Need Plumbing Work, Have a wonderful Sauna, Tub, Rainfall, and more shower/tub to trade/sell needing to get things done before lumbar fusion surgery and more...

 Not sure about many of you but I have been basically without internet since the blizzard... it has been up and down morning, noon, midnight, all the time.. you are up one moment & the next it is down... it sucks..especially when there are things you really need to get done, like paying bills etc... by the way, since, (Jim passed away and the internet business higherpowered.com as I had not been reminded, did not get paid of course so that higherpowered.com address and site is no longer exists... which means I no longer have my MAIN email address for bills, for important issues ad so forth. For those that email me, which most of you just message me from here or send me a message or post, just keep doing that... I am having to go in and change ALL of my bills, and so forth, doctors, etc to a new email address... which I thought about making another new domain nam name myself. I have 2, one I had for a long time, the other is named for my blog, book, newspaper etc... which is the https://www.autoimmunearthriticsystemiclife.com

but I have to get with my domain provide to find out just how to set up an email address for that domain name... I hate to use that because it is so long, so I thought about buying a shorter domain and using an email from it. Right now, I have my very old yahoo and hotmail emails that I have kept up and they are still active. But, I have not used them so they are clean of spam etc... so I may use one of them for now. My gmail one is already full of junk... does not take long... I DID NOT of course have the surgery A WEEK AGO, ON THE 17TH, WHICH WAS WHEN WE HAD THE SEVERE BLIZZARD... so I am having again TO RESCHEDULE! I STILL DO NOT HAVE WATER! MY PLUMBER SEEMS TO BE EITHER SNOWED UNDER, OR I HAVE TO WONDER MAYBE HE JUST DOES NOT LIKE ME... I don't know but I am just about tired of it... this is now about 14 DAYS! WITHOUT RUNNING WATER, NO REAL SHOWER, USINF WATER LESS SHAMPOO, CANNOT WASH DISHES, SO USING PAPER ETC... CANNOT DO LAUNDRY... I think I may just have to try to get someone else out here if I don't get any results by tomorrow...I realize it is insane for ALL of the plumbers, but 14 days, is getting way too long... plus I NEED THIS TOLIET FIXED BEFORE I HAVE SURGERY... NO WAY with a lumbar fusion and back brace I can rely on this toilet with the boards almost rotten under it, PLUS IF I CAN GET SOMEONE TO COME OUT, THAT WANTS THIS HUGE TUB, WITH ALL OF THE sauna, two sprayers, rain shower, water flow, foot massager, the water jets and it will even let you hook your phone up to it and has a radio... the works... I cannot set down in it any longer, or several reasons, one I cannot get up if I did, two, with the heat I can't use the sauna or the jets, due to the pacemaker and the pain pump, so at 2,500.00 or more dollars I paid or it, it is fairly easy to take apart and put back together... and needs a couple of small pieces you can order, mainly "cosmetic nothing huge"... it stands on stainless steel legs... anyway, if I could get someone who wanted it, I would take a very small amount, to help cover the cost of I just need a "walk in shower" with one seat, and some place to hold shampoo conditioner etc.. I would settle for just one that accomodates a shower curtain rather than a glass door, as long as it does not leak in the floor... I would consider a 4th or less of what I paid for it, depending on how much a plain walk in shower with one seat, and shelves for shower items...nothing fancy just reliable and easy to maintain. So, if anyone wants to put this out about maybe even a plumber knowing someone who would want this sauna, shower, etc tub, and could do some trading, cash etc for putting in the shower.. or even doing the toilet, shower... etc... we could work out something... I am desperate..I will NOT be able to get in it after the surgery, I barely can now.

Saturday is "D" Day for me (Discharge Day) from Rehab - Excited,Thrilled, Terrified, how to "move back" into real life yet knowing the Osteoporosis could cause further issues

Finally I knew that day was coming soon - the "D-Day" of my own life, discharging and going home from Rehab...

I've been asking "how much longer" now for months it seems; although it has been "weeks" and not months... Yet, after being told yesterday, I would be leaving Saturday, I felt a "good panic" and a "bad panic" in my head and gut.

