Showing posts with label autoimmune illnesses. Show all posts
Showing posts with label autoimmune illnesses. Show all posts

Sunday, July 3, 2022

In process of opening up (older blog for music, and other items) & do blogging HERE in the lines of staying with CHRONIC PAIN/AUTOIMMUNE ISSUES (NEW)

 In process of opening up (older blog for music, and other items) & do blogging HERE in the lines of staying with CHRONIC PAIN/AUTOIMMUNE ISSUES (NEW)

I have so much of "both" more personal things such as music, and the link, that really does not pertain to "Autoimmune & Chronic Pain Illnesses, or Advocacy such as WEGO Health (now also Social Media Awards & a part of the Social Media Network)... and all that goes along with illnesses, medical items, from new biologics to the latest in using your own body's immune system.

I have been hearing about a technique that uses your own immune cells that are injected into painful, arthritic joints which heals your own self so it is more of a "personalized medication plan". Rather than antibiotics, NSAIDS, or other items, even surgery to "fix" the problems; especially involving your larger joints this was already and is being used to fight COVID. 

Sunday, May 3, 2020



During this time of health crisis, we invite you to shine a little brighter. Congress has proclaimed May as Lupus Awareness Month. We ask you to consider turning purple on May 15, 2020 in observance of Put on Purple Day — a day when the global lupus community rallies to bring greater attention to this terrible disease.

Wednesday, March 20, 2019

Happy 1st Day of Spring & Hope Nice Weather Brings Less Pain, Less Flares & Feeling More Energy!


Wishing us all better days ahead. I .along with many of us have had a rough time this past winter from all of the rains, snow, ice, cold, bitter cold, and then from "warmer" to "cooler" over a day's time.

I found it interesting that this winter I spoke with many people who had never had a "joint" problem, or pain, stiffness and bad issues with joints. Yet, everywhere I went there seemed to be those that never experienced symptoms of arthritis, & other joint issues that have really suffered over the past several months...

It seems more people are beginning to suffer than ever before. I know I've pondered the reasons why may, that never had problems are now limping, stiff, in pain, and having major joint problems... weather? age? temperature? our polluted air water and land?, all of the "preservatives" in our food??? Makes you wonder for sure...

Monday, March 18, 2019

Now the Government wants to "have our "Social Media" used to determine if we are Disabled??????

Talk about a crock! They will do anything to try and take away our benefits many of us worked for years and earned SS and Medicare, when after 25 years or more we become too ill to work and need our disability!

This is just absolutely ridiculous! I feel like they prefer we pass on, rather than try and live what life we have with our family, friends, spouses, and enjoy the days that are often few that are good.

Wednesday, August 23, 2017

Letter from the Arthritis Foundation to Paul Ryan Speaker of the House and Congress!




Thursday, March 9, 2017

Dementia linked to Autoimmune Illnesses? This is both interesting and frightening....

Dementia Risk Up with Autoimmunity

Here are a few excerpts from the article on Medpage Today...

Among the 25 autoimmune diseases, 18 had significant positive associations for dementia (P for all <0 .001="" p="">
  • Addison's disease, RR 1.48 (95% CI 1.34-1.64)
  • Multiple sclerosis, RR 1.97 (95% CI 1.88-2.07)
  • Psoriasis, RR 1.29 (95% CI 1.25-1.34)
  • Systemic lupus erythematosus, RR 1.46 (95% CI 1.32-1.61)
  • Thyrotoxicosis, RR 1.31 (95% CI 1.27-1.34)

Of the 81,502 patients with autoimmune disease who also developed dementia, the subtype of dementia was identified in 42,568 -- 20,032 with Alzheimer's and 22,536 with vascular dementia.

Risks for vascular dementia but not Alzheimer's disease were increased for idiopathic thrombocytopenia purpura, pemphigus, scleroderma, Sjogren's syndrome, systemic lupus erythematosus, and most notably, for polyarteritis nodosa, with a rate ratio of 2.12 (95% CI 1.42-3.05, P<0 .001="" p="">
I have a "genetic" factor for autoimmune illnesses on my Mom's side... and also Dementia and Alzheimer's on my maternal side... Cause to really be upsetting and hope they do much more research into this....

