Life is not always BED OF ROSES... but I would settle for a few soft petals for now...
I am so excited - My NEW CORDLESS Weed Eater Came in yesterday! No more trying to pull those heavy cords around the yard, and I can take this out into the "back forty" also. Plus it is really almost lighter in weight than the corded one, and certainly lighter than the "gas" one. I can't weed eat for any long length of time, but I did discover, as long as I take it slow, and take breaks fairly quickly in between, then I can do lots with it. I can't start my darned lawnmower, because I do not have enough strength in my arms anymore to pull it quickly enough for it to start. It sucks, because I just put almost everything new on it last summer. I put the new pull cord device on it, a new air filter, changed the oil, a new spark plug, and fixed the "baffle" on it that deflects the grass. So, I am hoping my neighbor who used to mow the lawn will still do so, and he can see if i did a good job in the "overhaul" I guess when it plays out on me, I may have to get one that is "push button" for starting or something. I no longer can pull the cord quickly enough to start those kind. Anyway, right now I hope "nothing else" breaks or needs replacing around here.
I've got the surgery to pay for, a doctors visit tomorrow that will have to be paid in full right now by me... he is my PCP and the ONLY doctor NOT on my "preferred provider list"... Hopefully since Aetna bought Humana, (they are on Aetna's plan) finally it will come together and they also will be on Humana's also... it is so odd, Humana used to carry them as a preferred provider for years.... anyway, I am having HELL with the surgeon's assistant that is doing my neck surgery. I go through hell with them on insurance every time... I FOUND THEM AND CALLED NOW 3 TIMES to make sure his clinic is on the "preferred provider list"... and I have seen it and they told me AGAIN ON THE PHONE YESTERDAY, that they are on Humana's "preferred providers list".... BUT the doctors office said the insurance said that they are not... well the issue is they have it listed under their "clinic name" which Humana tells me that means "the doctor" is covered... and I even got a special number on the phone yesterday as a confirmation that he is a preferred provider that I faxed to the doctors office... anyway, I have a 750.00 deductible on any "non preferred" provider then the insurance will pay 60% of the bill anyway, and then I pay 40%... so if it comes down to it, once that 750 is met, I would owe 40% of whatever, office visits, etc... and sometimes that 40% is actually "cheaper" than the co-pay which now is 20.00 for a PCP and a specialist is 45.00 in co-pay.... anyway, between that, trying to get Mom all figured out as far as her medications, and so forth, making sure I have someone to get me back and forth to the surgery next week on my neck and I think my son will be able to, he has to check with his work, then I will be in a neck brace for about 4 to 6 weeks...
I will be able to drive after a week or so, but being in that neck brace makes it a bit more difficult, plus my pain pump has to be refilled around the 18th or so.... gosh always something... I won't be able to bend over, so I will have to get "creative" in changing the dogs paper and feeding/watering them... the little one is so full of "pee and vinegar" as the old saying goes, LOL, I will have to be extra careful with him after surgery so he does not trip me, or make me do something to "injure" my neck for the first couple of weeks... anyway we have all of that going on, and some others things, with family going on... I think all of us are more stressed out than we can almost handle... keep your thoughts and prayers with all of us right now.... I know my family will appreciate it for sure...
My daughter and her family are under a great amount of stress due to jobs issues... things are so up in the air with the oil and has industry, and her husband, my son-in-law has worked with that type of thing now for over 10 years... yet with the extreme drop in oil and gas prices, of course it is taking a toll on so many of the companies that have anything to do with oil and gas right now... It is wonderful for us when we go to the gas station, but a nightmare for so many who may lose their jobs, and so forth. Talk about a double edged sword... so I have her and her family in my heart and am concerned for them, as I know this is a difficult time for them also. He does not really know from one day to the next if he will have a job with the company or not, and after having that security, benefits, insurance and so forth for over 10 years, that is difficult to deal with.
"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 family issues. Show all posts
Showing posts with label family issues. Show all posts
Thursday, February 25, 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, October 13, 2015
Tips on How to Share your "diagnosis with family, friends, the public and so forth - These tips may help in any type of chronic illness or pain issue, not just autoimmune
www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Living-Well-with-Rheumatic-Disease/Sharing-Your-Diagnosis-with-Others
The above link comes from the Rheumatology site and it gives you assistance on whom, how to, what to, say or maybe not say about any illnesses such as RA, Lupus and other autoimmune issues, but many of these same tips, when you have an "invisible illness" especially could help you also.
