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"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
Please take time to write your Representatives it only takes a couple of minutes from the link!
I've been "broken" before.... by illness, by others walking out without reason, for trying to survive. So many call me "brave", a survivor. Yet, they don't see the scars, on my body, but worse those on my heart, soul and mind. These days the fear fueled by not only my own illnesses that more than once damned near killed me, but then COVID-19 ONLY FUELED that reasoning for hiding, for staying at home, for hiding behind the mask literally. I am much to scared and scarred to allow anyone in again.
I am too frightened of what someone may do if they see what the heck I truly look like now. So many surgeries, scars from the past and now even present. But, moreover the internal pain, fear, and scars that are deep seeded in my mind. What I SEE when I gaze into the mirror, what shadow of a slight person looks back at me. Just when one thing seems to get better, suddenly something else appears. All too often doctors can't explain what I have. They can't give me a reason or rhyme for what suddenly appears out of the black ink darkness of chronic illnesses. They don't know, often WE as patients know more about why, what, and how we find ourselves ill with something else
So much of me can be explained by music, by lyrics, my about the only thing that motivates me anymore. I know I am NOT alone. So MANY of us from all over the USA and the world suffer, are driven to so many doctors, medications and yet we find no answers. Only more questions.
As Keith Urban's Lyrics, "What if I Fall, What if I Cry, And if I get scared, and WHO is my "Fighter"... nowadays my only "Fighter" is myself.
I'll post more, I have to get the other off my laptop also ;)
NOT good news, collarbone and shoulder blade still broken and have a huge gap in the breaks plus bone fragments.. I had 2 FRACTURED RIBS AND DID NOT KNOW IT!! My "rotator cuff" is so torn it will NOT hold another shoulder replacement. The replacement is okay that is there but just holding on by a thread. Plus it appears I "may" have a particular illness that Lupus or RA can cause effecting at least my right lung.. The didn't do the CT scans bt on the fractures so the CT Scan was large enough to find the ribs and the lung issue... and i know I don't know what to say either other than I will live with it I guess... I don't think it is fixable... and if it is that bad as I said just the messed up rotator cuff leaves out a new replacement... I am more than FED UP!
I KNEW from the age of about 35 I HAD "lupus" "Ra" or some other autoimmune disease. I had already began with multiple joint pain/surgeries,, I could not be in the sun light long, I never could get my body temp to be stable (I was either hot or cold), I ran a low grade fever for several years, I had HORRIBLE MIGRAINES but they seemed to be "different" than a regular Migraine (Lupus Migraines. I went to my PCP, I went to my PCP while in Seattle WA, I asked and was X-rayed, had CT scans, MRI's, I was tired a great deal. RA RUNS in my family. I had knee surgeries, elbow surgery, shoulder surgery before 40, had a heart attack at 40. It TOOK me at least 15 years to find the RIGHT doctor to help diagnose me. In 2007 , after BOTH KNEES BEING REPLACED. My then Orthopedic doctor told me he felt I hd RA or some type of chronic illness attacking my joints. By then the pain was horrible, changed with the weather etc. Our town got a new PCP in thank goodness! HE is a GENIUS! He gets to know the patient in all manners, not just a body that needs help, he works with mind soul, what is happening in your life, tells things in plain English. Is THERE anytime you need him. I began seeing him about 2 months after he opened his practice. After 2 years or so, he began asking me about "autoimmune" issues, had anyone did labs, did I have "arthritis" run in my family? He DID ALL THE LABS HE COULD FOR AUTOIMMUNE ILLNESSES. Immediately, he said I feel you have Lupus, and maybe another autoimmune problem. So, I FINALLY SAW MY 1ST RHEUMATOLOGIST, in 2009 or so. He ran his own Labs and di a very thorough exam, questions, and within a week, he told me, he felt I had, Lupus, Sjogrens, Raynauds, "hypermobility syndrome of the joints" & that although the Lab for "RA" was negative I may have "seronegative RA". I went through 5 Rheumy's before I finally found 1 who knew my issues, was patient, kind, took his time really LISTEN still is very much active with all of it and he works with the Lupus, My Rheumy is more a "RA" specialist, so he sees me more for that.
so there is just a piece of y "journey" that is still ongoing.