Sunday, November 20, 2016

Shout Out Tuesday! (I missed!) sharing the love to those Health Activists that Truly give me a "hand and foot up" when I need it the most! (TUESDAY 15th ,2016)

TUESDAY 15TH - WEGO BLOGGERS ANNUAL EVENT -  shout out Tuesday to some of my great people in the HA and friends world!

I must thank Laura Keivel with the Arthritis Foundation. She has helped me and continues to help me get through some of the very tough times these illnesses , and life can throw us in. From all of my own health issues, to Jim's accident while I was at the Summit with them in DC in 2014, Laura has been right there, helping me in any way she can as a mentor, a friend, and giving me advice to make me feel like I can still "charge through these things" and bring my activism and writing back on tract. Laura, you are just a true angel.

Barby Ingle and I got to know one another through chronic pain, and also with her writing, her testimony and advocacy skills, and also someone who can be so ill and in the hospital yet bounce back and be on the road again, never allowing the pain and chronic illness steal away her "show" through her goals, Barbe Ingle, you are an inspiration.

Kerri Fabert I met during my 1st Summit in 2014, She lives about a bit over an hour away from me, and has Sjogren's that now is effecting her sight even worse than ever. Yet, again, she is a loving wife, Mom, and works in the medical field, as well as does the Jingle Bell Run, and other events to help get the word out about autoimmune illnesses and yet how we can ALL can contribute in one way or the other, Kerri THANK YOU FOR ALL OF YOUR KIND WORDS and being a role model in so many ways, activism, being a fantastic Mom, Wife, and friend.

WEGO Health has SEVERAL INCREDIBLE PEOPLE, that always are there to answer my questions, and listen when I need an ear to "bend".  Susan Mees, Danielle Schroth, who is Community director and also works with Cure Ckick, helps to make Cure Click something that everyone can do to help spread the word about Clinical Trials. I am so proud to be a part of Cure Click!

Pam Gill, from the more "local" part of the Arthritis Foundation, I met at the 2014 Summit, is just a sweetheart. She is a huge advisor for our District in this Central portion of Texas, and keeps everyone up and going' excited about all of the activities, from the National, to the State and Local parts of the AF. Thanks Pam for being a great friend and even though we don't speak much, I always know I can email you for guidance and help.

KRISTEN AT WEGO is such an upbeat and sweet young woman! She is always giving up hope, encouragement, and reasons why she feels "we" are what makes "WEGO" work! - "the patients"!

Gosh, then there is Laurel, Jackie, and so many at WEGO Health, that I am so thrilled to be in touch with from time to time. Everyone At WEGO are just wonderful people, and I feel blessed to be a part of the patient team.

There are so many more of you that give me hope, lift me up, and give me the strength to move on, even when I feel I am not make enough of a contribution,

Clarissa Shepard who has a huge following on her Facebook group about FM, and the illnesses that go along with them. Clarissa is also a dear sweet lady and friend, who is there when you need her, and works herself day and night keeping up with all of the information about FM, and the other illnesses that go along with that fight, Much like other autoimmune illnesses, Fibromyalgia, is yet another one of those mystery illnesses that we still have a very long way to go before we understand the issues surrounding this horrid "disease". I appreciate you Clarissa and thank you for your hard work and friendship.

This is hard to do because I know I am missing many... but know ALL of you are in my heart, and I am so elated and feel honored to know each of you in all ways....

Monday, November 14, 2016

WEGO Bloggers Challenge for Saturday 12th - Time to "get real" with your doctor


Well for one, I am sick and tired of doctors thinking that just because I patient may do research on their illness(es) or look things up, I cannot fathom a doctor getting upset or calling a patient a "moron", Layman, and telling them "you do not know what you are talking about".

I agree there is a OVER ABUNDANCE of some really ridiculous information online for everything! Not just the medical field, but just about anything you want to search for.
One has to learn how to "think" about what you read or hear when it is NOT a specialist, and try to weed out what really is silly, or does not apply to your case.

Plus for myself, when I go into my doctors offices, and ask questions or tell them about something I've read online, often times "most" of my research, is usually almost right on target. Not always, and I have one physician that LOVES and "educated patient".

But, one is a complete jack-ass to put it like it is, he ignores anything I have to say, he tells me I am basically stupid, and leave the "doctoring up to those who do have the "knwledge and education" to do the "medical work".

