Showing posts with label RA. Show all posts
Showing posts with label RA. Show all posts

Friday, March 9, 2018

Young Women from 24 to 32 or so that really NEED HELP TO GET THEIR LIVES ON TRACT... AND wanting a 2nd chance & the difficult time they have. Me, lupus, RA, Sinus infections infections and Life!

Lupus Flares, Pain Pump refill, Young Women & getting another chance to change their lives, LIFE, and Chronic Illnesses with PAIN!



Everyone, it has been MORE THAN AN INSANE WEEK OR MORE FOR ME! Between my own doctors visits, and a friend had a new baby and there were issues, but all is well now, I had to go over to the next town in our county to renew my driver's license, since it's been 12 YEARS LOL since I had gone in and took a new photo etc, I had to physically go in this time to renew it. That took forever; although I must say the system now is better than it used to be. Then I had another friend with problems, and was trying to find some help for her, along with my own other stuff, cutting tree limbs, and I've got to get to the market today, but I have not had time to clean my house like it needs, and then I have to take a shower, and it's so pretty outside, I need about "5 of me cloned" so I can do 20 things at once!!!! I have not felt that great yet either. In fact, I have not started my RA meds yet, since being ill with the sinus infection. For some reason, I was running a fever, low grade, but still a fever Monday. 

I went in for my pain pump to be refilled, and when they checked it, sure enough I had a low grade temp. I came home and checked it myself, and I was still running a bit of one. I didn't run any fever at all with the sinus infection. Plus, I have kind of "stopped" running a low grade temp with the Lupus. Used to I seemed to almost have a low grade one daily with the Lupus. It went back down and as far as I know has been back to normal the past couple of days. But, I was concerned so I still kept off the Actemra and the new Xeljanz, until I could see what the temp was all about. But, I've had a damned headache, and a bad one at times, for the entire week! IT could be "stress" or maybe I have a Lupus flare, that will give me a Lupus Migraine from hell at times. 

So, yesterday I "almost" went BACK for a 4th time since the 1st part of January and had them give me a prednisone injection for the headache. But, I toughed it out yesterday, and it is not so bad so far this morning. So, it could be anything causing it. With everything going on, as I said I could be more "stressed" out than I think and it's causing the headache. Usually I don't have one that bad. 

When they are bad enough I want to scream and cry, usually it's due to a Lupus flare, or I am sick with something. So, I am going to take the Actemra later this evening and then take my 1st Xeljanz tomorrow and see how things go. Please keep me and those couple of people in your prayers, with problems and the young woman with a new little baby girl. She needs lots of prayers, so she can get her life together, and get back on her feet. The very "odd" thing is, lately, I know of about 4 people, that have someone in their lives in the same situation. The nurse that comes to see me weekly from my insurance, is helping a young woman with kids, and her trying to get her "stuff" together, and the young woman I know. Then my daughter also knows a young woman going through about the same situation, and I have another friend that has a daughter who is really trying to get her life on tract, get a job, her own place to live, and put herself back on the right roads.0 

These young women ALL need our prayers. It seems that many of them at about 25 years old, either get involved with the "wrong crowd", have a child or children, either the Dad is not there or does not help out, and they are desperately trying to dig their way into a 2nd chance. But, that is hard to do... it's hard to get any assistance these days, it takes so much time, paperwork, and red tape. Then of course we have some that have "abused" it, so that makes the ones that really WOULD benefit and try to do right unable to get the help they need. So, something about that age group, some between about 24 to even 32 or so, really lots of young women out there with the same problems... and NO PARENTS, that either will help, or are even around to help.... it sucks, and i AM SO PROUD THAT BOTH OF MY ADULT KIDS ARE IN A PRETTY GOOD SPOT, AND HAVE THEIR HEAD ON THEIR SHOULDERS RIGHT!  For that I am BLESSED AND GRATEFUL FOR SURE!!!! Have a good weekend everyone!

Wednesday, February 7, 2018

Xeljanz Rheumatoid Arthritis, Lupus & the "latest in treatments and medications"... The Horrid Flu Season, & A New Year


I want to wish everyone once again a Happy Beginning to 2018! I cannot fathom that we are already moving into February! It was like yesterday, the holidays were here.

Now, we move on to the "flu season" which has been a nightmare to say the least!

I've spent well over 6 weeks "sick" but not really with the flu. Mine I feel had began as both an RA and a Lupus flare, both severe. I had not been feeling well since before Christmas, but I put off going to my doctor's or to Urgent Care. It was the holidays, it was everyone beginning to be ill with the flu (viruses)... and at that time they were just beginning to see that the "flu" strains which are several, were not all covered by our vaccine.

I had gotten my fly vaccine back in September. I happened to be in my PCP's office for a follow up and they had gotten theirs in, so I went ahead and got mine. Being one of the hundred's of thousands with the screwed up immune system, between the autoimmune illnesses, and the medications that also contribute to our systems being weakened, I've been taking the flu and pneumonia vaccines, when I need them. I had the flu about 10 years ago and was ill for a month. In fact it was just after the Christmas Holiday, at the time I was a manager for a retail women's clothing store. I passed out almost while at work, and my daughter had to drive me to the ER across town. And I had the flu. Of course that was the worst time for me to be ill, due to that job. With all of the after holiday sales, and inventory time, I was sick for a month, and lost the job. Other things beyond my control also did not help, but it really hit me hard.

Then while in Seattle, I had gotten not only double pneumonia, but also the whooping cough at the same time. Again, in fact, it was the 1st day of a brand new job I was headed to, I got so ill in the car, I had to turn around and go back to my apartment. I called in and told them I was so ill, and went to an Urgent Care down the road. They wanted me to be admitted to the hospital. but, at the time, I was supposed to start a new job, was in the process of moving, and going into a whole new "life and career" at the time. The irony to the entire thing is when I had interviewed for the job, both "bosses" were SICK! They had been coughing, sounded terrible, and although I sat WAY on the other side of the table, I honestly think I got sick during the interview, or was exposed.

After 10 days and two trips for shots, cough meds, and antibiotics, and then a lingering cough for a month, I got "better", went to work, moved into my new apartment, and was settling in to the new life style.

So, the "flu" and "pneumonia" are two things I prefer to stay away from if at all possible. Yet, I've had pneumonia a couple of times since, even with the vaccines. So, it can happen.

My RA has been really worse over the past 8 to 10 months. We changed me over to Actemra, from Enbrel. But, after 6 months I am still showing signs of active RA especially in my fingers, wrists, and ankles, and some in my hips.

I felt when they took me off of the Methotrexate, due to infections, that is when I began to have a more severe action of the RA. I had asked if we could try the MTX again, but they just didn't want to chance it. I had mentioned "Xeljanz" before, but at the time we were just beginning the Actemra, so the wanted to wait.

I shall continue this either later today or tomorrow....

Friday, January 26, 2018

Arthritis Foundation and Washington DC March 2018!

It's Time to be United! In the Fight Against this horrific life altering diseases



It is almost here! Another year gone by and time to get to Washington DC with the Arthritis Foundation to get on the bandwagon and get the House of Representatives off their "kiesters" and on up to getting a Cure for RA, Osteoarthritis, and all the many other diseases that an be "packaged" into these... we keep hearing more and more about "pain" and now this "opioid crisis"... 

If there was a "cure" or a way to "regenerate" the damage that so many of this horrid illnesses cause some would NOT NEED pain medications!!!

So, those who get to go, tell them YOUR story, your children's stories, or whomever you are there to represent!


Tuesday, January 2, 2018

"2018!" HOPE for better health, less pain, yet it's not beginning very well, Lupus, RA flares possible & weather is literally I believe reeking havoc with me!

Praying for RELIEF, from Lupus, RA, Chronic Pain, and trying to remain hopeful that being in pain does NOT keep me from doing the things I want to do for 2018



The weather here like many places has been down right bitter cold! We were in the teens' night before and last night, at 17 this morning when I first got up. Fortunately, so far there has been no falling precipitation, or it may have been really bad here. I know I've heard the ambulances etc going out off and on now for days, I am sure many people ill, or get too cold etc. I am having a very difficult time "coping" with everything. I've so wanted 2018 to begin with new things to do, to accomplish, and pray that pain and illness don't plague me. Yet, I've been suffering with a severe headache off and on now for really 2 weeks, and when the weather got so cold, I believe every bone in my body hurts. I "may have a Lupus and/or RA" flare.