I have 1st a "laundry room" that as built onto the house after it was built in 1950. In fact they just left the "outside wall" of the house for the wall itself in the room. It's about 6' x 9' at the most. I had a HOT WATER PIPE BURST underneath that area, & the way my house and land slant, I didn't find it till I went into the laundry room and MOLD was growing everywhere and my backyard looked like a "heated"Olympic swimming pool! The laundry room was already in horrible shape & I intended on having it removed & built BUT COVID came in, then I've been ill & also have had and still do a fractured collarbone & should blade that after 15 WEEKS never healed. I want that laundry room torn off & the door that is metal put on where the door is into the laundry room to the kitchen now. I need a new storm door but the metal door is good. I also have my toilet that I think ahs rotted "laag bolts". A plumber seemed to think it's the wood BUT I think the wood maybe fine, it just needs to be reseated with a new wax ring, & new lag bolts. And I have the new insides for the tank already just did not put them in yet. The hot water pipe leaked mostly down fro the laundry room BUT hat heat and steam "lifte" and cracked some of the "Hardie board" in my kitchen by that door that goes into it. need some floor work there. My "intention" is to tear down that horrid laundry room, then I already have a "wooden storage shed" picked out at Lowe's to put almost up agains the house, with a small breezeway so I can come up and down to the house and to the laundry room. It already has windows, the floor but I will have them put the treated floor in, plenty of room, a shingled roof, and when my water heater that is BEHIND my fridge in a closet in y kitchen goes out, it can go in that "new laundry room/shed" I am going to put lights in ther, my plumbing and electrical are already out there, just probably extend it 5 to 7 feet to the new one. I also have a HUGE tub/sauna/jacuzzi/awaterfall,rainfall, foot massage SHOWER, that is in very good shape. I want to ge it out of my batroom, and just put a simple walk in shower in. The TUB now stand on legs and come apart, and I would sell it, or whatever. I paid 2,500.00 about 15 years ago, & I even along with a friend put it together. It needs to have the caulking all cleaned etc and reset the glass windows in it, but it is still in very good shape. With the issues with my joints, etc. I don't need to be stepping into it.. I have already fractured what I said above, plus a hip about 5 years ago. IF I can't sell it, then I just want it gone and the walk in shower put in. Simple, like one from Lowe's etc... and I want to put my own seat in it. So, something simple is all I need. Also, about 4 weeks ago, my naighbor was helping now my lawn and a piece of METAL IRON HOOK, camae FLYING though the bedroom STORM WINDOW, OLD WOODEN WINDOW, BROKE MY MINI BLIND AND LANDED. Had the mini blind not stopped it, I was walking into the bedroom when it came in. I think during all the ectreme heat, it shrank the ground back so far, and then it rained and this lot I find all kind of glass, metal, even old medicine bottles, pieces of china etc.. I have TWO windows on that North side. I want to take both the storm windows and the ol wooden windows out and just put ONE GLASS window there. Does not have to open etc, jus t filter out some of the morning sunlight. My neighbor did theirs that way on a couple of them I I love it. The old windows in the house are also rotten, well some of them. Ao, those 2 could go, and that one window take the place. I have some minor, a ceiling fan nees to be hung, I used to do them myself but can't get my right arm over my head any more. I have a new set of outside lights for the back that need to be installed. My barhoom already ahs the lgihts and bathfan ran and in the ceiling BUT they enver got hooked into the main wiring, so that is another small thing, a mirror for the bathroom, a light fixture for over the sink... I NEED A ROOF! But, the laundry room and shower, and reseating the toilet are my main issues right now. Between COVID messing everything up for so long and my own illnesses etc it seems every week something new happens. So, that is most of it! I haave a huge back lot, (that needs to be mowe) but that is not in the mix really, but all that old lumber, and some trimming of trees for the new laundry room COULD go back there. I have a huge gate in the back & as rotten as that stuff is, it will be saw dust soon. So, let me know "what" parts you may be able to do something about, or if not I understand.
