bless Bub's heart and the neighbors ears....HAHA... but that is why my Xmas present early to myself, the western boots and jeans... I want to go to the new place that opened here and see if I can find a couple of people my age that I can become friends with... and
I joined the church for the same reasons... plus the new pup will give new "life" to my home... yet, my home is in desperate need of so much work.. and since the suit money fell through, (I was going to put whatever bit I may have gotten into fixing my home up)... I still need it painted outside, and some rotten boards off the bottom fixed, I desperately need a new roof, and the floors laid in the kitchen, bath, and laundry room.
... plus I have new carpet for the music and spare bedroom, but it needs painting first, and ALL of the windows are in terrible shape. I am trying to get around to repairing them with the push pins and glazing, but it takes time and those windows are so brittle, I still have one completely cracked in the back, thank goodness it can't be seen, but it could fall out at any time, and then another one in that same room someone put "caulk" in a crack in it, so it needs to be replaced... then about a month ago... I think something happened but not sure what, I found a crack in one of my bedroom windows too.... I need a new fence all around my back yard, but I have a couple of dead trees in the fence line that need to be cut down... I have done some of it myself... and I am just going to put "hog wire" fencing or something inexpensive up... but again all of it takes time and money. Plus there are some things like laying the flooring, finishing the bathroom lights and fan... putting up the wall boards in my laundry room and so forth, that I can't do by myself... physically some of it I know I cannot do... I can't get in the attic to wire the lights and bath fan... I just would not feel easy doing that big of a job... and I can paint, but in some places outside my home is much taller than I would at my age, and especially with all of my neck, back, and osteoporosis issues, I would not chance falling...
I still face surgery for the new pain pump and I really need the lower back surgery. After this past couple of weeks, I realize I need that repaired too, or it is going to just get worse... and I am still dealing with the "wounds" from the abscesses and that is another thing, I have to drive by myself again up there and deal with that alone... it sucks... not that I can't but it still sucks... so I turn UP the radio and sing every song on the Radio as I drive... and block out the memories that still "haunt me"... kind of like the Brooks and Dunn song... one of their early ones... the Kix sang... Love may "die" but it "never leaves"... it is like "shackles and chains in a ghost like way, when it comes to loves memories... so true... and again it brings me back to what I want on my grave stone... "Here lies a girl who got everything she wanted, and who could ask for more.. Than to be Living in A Moment... You would die for... Ty Herndon was kind of a one hit wonder I think, but his song hit me strong years ago, and never forget those words... "to be living in a moment, loving every minute, living in a moment, you would die for".....
Thus the Lyrics...
Living in A Moment...
Well the world just lost two lonely people
The world just lost two broken hearts
The odds were against it but baby here we are
The world just lost two broken hearts
The odds were against it but baby here we are
In our own little place in our own little corner
This old cold world just got a little warmer
For the rest of my life I'm gonna hold you in my arms
This old cold world just got a little warmer
For the rest of my life I'm gonna hold you in my arms
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
If you never get rich on what money can buy
It don't matter to me, I'll tell you why
I've got it all when I'm holding you this way
It don't matter to me, I'll tell you why
I've got it all when I'm holding you this way
I'll live to love you, I'd die to keep you
Safe inside these arms that need you
I'll be loving you with the very last breath I take
Safe inside these arms that need you
I'll be loving you with the very last breath I take
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Ashes to ashes
Dust into dust
I'll lay beside you
Forever in love
Dust into dust
I'll lay beside you
Forever in love
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment, loving every minute
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment, loving every minute
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Living in a moment you would die for
Oh baby, I'm living in a moment I would die for
Oh, living in a moment I would die for
Oh baby, I'm living in a moment I would die for
Oh, living in a moment I would die for
Wednesday, November 18, 2015
Winter Weather and the Effects (Negative) on Bones, Joints, Pain, and Chronic Pain - Holidays, stress, and coping when Chronic Pain andor Illness Abound
Morning All! I thank each of you for "sticking" around, even though I have been somewhat absent over the past several days. I am still dealing with the "wounds" on both thighs, (abscesses) and finally see a "wound care specialist" tomorrow on Thursday. It means a drive to Dallas, but thankfully the weather has turned around, and we are supposed to have a few sunny days! I certainly hope so! The cold, damp, rainy weather does more to some than dampen their spirits, it can cause any type of bone, joint, arthritic, or chronic pain problem to escalate horrifically.
I have been dealing with of course NOT having my internal pain pump, which is already bad enough. Even with strong pain medication orally, they can't compete with the medication given from the pump. Then you add on top of that, all of the pain, stiffness and swelling from the Lupus, RA, other arthritic issues, and joint problems, and believe me, it causes a world of hurt, over and above what pain I already have.
I've read several articles lately on chronic pain. For the most part, I've been "aware" of just how badly weather has an effect on pain since I was 17 years old. Long before doctors would say "yes" definitely. I first noticed it with migraines. I was plagued with those for all of my adult life. In fact, they were much worse, led to me losing several jobs, because at the time there was no real answer for medications, for even why I had them, and facts that we now know about all types of migraines, were just not around back then. I also began to have joint problems, that even needed surgery by the time I was 21. After a severe knee injury that led to me having extensive knee surgery at the age of 15, and then another surgery on that knee when I was 21, from there I was also plagued with many problems with joints. I had several arthroscopic joint surgeries well before I was diagnosed with RA and Lupus.
I had an elbow, shoulder, and then another shoulder, wrist, and really needed another elbow surgery by the time I was 40. From there both knees has surgery several times, before finally having both of them replaced in 2007. In fact in 2007, that one year I went through 7 or 8 surgeries, related all to joints. Even the right shoulder, finally led to a total "reverse" shoulder surgery in 2011, and then cervical neck surgery, plus I face a lumbar/sacral surgery, that has been put off by other health problems.
But, I vividly remember how much worse my migraines, and then later joints would hurt when we had a huge weather change. I was in my doctors office many more times, or even in the emergency room with migraines when the weather "acted out".... a high humidity, very stormy weather, a drastic change from cold to hot, or hot to cold, sent me straight into more pain than I could deal with. At that time, there was little "medical proof" about the effects weather had on these types of health problems, but I cannot recall how many conversations I had with all of my doctors how about the weather had a dramatic effect on the pain level I would have.
Now, after many years, it has been proven with studies that it certainly does have a dramatic effect on the body, especially chronic pain and/or chronic illnesses. It is no different than when I had my 1st knee replacement, there are times, that "knee" hurts so badly, I would swear I never had surgery yet on it... but just like those who lose a limb and have "phantom limb pain" so is also true with those who have joint replacements. That is true for me with both knees, and my shoulder. There are times, especially during severe weather, that they hurt as they did before the replacements.
Holidays are upon us, and with the hundreds of thousands of us that suffer each and every day from some type of chronic illness, and/or chronic pain, holidays can prove to have a "mixed blessing"... when you have an illness such as an autoimmune illness, that already causes fatigue, and all types of symptoms, having a busy holiday schedule can definitely contribute to feeling even more fatigued, more exhausted, and the added stress often leads many of us to having bad flares, and even being hospitalized.