I know for many, they feel an isolation, a coldness from others, when they explain being "chronically" ill. Some want to try and put it off to you just being "lazy", or to use as an excuse to do or not do something. Others thing you are just faking it, or that it is a way to gain attention... all of which is total bull, but I can attest that even DOCTORS can give you that feeling. In fact just last week, after being ill for months with other issues, and feeling as if I had a Lupus Flare coming on, that ONE DAY after an entire year of not getting to see him, but deal with his PA, and guess what? That is the one damned day, I feel "better"... and I had emailed me on several occasions about how lousy I felt and what all was going on, and yet then he walks in expecting me to look horrible and I look fairly well..... I knew he wondered if a part of me, was just complaining to complain. So, then I spent two entire days, plus even the weekend feeling lousy, a headache, a stiff neck, the mylar rash my throat feeling swollen and raw..and today Mom and I went into see our PCP.. well I did not look all that well this morning, BUT I also once again did not look as "sickly" as I had felt and been over those past 4 days... I did tell him that my Rheumy gave me the flu shot.... and i told him usually I kind of feel lousy or maybe achy a bit, but never have I ran a fever, high enough that again I was almost hallucinating... every joint hurt, my head and neck hurt so badly... and so I thought he would give me a corticosteroid injection to slow down or help this Lupus flare go away... well he said the "new" flu shot this year contains FOUR rather than 3 strains of flu and thus my body may have reacted quite differently due to being autoimmune & if he gave me the injection and the prednisone, then my flu vaccine would basically be "useless" because my body would fight it off if I took that now...
So, I have to wait at least another week, and if I still feel as if I may have a flare THEN I can go in for the injection and medication.... so now I have to I guess just tough it out, which all too often is easier said than done.....
The above link comes from the Rheumatology site and it gives you assistance on whom, how to, what to, say or maybe not say about any illnesses such as RA, Lupus and other autoimmune issues, but many of these same tips, when you have an "invisible illness" especially could help you also.
I know for many, they feel an isolation, a coldness from others, when they explain being "chronically" ill. Some want to try and put it off to you just being "lazy", or to use as an excuse to do or not do something. Others thing you are just faking it, or that it is a way to gain attention... all of which is total bull, but I can attest that even DOCTORS can give you that feeling. In fact just last week, after being ill for months with other issues, and feeling as if I had a Lupus Flare coming on, that ONE DAY after an entire year of not getting to see him, but deal with his PA, and guess what? That is the one damned day, I feel "better"... and I had emailed me on several occasions about how lousy I felt and what all was going on, and yet then he walks in expecting me to look horrible and I look fairly well..... I knew he wondered if a part of me, was just complaining to complain. So, then I spent two entire days, plus even the weekend feeling lousy, a headache, a stiff neck, the mylar rash my throat feeling swollen and raw..and today Mom and I went into see our PCP.. well I did not look all that well this morning, BUT I also once again did not look as "sickly" as I had felt and been over those past 4 days... I did tell him that my Rheumy gave me the flu shot.... and i told him usually I kind of feel lousy or maybe achy a bit, but never have I ran a fever, high enough that again I was almost hallucinating... every joint hurt, my head and neck hurt so badly... and so I thought he would give me a corticosteroid injection to slow down or help this Lupus flare go away... well he said the "new" flu shot this year contains FOUR rather than 3 strains of flu and thus my body may have reacted quite differently due to being autoimmune & if he gave me the injection and the prednisone, then my flu vaccine would basically be "useless" because my body would fight it off if I took that now...
So, I have to wait at least another week, and if I still feel as if I may have a flare THEN I can go in for the injection and medication.... so now I have to I guess just tough it out, which all too often is easier said than done.....