I am thrilled to GET HOME! To my life, my eating, sleeping, and living habits, BUT I am still going to be limited as far as "what I can and can't do" - and that scares me. I am so used to doing my own thing, going to the market when I want, cleaning my house the way I want, messing around in the yard, caring for my plants, doing laundry, and all of the usual stuff, from vacuuming, cooking and cleaning, yet just now I figured out with this walker and going home, that even carrying a cup of coffee is not going to be the easiest thing in the world... trying to push that walker with one hand, and carrying the coffee was kind of "difficult". But, I've got to learn to "make my own ways" around, and hopefully I will be on a cane soon, where one hand will be free to carry some things...

BUT, on the other hand I am totally terrified to go home... since I left lots has changed just within a month tomorrow actually. I fell on the 13th of December and had surgery that night. I got to rehab about the 18th or so, and in the chaos of it all, I lost my precious pup Bub's who I feel grieved himself to death missing me. He was so upset for me to leave for a day, or a few hours, I think he just quit eating, drinking and laid on his favorite spot, and wasted away, waiting for me to come home. He passed away, and he had lost so much weight, I just could not believe it, when he died in my arms a couple of weeks ago. Peanut, is so much younger, so he has gotten used to Jason being there, and he so far seems to be doing okay.

I am going to be getting another puppy soon. But, first I've got to get me at the house and settled in. I need rails built on my front steps, and I need I feel a new set of steps built on the back. The concrete ones back there are so steep, even with rails, I feel they maybe too steep for me to try and bring groceries in, and so forth.

I never thought I would be one to be worried about being alone, but that is not because I fear someone getting in etc...I fear having an accident, and hurting myself again. This hip fracture was a total accident, but I am going to have to try and learn to slow down, not try and take on so many projects at once, and know that "tomorrow" on many thing is another day. After all, I face neck surgery soon, and possibly lower back surgery this year. I have that new car sitting there, and I am so used to doing so much on my own, waiting to have "help" putting on the plates, putting in the sticker and so forth, I am not one to put off something waiting on someone else to do it for me... So, my fear is my own restlessness. I also need to rearrange my kitchen where I can reach things that now are in the top shelves, and I must stand on my little 3 step ladder to reach. But, my kitchen cabinets are not all that great, and trying to arrange them will be difficult. Now I wonder if I should have picked Mom's house, maybe it would be easier to get around in... yet it is what it is and I've got to cope - I also know I am going to owe $$ on this damned fall and hip fracture, plus I'll have to cough up funds on the neck surgery, and lower back surgery also... so those in themselves are enough to worry me. My credit issues I spent 10 years or more getting straightened out from my 2nd marriage and all of the high bills he ran up maxing out credit cards, the last thing I need is to screw it all back up with doctor and hospital bills.

So, YES I am thrilled, and YES I am TERRIFIED to go home at the same time.....

Monday's seem to "hit" everyone in some type of lousy way, no matter who, where, when or why it is what it is.... & throwing our Circadian Clocks OFF

Well, between Monday's usual errands etc, I think I finally got caught up on my WEGO Health Bloggers Month Long Challenge! I am still NOT feeling all that well. I know part of my problems with feeling lousy is because I have "overdone" it and probably WAY overdone than I care to admit. I've thrown out old furniture, moved furniture, cleaned, dusted, been trying to get a couple more of my "inside" windows not stuck anymore. I have "storm windows", but before they put them on, I did not get a chance to really make sure the inside old windows were not painted shut, or just plain stuck because of the age of the home. So, it has taken me several months in all to get about 11 or 12 that I can open up the inside windows and then get to the storm windows and open them when the weather is nice, and get inside, in between those also... I have one very, very STUBBORN ONE over my kitchen sink. I finally was hurting so badly I sprayed it down with WD-40 and left it last night. I've not tried it yet today. 

We have really wet, dreary, weather so the wood is also swollen which makes it harder to work with. Then I spent an hour or more yesterday trying to get the small "cracks" sealed up on my front storm door. I had some of the rubber put on the bottom, but it was not really long enough, so I put a new strip on that has the longer rubber on it. Then I had to put one on the outside, plus put a piece on the side where the screen latches. This house has settled so badly, that it also why I have issues with these windows. It needs to be leveled, BUT THE COST OF HAVING THIS HOUSE LEVELED NOW PROBABLY RUNS ABOUT $15,000.00! It was about $10M when we checked on it years ago. They have to get under it, pour concrete posts, then take out the old creosote posts that are under there then try and shim and level it up. It sucks also because this house happens to be on ground that has room to get under it on one side, and then the other is very, very low to the ground. It would be a nightmare.... it was not a true "peer and beam" but just more like the "beams" under it. 