I feel like after they took me off the Methotrexate, that keeps the other medications from working as well. We did it due to me having infections so much back a good while ago, and now that seems to be somewhat "better" BUT the pain has been so horrible, almost unbearable, and for me to say that, and I am talking about over and above all of my medications, the pain pump and so forth. I FEAR going to the doctor's, one fear is that my neck could be messed up again. If I were to go to Urgent Care they could give me an injection of a corticosteroid along with a 14 day supply of a huge dose of prednisone, and if it is the Lupus and/or RA, then that would definitely help the pain, stiffness and inflammation.

Then I've had hell with my left elbow for a long while. In fact the Orthopedic Surgeon who did my knee replacements etc, told me several years ago that my left elbow really needed another surgery on it. Well, he injected it and it went a long while without giving me hell. But in the summer when I was doing all of the windows, getting them open (the old windows that someone painted shut inside) so I could open windows when the days were nice, plus I can clean them better, and be able to paint them etc... and it took a couple of weeks, but I got all but about 3 in the house that so far I've not been able to get open. One of them has a crack in it, so I didn't want to be messing with it, I JUST put in the one glass pane that the hail broke out, 2 or 3 years ago!

But, I have a couple more than NOW since I know I can actually do them myself, when the weather warms up I want to replace any that are cracked. Many of them have the initial glass that was put in them in 1950 when the house was built, so the glass is very brittle, after so many years... anyway, I had surgery on the left elbow in about 1998 or so. In fact, Dr. Roye who had just began practicing in Waxahachie, did the surgery. He fixed the elbow and had also done work on my left shoulder. But, the elbow has kind of like pins or screws in it, and they have always "poked" out so you can see them.

But, they had been right "above" the upper part of my elbow, and I accidentally was working on one of those windows and it was very loose, rather than so tight as most of them. I knew I had to prop it open in order to do what I needed to do, so it would not come crashing down on my fingers... I had placed a piece of board under it, but I was trying to get a screen in where that storm window had been used for an A/C unit. When it went out and I got the new one I moved it out of that window and wanted to put the screen back in it... but it is harder to do than you think, the way that screen has to go high up, then slide down into that window is difficult when you are having to go under the old inside window. Well, I started to put the screen in and try to get it up high enough to go into the window, but you also have to push on the outside of the storm window in order to get the screen to go in correctly. So, I knocked that darned board down and down went that heavy wooden window right down on that elbow where those screws are...

once that happened I was in so much pain, plus the screws actually MOVED down towards the bottom of my elbow than where they had been... well of course the hip fracture, then the neck surgery etc. and although the elbow pops now and then, it really has not hurt that much. Up until the past about 4 or 5 nights... it wakes me up every morning about 2AM from my elbow down to my fingers "numb" yet "on fire".... like it has fallen asleep so badly, and now as it "wakes" up that PAIN that comes with it! At first I thought it was my wrist because I have carpal tunnel, and I had the right hand fixed, but other things came up so I left the left one alone.... but I know it is not "just" my wrist down, and actually starts right above the elbow and radiates down into my thumbs and two sometimes 3 fingers on the thumb side. I believe I have Cubital tunnel syndrome which it what I think I had when it was repaired in the late 90's....

and after hitting those screws and it was already giving me problems, I feel that really did a number on it.... BUT, then for 2 nights beside HORRIBLE NIGHTMARES. I am woke up by my left LEG from my knee down with a very deep terrible ache! Bad enough it woke me up again last night. I got up took some meds and laid back down, but by 4AM I was up with the both of them hurting again.... What truly irks me about all of it, is that I've prayed and prayed to just have "time" to not be in so much pain, to not have horrible health issues, so I CAN BLOG, WRITE, AND DO SOME THINGS I WANT TO DO! IF between not sleeping due to severe pain, and then the weather really making it worse, and maybe some type of a flare, I hate to being griping but I pray the rest of 2018 is not like the 1st couple of days have been. I am almost embarrassed to "whine" about these things but damned it's just so hard to live with and not be able to talk to anyone about it....

Friday, November 24, 2017

Check out my Daily Newspaper for the latest articles on Chronic Pain, Autoimmune Illnesses, such as Lupus, RA, & joint issues, plus many more "health related" information!


This is just one article from today's addition, and I have discussed this several times over the years, even my Mom used to say before she passed away last year, she did not know people could go and withstand the types of chronic pain she saw myself and many others go through....

 

http://www.clinicalpainadvisor.com/chronic-pain/suicide-attempts-in-chronic-pain/article/697827/



Here is the Latest Addition of my Newspaper for today Friday 24th, 2017


http://news.autoimmunearthriticsystemiclife.com/#/


Life Chronic Pain Autoimmune Systemic Diseases & Dementia



Sunday, November 12, 2017

Diatomaceous Earth - "A Natural Health Benefit for yourself, your pets and a cleaner home... You Decide but here is some information on it!

Diatomaceous Earth Health Benefits for Humans, Pets, Natural Pest Remover, & Way to Make Your Home Healthier.   their links that talk more in depth about this amazing (natural) product, even to aid in the symptoms of "Leaky gut", Autoimmune illness symptoms, IBS, Colon Issues, and to 

 

Cleanse the body....
 https://richsoil.com/diatomaceous-earth.jsp   


 https://diatomaceous.org/ 

(by the way I am NOT "promoting" any of these sites as far as them "selling" this... I happened to have been researching it, so I've looked at many websites, some of those who may "sell" this product, and others that have lots of information on it... by the way the ONLY type of Diatomaceous Earth that is "FOOD GRADE" would be the one you would want to try for you, or your animals etc... 

there are other "grades" and they are used for other issues, but the "Food Grade" type can also be used as a Natural bug killer, and still be "consumed" by humans and so forth... so I am not saying "yeah" "try this"   I just bought mine and it came in from the big "Amazon" (but I buy LOTS of my things there) so it didn't come from any other site... and you do your own research to decide if this is something you may want to try .... speak to your doctor (which some may say sure, but since it is NOT making LOTS of big "Pharma" money, probably many "professionals" may say "nope"... so you do your own thinking and research..






Wednesday, November 8, 2017

Trying to "find a new path" and Easier "lifestyle" for me, because i simply am not able to do all the stuff around my house I need to...

Lots going on, and much of it to do with my house, the lease on my car, and trying to "cut down" on my stress level, on my expenses, and get myself where I can spend more of my time doing the things I want to do, rather than drive myself insane with worry over "fixing" something every week at my house, and my own health, and pouring money into it that it is getting out of hand..

I never thought I would "want to live" in an apartment agai, BUT with the ways things are, the expenses of trying to keep a house "together", painting, roofs, inside work, floors, putting walls up in the laundry room, MANY trees that either need to be cut down or trimmed, and more.., the list is endless, and I have to face the fact I can no longer, "hang ceiling fans" and stand on a ladder to paint, or buff hardwood floors, fix a dryer again that has gone out, try to "fix" what the "scam artist" made a mess of with the repair and paint "job" he was "supposed to do on the outside of my house, and again, everyday there seems to be more, that keeps me away from my writing, my blog, my advocacy work, spending time doing the things I "want" to do, rather than a never ending realm of "repairs"..... so after the holidays, I am selling my home, and moving probably closer to my daughter around the Corpus Christi area, in an apartment, where I am no longer having to do ALL OF THE UPKEEP, MAINTENANCE, AND EXPENSE OF LAWNS, AND SUCH!!!


Well Hell, Just AS I THOUGHT! The dryer had the thermostat for some reason "short out" I think by the looks of it... so it (I can see) it "burned one of the tiny connections on the heating element... the element looks "okay" but with that piece damaged, I didn't take a chance. I ordered the ENTIRE ORDEAL, thermostat, the thermo fuse, heating element, and then the wires that go onto the thermostat and heating element. This is just about what happened before. I looked it up and it was in mid 2013 that we replaced all of that before. 