Tuesday, August 11, 2015
Cellulitis, Antibiotics, MRSA, Catching Up, and what "normal" is when you battle with autoimmune illnesses
Gosh
Lord knows I need all of the prayers I can get for sure... I did find
out yesterday that this stomach mess that began last Friday maybe a
"stomach bug" going around. I spoke to my pharmacist about a medication,
and they told me that lots of people had been in over the past week or
so, with the same thing... really nauseated, feeling lousy, and be
"sick" to their stomach... I kind of thought that maybe what it was
after I spoke with Mom Sunday over the phone and she was sick Sunday
morning with about the same thing. I believe mine was a bit worse just
due to the fact, I had already had such severe intestinal issues from
the antibiotics, and I am just "worn down" from the cellulitis, not
sleeping, the heat does not help and so forth... hopefully I will NOT
encounter any more of that mess for awhile. I am still NOT at 100%
though. Yet, at least I am COMPLETELY THRU with the antibiotics. I
officially took the last 2, yesterday evening. Although the "lump" is
still not completely gone away, I think I will just see what happens
over the next couple of days. I certainly do not want another round of
antibiotics, especially since they are some they use to fight really,
really tough cases of infection. I do not want to become "immune" to
them and then not get what I may need, if so happened I did come down
with some type of very bad infection... MRSA always remains in the
background when I think about having to take antibiotics. Although my
PCP does not just hand them out for anything, but with me being more
prone to having an infection, I have had to take more than I really want
to over these past few years. I GO TO the Cardiologist this morning.
Just a routine follow up, but her appts are always too EARLY... this one
is at 11AM so not too bad, but I always prefer to have appts. very
early afternoon about 1PM... that way I have all morning to do things
and get caught up on stuff, and I don't waste time having to get ready
for a doctor in an appt that is way early... Then the rest of the week
is actually pretty quiet as far as going to doctors etc. I STILL NEED to
go have the damned Chest X-ray done... I got sick and had to postpone
it again... and I know my Rheumatologist is really wondering what the
heck is going on. Anyway, I will be playing catch up on lots of stuff
over the next few days... so I appreciate everyone and your well wishes
and prayers... and I hope things "settle" a bit now, and I will feel
better over the next few days, get my strength somewhat back, and be
able to get back to "life" rather than a sofa and movies 24/7... Hugs to
all... Me
It SUCKS big time, when you feel your life is totally out of your own control, and you have no way to "fix" things... you just have to succumb to the sofa, resting, and putting a whatever you could call "life" on hold.
This past 6 weeks or so have been a total nightmare. Combine all of the issues with the lump on my thigh, cellulitis, high powered antibiotics, my own lower back, pain, stiffness, and a seemingly "worsening" of RA symptoms. My hands and wrists, along with fingers and thumbs are really bothering me worse than they ever had. My right hand has several swollen joints and even the cartilage between my fingers seems to be swollen, puffy and very stiff.
I have actually missed my Orencia now for the 3rd week (in fact I usually take it on Tuesdaus - but after all of the issues with cellulitis on the top of my left thigh in a place that seems where I usually do the Orencia Injections, first of all, with the infection I feared taking it, and 2nd of all, I am not through researching it, but I feel I may have gotten a "contaminated" needle giving myself the injections... I am a stickler for the skin being very clean, and make sure that the alcohol swabs get all in the area, and I always have clean hands, and usually put a bandaid over that spot at least for a day... and I realize with any type of autoimmune issue, I am more apt, more prone, to have these types of issues, but when you get so ill, that your entire life goes on hold for several weeks, it is surely difficult to deal with.
Anyway, I just completed two 7 day rounds of Rifampin and Bactrim - I hope and pray after 14 days total of these two powerful antibiotics, this cellulitis is gone, and what small "lump" that is left, will just take a bit of time for my body to "absorb" it. I've never had to deal with cellulitis before. So, what portion I do know about it, is what my doctors, my pharmacist and my own research has told me.
I don't want to have to take anymore antibiotics if I can avoid it. I already have infections at times like pneumonia twice in the past year or so that require them. Thus, I worry so much about getting "immune" or something mutating to where the antibiotics do not work. Actually that scares the hell out of me.