It comes and goes... and I have been having to keep a carful eye out for my diet, what I eat, what is in it, when I eat it etc. I have always been a sweet lover, but have used either Splenda or Stevia ever since they came out.. and quit any "man made sugar substitutes."
But, I love cookies.. and MANY of the bought ones have "high fructose corn syrup, which is 1 thing that I to keep away from. I was not a big chocolate eater, but a couple of years ago, I began eating a bit of dark chocolate.. but I notice that tends to bring on the colitis symptoms, and as much as I used to LOVE peanut butter, now I think anything type of "nuts" even in peanut butter may also bring on the symptoms, even all natural with NO sugar etc. So, I have to really watch what type of "sweets" I either make or buy. Of course I had quit making homemade especially after the horrid HEAT we had this summer..plus it is hard to buy what I need and make something sweet for just ME... so I had been buying especially cookies... but many of them do contain high fructose corn syrup!!! or NUTS, or chocolate & chocolate chips.
I wanted to post this much and will post more tomorrow. Had a really rough week, lots of errands, doctor appt, lab work, got my 2nd Shingrix vaccine, so I am exhausted, and ate something that really hit me hard with the darned Colitis again. In fact my Daughter came up unexpectedly last night.. but I had such bad symptoms with my colon I was not even able to see her & my son in law & grandsons... they leave in the morning so I felt badly missing to see them. But, I could not even walk this morning or step out on my porch.. the colitis had me bound to the house since last night late...
WICKED MEMORY(MEMORIES) NOT SURE WHICH YET...
I've had a new "some lyrics" come to my mind since yesterday... but I only have the "chorus" started.... The name of the song will be "Wicked Memories"... and something like "You left me here, but left your Wicked Memories to fill days with burning pain, even buckets of tears I've cried for you could not put our those fires, only months of rain could put out those flames... and in the blood stained nights, with your rattling chains, that squeeze my heart and bruise my soul. you left me standing, with all the doubts and fears, and a bruised & tattered heart plus a love that's grown cold..." I have MORE floating lyrics around in my head, and can kind of hear the music but this is a hard one for sure...
I watched on that fated evening you walk out that door .. just like you did a dozen times before... this time when you slammed that heavy door...yet this time your tattered picture fell and shattered glass all over the floor... pricked my fingers and made them bleed.. that when I felt the 1st pain of your Wicked Memory... my heart bound by that ball and rattlin' chains.. my days filled with your evil face.. nights haunted by that ball & rattling chains, bruising my heart with their squeeze making my fractured heart bleed.. you took everything but forgot to take your Wicked Memory. I finally fell down upon my knees... broken and bent.. Unwell to everyone it seems... impaired by thoughts of what we used to be and all that you left - that Wicked Memory.. all those buckets of tears I cried could not douse those melting flames, begging and pleading for the fires to fearlessly go away.. it took months and months of cold pouring rain, to put out the fires & stop those licking fiery flames.. As I built a coffin to put in what you left behind, on top I found a place perfect it seems, that where I'll bury your Wicked Memory.. I nailed it shut, sealing it forevermore... Under that old oak tree I buried it 6 foot under the ground., and quickly the tree was dead limbs and withered leaves, cause you wretched it with your Wicked Memory.. Now when she leaves you and she slams that hardwood door, her tattered picture crashes to the floor...shattered glass cut your fingers & pierces your cold soul, when you start to bleed finally you'll know about a wretched feeling of a Wicked Memory.. but don't come around here knocking on my door.. I don't want to hear your voice or see your face anymore... nothing you could do would make me love you anymore.. you tore my heart into pieces for that last time, as you did before.. so go cry your own tears in buckets of pain, I'll bet even months of cold pouring rain, will never put out her fiery burning flames.. and someday when you fall down upon your knees, You'll be surrounded by Her Wicked Memory...