Holidays usually involve family. Like myself, with some of my family hours and hours away, that is sometimes the only time I get to see my daughter, and her family. So, we spend a great deal more time getting ready for family that is far off, or doing holiday baking, parties, and putting up decorations, planning meals, running and doing shopping, and all of the very things that can make holidays wonderful, but also make chronic illnesses and pain horrible in the process. We tend to not sleep as well, not eat as well, not take care of ourselves as well, and do way too many hours of overdoing it, thus leading to us feeling even worse than usual.
But, how do we find a "balance" when such times are upon us? That is a very difficult and almost at times impossible task... you can defer making a huge dinner, to going out to eat, you can order presents online, rather than running around 4 cities to find the right gifts. If you have a huge home, or are expecting a group to stay several days, rather than trying to do all of the cleaning and so forth, you could hire someone, or recruit others to help with those things. Or you could offer to help with a hotel room, or ask family well ahead of time if they would consider spending part of the time at your home, and then a day or two in a hotel. As difficult as that may seem, sometimes it is best for you and them. If you are too exhausted and overwrought in "taking care" of family and friends, then you are not able to "be there" in spirit and health to visit and enjoy the time together. With my home being so small, I just simply do not have the space for my 3 Grandkids, my daughter and her husband. When the kids were small they stayed a couple of times. But, after the kids getting older, and needing more space, a 2nd bathroom, and so on, they decided staying in a local motel here in our smI've made some adjustmall town was so much simpler for them and everyone. I realize that some may not have the finances to allow that, and other plans must be made. Yet, if you can at least take a portion of that off your shoulders, all can enjoy the time much better usually.
I know I have cooked many, many holiday dinners, all myself. I used to decorate every room, clean every speck of the home myself, and have all in perfection. But, as I began to have health problems, my "body" just became rivaled with fatigue, pain, and problems that do not allow me to do nearly as much as I used to. It is very difficult to contend with, and I surely know the guilt I feel even till this day about not being able to do what I used to... but you must accept those facts, and find new ways to enjoy family, take the burden off of everyone, so stress does not plague your enjoyment together.
I've made some "adjustments" already for the holidays for this year. Rather than try to get out of huge tree, and pull out all of the boxes in the attic with decorations, I "settled" for a smaller tree, that I put on my beautiful round table in the living room. I had many of my special ornaments and decorations in my camphor wood chest, so they were easy to get to. I took all of those out, and had plenty for the tree, plus used some of the other things to decorate the rest of the living room, as well as some in my office. No, it is not the huge tree I loved so much. But, it is a 4 foot tree. By the time I got the lights, and all of the special ornaments on it, and surrounded it by a few treasures around the house, it is simply beautiful. Plus this is the 1st time I can remember getting my tree up well before December 1st. I usually wait till the first week of December to put it up. But, I went ahead and bought the tree, and since I had it, I went ahead and spent a bit of time a couple of days finding my other stuff, and then decided to go ahead and put it all together. In fact, I just found my crystal candle holders, and got them all out and cleaned them, so I could get the candles in them with my candle rings. All of it things I had around the house. I need to buy a few more tapered candles, but I had 4, so that works until I am out sometimes later today to pick up a few more. Anyway, I have enjoyed the decorating this year almost more than some others. For one, because it is "different" but in a good way. For 2 I have not felt pressured to get it done, and have just taken my time, finding things to use from around my home. Even the tree skirt. I had some "quilted" white cotton, a piece I had in my sewing items. It is just big enough to make a perfect "tree skirt" and looks like snow, with the quilting and being white. So, I also have not spent a fortune to decorate. I did buy the new smaller tree, but other than that, I did buy a set of smaller lights yet even they were only like $2.00 at one of the local dollar stores, so I did not have to go into debt to have a wonderful tree and decor for myself and Bub's.
We are waiting to get our wonderful Christmas "miracle"! My hopes are that by Christmas we have a new fur-baby for our present this year! It seems perfect since Tazz, my Pug, who passed away a couple of months ago, was a Christmas present back in Seattle! She would be turning about 14 years old this month, around this time in fact! IT seems like yesterday we went to pick her out. I will never forget how she "bounced" up on the sofa and came running to me! There were still several brothers and sisters to pick from, but they put her up on the sofa, and she ran straight to my arms! I knew that instant she was my special gift! In fact, she is in her little locked cedar chest, with a prominent place under my Christmas tree right now. She shall always be my "greatest gift" as far as human gifts go... she lit up the room every time I walked in. But, Bub's and I have I think bonded even more since she passed away. We always had a "bond" but after both of us suffering through the loss of her, we seemed to grow even closer to one another. He is even more protective of me than he was, and he was always very watchful over me. So, I know both of us will be so thrilled to have a new addition to our home. It has not quite been "home" without Tazzy. Even though no other pup will ever take her place in my heart, I know she is happy, playing and will forevermore be a pup, and someday she will see me and run into my arms again, just like the very 1st time we saw each other! I painted her toenails that morning she passed away. The evening I picked her out, the lady painted a back toenail red, so I would know she was mine. So, I sent her to heaven with red toenails. I will know her without that, but I shall truly be so warmed to the core to see her run up and jump into my arms someday when I join her and my family members and friends in heaven.
Between the illnesses, the pain pump going out, the abscesses on each thigh, losing the trial from the accident, being "single" again without ever even expecting it, losing Tazzy so suddenly within 24 hours as I did, and trying to deal with Mom and her also having health issues, it seems 2015 has been another one of those very, very extremely tough years. I hope and pray that faith will lead me and my family, into a new, less stressed, better health time in 2016!
May somehow our nation and our world find peace and harmony!
And may each of us know and understand the true meaning of the Spirit of the Holiday Season...
With my love, respect, and may you find peace in your heart, and a well health filled 2016 also!
I have been dealing with of course NOT having my internal pain pump, which is already bad enough. Even with strong pain medication orally, they can't compete with the medication given from the pump. Then you add on top of that, all of the pain, stiffness and swelling from the Lupus, RA, other arthritic issues, and joint problems, and believe me, it causes a world of hurt, over and above what pain I already have.
I've read several articles lately on chronic pain. For the most part, I've been "aware" of just how badly weather has an effect on pain since I was 17 years old. Long before doctors would say "yes" definitely. I first noticed it with migraines. I was plagued with those for all of my adult life. In fact, they were much worse, led to me losing several jobs, because at the time there was no real answer for medications, for even why I had them, and facts that we now know about all types of migraines, were just not around back then. I also began to have joint problems, that even needed surgery by the time I was 21. After a severe knee injury that led to me having extensive knee surgery at the age of 15, and then another surgery on that knee when I was 21, from there I was also plagued with many problems with joints. I had several arthroscopic joint surgeries well before I was diagnosed with RA and Lupus.