Thank goodness for AMAZON and keeping up with orders. I could go back and see exactly what I ordered then and so I knew exactly what I needed!!! It does piss me off that in 4 years it has gone out again, BUT when I MOVE, if the apartment does NOT have a washer and dryer, I am leaving mine to go with the house, or selling them and will buy a new washer and dryer. I bought them 2005, or early 2006 when we first moved back to Ennis, so they have served their purpose. We did have to replace the parts before 4 years ago just like this in the dryer and then I know there was also the front "button" in the door that broke, and we replaced that, and I "think" something on the washer had also gone bad at one time and we replaced it also.,, SO ON THIS DREARY VERY COOL, RAINY CRAPPY DAY, I'VE been pulling the back off my dryer in that very TINY damned laundry room that has NO light worth a damned, so I was trying to hold the flashlight and the the damned hex screws loose from the back of the dryer, LOL..."Tis done and I've put the order in for the parts, which will come in on Friday! But, of course I may not get them early enough to put it back together until Saturday... 

I was SUPPOSED TO ONCE AGAIN GO TO THE CASINO ON SUNDAY! But, now I am not sure if I will, Bella has surgery next Wednesday bless her little heart...I had to postpone it from this past Monday, I've been under the weather with a headache, sore throat, very hoarse, and my right shoulder and elbow are about to drive me nuts. I guess I've been using it painting outside and putting down that edging that I have to use a rubber mallet to drive the stakes into the ground that hold that edging down... plus cut more tree branches down and still need many more. but today I "think" I am just about through for the day..., I got up again very, very early and didn't sleep worth a damned, and I am exhausted honestly..  it seems to be non stop worry over this house, the yard, how many trees need to either be trimmed or cut down, and I am just no longer able to do even with the "cordless" mower, weed eater, chain saw, and so on...

If my neck and shoulder specialist "knew" what I've been doing he would probably have a cow! I am really taking a chance with much of what I have been having to do myself, between the hip fractures last year in December to the 4 month ordeal getting over neck surgery this past April, along with my lower back, now the shoulder that has been replaced and that elbow on the right side just giving me hell with pain, and the weather does NOT help for sure...,

I "PROMISE" to get back TO YOU GUYS, MY READERS, AND THOSE THAT FOLLOW MY BLOG, MY NEWSPAPER, MY FACEBOOK, TWITTER AND SO FORTH... AS SOON AS I AM OUT OF THE HOUSE, IT'S SOLD, AND I AM SETTLED INTO AN APARTMENT, MY HOPES ARE THAT I CAN ONCE AGAIN FOCUS ON THE THINGS I WANT TO DO, BLOG, WRITER, BE WITH MY TWO FUR BABIES, AND SPEND MORE TIME ON MY ADVOCACY WORK!!!!


Tuesday, October 31, 2017

LOTS of things going on... here is just a bit of an update on some of my Ordeal! Cars, Taking care of a Home, with you are "disabled" and by yourself, warranties, doctors, lab tests and you name it!

I've not said much about what all has been going on over the past 2 weeks... I had several "decisions" I really needed to make, especially after getting "scammed" over the whole having my home painted, boards repaired and so forth, and yet he got away with MUCH MORE money than the job was worth for sure. I am in the process of filing a "civil suit" against him, but I am sure I probably won't see a dime of money, nor any more work done... so I've been doing "as much as I can" to get it finished, plus I've got trees that are still in desperate need of getting really pruned back or I fear I will lose them, and I have no 2 or 3 in a row in the back on the same fence line that have all died. One of them in the past 2 weeks or so suddenly, what I thought was just "winterizing" itself, no, a huge portion of it is dead I believe, and I am not sure what the heck is going on. There is a huge one that died and i still don't have it all down... 

right beside it, then another smaller one, plus the "neighbors" on one side of me put up a "privacy fence" and I know "why" but I will keep quiet at the moment, BUT, it was further into the "back lot" so I didn't know about it, which is fine, BUT THEY EITHER KILLED A TREE, OR SOMETHING AND IT IS ON THEIR SIDE OF THAT FENCE, BUT THE ENTIRE TREE THAT IS DEAD FELL ON MY PROPERTY ON THIS SIDE OF THE FENCE! I WAS so pissed, but the other is not much better. They built the HUGE GARAGE, that now with no rain, the "foundation" has pulled away from the ground all around it, which really does not matter to me, 

BUT HE WAS SUPPOSED TO DO AWAY WITH ALL OF THE JUNK, that was in the two "sheds" and i mean LOADS AND LOADS OF JUNK, they hauled away flat bed trailers full several times, yet rather than get rid of it all, HE BUILT THE GARAGE THEN STILL HAS A HUGE PILE OF NOTHING BUT JUNK BEHIND IT! Well in the first place, he was supposed to get rid of all of that, and in the 2nd I NOW SEE IT, SINCE THERE IS NO FENCE, AND THOSE OLD BUILDINGS THAT WERE KIND OF THE FENCE ARE GONE, and part of those dead trees are on his property line, so now I think that is where lots of the problems are coming from with mice, and Lord knows snakes and everything else, piled within and under all of this "stuff" that I cannot fathom to even wonder about... anyway I got "rid" of Leasing and "bought" my car permanently, a good move since the interest rate was .9% (less than 1 %)!!!! and now I don't have to worry over when this one is paid for, no more "leasing" or decisions, it's mine, and that is just how it is... 

anyway, more money than I really wanted once again to have to think about dealing with, but a good move in order to avoid either paying "out the lease" in 24 more months OR leasing again and so forth... my ceiling fan (new one) new enough I put it up I believe last summer before I fell and broke my hip... I thought it was a $6.00 part and I ordered it, replaced it, even had my son "recheck" to make sure I was correct, and THE DAMNED THING HUMS, BUT WON'T TURN THE BLADES, so I had to buy another damned ceiling fan, this time, I got it from Home Depot and got an extended warranty on it... I usually never do that, but now with my situation as it is, and I no longer can put the thing up myself, and besides they are much more expensive than the others I bought, so at least the thing is covered for 5 years or more... so if something goes out, at least it will be replaced, without me being out another load of money again.... and I didn't go to the "GI' doctor today... the weather is horrible, and we are supposed to have rain at any moment, and with it being Halloween, and terrible weather moving in, and I already am not feeling very well. In fact, I "thought" I may have "pneumonia" or some type of sinus infection or something.. This weather is really causing many people to get sick all of a sudden...

I was wearing shorts and a sleeveless top not a week ago, and yesterday it was a beautiful day, but the wind was so cool, that it makes me have problems breathing to get in that cold wind, and today, now it looks like it is going to come a flood at any moment, dreary and really cool, not as windy but the wind is also almost cold, with it cloudy like it is.... so we know TX weather, burn up one moment, in an hour be freezing... so here is my 2018 Prius C - this one happens to have everything but the "kitchen sink" in it, but I was not thrilled with the "black pearl" color.... any "darker" color cars in hot TX weather, just really suck... but it was almost less expensive than the 2016, and has a lot more things upgraded, even the rims and wheels, it has a GPS system, back up system, it tells me if I "get out of my lane" high beams that will "dim" on oncoming traffic themselves, and even has XMsirus radio I noticed, and "Gracenote"... and with that I will NOTE, I BROUGHT THE MANUALS IN FOR IT YESTERDAY, AND NO CRAP THEY ARE ABOUT ALL TOGETHER 5 INCHES THICK! It would take a "law degree" LOL, to read and understand all of the crap these cars now days do..... so I am somewhat "under the weather" but not just physically, more also emotionally and mentally, with all that has happened in the past about 4 to 6 weeks... I've been upset with myself because I've not been keeping my blog up and so forth. I never allow myself NOT to keep the blog and my newspaper current, but I've been so busy outside everyday trying to finish up as much as I can on the house, that most everything else has been on hold...

Health... Lab Work... and Issues about different doctors', tests and so forth...

