Friday, November 11, 2022

How do you Hide the Scars, External and Internal, fight the fears of Showing What Life, Love & Illness has done to you


 It's been a while since I've been able to think about what I needed to say here. After my last what I thought was the Love of my life, walked out and the "checked out" leaving me here to wonder why; to pick up the pieces of my own broken heart, soul, and try to face the fear of even leaving my house to allow anyone to see "me" like this.

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. 






Monday, October 24, 2022

pdates of posts, and so foth on Lupus COlitis, this "now chronic fractured collarbone and shoulder blade and more...

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. 





Had CT scans done this morning of my clavicle and shoulder blade... so we shall see just how much worse it is than the X-rays which were horrible.. they did not get a good X-ray of the shoulder blade but I think it's also still fractured... or healed wrong.. NOW, I can't tell f my hips are hurting, or my lower back, or if I have KIDNEY STONES DAMMIT! I have kind of flank pan, BUT the weather is fixing to change Even Bella, my Doxie, could NOT hardly walk yesterday on her back legs! She may ahve to go see "Dr. Venetia".. BUT with this still fractured mess of a collarbone etc. and she weighs a ton, and I know where it hurts, I can touch her in a certain spot on her lower back end on kind of a hi side and she will growl a bit to et me know YES!! THAT HURTS!!! But, I don't want her NOT to be able to walk... I MAKE her get up off the sofa and walk a bit, and make her SIT up to eat etc... she wants to lay a certain way when it hurts her , so I have to coax her into sitting up...I am a flippin' mess FRIGGIN BODY AND HOUSE!!!!

Sunday, October 9, 2022

UPDATE... Could be I have developed "Lupus Colitis" since C. Diff ,Parasites, other Bacteria all negative...


 Had a visit with my PCP on Friday. I have developed probable "High "TSH" thus I may be having to add yet another medication for High Thyroid issues. My "Parathyroid" is still getting higher, which I am concerned about a possible "tumor" on the pituitary gland. He and I have not mentioned that, and he tends to think it is due to my Vitamin D  and Calcium being "off" now. they both had been normal for a long while, but after all of the colon issues, such weight loss, etc.. my body has really been through hell especially with minerals, vitamins and such loss through the severity of the probable Lupus Colitis. 

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...    


Friday, September 9, 2022

National Pain Awareness Month! #LifeWithPain


Support All of US and/or family members. friends, or Caretakers that are living in a "World of Hurt" due to Chronic Pain 



 

#LifeWithPain


Thursday, September 1, 2022

WICKED MEMORY (Memories)... (New song lyrics I am working on)

WICKED MEMORY


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...