I had an elbow, shoulder, and then another shoulder, wrist, and really needed another elbow surgery by the time I was 40. From there both knees has surgery several times, before finally having both of them replaced in 2007. In fact in 2007, that one year I went through 7 or 8 surgeries, related all to joints. Even the right shoulder, finally led to a total "reverse" shoulder surgery in 2011, and then cervical neck surgery, plus I face a lumbar/sacral surgery, that has been put off by other health problems.
But, I vividly remember how much worse my migraines, and then later joints would hurt when we had a huge weather change. I was in my doctors office many more times, or even in the emergency room with migraines when the weather "acted out".... a high humidity, very stormy weather, a drastic change from cold to hot, or hot to cold, sent me straight into more pain than I could deal with. At that time, there was little "medical proof" about the effects weather had on these types of health problems, but I cannot recall how many conversations I had with all of my doctors how about the weather had a dramatic effect on the pain level I would have.
Now, after many years, it has been proven with studies that it certainly does have a dramatic effect on the body, especially chronic pain and/or chronic illnesses. It is no different than when I had my 1st knee replacement, there are times, that "knee" hurts so badly, I would swear I never had surgery yet on it... but just like those who lose a limb and have "phantom limb pain" so is also true with those who have joint replacements. That is true for me with both knees, and my shoulder. There are times, especially during severe weather, that they hurt as they did before the replacements.
Holidays are upon us, and with the hundreds of thousands of us that suffer each and every day from some type of chronic illness, and/or chronic pain, holidays can prove to have a "mixed blessing"... when you have an illness such as an autoimmune illness, that already causes fatigue, and all types of symptoms, having a busy holiday schedule can definitely contribute to feeling even more fatigued, more exhausted, and the added stress often leads many of us to having bad flares, and even being hospitalized.
Holidays usually involve family. Like myself, with some of my family hours and hours away, that is sometimes the only time I get to see my daughter, and her family. So, we spend a great deal more time getting ready for family that is far off, or doing holiday baking, parties, and putting up decorations, planning meals, running and doing shopping, and all of the very things that can make holidays wonderful, but also make chronic illnesses and pain horrible in the process. We tend to not sleep as well, not eat as well, not take care of ourselves as well, and do way too many hours of overdoing it, thus leading to us feeling even worse than usual.
But, how do we find a "balance" when such times are upon us? That is a very difficult and almost at times impossible task... you can defer making a huge dinner, to going out to eat, you can order presents online, rather than running around 4 cities to find the right gifts. If you have a huge home, or are expecting a group to stay several days, rather than trying to do all of the cleaning and so forth, you could hire someone, or recruit others to help with those things. Or you could offer to help with a hotel room, or ask family well ahead of time if they would consider spending part of the time at your home, and then a day or two in a hotel. As difficult as that may seem, sometimes it is best for you and them. If you are too exhausted and overwrought in "taking care" of family and friends, then you are not able to "be there" in spirit and health to visit and enjoy the time together. With my home being so small, I just simply do not have the space for my 3 Grandkids, my daughter and her husband. When the kids were small they stayed a couple of times. But, after the kids getting older, and needing more space, a 2nd bathroom, and so on, they decided staying in a local motel here in our smI've made some adjustmall town was so much simpler for them and everyone. I realize that some may not have the finances to allow that, and other plans must be made. Yet, if you can at least take a portion of that off your shoulders, all can enjoy the time much better usually.
I know I have cooked many, many holiday dinners, all myself. I used to decorate every room, clean every speck of the home myself, and have all in perfection. But, as I began to have health problems, my "body" just became rivaled with fatigue, pain, and problems that do not allow me to do nearly as much as I used to. It is very difficult to contend with, and I surely know the guilt I feel even till this day about not being able to do what I used to... but you must accept those facts, and find new ways to enjoy family, take the burden off of everyone, so stress does not plague your enjoyment together.
I've made some "adjustments" already for the holidays for this year. Rather than try to get out of huge tree, and pull out all of the boxes in the attic with decorations, I "settled" for a smaller tree, that I put on my beautiful round table in the living room. I had many of my special ornaments and decorations in my camphor wood chest, so they were easy to get to. I took all of those out, and had plenty for the tree, plus used some of the other things to decorate the rest of the living room, as well as some in my office. No, it is not the huge tree I loved so much. But, it is a 4 foot tree. By the time I got the lights, and all of the special ornaments on it, and surrounded it by a few treasures around the house, it is simply beautiful. Plus this is the 1st time I can remember getting my tree up well before December 1st. I usually wait till the first week of December to put it up. But, I went ahead and bought the tree, and since I had it, I went ahead and spent a bit of time a couple of days finding my other stuff, and then decided to go ahead and put it all together. In fact, I just found my crystal candle holders, and got them all out and cleaned them, so I could get the candles in them with my candle rings. All of it things I had around the house. I need to buy a few more tapered candles, but I had 4, so that works until I am out sometimes later today to pick up a few more. Anyway, I have enjoyed the decorating this year almost more than some others. For one, because it is "different" but in a good way. For 2 I have not felt pressured to get it done, and have just taken my time, finding things to use from around my home. Even the tree skirt. I had some "quilted" white cotton, a piece I had in my sewing items. It is just big enough to make a perfect "tree skirt" and looks like snow, with the quilting and being white. So, I also have not spent a fortune to decorate. I did buy the new smaller tree, but other than that, I did buy a set of smaller lights yet even they were only like $2.00 at one of the local dollar stores, so I did not have to go into debt to have a wonderful tree and decor for myself and Bub's.
We are waiting to get our wonderful Christmas "miracle"! My hopes are that by Christmas we have a new fur-baby for our present this year! It seems perfect since Tazz, my Pug, who passed away a couple of months ago, was a Christmas present back in Seattle! She would be turning about 14 years old this month, around this time in fact! IT seems like yesterday we went to pick her out. I will never forget how she "bounced" up on the sofa and came running to me! There were still several brothers and sisters to pick from, but they put her up on the sofa, and she ran straight to my arms! I knew that instant she was my special gift! In fact, she is in her little locked cedar chest, with a prominent place under my Christmas tree right now. She shall always be my "greatest gift" as far as human gifts go... she lit up the room every time I walked in. But, Bub's and I have I think bonded even more since she passed away. We always had a "bond" but after both of us suffering through the loss of her, we seemed to grow even closer to one another. He is even more protective of me than he was, and he was always very watchful over me. So, I know both of us will be so thrilled to have a new addition to our home. It has not quite been "home" without Tazzy. Even though no other pup will ever take her place in my heart, I know she is happy, playing and will forevermore be a pup, and someday she will see me and run into my arms again, just like the very 1st time we saw each other! I painted her toenails that morning she passed away. The evening I picked her out, the lady painted a back toenail red, so I would know she was mine. So, I sent her to heaven with red toenails. I will know her without that, but I shall truly be so warmed to the core to see her run up and jump into my arms someday when I join her and my family members and friends in heaven.