Now quickly, I have "developed" a couple of "new issues" that I was NOT thrilled with from the lab work i had done before my appt yesterday. I have never had "thyroid" problems, and they have checked it every 3 months for a long time, but yesterday I do have "High above normal" on my TSH, which I think means my body is "making not enough" or it's not coming from the gland as it should. So, they did another blood test yesterday. We shall see how it comes out. 

My Grandmother and my Aunt on my Mom's side both had thyroid problems, and both took medication for many years. Then my Vitamin "D" levels were very low, which in a way does not make sense. All of the things in my diet that I eat on a regular basis "should" have it up but it's not, and that could be from the RA, Lupus, and/or medications I am on. Plus my Calcium levels are very low, which really does not make sense because i eat low fat cottage cheese, or fat free, yogurt, I use Almond Milk all of which contain lots of Calcium, plus I eat not all the time, but I do eat Sharp Cheddar Cheese when I eat cheese, and I buy the lower in fat on it also, it comes now in 2% milk fat. 

I also have lower Protein levels which again, I am not a "meat eater" but I do eat peanut butter, I made my FIRST BATCH OF MIXED NUT BUTTER OVER THE WEEKEND! It turned out awesome! It will cost me about 50% LESS to buy the nuts, and make it myself, with no added sugars, salts (if I buy unsalted nuts", plus no preservatives, and nothing in it, but NUTS! I did a mixture of Almonds, Cashews, Walnuts, Macadamia nuts, Pistachio nuts, a few pecans, Brazil Nuts, and I think one other one, but no Peanuts in this one, I eat Peanut Butter so I didn't want peanuts in the "other nut butter" as I call it. So, I will probably make both my own Peanut butter and other nut butters from now on. It's easy, and does not take but a few minutes in the food processor. I have to refrigerate it, since it has no preservatives, but I have been doing that anyway.

Then of course my Anemia is still "with me". It is still there, but as my doctor said, it seems to kind of be finally "holding steady" so rather than "set up" something else other than my B-12 injections, we are just watching it. The RA and Lupus cause that also. Then my "Parathyroid" tests were very "High" above normal. I didn't realize that they have a great deal to do with kidney functions. But, Vitamin D (which I am low on) has an effect on the "parathyroid functions" and of course Calcium and Vitamin D effect one another. 

Your body does not absorb "Calcium" as efficiently if the Vit. D is low, I believe. I knew they effect 
one another. So, I am getting a "prescription" strength Vitamin D, and he called in the Calcium also, But, I feel like insurance will not pay for the Calcium, and I remembered that Humana actually pays for like 50.00 in "over the counter" meds if I order them through their mail order service. So, I can get the Calcium through there since I have that allowance I can use to pay for anything that the insurance as far as prescription does not cover. 

He said I show "very, very mild and early" kidney function issues, but again, nothing to worry over, and probably the RA has a great deal to do with that problem. The other thing and it's been going on for a while now is that my "bracycardia" (slow heart beat) was REALLY SLOW YESTERDAY! 49 beats a minute, which is very slow. I know medication they can cause it, but it concerned me. One of my medications for my heart that is a factor in that issue also. I've cut back, way back on one of my medications, because it also causes the heart rate to be slower.
 

The "Barrett's Esophagus" he wants me to see a GI doctor! Dammit, I don't want to have to go to yet another new specialist. I am already up to my ears in specialists and I am sick and tired of having to get a new one for every little thing that comes up. When I had the endoscopy done and they found the Barrett's, my doctor just sent an order over to one of the general surgeon's and I thought that would be enough. THEN if the "Barrett's" shows signs of dysplasia or changes, THEN SEND ME to a specialist. 


Friday, September 22, 2017

I REALLY GOT RIPPED OFF & I KNOW BETTER BUT BEWARE, THEY ARE OUT THERE, ESPECIALLY AROUND THE ELLIS COUNTY TX AREA! LOTS of money he took and left me hanging.

I needed my home painted outside. I had boards on the bottom that were old and rotten. I wanted them removed and new materials put there so it would be closed off, look nice, & keep animals etc out from under my home. I had several other very rotten boards, a broken window (that I had the glass and materials I needed help putting it in), then it painted properly, which was white everywhere but red around the trim on windows and doors. I found this man on Facebook "not far" from my home. He came over, gave me an estimate, told me exactly what he would do (including power washing the house before painting it), and stood in my front yard (after he found out I had Lupus, RA, and was "disabled completely", and literally "cried" about his Mom, she has Lupus, and how bad it hurts him to see her hurting, and how he goes and helps her all the time. He acted like he had a wife, 3 boys, and like a normal guy his age (around the age of my grown kids) 34, and said he would start the day after Labor Day. Well he called and said he would be "late". He had to take "one of his boys" to school up in "Irving".

 I thought that was strange since they lived in my county a good ways away from where he said he lived. But he showed up, pulled off the old boards on the bottom, then he was doing it so hard, he pulled my plumbing line on the outside of the house loose, and water was running under my house. I had to "tell him" how to turn off the water! HE did, and I even went and got the parts and brought them back so he could repair it. Now he is the one that "broke" it. Then all of a sudden he leaves, he always left and never "told me" he was leaving, when he would be back etc. So, the next day, I had been running an errand and this was up at noon and he had not been there. He was parked on my lawn, which was messing it up, and wanted to use "MY POWER WASHER" to wash my house. I asked him if he had "Simple Green" or some other cleaner to put in it, and he said yes. HE also wanted to "borrow" my two very good and expensive extension cords, again I thought odd. He had one but it looked old and worn out.

Well, about 45 minutes later, I look out and he is GONE! I went out, and the house was NOT WASHED PROPERLY! He did not used any cleaner, and I could tell places he never bothered to really get the dirt off. (By the way, stupid me, and I know better, I guess I was just sucked in to his "story", because I paid him $5,000.00! Up front! I never would do that, so I guess I was just pulled into this bull. But, a couple of days later, I had not seen or heard from him, and he finally calls several days after the last time I saw him, and said he was waiting for the wind to "be very light" so he could paint.

 (He was painting the white with a sprayer). So, the next day, I leave to go to a doctor's appointment, and this again is at NOON! I had not heard a word from him, BUT I LEFT A VERY LENGTHY NOTE STATING THE THINGS HE "MISSED" some rotten boards, in fact several, and other stuff including "ruining" my doors on my storage building, because they were already "fragile" and he pulled them out of the tracks, and they were falling into the building, so he just "locked" it so it would hold up the doors. And he had also "borrowed" my weed eater, to get the ivy from around several places around my flower beds. But he NEVER pulled OUT all of them stems etc, which HE KNEW needed to come out so that they would not be left under the house, he messed up an entire two front beds and a side bed of my ground cover and Ivy, and almost ruined ALL of it! Plus I have # HUGE house plants, (I put my house plants outside on my porch during the warm months, they do so well)..he had just pulled them off a HUGE Boston Fern (probably 10 feet around), A HUGE PALM that stands over 7 feet tall, another huge house plant that is about 7 foot tall, and several a bit smaller plants, after me telling him he had to be cautious and they could not go in the direct sun and lots of wind...

he pulled them all out in my front lawn and left them in the sun, and I will be fortunate if they live! These plants would now be worth hundreds of dollars, if you had to buy them as huge as they are! He had "sprayed" the white, but places were "missed" had very little coverage where he had sprayed, he got "overspray" all over my lights on the front porch, all over all of my windows, on my mailbox, my front porch, everywhere! And when I asked him about all of where it appeared there was very little paint etc, he said "well I put 2 coats on) and I said well then you need to put a 3rd coat on, and cover up all the places he missed PLUS never FIXED ANY OF THE ROTTEN BOARDS HE JUST PAINTED OVER THEM! So, I go in it was hot my two pups one of them only about 8 weeks old, needed me to get them out f their kennels, and love on the little one, settle them down, change my clothes etc. I looked out and HE HAD JUST LEFT AGAIN! Not a WORD just Left, and LEFT THE LENGTHY LETTER I LEFT FOR HIM ON THE GROUND! So again I hear nothing for 3 days or more. Then a week ago today in fact, he shows up and starting "painting the red trim" around my front door. I asked him about closing the windows so he could spray and he said he was "through" spraying the white and was going to paint the trim! He spilled red paint on my front porch, did not paint but about 12 inches of that, left and again never said anything. I happened to have a "nurse" that visits me once a week here, so I was in the house busy with her and he had left within 15 minutes or less! So, I go a week and try to "contact" him on messenger on Facebook, and he proceeds to tell me that "he came by" to "paint the red" several times and I was "not home" and my neighbor told him he did very bad work and he should fix all he has made a mess of. Well, I had no clue my neighbor had seen him. Plus I don't think he had been by because for the most part I had been at home over that weekend and for the next several days until this past Wednesday. So, I believe that was a lie. He said since I was "not home" and he "paid for gas to come over several times" that he was not doing anything else to my house!