There is SO much that needs to be done to the house, that it makes my head hurt and spin just thinking about the cost of some of those things, like the foundation, and a new fence in the back, that requires cutting down trees MY NEIGHBOR NEVER CUT DOWN WHEN HE PROMISED HE WOULD AFTER TAKING A BUILDING DOWN THAT WAS ON THE PROPERTY LINE, TO BUILD A BIG HONKIN' GARAGE THAT IS LARGER THAN MY OR THEIR HOUSE, AND LEFT THE TREES, ONE HUGE AND ROTTEN. Half of it is laying in my back yard.... and that expense is astronomical to have someone cut down those trees. Some of them are small enough I can get rid of most of them, but about 3 or 4 someone would have to come in with a chainsaw to get them down. As MANY things as I STILL DO, ANYTHING TO DO WITH A CHAINSAW is where I DRAW THE LINE! I do okay with my "pole trimmer/cutter" and most everything else, but the "saw zsaw" and any kind of chain saw I know I would never be able to handle. I've lost so much strength in my arms, hands, wrists, especially my right one, and my fingers, thumb and hand is so swollen it almost kills me to sit and type. BUT, I make myself, so I hope that they don't get even worse, which I need to go back to my Rheumy. 

The MTX is NOT WORKING. and in fact I stopped taking it as of today. I was taking it once weekly on Monday, but I decided it was not worth it, since it's not doing a thing for the RA. It is much worse in my hands, fingers, thumbs, and now my neck, and lumbar spine and hips are just "on fire" they hurt so badly. So, I hope we will try Xeljanz next, but I am not liking my Rheumy's NP at all. She is wishy washy and said that was what she would do last time I was there, and then went back to the MTX after my Rheumy had stopped it a year or more ago, at that time due to me having so many infections.  I NEED the cervical neck and lumbar spine surgery..

A great deal of my pain I feel is due to my spinal issues. But, there are times just like when Mom became so ill, I had to put off having those surgeries, because she needed me during those months. I could not have helped her, had I went ahead with cervical neck surgery, and/or lumbar sacral surgery. So, we do what we can do in life, and at times that means putting up with some unpleasant times, and things. Hopefully making the "sweeter" pieces all that much better!

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When LIfe decided is to Just apart where do you turn, what do you do, and how to cope, deal, and figure out all of the why's, what's, how's. when's... chronic pain and I am in INTRACTABKE OAUB due to my PAIN PUMP STALLING & Meaning surgery for a new one!

I know there are "lots" of sayings, what does not "kill" us makes us stronger, when life gives you lemons, make lemonaide.... and so forth but WHEN ENOUGH OF DESPAIR, GRIEF, AND MISERY... ALONG WITH EVERYTHING GOING WRONG... COMES AROUND all of those "sayings" fly the heck out the window.... i was already in enough pain and despair, and now for my pain pump to decide of all times to "stall"... this is just not a good thing at all for me.... I am desperate....