Between the illnesses, the pain pump going out, the abscesses on each thigh, losing the trial from the accident, being "single" again without ever even expecting it, losing Tazzy so suddenly within 24 hours as I did, and trying to deal with Mom and her also having health issues, it seems 2015 has been another one of those very, very extremely tough years. I hope and pray that faith will lead me and my family, into a new, less stressed, better health time in 2016!
May somehow our nation and our world find peace and harmony!
And may each of us know and understand the true meaning of the Spirit of the Holiday Season...
With my love, respect, and may you find peace in your heart, and a well health filled 2016 also!
Sunday, November 15, 2015
Medicare Advantage Plans, Kidney Stones, Pain, and "pain" from life and all we know... trying to find that positive light admist all the negative's....
Thank you so much Tracie L Carlson and Lourdes Villegas-Anaya !!!! I so appreciate the kind words, and giving me the courage to try and move past all of the nightmare's life can pitch at us, in any given moment. None of us are "immune" to life's way of trying to take us down further each time things happen. Especially when SO MANY happen all at ONCE! I also know that I am NOT the only person on this Earth with a world of problems, and a universe of pain and suffering. I have tried to find a way back to the "light" in my life... although not an easy task. In fact, you are both correct, a great deal of putting up the tree so early, was so that myself and Bub's can find some warmth and spirit since this nation and world seem to be so totally cold hearted and full of so much indignation, terror, and things we usually imagine to only happen far away from us. Yet, that is not true. Whether we are suffering from illnesses and pain, or heart break from those we thought never would cause it, or the loss of someone so special, like Tazz, and my Dad who passed away 10 years ago, and I as I say the "loss" of "oneself" which when health deteriorates so badly, and chronically, it is so very easy to "lose" who you thought you were... we all change and grow, just a fact of age, wisdom (for some), and the way our lives are meant to be... but when you feel as if you have lost your very core of spirit, you inner most power, your ability to see the world with different eyes, trying to not become bitter, and full of loathing, all too often of your own body, and mind.. the fight is not a simple one, nor is being alone to deal with it ever easy either. Even now for me, being in a room filled with people I feel totally alone, and misunderstood. Of course with Tazzy being a Christmas present and was born about the time she passed away 14 years ago, has made the loss of my one fur-kid even more painful. Thank goodness Bub's seems to be feeling better, and after getting his rabies vaccine and getting those terribly long nails trimmed, and without having to muzzle him, :):) I think his feet maybe a bit sore... now he cries for me to help him on the sofa. But, I also realized that he is almost 6 years old! My papers from the Vet said he was 5 years and 9 months old... which I knew he was pretty close to being between 5 and 6 but time has flown by so fast. I look at the pics of him, when I got him home, he was so little, he had a place on my desk he laid... and Tazz the same way, she was so tiny, I could hold her in one hand when we first brought her home... guess that is why that seems like yesterday, and how hard it has been for me to except her passing away.... but I found her and Bub's ornaments, I had bought them over the past 4 or 5 years in the chest yesterday, and they hang on the tree along with Tazzy underneath it... she can too "see" the warmth and love she still has from her home..... And the Christmas Letter... yes I am sure I will find something positive to say, but in that, I will also have to tell the family and friends about all that has happened in the past year. That is why I write the letter, to catch up to family, we do not get to see or talk with very often. So, those letters remain a lifeline from our home to theirs, and from their home to ours. I still have so much to get done... I have to make a decision about my insurance and Mom's - and that is not an easy choice... I came to find out an interesting fact about Medicare Advantage Plans - OUR doctors are NOT the ones who "take" or do not take these types of plans at all. In fact, they have no say so in it.... ONLY the "insurance" companies make that choice... They "choose" whom they will be an in-network provider, and the physicians cannot say no, but they can't have the plans either, unless the insurance companies themselves "choose" them... Now I understand why my hospital is not on the policy we have now, nor some other providers. Come to find out they all work that way... I know I was totally dismayed that NO HOSPITAL within 40 miles of us took the insurance we currently have... that seemed so ridiculous! Well, NOT the hospital's fault... the insurance makes that decision!!!! Now this is mainly for Medicare Advantage Plans specifically, and I do not think it effects like Medi-Gap policies and so forth... thus just because online the companies may tell us that "this doctor" will be covered, by Jan 1st, they can change their minds and NOT cover a doctor we need to see... Talk about a mixed up mess!!! Our dear government at work... I can guarantee you, THE CONGRESS has a huge say over these plans specifically, and they make it as hard as possible, since many of us on them, are below the age of 65, because we are on disability, not "retirement" age yet... Anyway, talk about one messed up situation.... I was all set to go back to Humana for 2016, then I noticed our PCP was not listed as a network provider... thus I asked Thursday while I was there, and come to find out no, but it is because the "insurance" is not "allowing" them to be a in-network provider, not that they do not want to!!! It made me so furious... Humana COVERS our hospitals and so forth BUT not my PCP! And I have no guarantee after Jan 1st, they will "cover" the others they say they will online... it is a huge mess... and for me to try and get a "Medi-gap" policy would be well over 500.00 a MONTH or more... so it is no "win-win" for anyone... except the insurance companies themselves... and "United HealthCare" Secure Horizons SPONSORED BY AARP!!! is the worst! I have had nothing but problems with them all year long, plus as I said they do not cover our local hospital, my Rheumatologist, our Urgent Care Center, which seems totally stupid, and so forth.... anyway, so that is just one more thorn in my side to deal with.... along with all of the rest... again thanks so much, each of you... I did not make it to church again this morning, but I tried to go see Mom yesterday, and by the time I was in the car, I got sick to my stomach, and had to come back in the house, and let her know there was no way I felt like going over... same way today... my stomach is still "not right" but I am in so much pain, again I have to wonder if I don't have a kidney stone... the past two mornings, around 3AM, I awake to horrible and severe lower back, lower abdominal, pain... and down the fronts of my legs... which is usually how I know it is kidney stones... the leg pain, but down my front thighs.,,
Thursday, December 18, 2014
Missing Many of Life's Amazing Things ... through the Eyes of an Autoimmune Patient
Memories of What The Past Life meant back then, and How to “begin” Anew Once Your Life has been totally turned upside down and pulled inside out…
I started writing this yesterday evening. Then I worked on it some this morning. I have a great deal to add. But, I am in the middle of having the Flu. I woke up yesterday morning with the worst headache, even worse than any migraine... and my entire body from head to toe hurt and ached. I knew I had to been running a fever, thus I was. It started at 99 degrees, and quickly began to rise even after aspirin, Tylenol.... it was already up to almost 101 by the time I decided what to do. First I called my PCP. But was on hold at least 20 minutes with them. Thus even though I did get to leave a message for my doctor, I knew he would probably need to see me. The last thing already figuring I have the Flu, and then my Autoimmune system compromised.... I decided as badly as I felt to go to our local Urgent Care Center. So, I did. Thankfully when I arrived hardly no one was there and I got into see the doctor quickly. He did verify I have the flu. I got the Tamiflu script and he told me to be prepared for a horrible cough to come. So, he gave me cough medication to be prepared for that. Anyway, I wanted to at least get this much posted... and I promise when I am feeling better to finish it.... but here is the beginning of just how much your life changes when an autoimmune or chronic pain or illness comes along...I had this come to mind yesterday afternoon. I was doing something in the kitchen and I got to thinking about just HOW MUCH life has changed within the past 20 years. Some of those things are okay to gone and blown into the 4 winds. Some although, have created turmoil in our lives, and honestly it scares the hell out of me.