 Then he typed out a message with all kinds of misspelled words (this guy is supposed to have a business) and told me "Have a Good Day"... So, I am OUT OVER $5,000.00 WITH ABOUT ONLY 50% of the WORK DONE, AND HE LEFT ME HANGING. Then I go and begin to try and find out , AND ALL OF THE JOBS HE LISTED ON HIS FACEBOOK PAGE WITH ALL OF THESE PHOTO'S NOT ONE PERSON SAID HE DONE THE WORK, OR HOW GOOD IT WAS ETC. I think HE DID NOT DO ANY OF IT, AND HE JUST MADE PHOTO'S OF SOMEONE ELSE'S WORK AND TOOK CREDIT). WHEN I began to "research" things he has complaints against him, he has lived in about 8 places, and has used about 10 different names. PLUS HE TOLD ME THAT THE Hardie Board he put around my house was "$700.00" more than he thought. Well, if he was a true businessman, why would he give an estimate and not find out how much the materials were 1st? Plus he told me that him, "his wife and 3 boys" were getting "kicked" out f their home because the guy they rent it from, "sold it and did not tell them". He said the "new owners" knocked on the door one evening during the time he is doing "my work" and told them they had 15 days to "get out"... well now I know that was a lie. He was "trying" I think to "play" me for more money. I think he thought I would "feel sorry" for him and give him more money. This "guy" knew "exactly" what to say to me, after me telling him I was disabled, living on a very small amount of money, that I had saved this money up for a long time to get my home "fixed" so it did not fall down around me.

He heard me say I had Lupus, RA, Sjogren's, many surgeries, a fractured hip six months ago, SO HE PLAYED ON MY PORTION by telling me that "his MOM" had Lupus, and just how terrible it was to watch her go through it, and blah, blah, blah... he was "playing me" and as I said i am NOT one to "fall" for this, but I guess I needed the job done, at the time had not "found" anything bad against him, although due to "recent" posts here for one, I did FIND OUT JUST WHAT A LIAR, A CON MAN, CROOK AND A SCAMMER HE IS. His "business name on Facebook is "BD HandyMan" Service and his facebook URL is:  https://www.facebook.com/bdyourhandyman/ other places he has lived  TX, Lancaster, TX, Irving TX, Red Oak TX, Arlington TX  Midlothian TX is "where he claims" he lives and his business is at Tio's Tony's but he had addresses I found in Duncanville, Lancaster, Red Oak, Irving, and Arlington all in Texas other addresses 606 Middale Rd, Duncanville TX 75116

Saturday, September 16, 2017

FINALLY NEW ACTERMA APPROVED AND HERE FROM HUMANA! Good Gosh TOO many ISSUES around the House, Not enough sleep with the new puppy, trees, painter is an idiot, faucet leaks, and you name it, I've had heck...

Good gosh! By the time you read all of the information on this new medication, you may be too frightened to even try it! I've been giving myself injections with the other RA medications, some are in a "pen type form" which makes them a bit easier to use. I also give myself B-12 injections each month, with an "allergy medication" type syringe... and although I know they can cause all types of issues like TB. severe infections and so forth, this particular one has been "very rarely" known to cause MS (Multiple Sclerosis) which I don't believe the others were apt in very rare circumstances to cause MS. Anyway, this one is in a "pre-filled syringe" rather than the pen type. 

So that makes it a bit more difficult at first to get used to using. It f course has ONE HUGE set of instructions about "main side effects" how to give yourself the injections, and so forth, then there is a 2nd very LONG paper on ALL OF THE THINGS IT CAN CAUSE, SIDE EFFECTS, AND THE information that is more for the doctors - the medication guide, which of course is extremely detailed. Anyway, it will take me 2 days to just read through it all! I've already done research on it, from the website, but I am having heck again being able to sit for very long at the computer. Now that the one hip is injected and it feels somewhat better, I have the "lumbar thing" I think going on, because today I have pain down my legs, which is usually more about my lumbar sacral spine issues that just the hips. I can't win for losing LOL Plus I am just exhausted. I've got so many things I need to do, and I finally BOUGHT THE FLOWERS to take to the cemetery for Mom, Dad and my Grandparents vases.. plus I have some here at home I think I will put with them so I will have them a bit more full. 

Danged silk flowers are so expensive, and if you buy the 97 cent ones at Wally World or the 1.00 ones at Dollar Tree, then you need twice as many to fill the vases full enough! But, I am just too tired to go out and do them right now. The new puppy Bella has been waking me up at 3AM, most mornings, and then she gets me up, I get my coffee, sit down to watch a bit of Netflix and then SHE GOES BACK TO SLEEP dammit! LOL! But last night, she woke about 1AM, I took her to go to the bathroom, and she got a drink, and I put her back up with me, and she went right back to sleep! :) BUT THEN PEANUT, MY TWO YEAR OLD TERRIER, for some very ODD reason, woke me up at 3AM! He was standing pawing at me, and he wanted me to get up... I kept wondering and asking him if he heard something (but he was not barking) or if he was sick or what. So, then of course he wakes Bella up... Well I never figured out WHY or what he wanted! But of course I say to heck with it, get my coffee, and then BOTH OF THEM GO BACK TO SLEEP, ONE ON EACH SIDE OF ME!!!!! OMG! I was like danged I get one to "behave" and the other one acts out! The "only thing" I think he may have woke me up about, it that he has "seen" and basically "caught" a couple of those little baby "salamander's that I STILL CANNOT STAND! But, they get on their paper under the plastic, and it's slick so that can't get off of it... so I've noticed him looking all around the house sometimes, because I think he may see one, I know a couple of weeks ago, we both tried to get one and the little devil got up under the door and disappeared, before I could get him!!! I HATE THOSE THINGS!!! EEEWWW!!! they creep me out, but I will either swat them, or I have made spray from "hot pepper sauce" which nothing "hurts them" dammit, but it will make them run the heck off my front porch... so sometimes if I can't reach them to swat at them then I keep that spray out with me at night, and spray them. They then fall, LOL, and run off. Anyway, the little babies sometimes get in under the door from my laundry room to my kitchen, and that is where Peanut has pawed a couple, then he gets me, and knows I will finish them off and throw them out!!!! Then My crepe myrtle trees are just worrying me. 

They look so bad, especially the one out by the road. I've not been able to really trim it like I did the others. and it's so full of dead limbs'- I did take my pole saw, and cut a few limbs out of it, and then a couple out of my one by the driveway.... I found out they probably have aphids, for one, but trying to spray them even with regular insecticidal soap is almost impossible because they are so huge. I need a sprayer to go onto the water hose like my Dad used on his Pecan trees... but I threw mine away because it was worn out... and have not gotten another one... plus I CANNOT FIND MY CHANNEL LOCKS! I am so peeved, I have a pair, and then I have other plumbers wrenches but they are too huge. I do have a leak at the spout bottom and I probably need O-rings. But, I was going t take the "ring" loose and see for sure what parts I need, and I don't have the wrench I need to loosen that "decorative" piece over it... and now after reading, it may not even "screw" at all, but just "pry's" off. I've tried to find the right directions. I found the parts, but I can't find exactly mine to know if that piece that fits over it unscrews or if I just need t pry it up, I know the knobs well. I've replaced the cartridges in the hot and cold water faucets several times. 