I SO would love to tell him, that I have been to "some so-called" doctors, that not being narsaccist but I KNE more than they did about some things. When you are chronically ill, many of us DO KNOW more about our conditions than doctors. WE KNOW our bodies, we know what feels right and what feels wrong. We understand the articles, even bloggers posts we read, and they also know many things our physicians never are even taught, especially about autoimmune diseases. My own pain doctor will admit, that I know more than many medical workers, including doctors, nurses, PA's, and NP's when it comes to my own conditions, because I do research things, I do decipher what is "not right" and what may be deemed something critical in my situation.

I would love to tell every doctor I have been to and others, that they NEED to be EDUCATED MORE on autoimmune and rare illnesses, because in many cases now, WHAT WAS RARE, is NOT that rare anymore.




Thursday, February 25, 2016

Eldery parents,caretakers,your own illnesses,surgery,family matters, Humana and insurance,doctors offices and issues, and more...

 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.

Thursday, November 12, 2015

Moving Past "Loss", now I face another specialist, a "wound care specialist" and trying to survive from autoimmune illnesses, and all that comes with it.... more also about the accident...

There were a couple of my friends who posted on FB to me, and this is what I wrote there in regard to some of the things they mentioned... in the days to come, I will reveal much more about this accident that has totally destroyed more lives than anyone knows... and how I see that in the end, those who harm others knowingly, and then lie and cheat... later do get what they deserve... and as from personal experience, I never have to do anything... life takes care of those people in its own way and time.....

I almost feel like I've had to "begin a new day of my life" over and over and over again, almost like "Groundhog Day" the movie... where each morning you wake up, wanting things to be different, to move ahead, to break from the stagnation of all of the bad stuff, the illnesses, the sadness, the grief, the loss, yet it remains... I am trying so hard to get well! I desperately want to get a new pup for myself and for my Chiweenie Bub's.. He is just now beginning to show signs of being "happy" again. He is eating much better, he is bringing me his toys, like last night, he brought me one of his latest "babies", I have called them their babies... and he wanted me to play with him... he had not done that for months and months... between Jim leaving so suddenly, then us losing my Pug Tazzy, who even though at times they appeared to be a bit of rivals, he misses her so much.... and he also "fears" I will leave and not come back. I see it in his eyes, when I tell him I have to run errands, and I will be back soon.. and then when I come home, his is almost crying, standing at the door, and I can tell he is so relieved I am home again... I've really tried to give him even much more love and attention that before.... just so he knows I am not leaving him.... but I feel with the right new "fur-kid" he will once again have a playmate, and someone here to keep him occupied when I have to run errands.... and that of course is just the "top" layer of many layers of life... almost like these two "holes" in my thighs... so many "top layers" of my skin look like they have "eroded" - and it is one frightening sight to say the least... I am also extremely concerned about Jim and his own mental and emotional state, after such a terrible let down with the trial.... ALL OF US AGREE even our lawyer that their were "lies", "people were paid off" to lie, and the driver and owner LIED under oath.... and then I still question the "jury"... there was something terribly wrong with them... I saw it, and I was only there a couple of hours... but I saw it in their faces, and it was almost as if they had made their minds up even before the trial began... a "corporation" again us "individuals" and if they are "dirty" then they could care less about the lives that have been destroyed by their own employees recklessness on the road, his driving while TALKING ON A CELL PHONE, and on so much more... BUT THEY have to live with themselves every day... and if they have any "heart" and maybe they just do not... it will be a burden they carry around forever and to their own graves. I do know from doing a search online about the company, that they have lots of "not satisfied" customers, who say online they have lied and cheated them... so that tells me enough, plus they were TOO SURE through this entire mess, they were not willing to budge an inch, offer a settlement etc... because they PAID OFF people to lie... no way, no how these "so called" witnesses, "seen" that accident, where the car was, whether the hood flew up or not, and I've said it all along.... those people were "found" before I even got the police report and paid to lie... I know it in my heart, I just cannot prove it.... so let them stew in their own deceit... what goes around.... definitely shall come around... I have watched it happen way too many times... I never have to do a thing, but sooner or later those who harm others lives, do pay a price....

Saturday, November 7, 2015

Abscesses, Catching you Up, and letting you know that I shall be back very soon... please continue to follow me.... the realms of life, autoimmune illnesses, Lupus, Sjogren's, surgeries, pain pumps, & the "trial"...