When I think back just 10 years ago, Jim and I had first met, in 2003, on a Memorial Day Weekend. I was searching at that time for the “one” special person in my life that I could share everything with. I actually went to Seattle thinking I had found him. Yet, that relationship was never meant to last. As I’ve seen and felt now, I realized that relationship was never really meant to be. It was more of a stepping stone to get me out of Texas, out of the horror of Domestic Violence that had been dragging me into the black hole of no where. I needed a drastic change in order to get my own life back, to get a new perspective on life, and a new, The ”odd” part of it all, is I went not truly prepared as far as my clothing, my attire was more for a lighter cold, and not a heavier cold weather. Fortunately, the weather was fairly nice at that time of the year (I had arrived in Seattle at 8:00 pm Halloween Night 2001).
I think back on the times even before Seattle, before the Autoimmune Illnesses began to rear their ugly heads. Those days are for the most part all gone. The years I could decorate my entire home for Christmas. From the kitchen, bedroom, to the living room, kids rooms, bathrooms and even outside the house. Everything was in a “Kris Kringle” theme. I was always so Christmas oriented, and I never wanted it any other way. That was just one piece o the puzzle of life, that always seemed to make sense.
Never back then did I ever give a thought that life would be “different” and that I would not be in a situation that I could no longer do so many of my daily living activities that I had become accustomed to over the years. I had a few instances that due to Migraines I was to bow out and not attend a few things. Yet, never would I have dreamed within 10 short years, I would never be able to do so many of the things I loved to do again. But, it had and had happened.
I can’t blame it on anyone or anything, I’ve just fallen into a realm of life, that has robbed me of the beautiful things I used to be able do. This is an insight as to just how much my life, as well as many others lives, have changed from the bottom to the top in so many different ways. We don’t even realize how many things are never the same. I think we become so complacent in some ways, while our concentration then goes to other places where we never had to go. For instance, new doctors, all of the different diagnosis, medications, what we can do with diet, exercise, different and alternative ways to help ourselves feel better. I think for me I went into the “untrue” mode. I refused to believe I had a chronic illness or illnesses that would take my life and flip it all around. Then for many, we go from doctor to doctor, fighting insurance companies to pay, finding out some doctors that we think “should know” about our illnesses do not. Physicians had so “specialized” themselves to the point that one Rheumatologist may deal with RA, but not really treat Lupus. Another may deal with Lupus, but not really deal with MS. Multiple Sclerosis in itself a strange disorder. It is more of an “autoimmune illnesses that harms the nerve endings” thus often time a certain type of Neurologist maybe the doctor to see. Yet again some Neurologists know little or do not really treat MS. So, it can be an extremely frustrating, trying, wanting to give up time that will actually take YEARS in many cases to get the “right” physician, who knows the correct information, and can properly give you a diagnosis, that ultimately can then be addressed and treated.
So, a couple of days ago, I got to thinking about the “little everyday things” I no longer do. The list continues to get longer and longer. I no longer cook as much from “scratch” as I used to. Baking has always been one of my favorite things to do. An example is just about every year since we moved here in this house, I have made home made pumpkin, date, banana breads and more. Then one year I actually made “mini-loaves” of fresh home made baked bread right out of the oven. It turned out so beautifully. I also make sugar cookies, cut out and decorated, fruitcake from my own “family” recipe, fudge, sometimes peanut brittle, cookies with the kisses in the middle, and more. We always wrapped it all up individually in decorated plastic wrap, then made a “Christmas Sack” for each of our 5 closest neighbors. I was a highlight of our holiday. I spent weeks and weeks baking and cooking hand and home made everything.
This year things are so just under the radar of holidays, that we probably not give anything to the neighbors, if so it will be only a few slices of fruitcake. I’ve not made any of the breads, the cookies I am not sure if I will feel like it, especially now since I have the flu! I don’t do as much baking from scratch at all, but have had to go to boxed cake mixes and store bought frosting. Cookie mixes rather than me put them together myself, and same way with pies. I often buy the “canned” fruit, or creme - like key lime or lemon, then I do make a crumb topping for them. So, that is just one of the many things, I no longer am really able to do. Either fatigue, or being so slow at everything, or being in pain, or feeling ill… even my own “daily home” cooking has fallen below “home made” which is NOT good because everything is full of salt, sugar, even the “light”, “low fat” or low carb stuff tends to be not that healthy at all,
I used to mow my lawn, and do all of the yard work. From planting, to gardening, to flower beds, and house plants, I did it all. Now I do well to half way rake up leaves, a couple cans at a time, and forget the mowing, weed eating, and even trying to hoe is very difficult for me.
I can no longer wear my 5, 6, and 7 inch platforms heels. I have loved those so much even before they became all the rage again in the last couple of years. I have 3 pairs of very high heeled platforms that I totally dream of wearing again. When i go into the shoe store it almost makes me sick to see all of the incredible high heels and platforms. yet I cannot even attempt
to think about wearing them out in the public. I would certainly now fall, due to my artificial knees, and taking a chance of a fall, just is not appealing when I have “severe osteoporosis”.
Of course no snow skiing which was my biggest thrill. I can still somewhat play the keyboard, piano, and I can still band around a short while on the drums but not for long.
Some things I can do, but it takes me 20 times longer than it used to. If I am getting dressed to go out somewhere special I must start at least 4 hours early if not more. I am then lucky if I am ready on time, Even typing this, of course I also have the flu at this point, but my wrists, thumbs, hands and fingers are beginning to hurt and become too stiff to type. The brain fog hinders what used to be a mind that could spin around in 15 directions all at once, and I could multi-task and get them all done and feel wonderful as I did them. I miss college classes. I miss being able to walk 5 or even 10 miles a day. I miss traveling, vacationing, heading out for a weekend get away.
I get sick of planning a day around being sick. I hate getting up and never knowing if I will feel “okay” or horrible that day. I am pissed that I can’t do things like put up my light fixtures, finish mudding the bathroom walls, painting the outside of the house, laying my flooring in my bathroom and kitchen and all of the DIY things I used to do on a daily basis, never giving a thought that I may not be able to do the little things, like get flowers for Christmas out to Dad’s and my Grandparents Graves. By now I would have Dad’s Tree out there all decorated… and Poinsetta’s for my Grandparents.
Sometimes it is difficult for me to type, to write, and to clip coupons. My hands don’t seem to work as well, and neither does my brain. I FEAR that if I don’t write my books (the next 2) very soon, I may lose the “brain power” wording, spelling, and aptitude it takes to write a book and get it published.