But, I must be sure that all signs of infection are gone. I can't take a chance for sure. Plus I feel if this does not do the trick, I will have to be hospitalized and put on IV antibiotics, which I don't have time for, and is surely NOT a convenient situation for me financial wise, time wise, and due to me being here, with the pups, and no longer having another person here to help out, I just can't be gone several days to the hospital. Of anything that sucks about being alone, to me is just that. I can deal with "alone", like many of us do. What I can't deal with is the times I need to be gone for more than a day... then that requires so much change. I must find someone to watch after the pups, and that is not an easy thing... fortunately there is a young woman, along with her sister and Mom that do come to your home and watch after them. But, mine are both so totally ruined, they have a hard time with a stranger, or with me being gone for any time over a day, or a day and a night... so it is like having kids... you can't just leave them at the house for a few days, run off to the hospital... you must have them watched over... My Pug, is really get very stiff herself... she is up in age and has a difficult time getting around... can't jump up on the sofa anymore by herself... and she requires a bit of extra attention, plus I give them both medications daily and so forth...
Even though some may not comprehend how an animal or animals can be so much of your life, but they are... anyone that is an animal lover, and has or had a dog(s), cats and do forth totally "get it"... they become a part of your family and for me right now, they are my family...
Even though I think I should have "more time" now, I feel as if somewhere my time is being "sucked" away... the days feel shorter, and the number of things that need to be done, longer... and I never seem to be able to find enough energy to complete the tasks that I should be able to... I've tried everything... lists, organizing, I multi-task, although not as well as I used to be able to... but it is like life goes into overdrive... and rather than slowing down, and things getting "less" all needs are more... whether it is my own health, my Mom's, the house, the pups, everything seems to suck time away... I spent over a week more or less on the sofa... so I have all of this stuff piled up... and all of it important in its own way... but it is impossible for me to handle it all anymore... the age, the autoimmune illnesses, along with everything they bring and take away... my body feels "worn" out rather than better....
It SUCKS big time, when you feel your life is totally out of your own control, and you have no way to "fix" things... you just have to succumb to the sofa, resting, and putting a whatever you could call "life" on hold.
This past 6 weeks or so have been a total nightmare. Combine all of the issues with the lump on my thigh, cellulitis, high powered antibiotics, my own lower back, pain, stiffness, and a seemingly "worsening" of RA symptoms. My hands and wrists, along with fingers and thumbs are really bothering me worse than they ever had. My right hand has several swollen joints and even the cartilage between my fingers seems to be swollen, puffy and very stiff.
I have actually missed my Orencia now for the 3rd week (in fact I usually take it on Tuesdaus - but after all of the issues with cellulitis on the top of my left thigh in a place that seems where I usually do the Orencia Injections, first of all, with the infection I feared taking it, and 2nd of all, I am not through researching it, but I feel I may have gotten a "contaminated" needle giving myself the injections... I am a stickler for the skin being very clean, and make sure that the alcohol swabs get all in the area, and I always have clean hands, and usually put a bandaid over that spot at least for a day... and I realize with any type of autoimmune issue, I am more apt, more prone, to have these types of issues, but when you get so ill, that your entire life goes on hold for several weeks, it is surely difficult to deal with.
Anyway, I just completed two 7 day rounds of Rifampin and Bactrim - I hope and pray after 14 days total of these two powerful antibiotics, this cellulitis is gone, and what small "lump" that is left, will just take a bit of time for my body to "absorb" it. I've never had to deal with cellulitis before. So, what portion I do know about it, is what my doctors, my pharmacist and my own research has told me.
I don't want to have to take anymore antibiotics if I can avoid it. I already have infections at times like pneumonia twice in the past year or so that require them. Thus, I worry so much about getting "immune" or something mutating to where the antibiotics do not work. Actually that scares the hell out of me.
But, I must be sure that all signs of infection are gone. I can't take a chance for sure. Plus I feel if this does not do the trick, I will have to be hospitalized and put on IV antibiotics, which I don't have time for, and is surely NOT a convenient situation for me financial wise, time wise, and due to me being here, with the pups, and no longer having another person here to help out, I just can't be gone several days to the hospital. Of anything that sucks about being alone, to me is just that. I can deal with "alone", like many of us do. What I can't deal with is the times I need to be gone for more than a day... then that requires so much change. I must find someone to watch after the pups, and that is not an easy thing... fortunately there is a young woman, along with her sister and Mom that do come to your home and watch after them. But, mine are both so totally ruined, they have a hard time with a stranger, or with me being gone for any time over a day, or a day and a night... so it is like having kids... you can't just leave them at the house for a few days, run off to the hospital... you must have them watched over... My Pug, is really get very stiff herself... she is up in age and has a difficult time getting around... can't jump up on the sofa anymore by herself... and she requires a bit of extra attention, plus I give them both medications daily and so forth...