I apologize for being "MIA".... LOTS of stuff happening here... for one I had BOTH abscesses incised on Monday... the "1st" one got infected again, even though we thought it was okay, then the other lump on the right thigh got horribly abscessed, so the surgeon opened the both of them up on Monday... IN HIS OFFICE!! Do NOT even get me started, I am one tough cookie when it comes to pain, and procedures, but I should have been taken to outpatient and put under sedation... I have pics of them on my FB page, and honestly the right one looks worse today than earlier in the week.... I am on antibiotics, but I do not think they are helping the right one at all... I have been on Rifampin and Bactrim now for weeks and weeks... and they have helped the left thigh, but as I said the right one is swollen "angry red" and HURTS like heck to have to open them both up at least 2 times a day and go inside them with cotton swabs and peroxide to clean them out.... and I fear I am running fever.... and some may know that my "internal pain pump" also went into a motor stall... well they had information the first time it "re-started" itself, and my pain doc reset the meds in it, and that lasted about 5 days... then a week ago yesterday, the Medtronic Rep drove from Dallas down here and met me at the hospital to "turn the flow down to nothing"... so just in case it starts again, I won't get the meds much at all, and then they have me on strong oral pain meds for now... so I face surgery to implant a new one, but no way will they touch me in surgery until these infections are cleared up... and gosh knows when that will be... then the "trial" was this week for my soon to be ex-husbands wreck, in March 2014, when I was in DC with the Arthritis Foundation. I did not go at all until yesterday mid-day. I testified, which meant reliving the entire ordeal again... not fun, but then I drove back home. I did not stay, honestly my doctors would have freaked had they known with my current physical issues, drove 35 miles plus to downtown Dallas, went into a "germ filled" courtroom, etc... but I felt I did need to say my own part of all in this.... in so MANY WAYS this horrid nightmare of a wreck, totally "wrecked" my life, physically, mentally and emotionally, and in some ways even more than Jim's... there is a great deal of the first almost 3 weeks, he does not remember at all... and he does not remember a moment of the wreck in itself... anyway, due to all of that, along with my Mom and her sudden new medical problems, I have either been here just a tiny bit, or not here at all... usually on the sofa when I can be, or taking her to the doc, or myself... and then to the court house yesterday for a couple of hours.... anyway, I wanted to catch everyone up a bit... I have felt badly about not being able to "share" posts, and put things up on my blog over this past at least a week or more... but honestly, I have felt so lousy, and with the trial and all of that... plus I am trying to get well enough to "adopt" a new pup... I still miss my Tazzy so much, it just breaks my heart each time I think about her sweet face.... so hopefully after next week... my hopes are there is a huge load lifted off of our shoulders... and I can "hopefully" try and find some way to put my life back together... anyway, I thought the comment was cute Tiff.... and thanks all... also hope to be back here, posting, sharing, and getting back to what I love to do most... my advocacy and activism...

I am extremely concerned about the right thigh and the abscess... it is so totally red, swollen, and it is just a nail biting horrible pain to have to clean it all inside with peroxide and cotton swabs... but it has to be done, and either I do it, OR I do it!

Anyway, to ALL of my followers here, please forgive my brief absence... and I shall be posting more hopefully from now and forward... by the way, the damned pain pump keeps turning on and then stalling... each time it does that, my "side" starts beeping... that was a real "hoot" yesterday at the trial... everyone would look at me... I had to wonder what they thought... they were supposed to have been told about it, but I think that did not get mentioned, thus it was kind of funny to see people staring at me....

Sunday, October 4, 2015

Chronically Ill, Feeling Chronically Hopeless and Helpless - Trying to sort out Autoimmune illnesses, from the entangled life many of us have....