There are days that even the simplest words seem impossible to spell. Maybe the simplest sentence I have problems with finishing properly. I am one to NOT use the same word over and over again. But, without the Thesaurus, I would never have the brain as I used to have that remembered everything, no matter how large or small it was. Days I lose that ability to find them within my own thinking. I used to be a grand speller. I had 100’s on every spelling test and then I won many spelling contests because I was so great as a speller. People cam and asked me how to spell a certain word, and used to I could rattle it off without hesitating.
Being able to learn new things. That was my forte’. Any and everything I didn’t know something about, and was interested, I wanted to learn. And, I did. Whether it was flying a plane, or knowing how one flies was remarkable to me. Even my “Annual Christmas Letter” that was usually all decorated with a border and colors for the typing, got left with me printing the letter on regular paper, in black and white, with no border. It was too much this year for me to deal with and I knew I needed to get the cards out before it was too late!
More to come......
And thus it continues... the brain fog is so bad, I forgot I had already posted part of this... so here is more.....
Even at this, I am almost feeling like I got "off topic" of what I wanted to say... but I shall post this next installment....
It continues to be the “little” things I had enjoyed so much in my years before I became chronically ill. I was able to do just about everything from going to college full time at night, working full time, taking care of my two kids, a home, a mortgage, car payments, and everything that goes along with those things.
The day that I knew for certain I would no longer be able to hold down a full time job anymore, was on of the most depressing, the saddest, the fearful, time of my life. I had no idea how I would make it in Seattle. Jim and I had already met, but he was living with a friend over by Lake Washington, he had a full time job, that actually was knocked to part time, so he had his own portion of rent and bills to pay. I was very leery of anything at that time…. from even thinking about Jim and I, we had just really met, to finding another at least part time job. I had rent monthly, and a car payment monthly, plus my bills which were not that bad with just me. So, I looked actively for a job daily, from the paper, online, asking around, and even went for a couple of interviews both at banks. Both seemed like great positions, but they also seemed very stressful, and it would mean me working MORE hours that I already had been working, which was one reason I got ill in the first place. So, I was offered both, but turned them down graciously. This was about time my lease for my apartment would be coming up. I knew that the woman above us was not thrilled with our TV (which was a 16 inch tiny TV with an antenna inside, or she would gripe if we smoked outside on the deck… said she could smell it… well there were lots of wooded areas, and honestly I think she was just jealous that I had found someone that was coming over fairly often. Anyway, the problem was my own next door neighbor. He was the one with the very loud music and television. But I knew I needed to go and not sign into another year’s lease. So, when it came time to make a decision, I decided to take my stuff, and move in with Jim and his room mate. It seemed “smart” and cheaper at the time. We did have some beautiful memories of Lake Washington, and it was an incredible several months we spent there before we decided it was more than time to move out and find our own place. We did just that. We moved just North of Seattle into Everett. Smart move, loved our apartments and the manager was such a sweetheart….
It seems from there things began to look brighter… and then in 2005 March, Easter Sunday, I lost my Dad to a brain infection from a knee surgery that just never turned out right. He had that surgery on Feb 15th 2005 my birthday. So, there is always mixed emotions when I try to celebrate.
We found ourselves going ahead with our marriage plans in Vegas about 10 days after going back to Seattle, for I knew Dad would have wanted it that way. Then we also knew it was only a matter of time, and I would need to be back in Texas, close to my Mom. Being an only child, and my Dad took care of everything, Mom was not even able to put gas in her car.
At the time, I had already hired an attorney, and was in the process of my 2nd appeal for my Disability, Social Security benefits. After a short time in California, for a job Jim got that was not working out, we loaded up the U-Haul once again, and headed for Texas. We had no clue what we were going to do when we got there, but we knew we had to come back. So on December 19th, 2005 we arrived in Ennis Texas. I had already checked on apartments, so luckily we got into one just a couple of days after arriving. They were so nice and hurried to clean it, touch it up and laid new carpet. So, we celebrated that Christmas in Ennis. Actually both of my kids, and my two Grand children got to come up and we had Christmas at our apartment. We had bought the very last “real” Christmas tree in town, and it was scrawny but we decorated it, and it turned out beautiful.
We spent a year there, and in about August 2006, I got word I would need to make a trip to Seattle for my “hearing” for my disability. We flew back, not knowing what to expect, and when we left I did not know for sure if I had “won” my case or not. It might be a month before the judge sent me the letter. But, I could tell from his comments in the hearing that he probably would give me a favorable outcome. Thus about 5 weeks later, I got my letter saying I did get my full disability and they paid me retroactively back from 2004, so I got a fairly good sized check. We looked for a house, small, but something we could work on, yet not too much work, and thus we found our house in December 2006, and got to move in after much DIY renovations, paint, redoing floors, and so forth, at the end of January 2007.
My disability then meant I had Medicare. I took a Medicare Advantage Plan, and then the real fun began. I had 8 surgeries in 2007 alone. Two total knee replacements, a shoulder replacement, wrist surgery, bladder surgery, my other shoulder had been scoped, and my hips injected a couple of times. My left elbow had surgery, and the right one was giving me issues, but I was fortunate enough that my right elbow and so far both hips have been able to stay together enough that the corticosteroid injections have kept me from having surgery.
In 2009, I went to a new PCP (Family doctor) that after a couple of months of seeing me, did a great deal of blood work. I had even mentioned Lupus, RA, or some other type of autoimmune disorder. He thought so also, thus the blood work came back showing I was positive for probably Lupus, RA, and later confirmed I had Sjogren’s and Raynauds.
After those diagnosis, things went nuts from there. Rheumatologists, several that really were not specializing in my type of issues. The pain had already sent me to a pain doctor, who was treating me for the chronic pain, migraines and all of the pain that went along with the AI illnesses. In 2010, he made the decision I needed an “internal pain pump” to try and get my pain more under control. So, October 2010 I underwent yet another surgery, having it put in.
All of that and more are why my heart breaks when I watch someone on Television skiing down a slope full of white powdery snow. Or, when I don’t feel well enough to go out to the store, or to even sit here and type. The brain fog causes me all kind of issues, from having to make list after list …. Even writing this, I did not recall that I had already posted a portion of it on my blog….
Tuesday, November 25, 2014
Holidays Upon Us - Feeling Lousy - But trying to "Put on a Happy Face"
Just about every one of us know this dilemma. We try our best to make the holidays a special time of year. Whether it be the upcoming Thanksgiving and Christmas Holidays, or the others during the year; none of us want to "ruin" our family and friends holiday season.
So, we often put on that "Happy Face", and try to hide behind the mask of pain, fatigue, stiffness, swelling, and all of the other horrid issues we put up with physically, mentally and emotionally during the year and especially during the holidays.
I am headed out for now to have my pain pump refilled, so I shall finish this later this evening. But, I do want to say I pray everyone will have a safe, Happy and a reprieve from illness for the holidays.....