Yes, right now is the very WORST time for my pain pump to decide to go out... and there is no way to "fix" it... once it "stalls" as mine has, then major surgery and a new one is the only way to take care of the issue. OF course my pain doctor prescribed a massive dosage of Morphine Extended Release to try and make up for "some" of the lack of the pain pump, but there is really no way to give me enough "oral medication" to take care of all the pain.. I have had a bit of what I might call "withdrawal" but not so much that as it is severe and almost intractable pain since it finally completely went out. They basically "stopped" it on Friday - Medtronic who makes this pump, has reps that help with these matters... so one of the Reps met me at my pain docs office on Friday morning, and even though he was in OR, his nurse was able to get hold of him and they decided to turn the pump to "a minimum" dose which is basically nothing... once all of the meds finally went through the catheter that delivers the meds to my spinal canal, then of course the pain began and yesterday was horrible. I almost did not even find the morphine... in fact I called here in my home town almost every pharmacy before leaving Dallas... because I felt I may have problems finding that high dose of medication in Ennis. But, fortunately one of our pharmacies did have it... so I came straight home, dropped it off, got Mom to her house, and picked up the meds.,, I knew I did not have very long before I would not have any medication in my body, and so it was... by the time I picked up the script, got home, and settled in, I had to take a pill, and since then I am alternating between the MS Contin ER and then my Oxycodone, which is my oral medication I took even with the pump for times that I had more pain than others... It is very difficult to take someone who was being given about 11mg's right into my spinal fluid daily of Dilaudid, and try to replace that with "oral medication"... as I said they really cannot give me enough, not by mouth .... the pain pump delivers it straight to my spinal fluid, thus I never had any side effects, no breathing problems, or anything that oral pain medications cause. Since they do not go through my entire system, then I take a much smaller amount daily, yet it is much much more efficient, and without all of the issues that as I said oral meds cause... I knew that the pump had about a life of 7 to 10 years... and then it would have to be replaced... the battery life in them is about 8 years average, thus they were puzzled as to why it had a sudden "motor stall"... it is rare, very rare, but heck whatever is "very rare" I can know will happen to me, always does.... they even asked me if I had been around anything electromagnetic, like an MRI, or such because that will cause it to stall, but no the only thing I went through was at the court house two times to take paperwork in to the District Clerks office and went through the metal detector, but that has been now about 2 weeks since my last time, so that should not have caused the problem... I even stay away from my microwave... I turn it on, then back away... even though it is not supposed to have any effect on it, I have always been extremely cautious because of the pump and knowing that certain things can harm it.... I have been to the docs offices several times over the last couple of months, with me and my Mom, but still nothing as far as any type of equipment that should effect the pump... I even thought since I had been doing lots of stuff here at the house, moving big plants around and lifting some stuff maybe I did something to it, but nothing like that would cause the motor to stall... and as far as the tubing from it to my spine, it was there in the beginning and has been "grown into " the place now for 5 plus years, so that should not effect it... I had a couple of chest Xrays but that should not bother it either.... I had been moving plants around and potting soil... so I had lifted some things that I probably should not have but that was more due to my back, and my shoulder replacement, and nothing to do with the pump... and why now.... who knows??? as I said this is the very worst time for this to happen... I have Mom and her problems and she has a couple of doc appts but both fortunately are here in town, so even if I can't go she can go by herself... she would not understand anything they say probably... but that I can find out so I am not all the concerned about that... but then there is the issue of the "court hearing" if the truck driver that ran over my soon to be ex-husband that now they still have not offered a settlement... so if that does not happen this week basically that means a jury trial that may last a week or more and that means a trip to Dallas every day for me.... and if I have surgery, there is no way my doctor will allow me to even "ride" to Dallas and sit in a court room, much less drive myself... and this needs to be done ASAP - as soon as the insurance gives the okay, the pump surgery needs to be done.... which hopefully will be this week sometimes.... I have all of the divorce paperwork done and the court date for that is not until Jan 4th, so that is not a problem... thank goodness I did get the papers all done and filed.... anyway, I was in the middle of trying to adopt a new puppy also, and now I thought Mom's stuff would make me postpone that but now, until I have this surgery, I have to postpone getting a new puppy, and will probably have to have my dog sitter to come over and check on Bub's.... I maybe in the hospital 2 days and a night... and should be home after that... but I will be sore and tired for a few days once that is done.... anyway, it is all just a horrible mess right now... and honestly I don't know which way to turn... I had to miss church this morning, but I am in so much pain, there was just no way I could get dressed to go... plus the weather here is horrible, cooler, still raining, and even though we did not have as much flooding, some of our roads are still flooded in places, and you have to watch where you drive.... anyway, I have not even felt like getting into the shower and I have to do that, but I thought I would wait until a bit later in the afternoon, and when I have enough of my pain meds in me, then I can get in the shower and I am sure the warm water will help some of this pain... I have discovered one thing..... again not good... MY LOWER lumbar spine does need surgery.... after the pump meds began to wear off, my lower lumbar spine/sacral is causing me so much pain, almost more than anywhere else... so now I know why at times even with all of the meds I've had problems there... I had been told I needed at least a one level surgery there, but I know that does now need to be addressed.... it is effecting even my legs badly, the pain down both of them is terrible.... so again not a good thing... but it does tell the story of what problem I am having with my lower spine that effect my hips and my legs.... Thank you all for the thoughts and prayers... I cannot really sit here much, so I have not been online other than now, and earlier to post at first what was going on... I need all the prayers I can get right now... I don't even know who will get me to have the surgery, then drive me home afterwards.... so there are many "little" things that are "big things" with all of this....

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.