I am having an extremely difficult time (with everything) I guess I might as well say... but several are just really getting to me.... first of all, as many of you who knew about the "accident" in March 2014, which totally tore our lives to shreds (if things had not already been lousy as far as health issues)... and then that happened... most close friends know about the "ensuing" "law suit" that has been ongoing now for almost 20 months or so... anyway, many know that my own health just went all terribly down hill due to the untold amount of emotional, mental and physical stress I endured. I am NOT saying at all that my "partner" who had been married to me for 10 years and we had been together for 13 years, has gone through as much and in many ways MORE emotional, mental, physical and psychological stress... the turmoil for few seconds were on I-45 headed into Dallas, took what was somewhat of a normal daily life, although I had endured several chronic health problems, and turned lives, mine, his, my Mom, my two kids... and many others have been effected by this... He decided to move on, and why honestly until this moment, I am not sure why.... but nevertheless, he had his reasons, some I may 'get" others I don't get at all, but again I went through and am still going through a "mourning"... a "grieving" process even though there was not a 'death" in this instance, thank goodness, it still is a LOSS... a loss of a relationship, a friendship, we did everything together... and now I am here and he is in WA state.... so with that said, after losing all of my teeth due to Sjogren's and the stress.... the RA, Lupus and so forth growing worse, then 2 bouts of double pneumonia for me, and now a break out of cellulitis first, along with the abscess that was after the cellulitis... all related to one another, and another "lump" that has not been cut open and checked yet. It probably needs to be biopsied also, although NOT growing larger as this 1st one did, it is also NOT going away either... now add on that I have some issues on my very lower lumbar/sacral spine, that probably really need to be repaired with surgery, then my Mom, who began like I did, with severe "hip" pain, come to find out hers is also related to her lumbar spine. In between all of that, I became terribly sick to my stomach for days, and days and then Mom also had an entire intestinal tract "thing" going on for weeks and weeks. WE HOPE her problems have now been addressed and that part is over with... but i know she is frightened about having stomach, intestinal issues, especially since her last living sibling, my Aunt Geraldine passed away about 2 months ago after fighting a rare form of digestive tract cancer.... so Mom I know is concerned knowing all of went on like that....

Then last week after trying to get a chest Xray performed about 7 weeks or more, I FINALLY did get it, and the information is at my Rheumatologists office (the Xray was done due to a TB blood test not being "correct" thus they did the chest X ray as a followup) but I have not had ANY of my "biologic" meds for the RA since I found the lump in my leg... so for about 3 months I've been terrified to take it knowing it can cause an infection to get worse... but I do see my Rheumatologist, next week thank goodness, if it does NOT get cancelled again because someone did not do the schedule correctly....

And he sent me an email saying we would discuss options at my appt... which is fine with me.....

NOW, onto the part.... many of you also know I lost my best "fur baby" my Tazzy week before last... well on the 22nd of September, I think... her poor heart I guess was just worn out, and after spending an incredible last night with her, singing to her, rocking her, telling her all about our good times together, that early morning she passed away in my arms... I still cannot believe at times she is gone... I come in from errands and think she will be there with her "bubba" just wagging tails and so happy to see me... whether I am gone 10 minutes or 10 hours.... when I walk it I always get a very "welcome home"..... and Bub's my "chi-weenie" he i about 5 I think... 5 years old or so... time gets away from us... but bless his heart... he is missing her, and I hear it when it cries at times, and see it in his eyes... I think he thinks I will bring her home one day... like he is looking for her to be in my arms.... and I had her cremated, so she sits here on my desk right beside me... and I will take her little cedar box down and let Bub's see it.... this morning when I opened it for a moment... he sniffed of it, and kind of looked odd... and then it was almost as if he was telling me "no" that is not my sister.... And he just acted differently than he used to.... so I am trying my best to give him as much love and extra attention as I can... I brought him a new toy home yesterday, and he has been doing really good... I thought he may begin having "accidents" in the floor but so far he has not done that but maybe once.....

A "part" of me wonders if getting a new puppy in the next few months when I find one that is what my ideas are... if that is an "okay" thing to do, and how Bub's will deal with it... I do know he misses Tazz, and he always wanted her to play, tug of war, with the toys... or Bub's likes to sling it from side to side, and he likes me to call his name and tell him "Bub's sling the heck out of it".... so a piece of me, wonders if this is way too early to think about another one, both for myself and for Bub's.... I NEVER want to feel as if I tried to "forget her" in getting a new pup.... and she will always be the light of my life... and nothing will ever change that... the love we shared is not measurable... but also about Bub's... would he feel "less lonely" and want to play with a new pup, or would he get jealous, and feel as if he takes "2nd base" because that is sure not true... him and Tazz were and would have always been treated equal in love... my heart is large enough to love them both... and I try to never show I favored one of them over the other.... plus I am fed up with the world, this nation, the greed, the lying, cheating, self righteous indignation I witness each and every day... whether online, the news, from the papers, wherever I look all I see is total "take care of yourself" and to heck with the needs of others... I was NOT raised that way, and never will I try and do something intentionally to do any and all of the horrible things seen in this nation, the state, this town and this world....