KNOCKAROUNDS - BOTH AWESOME AND AFFORDABLE PLUS 10 OFF WITH THE LINK!!!
BETWEEN MY OWN ILLNESSES AND MY HOUSE DETERIORATING I feel CURSED, HEXED!!!
I am sick and tired of getting "well" only to become ill again within a week! The (C.Diff or whatever) came back after 6 days of going away... I still cannot pinpoint what the hell is causing it. And the one tiny spot (after just about ALL of the weeping Eczema is gone) suddenly the top came off of it and it began slowly seEping AGAIN!!! As I said only son's pot, think honestly I am "cursed", hexed... or something that... I know that sounds almost insane not a usual "human issue" in health.
But, to have SO MANY THINGS HAPPEN within a short time after Jim left in the wind back to Seattle, I have had nothing but grief and heartache... my Mom passed away, i lost my teeth and had to have dentures made, I fell and broke my hip and spent 5 weeks in inpatient rehab...lost both Tazzy and Bub's suddenly, got this C. Diff or WHATEVER THE HORRID STUFF IS, but it goes away and is back within weeks, broke my collarbone and shoulder blade, it seems it just continues on and on... I FEEL HE HAS SOME KIND OF HORRID GRIP ON ME EVEN FROM THE GRAVE! Hard to explain how MANY THING HAVE GONE WRONG WITH ME, AND THEN THE HOUSE... hot water leaks, then ruined laundry room with mold, toilet still need to be reseated, my lawn is horrible, and I can't get out and work on it as usual, too hot,, then all the illnesses etc, .... praying, praying praying yet iI feel hexed, cursed, punished for "something" and I have no clue what or why!🥲😢👎🔥💔☣️❓❓
Will explain more but broke my collarbone over the weekend.. took an accidental fall over my step that goes into my huge tub/sauna/jacuzzi
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.
Eczema Contact Dermatitis - Recently worsening so I a asking questions & researching... Feel free to post !
FRIDAY, JUNE 17, 2022 AT 6 PM CDT
Man dies from this after losing his wife in the mass shooting at the school in Uvalde Texas!
Joe Garcia, whose wife was killed in the Texas school shooting, died Thursday. Doctors said he showed signs of broken heart syndrome, which mimics a heart attack.
I've had to learn if I need a "hand up" or a word of faith and hope, someone who understands your momentary set back in life, or someone who tells you they care understand and give you a prayer.. I had to come to where my true friends are and tell my sadness, hurt, or difficulty..
For without me asking I shall never receive, that persons saying they understand, they lift you up, pray for you and say there shall be better days. Some of of tend to have MORE problems, from illness, trauma, or just what someone might call a "run of bad luck". That is when lying that cross down and asking for others to pray for them, or needing need to hear from others that have been through that same thing.. through the "tsunami" of the times in life when you feel just just can't take another set back, face another illness or surgery, or get bombarded with the junk of life, a friend can lift you up by just a few wonderful words, or prayers, that puts you back in your own drivers seat and takes the gloom out of your life.
Anyone who claims to have never have had difficult times, to have never been struck down by loss, grief, to have felt the harsh time of depression, or felt worthless are not facing life as it comes to them. I often think back upon my years in life, & see that a weight, a cloud, a mystery of of the unknown tend to fall my way. If I share it with others then they can feel lifted up and not so alone & I get the thoughts & prayers back.Ah, but you must "ask before you will ever receive"...
So Much to Do, to Say, To want to do, NEED to DO!!! Yet, the battle of it All goes on.. from COVID-& Variants to pseudo-gout, to THIS HOUSE falling Apart! Where are the plumbers, electricians, Handy Men & everyone when you REALLY NEED THEM! HELP!!
This is a couple of posts from Facebook I have posted & due to all of my own health issues especially with my Hands, Wrists, fingers - the RA Flares, the Pseudo-Gout and as it goes on.. I wanted to play catch up here a bit..