But, this is the 1st time I've ever had it to leak at the bottom of the spout itself... so between that, and the "bar" the holds my hand held shower sprayer up in my shower that a piece broke off, I glued it back, and I knew it would not hold very long. I have a hand held shower sprayer that I got from TXU and it's heavier that the ones that came with the shower. Plus the tub is now 10 years old, and the "bar itself" is metal chrome, BUT the two pieces on the top and bottom that hold it up are "plastic"... so a piece that holds that screw into the shower wall, broke off inside that plastic piece... Since I have TWO hand held showers one on each side... I am going t try to "glue it again", take the piece off the other side, use it on my side, then put the glued one over on the side I don't use. I can then just eve eave the sprayer off of it completely, that way it won't have weight on it... but I've got to do something. I've left the screw itself in place, so I don't have water leaking behind the shower. 


Just a bit of ALL THINGS NUTS THIS PAST WEEK OR SO!

Talk about "one of those WEEKS!" I've been FIGHTING with the insurance for 3 WEEKS to get my new RA Medication, finally yesterday they called and it should arrive tomorrow, (hopefully, but talk about bad mess... I has to go have blood work done for an appt in two weeks, then went to the hospital to pick up my bone density scan results, from there I went to Waxahachie and sure enough I have bursitis in BOTH hips (as I tried to TELL MY OTHER ORTHOPEDIC SURGEON WHO WILL NOT GO ALONG WITH ANYTHING A PATIENT SAYS) OR SUGGESTS... so I got the left hip injected and go back next week for the right one... 

I got home and the "guy" that I hired to paint the house, and do the new boards around the bottom, had not shown up for days because he was going to "spray" part of it, and it was too windy. I didn't leave until NOON and he was NOT here when I left, but the doctor was over an hour late, so I didn't get home until after 3PM... mu little puppy was upset because I put her in the big kennel rather than lock them in the kitchen... it was cooler in the living room, and then her and Peanut don't pick on each other if I am gone (LOL) 

I think Bella the 9 week old picks on Peanut more that is 2 years old... then I drive up and here are ALL OF MY INDOOR HOUSE PLANTS, THAT ARE ON MY PORCH, SOME OF WHICH CANNOT JUST BE THROWN IN THE SUN, AND HE WAS THERE TO PAINT, BUT THROUGH ALL OF THEM OUT ON THE YARD IN THE SUN! Then I HAD TOLD HIM I WANTED ROTTEN BOARDS REPAIRED IN THE BACK, AND THERE ARE ROTTEN PLACES ON THE END BOARDS, ETC... NONE OF WHICH HE HAD FIXED, I also left a 3 PAGE MESSAGE ABOUT WHAT I EXPECTED, SAME STUFF WE TALKED ABOUT WHEN HE GAVE ME A QUOTE... and he was about half "pissed" at me... and HE WAS PAINTING, GOT OVER SPRAY ON MY WINDOWS, MY MAILBOX, ON MY FRONT LIGHTS ON THE PORCH AND HAD NOT FIXED ANY OF THE ROTTEN BOARDS. plus the paint he sprayed he cannot think he is not going to spray another coat! It looks like I took a "can of spray paint" and tried to paint my house with it! 

Anyway, I had put chili on in the crock pot before I left, I had to come in and calm the little pup down, and she peed all over me! LOL!! And calm the other one down, Peanut was all upset over the paint and the noise... he even painted over OLD CHRISTMAS LIGHTS, THAT HAD BEEN UP ON THE TOP WHERE WE NEVER GOT UP AND TOOK THEM DOWN, THEY WERE THERE WHEN WE BOUGHT THE HOUSE, and he KNEW they should come down, HE PAINTED WITH THEM UP, AND DIDN'T GET RID OF A COUPLE OF LIMBS FROM THE TREE AND HAD PAINT ALL OVER THOSE, paint on my ELECTRIC METER!!! 


Of course NOW, my "rod" in my "big honkin' shower" that holds my handheld shower device up" had a piece break off where it's screwed into the shower wall. Well, I think I found one, if it is the right length, and I believe it is, but just another damned thing to fix. I tried 'gluing" it, and put a "ring" in there to help hold it, but I figured with it being plastic as far as that piece it would not hold for long. So, after about a week, it broke off again. I have two. 

One on the other side I never use, but I still would have to find a way to get that bottom piece to at least hold up that bar. I could leave the hand held shower piece off of it, so no weight is on it... I think I can buy something to fit, just as I said something else to aggravate the crap out of you... and I am so worried about my Crepe Myrtle trees - I think they have either a type of Aphid on them, or what they call a black powdery mold... both can be "fixed" but I just cut another huge "dead" limb off one. The thing it they are about 30 feet at least tall... taller than my house, and have been that tall since I moved here in 2006. So, I know they are getting old. I read that these can last 50 years... but this house was built in 1950. 

I don't know when those trees were planted but they have been here a very long while. I can't stand the thought of losing even one of them. They are one reason I bought this house. They are just gorgeous... pink blooms all spring and summer, then in the fall the leaves turn all of the beautiful autumn colors, and the "bark" peels off of them at a certain time of the year... the 1st time it happened it scared the heck out of me, but it is one of their unique things, so then they have this "patina" almost kind of look... but again I have so many dead limbs, some small but some pretty large... and then just didn't bloom as they usually do... they have LOTS of buds on them, but they are just not opening like they usually do... part of it is the "weird" weather because of us having almost a "spring" like weather so early this year, they bloomed earlier, and now they should still just be filled with hot pink and they have loads of buds but not many are opening... then my Oleanders didn't bloom this year at all. I planted them like 3 years ago, and they have been fine. 

But, this year all I have is "greenery" but not one bloom all season... it 's just a pain in the butt... and of course my damned storage shed doors are screwed up, and I found a "kit" with the new "plastic" gliders etc I "think" will work, but heck again, trying to research, find it, wondering if it will work, and now my faucet in my kitchen, which I've repaired the hot and cold sides several times, and keep spares for them. But, the middle spout where the water comes out, has "appeared" as if it is getting wet around where it goes into the faucet.  

At first, I thought it was just from me, washing it, or getting water on it, but now it feels "loose" so I think it needs a part in it... again now I have to do the research on that faucet, and find out which part that is and then order it.... OMG! sometimes I just think selling and moving into an apartment would be easier..no maintenance, no lawns, no trees, no stuff to do the yard with, not having to deal with "pests" in and out of the house, and so on, no painting inside and out... YOU call THEY fix! LOL!!!

Wednesday, August 9, 2017

SICK and TIRED of the "stigma" placed on so many of us with Chronic Pain and just how horribly it effects our lives, I feel it's time for me to step up and also state my feelings on the subject!

For a long time, I've kept my "mouth shut" when it comes to the business over those who want to make EVERYONE, with Chronic Pain and Chronic Illnesses, look like a bunch of junkies! But, I am just too fed up with it! It's gotten to the place that rather than focus on other countries who could destroy our nation with bombs, or talk about how to "help" those with pain problems, or use their talk to make available more research dollars, funding to help those who are ill, rather than make us all feel as if we are doing something wrong. 

As I use the example of someone with Diabetes, would you take away their insulin? A person with high blood pressure would you deny them medications to lower their blood pressure? I've been thru just about every type of other "pain reliever" you can imagine. chiropractors, injections into my spine and occipital nerves in my neck, injections into just about every joint on my body, I am on several medications for the Lupus and RA, yet some other medications that I had MANY SIDE EFFECTS FROM, that were supposed to help with chronic pain, I have every surgery that is a promise to help my pain, I walk daily, I don't stay sedentary, I try and do all I can to ease my pain. I've gone through NSAIDS that can cause me to have another heart attack. 