Getting back to my own "personal issues" I used to be able to do just about anything when it came to home repair, car things, and anything DIY - I love it, loved it, and could install a water heater myself, put up ceiling fans myself, paint, you name it, I could do it... and it is NOT that I do not have the know how anymore... I Don't have the STRENGTH especially upper body... my ceiling fan went out in my living room of all places.... and I have it own night and day usually almost 365 days a year, either to cool things down, or pull the warm air down in the winter... so I knew the motor was beginning to get slower, but I got another over a year out of it, but I have to replace it!!! And even with my ladder for inside that I have, I can do it myself, but my arms after the shoulder and neck surgeries, tend to be not enough to hold much of anything over my head for any length of time.... believe me I almost bought one yesterday, to bring home and try... and YES I know to make sure the power is all off to that room etc.... and could but if I get in the middle of it, and have no back up plan, then what the heck? I would have to leave it down, tape the wires up and find someone to put it in anyway.... I am at a crossroads in so many ways in my life... this stupid "hearing" for the lawsuit is supposed to be November 4th, but we do not know for sure, and probably won't until the week before... AND I NEED TO HAVE THAT LOWER LUMBAR/SACRAL surgery before year end due to insurance... and that is another thing , I am going to also have to do research on these stupid Medicare advantage plans... the one Mom and I have now is useless... it does not even cover a HOSPITAL in this county!!!! It has just been a nightmare with them, and as far as I am concerned AARP Secure Horizons - /United Healthcare/ I WOULD NEVER EVER RECOMMENDED THEM AGAIN!!! They flat lied when I looked at their website, and called a number of times to make sure ALL of our doctors, meds and so forth were covered... well once they have their claws into many people AFTER you could NOT change until the next open enrollment, and they did things like "drop doctors" even those they said they would cover, sent some "new cards" that was NOT the policy that person wanted and so forth BUT for Mom she could take her Medicare back, and pay for a "Medigap" Supplemental policy... but for ME since I am under 65 - I have found only ONE "supplemental" policy and it was 700.00 a MONTH!!!!! No one can pay out like that especially if you are disabled anyway So, as you can tell, I've got lots of research, decisions, and so on to make... and I so wished now I would have never been "named" in the suit.... my life would not have nearly as much stress on it..... but hindsight is 20/20

Saturday, September 5, 2015

Cellulitis? An Abscess? A Boil!!?? What is it, was and what is the difference???

Since I just about "fainted" a few minutes ago, I am making this short... and will give more information either this evening later, or tomorrow. I saw the surgeon yesterday and the "lump" on my leg, after changing from "cellulitis" had actually formed an abscess under the skin. So, he wanted to "open and drain" it... and of course send off some of the infection to find out what caused it. He told me that there was "little"cellulitis left... so I was confused, and came home to read and find the exact differences between an abscess, cellulitis, impetigo, and then you can have an infected hair follicle etc... well, it probably began as "cellulitis" which was infection in the deeper portions of the skin... usually no formation of a "pocket of infection" but an infection spread over an area of the underlying skin. Where the abscess was actually a "pocket" of infection that had to be opened up and drained... Now most of you know I am one tough "cookie" due to the many surgeries, procedures, and so forth I've been through, but this FREAKING HURT!!! When he went in and began to injection the Lidocaine to "numb" the skin, I almost jumped off the table! OMG, it stings anyway, but this was even worse than it going in your upper palate of your mouth for a tooth to be fixed or pulled. It kept jabbing around putting an ass load full of Lidocaine in it, and then of course I was lying down, and he had a drape over my leg, but he "cut" in incision into my thigh. I did not feel much of that, but when he began to go into it with peroxide and Q-tips to clean it out, I wanted again to cry.. Lidocaine or NOT it freaking hurt like hell.... he then "packed" it with gauze and his nurse covered it over with gauze and tape. He asked me if I had someone at home to help clean it out a couple of times a day, and I told him I did not think my pups would be too thrilled - LOL... of course I said I could... yet I still did NOT know the EXTENT of this HOLE in my thigh!!! So, about an hour ago, I knew I had to take the bandages off and clean it out, and then put a band-aid or something to cover it back on....Well, I started to pull all of that gauze off the top and OMG, it was soaked in mess that drained out and blood... then I came to that damned packing... I had to pull that out also... and it was about 25 inches or more LONG.. by the time I got all of it out... also soaked with dry blood and pus that came out of the wound... and then there it is this HUGE HOLE IN MY THIGH!!! It is over 3 inches LONG and about 1 1/2 inches DEEP!!!! Now as I said I am not a cry baby about most stuff... but I had to take Q-Tips and put Peroxide on them and literally go inside of that hole to clean it, and he said to do that at least twice a day!!!! Honestly, I cried while I did it.... So, I do that and he will see me back on Wednesday, and said he should have the results back off the culture... but believe me, I NEVER want to go through this again... and I am not sure even what the heck is up with the lump on the other leg.. I did tell his nurse about it, but he really did not address it, and took care of this one first. I guess time will tell... this other one on my right leg could be nothing, or if it is something then it will certainly show more signs, like getting larger etc.... I thought I would be find one that was done, but believe me... it hurts to even walk on that leg.... so that is my "LABOR DAY" excitement... I hope the rest of the holiday is not like that for sure!!!! When I clean it up later again today, I will try to take a photo of it.... but not sure anyone really wants to see it... I cannot fathom how DEEP and wide it is... just a HOLE, where I guess it "ate away" at the tissues there.... 