Even though some may not comprehend how an animal or animals can be so much of your life, but they are... anyone that is an animal lover, and has or had a dog(s), cats and do forth totally "get it"... they become a part of your family and for me right now, they are my family...
Even though I think I should have "more time" now, I feel as if somewhere my time is being "sucked" away... the days feel shorter, and the number of things that need to be done, longer... and I never seem to be able to find enough energy to complete the tasks that I should be able to... I've tried everything... lists, organizing, I multi-task, although not as well as I used to be able to... but it is like life goes into overdrive... and rather than slowing down, and things getting "less" all needs are more... whether it is my own health, my Mom's, the house, the pups, everything seems to suck time away... I spent over a week more or less on the sofa... so I have all of this stuff piled up... and all of it important in its own way... but it is impossible for me to handle it all anymore... the age, the autoimmune illnesses, along with everything they bring and take away... my body feels "worn" out rather than better....
Thursday, August 6, 2015
Life with Autoimmune Illnesses, Lupus... back sugery, dealing with chronic pain, US Pain Foundation and September Pain Awareness Month, Proclamation, family and coping
Things here are still really insane... it "seems" that my intestinal tract "maybe" improving... I hate to say that and jinx myself... but yesterday and last night and so far this morning it is much better than a week ago... but I still have Mom and her injections to deal with, I still need to get the chest X-ray.. I hope and pray that is 2nd round of antibiotics will completely rid me of the cellulitis... I found another "lump" on my right thigh a couple of days ago, and I was praying it was not more - but I am on the Rifampin and the other one (can't think of the name of the moment) LOL.. but between lack of sleep for nights and nights... and the heat, and stress, worry... my mind is about null and void anyway... Good news!! I am okay for the City Of Ennis to go ahead with the National Pain Awareness Campaign in September "Beautify in Blue"!!! Our Mayor signed the proclamation, and the man that I needed to speak with about signs, ribbons and so forth told me it was fine to go ahead and put those up for next month!! I am truly thrilled to be able to get "my home community" involved in this... even he said he suffers from migraines... so he totally gets chronic pain... I will keep you informed, make photos and post them etc as I get the stuff and get it up here in town... other than that, I HAVE TO GET WELL so I can have this back surgery... I will more than likely switch Medicare Plans for next year and that probably means I could lose my surgeon, so I have to get it done before the end of the year... all of that has been a nightmare also... to find out that my own HOSPITAL does NOT take the Medicare Advantage Plan, after I was told they did... but it is a huge ordeal and AARP should be ashamed of themselves for even sponsoring Untied Healthcare and what they have pulled on their clients... it is all over the internet how they have really messed so many of us up on our providers... I am still very concerned about Mom and all of the "memory" issues and things I've seen over the past several weeks... although I know from experience, lack of sleep, pain, new medications, stress can all be huge factors in our memories etc - it seems to be over and above all of that... anyway, I am playing catch up after being ill for so long and I am still not at my best (whatever that is anymore ) ;) just wanted to touch base with everyone and let you know I am still "alive" and not really "kicking" at the moment...
Friday, July 31, 2015
How to React to an "invisible bacteria" invading your body, when Autoimmune Diseases are involved & how do you know when you are "well"?
Good question! For myself, YES, it is! Whether it is a "missing" bone out of my spine, that was found after 55 years of life, or an unusual "lump" on the top of my let thigh, my entire "medical" life always evolves around being unusual, unique, complicated, complex, and some doctors almost "fear" having to treat me at times.