My 2nd MI partially was caused from chronic pain, and after the fractures to my hip, my pain level increased, due to many things such as the change of my gait, my neck in such bad shape, that he has to "stretch" it 2 INCHES, because I lost that much disc space... So, I KNOW ABOUT ALL F THE alternatives. Some of which work wonderfully for some people. I am thrilled that some find relief from things such as Gabapentin, which caused me to "hallucinate" even on a small dose. So, after going through SO MANY YEARS, of every type of other treatment available, what "works" for me, may not be what works for someone else. "Chronic Pain" in itself is extremely complicated. Due to having SO MANY CONDITIONS, that can cause this type of pain, it's taken an "army of physicians", medications, treatments, surgeries, injections, therapy, you name it, I've done it to find "what works" for me, with the least amount of side effects possible. 

So it just "burns my butt" to hear the crude and down right stupid remarks some say about us patients, that live with pain daily. I give a good example. I had NO CLUE, HOW PAINFUL, a fractured hip was, UNTIL IT HAPPENED TO ME! That was one of the most excruciating times in my life, as far as pain goes. OMG, kidney stones are horrible and unrelenting at times. But those two fractures of my right hip.... were almost unbearable. Every tiny movement caused me so much pain, I thought I would go into convulsions. Even being put on the stretcher and taken over my lawn to the ambulance, I was literally screaming, crying and probably cursing so badly and loudly, all of my neighbors heard me! I even waited over 2 HOURS, before calling the ambulance.
  


I wanted to "make sure" I had a fracture, and not just a "bruised hip" before calling the ambulance. Then them trying to do an X-ray or moving me in any way, I shook and screamed in so much pain. And those things are "acute pain" issues. So, you take some of those and put them with someone often daily or many times in a month's time, and see how well they would function in life for very long. I tend to be one of those people who try and not "show my pain" or illnesses in public. But, believe me just because I am not limping or using a cane, or whining and moaning in pain, does NOT mean that it's not there. So, some of you may get sick and tired of seeing me post about all of this ridiculous uproar over this so called "crisis", but I intend to keep on getting the word out as much as I can, and supporting EACH OF US, who would be "lifeless" if we had to withstand chronic pain and illnesses without any type of relief. 

The LONG LIST of illnesses that can cause relentless pain are endless. You can have "diabetic neuropathy", many different types of arthritic illnesses, autoimmune illnesses and syndromes, nerve pain from degeneration of the joints, of bones, of the spine, migraines of many types now, TMJ, FM, torn muscles and ligaments, surgeries sometimes can cause pain, "neuralgia" comes from so many types of illnesses, whether sciatic nerve pain, from a lower back issue, or pain in the arms, wrists, fingers, from a cervical neck problem, or from problems with diseases causing bone pain, cancers of many types, all types of "myalgia's", torn muscles, chronic sprains, cartilage gone in joints, certain types of chronic bladder problems, certain intestinal chronic health problems, and the list goes on and on about health conditions that can cause or contribute to chronic pain and chronic illnesses. 

I've decided that I am going to "fight" as much as I can online, with petitions, letters and such the ridiculous claims that "everyone" who takes a pain medication is "addicted" or an abuser. Whether it be governmental bodies, the DEA, the FDA, or the President, (HOW CAN any of those people who have NEVER HAD A SEVERE AND CHRONIC PAIN DISEASE POSSIBLY UNDERSTAND OR KNOW ALL OF WHAT WE GO THROUGH IN A SINGLE WEEK?" ALSO, I am SICK OF the health insurance companies "calling" constantly, wanting to "go over" your medications "over the phone" when NOW THEY DON'T EVEN SAY WHO THEY ARE ON CALLER ID! Now rather than saying the name of the company, Caller ID usually say "1-800" number calling... how do I KNOW THEY ARE WHOM THEY SAY THEY ARE? Why do I want to "discuss" something that honestly, is NONE OF THEIR BUSINESS! That is between MYSELF, MY PHYSICIANS, and if I NEED HELP, MY OWN PHARMACISTS? It is insane how many calls I get from so called health insurance, wanting to discuss, "this, that or the other" about my "health".... I HAVE A LIFE TOO, and I don't care to sit on the phone for an hour telling a person I don't know and have no earthly idea who they are about my medications or anything else for that matter!!!!! 


We are WARNED AND WARNED ABOUT NOT GIVING OUT PRIVATE information over the phone to those we don't know.... so this is a prime example of what irritates the hell out of me!



I got a call earlier in the week, from a "guy" who I didn't even "understand" asking for me? He never said where he was from, or whom he worked for, and then when he mentions my medications, I got irritated and told him I was NOT at that time discussing it with him. In the first place, THE MAJORITY OF THE TIME, THOSE PEOPLE EITHER CANNOT SPELL 

MY MEDICATIONS, OR THEY HAVE NO CLUE WHAT THEY ARE FOR! Why should I have to "explain" those things over the phone to anyone????



So, some of you may get sick and tired of my ranting on the subject, but enough is enough!













Sunday, August 6, 2017

The Memories of Life BEFORE Chronic Pain & Illnesse"S", thoughts of simpler times, knowing one should NEVER be "complacent" & not share your feelings, all too often "we" lose out

In The World We Now Live In, All Too Often Many Of Us Remember Times that were Simpler, Many of Us Without Chronic Pain and Suffering, not Fighting to Get Into See Physicians, or Fighting to Get Insurance Companies to Pay the Bills. We also Were Not "Surrounded by A Sea of Specialists" Parents and Kids Never had to Be Concerned Over "kids Abusing Drugs", we could Leave Our Windows Open, Our Doors Unlocked, Those Time When a "Mean World" did not exist. You Could Walk down The Street, You could Drive down The Highway, Kids could Play in Their Yards, We were not a Country, And World filled with Violence, Hatred, Bigotry, None a few years ago would have been a "Suicide Bombers" or 'Home Grown" Terrorists; in fact any type" of Terrorists

 

 

Time were filled with good memories, vacations with families, getting together with the Neighbors, Having a "treat" of a Hamburger and Fries on Paydays. Deer Hunting, Fishing, and Our Minds Filled with The Promise of a Brighter Future... now WE LONG for those times that gas was .50 a gallon, and $10.00 would buy enough groceries for a month. We have such gratefulness and I know for myself, a "Longing" to live in "that World" again...

 

I had been "going over" all kinds of memories, good times. lousy times, and all of the "quickness" of how time goes by. My daughter and I were talking on the phone yesterday. She had taken the boys to get school shoes and clothes. She was saying that of course Logan, the youngest, still has a "school supply" list, yet James, who it just dawned on me, my oldest Grandson is going into JR. HIGH SCHOOL this year. So, of course they wait for many of the supplies because the teachers will want different things. That got me to thinking and remembering what seems like just yesterday, that Amanda and Jimbo brought James up from Corpus, he was only about 6 WEEKS old, born on December 6th, 2005. I had really just moved back to Texas, after being in Seattle for almost 5 years, and only had been back myself for about 2 weeks or so.

 

I got to looking at all of the photo's over the years, how little James was, then Logan, who is almost 5 years younger than James, is also getting much older, growing like a weed, and is now I believe 7 and going into the 2nd grade! Heather my Granddaughter, who was only 2 years old when Amanda and Jimbo began seeing one another, is now been out of high school over a year, and is starting on her 2nd year in college, working, and getting ready to go to nursing school probably next spring. As I thought about my years, my hopes, dreams, possibilities, the things I accomplished, things I wished I had accomplished, and that "list of deals, times, events, and yet dreams" of what we "hope" we get to do, before we are "no longer here" on this "plain" and have stepped into another realm. I've been blessed with the incredible children, grown, never was into loads of trouble, drugs, causing problems, both have the high school diploma's and have some college, certificates and so forth. I had a son in law that is that is the most caring, nurturing, loving, comforting, care taking husband, son and Father I believe I've ever known.

 

 My daughter and him met when she was about 15 years old, and as of today, and what will probably be the rest of their lives, that have a stable, happy, loving home, with three incredible kids, and they are blessed, and I am blessed and a better person for my daughter, son and son in law. When I think about how much I "missed out on" from my personal ideology that I so wanted to accomplish, I began pondering that first of all, when I was in school, and for the most part when my kids were in school, there was NOT a great deal of "meanness" of drugs, of those who choose to terrify other kids... life honestly was much simpler, especially when i was in high school. Yet, the very things I felt I would either "do" etc in my own personal life, much I never accomplished. I wanted to be a nurse, and in the medical profession, from the time I was about 13. I began my "writing" at 14, and felt I would be compelled to be a very accomplished author in the time to come. I wanted to travel much more, even overseas to many of the European countries, yet I've only been out of "the states" once, and that was to Mexico. I never even got the chance to go up to British Columbia when I was in Seattle.