Rhia
Speaking of... the up and up.... Something happened today while I was at my pain doctors office in Dallas having the pain pump refilled. Of course it is NO secret that I have been in an insurmountable over 5 to 7 days of unrelenting pain. I of course mentioned it to him, and thought he might take the "hint" to either up the pain med in my pump (which can be done) OR just allow me to take my "breakthrough" medication a bit closer together, at least until I am over this damned hump of pain. It is just insanity and it is driving me over the insanity brink for sure. I did get a huge shot of Solu-Medrol yesterday while I was at my PCP office for a recheck. After telling him and then I asked about going to the corticosteroid injection at the office, and then a 14 day step down dose of prednisone, he said yes, most certainly we can try... thus we did. I seemed to have been a bit better this morning. I was able to stand on my feet almost without wincing in pain. But, as the day wore on, between the drive to Dallas, not getting to really eat, then going through the entire refill crap, and of course driving home... Then a "hog for punishment"... I decide to go out after getting home, and do a bit of my "coupon/sales" shopping, which I knew was probably a mistake and really stupid honestly. It was already almost 4pm, I was exhausted in every way from mental, physical, emotional... you name it... but I did manage to make my way down to our local Dollar General and pick up a few things that were "crazy" on sale. By the time I got home, I was just totally wiped. I had to let CVS and Wal-Greens go until maybe tomorrow, and I may try for Family Dollar, but I am not so sure yet.
I will NOT shop on Thanksgiving, sorry but I think that stinks to the high heavens, that anyone in retail makes employees work on a major holiday!!! If everyone does not get what they need by Wednesday, then they can just do without it for one day!!!! It irks me to the ends of the Earth that they open those stores on a holiday like this one. Anyway, of course "people" will go, and if they come, of course that is money in their pockets, so open they are.
And you can certainly forget me getting out on "Pitch Black Friday"... I am pretty "hair brained" at times, but being out at 2am in the morning to shop, is just not what I call "fun"... Now IF we were headed for WINSTAR, now that I WOULD GET UP FOR! :):):)
Plus in all honesty, I don't have a huge family to buy for anymore... and sometimes it has become easier as the kids have grown up, and like my daughter, has a family of her own, to just send them money, and let them get what they want, need, and like. I swore when I saw my parents do that, I would NEVER ... I always believed in getting a present for everyone... that is partly what made the holiday, Christmas. But, as I have aged, and the kids grow so quickly, it now makes sense as to why my parents, and their parents did it.
I really should be writing some words of wisdom for those of you who are looking and searching for "answers" in how to "survive and thrive" during the holidays. I am speaking of course at the moment about those of us with chronic illnesses, and chronic pain... from the autoimmune diseases, to chronic pain, migraines, CFS, FM, and the entire gamut of these that cause us grief most every day of our lives. I think I have truly discovered why I love to make a trip to the casino every once in a while. It is because once I step into those doors, until I step out and get in the car to come home, "illness" flies out the door, and stays out until I leave. It is the people, the noise, the lights, and most of all, your mind or for me, my mind is "clear" for a while. I am NOT thinking about medications, doctors, tests, prescriptions, pharmacies, people that are just plain stupid, lazy and don't give a damned that don't need to be in the business of health care at all, if they DO NOT LIKE PEOPLE!!! I hear it and see it constantly... they either just don't give a damned about us as patients, or they don't really want to be there, ... but I see it more and more from all walks of what the medical profession is supposed to be... greed, laziness, no training, not doing their jobs, and we do it for them... it just makes my blood boil, when I hear that "tone" on the phone. You know, that one on the other end who could care less about my needs as a patient and what THEY should BE doing and they DON'T!!!!
Anyway, so to step into that huge building that has NOT ONE WINDOW in it... NO CLOCKS, and every kind of sound, feeling, sight, and emotion rolls into those slot machines while I am there... so it is not really the "gambling"... Lord knows I DO NOT have "gambling money"... but it is the get a way from it all. Even if it is just Sunday, and we don't stay the night, still it is a rest from the daily mess. I should "coin" that phrase, "It is a rest, from the daily mess." to put it lightly.
So, for me, honestly, I am in so much pain, even as I type this I am wondering why the hell I am!!! My wrists, fingers, elbows, shoulders and neck hurt so badly all I want to do is sit in the floor and cry, cry, cry, cry.... but then I would have a Migraine, thus that is not a help, maybe a release, but certainly not a cure.
I have "lots" of advise about how to "help" your holiday run smoother, but everyone has their own way to handle it. Some just say NO... some stay home, some go out to eat, or to a movie, or to the casino... for some it is being alone and for others it is being with family and/or friends. For some it is "giving" of oneself, and serving at a homeless center, or church to others not as fortunate as many of us. So, you have to "dig deeper" within yourself to figure out "how to survive the holidays".
Lately, I will say for me, I have been extremely fortunate, and found some incredibly super bargains on a few outfits, a pair of shoes, some leg warmers I found today, and also racked up some savings on some new eye shadow, mascara, eye liner and I even bought some "false lashes".. but it has been years since I tried to put them on, so I have not braved it yet. So, for me, between reading some really great "beauty" tips, especially those that are truly inexpensive etc... and get a few clothes for a tiny bit of nothing... (I've probably spent about 50.00 on ALL of it)!!!! Between "mega-markdowns", super sales, cashing in on coupons, I got a pair of 80.00 shoes for like 10.00, bought about 7 or 8 tops for about 15.00 or so, makeup around 10.00 leg warmers 2.00!!, plus a few other odds and ends... but I have not spent hardly anything for all of it! So, that has kind of been a "new release" for me... finding ways to have "nice" stuff, without breaking the bank... the better the bargain, the happier I am honestly. So, when things are too much to bear, I open up an email from Total Beauty, or a couple of others I get newsletters from... and even do a great deal of DIY, skin, hands, feet, nail treatments... gosh sometimes we do not realize how many things we already have in our home that work great on skin, hair, nails and so on... so I look for those, and give them a try... if they suck... they suck... if not I am not out anything...
Okay well, it is midnight, and it's been forever since I've stayed up late like this to write... I am hoping it will help me, and if we are lucky, maybe you might get a kick out of reading it....
Happy Thanksgiving, Rhia, Jim and the family
So, we often put on that "Happy Face", and try to hide behind the mask of pain, fatigue, stiffness, swelling, and all of the other horrid issues we put up with physically, mentally and emotionally during the year and especially during the holidays.
I am headed out for now to have my pain pump refilled, so I shall finish this later this evening. But, I do want to say I pray everyone will have a safe, Happy and a reprieve from illness for the holidays.....
Rhia
Have a Wonderful Holiday!
SECOND PART!!!!!!!!