We all in the world now share an added sense of "something is worse now" than 20 years ago. Bacteria now that invades our bodies have mutated and changed so much, many of the well known medications to treat these bacterial infections no longer are able to do so. I found that over the years our bodies do have an extremely interesting way they fight certain things... like this lump on the top of my left thing. IT is my own immune system although compromised, that began getting that infection "rounded up" an circled to push it into this lump, in order to try and stop it from spreading more. So even with a body and immune system that tends to not work properly at times, I still have enough of my immunity, that the body tries its best to fend off the bacteria, thus the "lump" under my skin is cellulitis. But, unless you know about it, or it breaks to the outer skin, it can go possibly not noticed. Of course when the lump came up and began to grow so quickly I knew there was something very wrong.
things with myself and my Mom are just insane. Between my own needing for back surgery, and now to find out my Mom, who we thought has a hip problem, find out it is also her lumbar spine and arthritis. So, between running to doctors, to therapy, for tests, some local and some in Dallas, and then me to come down with the cellulitis, plus I have not even gotten the chest X-ray so I can go on Xeljanz. My "TB" blood test came back "inconclusive" but they feel it is because it did not get tested quickly enough, thus that happens. But, until I have the X-ray, my insurance will not approve the medication.
Of course the sweltering temperatures are not helping... we are under a heat warning for at least the next 5 days and more... looking at temps above 105 plus the heat indeces bringing it up to 110 and above at times...
Things are just a mess right now and I am about ready to throw in the towel, throw my hands up, and then hide under the bed for the next month or so... Gosh knows when it rains it pours... and my doctors all agree, I am a "complex and complicated" patient... YA THINK???
I apologize for not posting more here, but due to my health issues and then all of Mom's things, I have really not been able to sit here for very long to post... I decided I did need to come in and post a few things and share why I have been "lax" in my postings lately....
Here are a few links also I want to share with you...
http://blog.arthritis.org/stories-of-yes/miss-teen-minnesota-juvenile-arthritis/
http://www.lupusresearchinstitute.org/lupus-facts/fight-lupus/lupus-and-your-skin
http://www.lupus.org/general-news/entry/statement-on-the-results-of-epratuzumab-study-for-the-treatment-of-lupus
http://blog.arthritis.org/living-with-arthritis/omega-3-fatty-acids-arthritis/?utm_source=facebook
By the way, talking about "Fish oil" and such especially for your pets, dogs in particular, I had a friend tell me about her dog, who was very, very old and had severe issues with joints. She had put her on "Canna - Pet" which is "industrial hemp powder".... I tried it for Tazz a couple of months... and it just helped her immensely. I was so surprised and thrilled. BUT I was NOT thrilled with the PRICE! The stuff is like $30.00 for a month's supply. In fact, it would be 60.00 a month if you gave them 2 a day... anyway, I did my own research on this "hemp powder" and began to find that there are many "humans" that use it for all types of problems. Especially joint pain, and inflammation... even allergies and so forth. So, I looked on Amazon and found a bottle of "100% hemp powder".... and this has NO THC or whatever the initials are for what is in cannabis that humans use to smoke... it contains none of that... so there is no "high" anyone would get, and it would never show up in the bloodstream or urine. So, I ordered a fairly large canister full at about $10.00. Well, the price right there was much better, but I was not sure how well it would work... It works just as well if not better than those capsules, costs a heck of a lot less, and both dogs even like the taste of it. I can take a treat, or a piece of fresh fruit etc... and roll it in the powder and they just love the flavor. So, I've been giving it to them every morning, and then I put a bit on their food.... I can see both of them up playing, and doing things that before they just almost could not do, especially Tazzy.... I wanted to share this with all of you, and also the fish oil they love too. I feared they might eat their food, but they eat better with the fish oil on it.... LOL!!!! Anyway, a bit of information for some of you..
http://www.medpagetoday.com/Rheumatology/Lupus/52814
Lots of great news above... from information about Fish oil and its benefits, to a new Lupus medication on the horizon, Miss Teen who has made her dreams come true in spite of fighting Juvenile Arthritis, and more... I think you will like reading these...