 

It happened that I went shortly after 9/11, and things at the borders had really changed. In fact, I never owned a passport. I've seen many of our states, had many vacation from those with my parents, to those that I took my kids on, to those I've been with someone else, and then even by myself, to Austin TX, to Lancaster CA, to Phoenix AZ, been snow skiing, and have had many great experiences, even though I also "missed out" on many, that for one reason or the other, life turned me a new direction, thus I did something else, other than what I "thought I would".... at 57 years old, and suffering from several chronic and severe illnesses and pain, it makes it more difficult that when I was younger and in better health to jump up and spend a weekend in San Antonio, or go to Dallas dancing, or just for a night out on the town...

 

 I still have "some of those dreams" on a list, I don't really like the term "bucket list"... for some reason that just does not sound correct to me... but I have come to see that life is a challenge and LIFE FLIES BY TOO QUICKLY, you blink and you are in college, and you blink again, and you are over 50... pondering over where the time went, and why you did or didn't do some of the things you did. I've had many people over the years ask me how I "withstand" the illnesses and pain... 

 

well "faith" and "hope" along with what little bit of family I have, along with my "fur babies" keep me trudging forward even when i feel like throwing in the towel. So, tell everyone you love, that you love them, every chance you get, never take one moment for "granted" for the next one may not be there, never pass up an opportunity, if you can, to do something you have always wanted to do, be kind to those around you, be courteous to the elderly, those who are suffering, and even if you don't "give financially" giving FROM THE HEART, and with NO expectations, other than it made you feel good to do something... for coming from the heart and soul, is truly blessing someone else. I sit here today, alone, well Peanut is here, but no other "human" - and I do get lonely, I do at times feel that I've "failed" at marriage more than once. But, in my heart of hearts, i do cherish the "love" I've had, have and maybe someday have again.... Thanks to each and everyone of you, that give me a "lift" when this life seems to "weigh me down".... for you are a true blessing yourself....

Friday, July 21, 2017

The 50-State Network Health Advocacy, Creaky Joints, The Global Healthy Living Foundation and "Patient Counsil" that are at the heart of these Arthritic Illnesses & "Chronic Pain" Foundations



I've been a "member" and follower of "Creaky Joints", and "Arthritis Power" plus following Seth Ginsberg for a very long time. He began his venture of these websites, due to his own struggle with pain and arthritic illness that began very early in his life.

I've always admired his tenacity, and the way he gives each of us, the patients a "VOICE' about our own Pain problems and Arthritis health problems, and there are many. I can definitely attest to the MANY types of Chronic Pain, that myself and MANY of us have to try and deal with daily. Which includes trying to get to the proper doctors, get the medications we need, get insurance to pay for the help we need, all the while also fighting "Congress" on the Federal and State Levels, so we can continue to get the "Best Healthcare" for "Chronic Pain" possible. I believe that many people that have not experienced health conditions such as Rheumatoid Arthritis, Osteoarthritis, Juvenile RA, along with several other "arthritic" conditions, don't get the "horrid" pain all too often patients live with. Of course, pain, is not the only factor that effects every part of ones life. We often live with stiffness, joint swelling, mobility issues, medications that cause some "harmful" effects, such as corticosteroids. Like my PCP says to me, Prednisone is a "necessary evil" for me. Yet, I already was predestined to have osteoporosis, thus with my body frame being small, the medications, along with RA and Lupus, have me at the "severe" range of osteoporosis. This simply means, THAT is more than likely why my hip fractured after the fall I took in December last year. If I had not had osteoporosis, I may have came out with just a very bruised thigh and hip. Yet, it was fractured in two places. Also, those of us with this dreadful disease also run the risk of "not enough bone" to have surgery on. I have ran into that one with my neck. After this 2nd surgery, now I face "not enough vertebral bone" to even "repair" anymore. So, this 3 level surgery I had in April HAS TO WORK, as my Orthopedic Surgeon put it. If not, then I run the high chance of having a "totally fused" neck, where I could not look UP or down... or move my head very much side to side.

I had a very informative "phone conversation" with several of the people from the  50 State Network and the Patient Counsel all a spin off by Seth, as well as The Global Healthy Living Foundation this afternoon. I feel very privileged to be a part of these foundations. I hope to help further educate patients, doctors, find ways to get bills passed at the State and Federal Levels of government, along with other ways in which they help patients, there families, and close friends and help to pave the way for more guidelines on several extremely important topics that effect many of us, from "biosimilars", to "all ways" that patients are effected by health insurance or lack of, medications, finding doctors that can help, and ways to cope with the red tape involved when you are chronically ill,

Most that know me, know my own personal journey through the pitfalls, the times of doubt and sorrow, and the sometimes triumphs over these diseases. All too often patients like myself, have "several" pain problems, not just one. Which makes our life a living hell at times. We fight for treatments, medications, insurance that pays, along with every step we take. When you are chronically ill and/or in pain, it's difficult enough just to get out the bed each morning, much less take the stresses of finding proper care, proper medications, trying to get insurance to pay, and now fighting the government so we continue to be able to get the care we need on ALL LEVELS.

The 50-State Network Patient Network, along with Creaky Joints, and The Global Healthy Living Foundation are helping to get our governmental bodies "on board".  I am also now a member of the "Patient Counsil", and will update you more as I move forward in my own venture and learning about everything. They provide a great deal of information for patients, as well as those who are playing other "active roles" in these foundations Rather that taking away what we need to survive and try to thrive through all of the days of outrageous pain, we are out there fighting for not just ourselves but ALL CHRONIC PAIN PATIENTS, LOVED ONES, FAMILY, JOBS AND MORE!

I am hoping to become more active in a role with the 50-State Network, already involved in Creaky Joints, and to learn more about the Global Healthy Living Foundation. As the days go by and I learn more, I will definitely keep you posted, on how you can contribute. In the meantime, all of the links are below, so YOU can go to the sites an find out more also.

By the way when I was reading through the documentation from "Creaky Joints" one "phrase" really stuck out to me. Of course much of it is brilliant and so helpful to patients, caretakers, families and close friends. We've all heard the phrase "Do No Harm" which is of course the main "vow" of physicians. One of the things they pointed out though was that does not "just mean" physical harm, but mental and even "financial". I felt that really "struck" a nerve with me. With the very high cost of surgeries, and the ones I've had are always over the $100,000.00 dollar range... yet, unless you really "ask" for help, either for a payment plan, or "financial aid" of some type, often you are NOT offered it. I've found out there is NO SHAME in calling a health care provider, especially with a huge "bill" from surgery etc. and asking for some type of help. Often if you "pay it all" at once, they will give you a percentage off the bill, or like myself, on this "Bone Stimulator" that I was not told runs $5,000.00 AND ONLY LASTS ABOUT 6 MONTHS, and is NOT reusable for future surgeries. So, my part was going to be over $600.00, and that is just a "drop" in the bucket of bills, from hospitals, doctors, the Ambulance, ER, Anesthesiologists, Radiology, and so forth. I called and found out that I "qualified" for complete "assistance" for the entire 600.00. Yet, if I had not "asked" they never would have "offered" for sure. Just on portion of what we deal with on so many levels, with any chronic illness. 

Also, those of you who deal with the stresses of "Arthritic" illnesses may want to check out the app "Arthritis Power". The details are at the URL listed below... and you can also get it at the "App" Store at Apple.com or on Google Play.


Please visit the sites, and see just how incredible these places are along with seeing how YOU the PATIENT can be on board also, to fight the "good fight" for all!

https://creakyjoints.org/


https://www.ghlf.org/


https://www.50statenetwork.org/

 

https://arthritispower.org