As promised I am "here", just a bit later than I thought I would be. It has already been one helluva week. Between 2 days of doctors appointments, getting ready for whatever kind of Thanksgiving we are having (not in a bad way, just seems thing keep getting changed around), the entire ordeal about Jim, the accident, all of the ongoing and going and going about doctors for him that either are just NOT accessible, OR they are total jerks and quacks. Talk about some "scheming". I found out quite a bit more on this whole thing of getting things taken care of with doctors that are NOT on the up and up.Speaking of... the up and up.... Something happened today while I was at my pain doctors office in Dallas having the pain pump refilled. Of course it is NO secret that I have been in an insurmountable over 5 to 7 days of unrelenting pain. I of course mentioned it to him, and thought he might take the "hint" to either up the pain med in my pump (which can be done) OR just allow me to take my "breakthrough" medication a bit closer together, at least until I am over this damned hump of pain. It is just insanity and it is driving me over the insanity brink for sure. I did get a huge shot of Solu-Medrol yesterday while I was at my PCP office for a recheck. After telling him and then I asked about going to the corticosteroid injection at the office, and then a 14 day step down dose of prednisone, he said yes, most certainly we can try... thus we did. I seemed to have been a bit better this morning. I was able to stand on my feet almost without wincing in pain. But, as the day wore on, between the drive to Dallas, not getting to really eat, then going through the entire refill crap, and of course driving home... Then a "hog for punishment"... I decide to go out after getting home, and do a bit of my "coupon/sales" shopping, which I knew was probably a mistake and really stupid honestly. It was already almost 4pm, I was exhausted in every way from mental, physical, emotional... you name it... but I did manage to make my way down to our local Dollar General and pick up a few things that were "crazy" on sale. By the time I got home, I was just totally wiped. I had to let CVS and Wal-Greens go until maybe tomorrow, and I may try for Family Dollar, but I am not so sure yet.
I will NOT shop on Thanksgiving, sorry but I think that stinks to the high heavens, that anyone in retail makes employees work on a major holiday!!! If everyone does not get what they need by Wednesday, then they can just do without it for one day!!!! It irks me to the ends of the Earth that they open those stores on a holiday like this one. Anyway, of course "people" will go, and if they come, of course that is money in their pockets, so open they are.
And you can certainly forget me getting out on "Pitch Black Friday"... I am pretty "hair brained" at times, but being out at 2am in the morning to shop, is just not what I call "fun"... Now IF we were headed for WINSTAR, now that I WOULD GET UP FOR! :):):)
Plus in all honesty, I don't have a huge family to buy for anymore... and sometimes it has become easier as the kids have grown up, and like my daughter, has a family of her own, to just send them money, and let them get what they want, need, and like. I swore when I saw my parents do that, I would NEVER ... I always believed in getting a present for everyone... that is partly what made the holiday, Christmas. But, as I have aged, and the kids grow so quickly, it now makes sense as to why my parents, and their parents did it.
I really should be writing some words of wisdom for those of you who are looking and searching for "answers" in how to "survive and thrive" during the holidays. I am speaking of course at the moment about those of us with chronic illnesses, and chronic pain... from the autoimmune diseases, to chronic pain, migraines, CFS, FM, and the entire gamut of these that cause us grief most every day of our lives. I think I have truly discovered why I love to make a trip to the casino every once in a while. It is because once I step into those doors, until I step out and get in the car to come home, "illness" flies out the door, and stays out until I leave. It is the people, the noise, the lights, and most of all, your mind or for me, my mind is "clear" for a while. I am NOT thinking about medications, doctors, tests, prescriptions, pharmacies, people that are just plain stupid, lazy and don't give a damned that don't need to be in the business of health care at all, if they DO NOT LIKE PEOPLE!!! I hear it and see it constantly... they either just don't give a damned about us as patients, or they don't really want to be there, ... but I see it more and more from all walks of what the medical profession is supposed to be... greed, laziness, no training, not doing their jobs, and we do it for them... it just makes my blood boil, when I hear that "tone" on the phone. You know, that one on the other end who could care less about my needs as a patient and what THEY should BE doing and they DON'T!!!!
Anyway, so to step into that huge building that has NOT ONE WINDOW in it... NO CLOCKS, and every kind of sound, feeling, sight, and emotion rolls into those slot machines while I am there... so it is not really the "gambling"... Lord knows I DO NOT have "gambling money"... but it is the get a way from it all. Even if it is just Sunday, and we don't stay the night, still it is a rest from the daily mess. I should "coin" that phrase, "It is a rest, from the daily mess." to put it lightly.
So, for me, honestly, I am in so much pain, even as I type this I am wondering why the hell I am!!! My wrists, fingers, elbows, shoulders and neck hurt so badly all I want to do is sit in the floor and cry, cry, cry, cry.... but then I would have a Migraine, thus that is not a help, maybe a release, but certainly not a cure.
I have "lots" of advise about how to "help" your holiday run smoother, but everyone has their own way to handle it. Some just say NO... some stay home, some go out to eat, or to a movie, or to the casino... for some it is being alone and for others it is being with family and/or friends. For some it is "giving" of oneself, and serving at a homeless center, or church to others not as fortunate as many of us. So, you have to "dig deeper" within yourself to figure out "how to survive the holidays".
Lately, I will say for me, I have been extremely fortunate, and found some incredibly super bargains on a few outfits, a pair of shoes, some leg warmers I found today, and also racked up some savings on some new eye shadow, mascara, eye liner and I even bought some "false lashes".. but it has been years since I tried to put them on, so I have not braved it yet. So, for me, between reading some really great "beauty" tips, especially those that are truly inexpensive etc... and get a few clothes for a tiny bit of nothing... (I've probably spent about 50.00 on ALL of it)!!!! Between "mega-markdowns", super sales, cashing in on coupons, I got a pair of 80.00 shoes for like 10.00, bought about 7 or 8 tops for about 15.00 or so, makeup around 10.00 leg warmers 2.00!!, plus a few other odds and ends... but I have not spent hardly anything for all of it! So, that has kind of been a "new release" for me... finding ways to have "nice" stuff, without breaking the bank... the better the bargain, the happier I am honestly. So, when things are too much to bear, I open up an email from Total Beauty, or a couple of others I get newsletters from... and even do a great deal of DIY, skin, hands, feet, nail treatments... gosh sometimes we do not realize how many things we already have in our home that work great on skin, hair, nails and so on... so I look for those, and give them a try... if they suck... they suck... if not I am not out anything...
Okay well, it is midnight, and it's been forever since I've stayed up late like this to write... I am hoping it will help me, and if we are lucky, maybe you might get a kick out of reading it....
Happy Thanksgiving, Rhia, Jim and the family
Tuesday, November 4, 2014
Be there With Your "Jingle Bells On"!!!!!!
Be sure to Check out other locations around the nation for other cities that are having the "Jingle Bell Run".... this is Nationwide!!! I know San Antonio, Austin and I believe Houston will have one here in TX, and possibly more... but they are sponsored all around the Nation!!!!
Here is the link to find out where the closest is to you!!!
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I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things abo...
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How can our kids feel safe when WE as adults don't???? I fear Wal-Mart or just walking across the parking lot at HEB in my small lo...
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I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...