http://www.ucb.com/presscenter/News/article/UCB-announces-Phase-3-clinical-trial-program-for-epratuzumab-in-Systemic-Lupus-Erythematosus-did-not-meet-primary-endpoint-nbsp
We all in the world now share an added sense of "something is worse now" than 20 years ago. Bacteria now that invades our bodies have mutated and changed so much, many of the well known medications to treat these bacterial infections no longer are able to do so. I found that over the years our bodies do have an extremely interesting way they fight certain things... like this lump on the top of my left thing. IT is my own immune system although compromised, that began getting that infection "rounded up" an circled to push it into this lump, in order to try and stop it from spreading more. So even with a body and immune system that tends to not work properly at times, I still have enough of my immunity, that the body tries its best to fend off the bacteria, thus the "lump" under my skin is cellulitis. But, unless you know about it, or it breaks to the outer skin, it can go possibly not noticed. Of course when the lump came up and began to grow so quickly I knew there was something very wrong.
things with myself and my Mom are just insane. Between my own needing for back surgery, and now to find out my Mom, who we thought has a hip problem, find out it is also her lumbar spine and arthritis. So, between running to doctors, to therapy, for tests, some local and some in Dallas, and then me to come down with the cellulitis, plus I have not even gotten the chest X-ray so I can go on Xeljanz. My "TB" blood test came back "inconclusive" but they feel it is because it did not get tested quickly enough, thus that happens. But, until I have the X-ray, my insurance will not approve the medication.
Of course the sweltering temperatures are not helping... we are under a heat warning for at least the next 5 days and more... looking at temps above 105 plus the heat indeces bringing it up to 110 and above at times...
Things are just a mess right now and I am about ready to throw in the towel, throw my hands up, and then hide under the bed for the next month or so... Gosh knows when it rains it pours... and my doctors all agree, I am a "complex and complicated" patient... YA THINK???
I apologize for not posting more here, but due to my health issues and then all of Mom's things, I have really not been able to sit here for very long to post... I decided I did need to come in and post a few things and share why I have been "lax" in my postings lately....
Here are a few links also I want to share with you...
http://blog.arthritis.org/stories-of-yes/miss-teen-minnesota-juvenile-arthritis/
http://www.lupusresearchinstitute.org/lupus-facts/fight-lupus/lupus-and-your-skin
http://www.lupus.org/general-news/entry/statement-on-the-results-of-epratuzumab-study-for-the-treatment-of-lupus
http://blog.arthritis.org/living-with-arthritis/omega-3-fatty-acids-arthritis/?utm_source=facebook
By the way, talking about "Fish oil" and such especially for your pets, dogs in particular, I had a friend tell me about her dog, who was very, very old and had severe issues with joints. She had put her on "Canna - Pet" which is "industrial hemp powder".... I tried it for Tazz a couple of months... and it just helped her immensely. I was so surprised and thrilled. BUT I was NOT thrilled with the PRICE! The stuff is like $30.00 for a month's supply. In fact, it would be 60.00 a month if you gave them 2 a day... anyway, I did my own research on this "hemp powder" and began to find that there are many "humans" that use it for all types of problems. Especially joint pain, and inflammation... even allergies and so forth. So, I looked on Amazon and found a bottle of "100% hemp powder".... and this has NO THC or whatever the initials are for what is in cannabis that humans use to smoke... it contains none of that... so there is no "high" anyone would get, and it would never show up in the bloodstream or urine. So, I ordered a fairly large canister full at about $10.00. Well, the price right there was much better, but I was not sure how well it would work... It works just as well if not better than those capsules, costs a heck of a lot less, and both dogs even like the taste of it. I can take a treat, or a piece of fresh fruit etc... and roll it in the powder and they just love the flavor. So, I've been giving it to them every morning, and then I put a bit on their food.... I can see both of them up playing, and doing things that before they just almost could not do, especially Tazzy.... I wanted to share this with all of you, and also the fish oil they love too. I feared they might eat their food, but they eat better with the fish oil on it.... LOL!!!! Anyway, a bit of information for some of you..
http://www.medpagetoday.com/Rheumatology/Lupus/52814
Lots of great news above... from information about Fish oil and its benefits, to a new Lupus medication on the horizon, Miss Teen who has made her dreams come true in spite of fighting Juvenile Arthritis, and more... I think you will like reading these...
http://www.ucb.com/presscenter/News/article/UCB-announces-Phase-3-clinical-trial-program-for-epratuzumab-in-Systemic-Lupus-Erythematosus-did-not-meet-primary-endpoint-nbsp
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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...