Saturday, August 29, 2015

Updates on my "Lumps" cellulitis, Surgeon, Removing the Lumps, RA, Lupus, Xeljanz, Mom' injections - my RA giving me mortal heck with my fingers, hands, wrists... & more...

A quick note - I am BACK on BOTH Rifampin and Bactrum now for the FOURTH time! I did FIND a Surgeon Finally that takes my insurance! But, he could not get me in until a week from yesterday, so next Friday! In the meantime, the 1st LUMP began to show "outer" signs of "infection I thought. It was NEVER red or all that sore through the whole ordeal. But, last week about Monday, I began to notice not is it only reddened on the top of the skin, it is also, seemingly "puffy" and sore to the touch. The "smaller lump" is now also a bit larger, but also sore as heck to the touch. In fact just walking sometimes makes them feel tender and sore. So, I called my PCP yesterday and he put me on another round of antibiotics until i can get into the surgeon.

ALSO, some GOOD NEWS FOR A CHANGE! My ECHOCARDIOGRAM came back with a "small bit better as far as my heart function from the last one" which I've not had one since 2011... and I was scared that it might be a bit worse, so hopefully that is good news... but you also hear all the time of people having their heart checked out, having the echocardiograms, ad all seemingly well... then a day or so later, they have a heart attack... so I am trying to stay within the "positive" aspects... also I finally got the CHEST X-RAY!!! I thought that mess would NEVER get straightened out...but it is done, and the report should be at my Rheumy's office early next week. SO, my HOPES are that we go ahead with the Xeljanz BUT I don't think they will put me on it, until we know for sure what these lumps are... if infection, then NO until it is completely gone... and hopefully - due to my RA, being more severe than ever, I am losing a great deal of grip, fingers are so stiff, and visible swelling in my hands and some in my wrists and ankles... along with pain, that had not been this bad... but I have not taken any Orencia now in 5 weeks... still taking everything else... but I fear the Orencia also due to not knowing what these lumps are. Also, my MOM celebrated her 80TH!!!!! Birthday yesterday!!! But, she is having heck with her stomach... we did have a "bug" a few weeks ago... but hers seems to be something else... so we did not even get to go out and eat, and I so wanted to take her for at least the day to celebrate... but she is just not up to it..... Okay more later.... ;)

Wednesday, August 12, 2015

RA, Lupus, Chronic Pain - the Complexities of Living With an Autoimmune Illness and/or Chronic Illness - How Do you Live with the all too often feelings of "guilt" of not fulfilling your destinies...

As you can see the very "title" of this post is complicated, to say the least. As I've had to succumb over the past almost 3 weeks of cellulitis, strong antibiotics that totally messed my entire digestive tract up, to the addition of a "stomach bug" that is going around here locally, I find myself full again of guilt, of shame, of feeling as if I am letting my obligations down as an advocate, a "voice" for others, of my own writing, my blog, my Mom, and everything else that I've had to "put on hold" due to once again the "arrows" of dealing being chronically ill.

There is NO EASY part to being ill with some disease that is so often "invisible", that drags you down within a few moments totally catching you off guard. One moment I maybe feeling great and within hours I can be immersed in sickness, more medications, doctors visits, and so forth that drive me to the sofa, rather than here online, or out and about doing all of the other things that are SO crucial to me in life.