Oh Yes and INSANITY IN TEXAS WITH OUR WEATHER (and as it seems every place else in the Nation)
thy said on the news that ALL 50 TATES HAVE SOME FORM OF COVID - EXCEPT ANARTICA?? AND WE WONDER WHY...
Back to the house needing to be repaired! In am no good at making dumplings. They tend to be like "rubbery balls of mush" LOL! Honestly, after baking a small hen for Christmas rather than turkey or ham. Then having more chicken left over than I thought, all 3 of us I think are "tired of chicken"... I decided yesterday to go to something completely different. I did some fish portions, which were good, some regular fries, and a couple of onion rings. Then I made "Ranch dip/dressing" of my own, had yogurt, small orange jello with the cool whip inn it & Voila' something different... Even the fur-babies Bella and Peanut were thrilled... LOL!!! Well, the holidays are past, which seems crazy. The temps went from 80 degrees night before last to 25 degrees up in the day yesterday.. of course my poor plants on the front porch are beyond "freezer burned"... & that wind and wind chill plus the temps yesterday kept me from barely walking on the porch, it was SO BONE CHILLING COLD! Typical TX - 80 and shorts and in less than 3 hours 330 and headed down to 25. Thank goodness, I DID get bth the inside and outside of my A/C window unit covered up, got the water loose from the outside spickets, got the hummingbird feeder and my new bird feeder cleaned up, washed & put up for the winter. I am still working on the research for which "Tankless Water Heater to buy for the house QUICKLY!!!" Getting research and which "walk in shower" (WITHOUT DOORS JUST A SHOWER CURTAIN) that has to be done. I have got to get at least 1 set of rails for my front porch up. I just cannot carry things up and down even as "not steep" as those steps are in the front, they are danger to me and everyone. I thought at 1st I would do metal BUT, that would be HOT in the summer and freezing in the winter. Plus between rain and humidity that metal would be useless. SO, I thought I would use treated SMOOTH lumber and just stain it. The steps are concrete so those rails can be anchored into the concrete steps. I really only need ONE set. I use only the right hand side coming up and going down, so for now 1 set would be fine. I had forgotten but those ROTTEN WINDOWS IN MY LAST "BEDROOM" in the back have to go! No repair, they just need to be removed & I am going to put a couple of windows like my neighbors. Theirs are a bit wider, but shorter. Plus they are perfect in that area for where plants sit, and they will get the sun they need. I have a total of SIX big of the old windows that were "weighted" like most of the homes that are especially wooden are around here built in the 50's. But. the people that owned the house I bought it from must have not had good renters, the windows just were not propel managed, ... they have breaks in some of them, they tend to stay wet, where that part of the house is more shady and so forth. Plus, my neighbor and I are talking about letting him do the work (which is most of it) he can do. He has been doing all kinds of hand-man things from showers, to light fixtures, doors, and you name it for people here in town. So, he is good, he is very TALL! LOL! Actually most of the time he can stand on the floor and put a ceiling in without needing a ladder. By the way, I am STILL GOING TO SELL THIS HUGE SAUNA/TUB/JACUZZI/WATERFALL, RAINFALL, & YOU CAN EVEN ADD ANSWERING YOURB PHONE, IT HAS A STERO BUILT IN, TWO SHOWER HEADS AND THE RAINWATER FROM THE TOP.It can be taken apart all glass doors, and then set up again wherever someone may want to set it back up. I supposed you could take it and put it into the wall. I left mine on the legs, put tile under it so I could move it if I ever need needed to. A "walk in shower" will be PERFECT" for the pups and me. They can't climb into and out of the tub either. Not with their hips and legs. I am going to buy one of the already ones with all of the surround walls, get the bottom one, which will fit where my drain is, & will have PLENTY of room left for either adding more shelves in the bathroom, or adding more onto one side that goes into the closet of the bedroom, so I have ore walk in & storage space.