I cannot even begin to count the numerous times that I have the sinking feeling of "letting these diseases" rule and ruin my life. Being ill with something such as an autoimmune disease(s), you feel as if those totally reign over and above any and all plans, decisions, and destiny that you have for your life. They control the very essence of daily living. From whether I feel like going to do shopping and errands, take my Mom out, or to a doctor's appointment, washing my car, cleaning my home, taking care of ALL the things like my flowers, my lawn, having the energy to even re-pot a plant, or give the pups a bath... sometimes just giving "me" a shower can be overwhelming.

No one ever gave us 150% PROOF from the moment we take that first breath that life will always be filled and fulfilling... and that we will live and love without illness, with out difficulties in life, and sometimes the "hopes and dreams" we have had turn into a totally different way of being, that we ever expected. I have not done a "real investigation" but I would bet the number of relationships that "withstand" the all too often complicated life of living with someone chronically ill, that remain SIDE BY SIDE together... is quite low. I am most assured, as with cancer patients, sometimes a spouse, or dear friend, even a family member can reach a place they just can't cope with all of the complex nature of constant doctors, meds, surgeries, procedures, sudden illness... is can certainly be like the "elephant" in a 12 by 12 foot square room, quite OVERWHELMING...

I sometimes see the frustration even in my physicians faces, when I come in with something that is so complicated and complex, they themselves may not be sure what step to take next.

I am not one to "gripe", "Whine", complain, or even remotely think the "my medical issues" are "worse" than other people's... Pain and/or Chronic Illnesses mean different levels of frustration than others. I have had so many people tell me first of all that I am the "strongest" person (emotionally and mentally) they have ever seen... yet, honestly I don't feel that way. What I try to do, if at all possible, is to put "my feet" in that other persons shoes... if you can remotely imagine what someone else is going through, all too often, it makes your health issues seem small  - and I am NOT discounting that yes, I am have several very serious health problems, and have been through some extremely difficult and serious surgeries, procedures, medications and at times any and all of us, including my own physicians, maybe puzzled and perplexed about certain things that happen to me as far as on a medical level. "Who woulda thunk it"? that I would come down with "cellulitis".... and in fact, we "think" - my PCP and myself, that I had a case of shingles about 7 weeks ago or so... they had cleared up by the time I saw my doctor, but the small scars were still there, lined up almost in a row after row inside of my right knee, and when I explained what they had been like, he said that it more than likely had to be shingles... nothing else as far as some type of a rash would have came up in that kind of specific "pattern" as they did... and I have this uncanny "act" of I will be on a medication for one thing, and it so happens, I may come down with something totally unrelated, yet the medication I am on, will help that also. The "shingles" were that way... I had asked my PCP to be put on a daily dose of Valtrex. Since I started the journey with Lupus... I constantly am fighting fever blisters... not so much now in my mouth, but the corners of my mouth were almost a constant bright pinkish, with a bit of blistering it in. He would give me a "high dose" for 2 days, it would clear up, and then a few days later come back... well I had not even taken the "daily doses" but possibly a day, and all of a sudden here comes this "rash"... well the Valtrex would be exactly what he would have given me for the shingles... thus there you have it...

I am really down and out though since all of the illness, back stuff, Mom's back, and so forth, have kept me from writing here on my blog as much, have slowed once again my completing of my 3rd book to a snail's pace... and have just "thrown me" for a loop when it comes to ALL of the things I truly NEED to be doing... but as my Mom and I both said earlier this morning... it ALL happens for a REASON... so there must be at least a "billion" reasons that I get thrown off course, and my sails catch a wind into foreign waters, all too often.

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....


Thursday, August 6, 2015

Trying something new - A "daily" Online "Paper" about Autoimmune Illnesses, Writing, Chronic Pain, Family, Coping, Surgeries & more

Autoimmune Arthritic Systemic Life Daily – Rhia


A "Daily online Newspaper"  I am "Customizing"  for my own interests, advocacy, activism,Ambassadors, Illnesses, Family and Coping...

This is new for me.. not sure if I will keep it.. it depends upon time, and all in between. I don't want to begin yet another "tool" since I really need to put my efforts into finishing my 3rd book and my blog, advocacy etc. But I thought for the moment I might give this a try.