I FINALLY GOT THOSE two mini blinds up in my living room. This time I didn't step "hard" off the step stool. Thank goodness. But, the wood in this house is so HARD it is extremely difficult to put a screw or nail into the wood! It was definitely made from some extremely hard type of wood for sure. Anyway, my neck and entire body knew that storm was coming. I've hurt for several days and day before and yesterday was really bad. I had to make myself get up and do something.
So, I baked a Lemon Pound Cake, got those blinds hung up finally, walked Peanut for a bit several times, and forgot I was completely out of any fresh fruit, and didn't even have any of the fruit cups or canned fruit I keep usually just in case I run out of fresh and don't feel like running to the market. It was almost 3PM by the time it dawned on me, but I threw some different shoes on, went to HEB & picked up a cantaloupe, a couple of plums, a couple of Gala Apples, and a HUGE Mango! I "hoped:" the Mango and cantaloupe were both good. I was almost too tired to get them prepared, but I finally decided I would get that cantaloupe scooped out, and cut up that Mango and they are both awesome! Sometimes the fruit is very good and sometimes very BAD! I hate when I pay expensive prices for fresh fruit, and it tastes like "cardboard".
Then I picked up a red bell pepper, some tomatoes, and a cucumber. I've been eating salads again almost every evening for with dinner. So, I decided to add a couple of things that I've not been eating lately. THEN I FORGOT to get a new head of lettuce of all things. But, I still have enough for another salad tonight if I want one, so I am good until tomorrow at least. But, by the time I got to the house, and started to take those two sacks in, I was so tired I could barely pick my feet up off the ground. I don't know if it is just all of the running to Dallas Monday to see the Orthopedic Surgeon, plus last week the drive to see my Rheumatologist up there, and today I see my Cardiologist... but I feel just drained of all of my energy.
I was on the sofa although awake but watching "True Blood" (I REALLY got into that series) and drinking coffee. I had quit drinking coffee for a very long time. Then after it began getting warmer, then I decide to drink coffee again. Usually one cup in the morning. But, it seems to upset my stomach, and that was one reason why I quit a year or more ago. It just does not set well sometimes with my stomach. My ENBREL CAME IN YESTERDAY! It was here on the porch when I got home from getting those groceries. BUT, I am about "half in fear" of starting it. When I was at my Rheumatologist office, we were talking about me being on a couple of the other RA injectables. It dawned on me, that when I was on the last one the Orencia, that is when I suddenly developed the cellulitis in both of the tops of my thighs. One week the left one began to have the lump in it, and then about 10 days later the other side in almost the same position began to have a lump. Later that turned into going to a surgeon, who had to open that mess up, and finally he messed up so badly (THANK GOODNESS he retired about 6 months ago) that I had to go to the wound care up at Charleton Methodist for 8 weeks I believe. They had to clean those out and put that special stuff in them to get them to get rid of the infection and finally close up, but I was dealing with that for almost 6 months or more. The Orencia, I feel was "contaminated".... I developed those places within a few days after the injection, in the about location I had been injecting them... and I felt it is was much of a coincidence that they came up a few days after the injection, in the same location from where I was doing those injections.
Now, I do my B-12 injections monthly, and never have had any issues with those. And I am even more cautious that the doctors offices, when I give myself injections. I clean them several times all around on my thighs with the alcohol preps, and make sure everything stays completely sterile, and always cover up that spot with a band-aid for 24 hours. As most of us know we "carry" strep and staph or many of us do on our skin. It is almost impossible in the world we live in not to have some type of things like that on the surface of our skin. So, cleaning it is essential so not to "PUSH" those germs under the skin. Anyway, this one is in an "injectable pen" which is much easier to deal with, but honestly it to me hurts more than using a needle like I do with my B-12. I use the allergy needles for that and I never feel a thing. So, I put it in the fridge, and decided I would go back over all of the instructions today, and I am taking a shower in just a bit, so after my shower then I will take the first dose. I had to do this one once a week. My neck is definitely "worse".
I believe I said that last night or night before last. LOL,,, I cannot keep up with the days anymore... it is 100 percent collapsed now and 1 of the ones he worked on before "may" be needing a bit of work, plus this time even on X-rays I showed several bone spurs. He said he definitely knew I had to be in pain, plus I can barely turn my head side to side. So, we are looking at probably the "middle" of April depending on how quickly the insurance approves it. Which they had already approved it last year, then due to Mom and then my hip fractures, I could not have the neck surgery. I think I just kind of "pulled" the muscles/ligaments around my neck and below it. It is much better today, except when I step a certain way. But, it is mostly doing okay thank goodness. Hell, now my elbow on the left arm, that was bad and I had surgery to attach the tendons back onto the bones, is beginning to "pop". It needed surgery at least 4 or 5 years ago, and I just took a couple of steroid injections, and decided to put it off. It is not hurting, so that is a good thing, it is just popping when I bend it or straighten it. If it's not one joint it's the other... LOL....
Showing posts with label RA. Show all posts
Showing posts with label RA. Show all posts
Wednesday, March 29, 2017
Tuesday, March 21, 2017
Rheumatologist appt today, hoping for Xeljanz, severe finger, thumbs, wrists pain, stiffness, swelling & needing relief - Also thinking that I have "shingles" and not something biting me
Today is the day! To the Rheumy I go. So far, my hand fingers, thumbs and wrists are hurting and swollen I hate when I go to a doctor and by the time I get there whatever is going on seems to be "better" that particular day! Since this has been going on now for a good while, they have been really bad on my right hand where i do well to type here, cannot open jars, cannot carry much of any weight with that hand and arm to the point it is really affecting my left arm and hand. My left elbow is now a mess I think. I know some of it is coming from my neck, but I knew the elbow has been bad for a long while. I've spoken about it before, after surgery on it in about 1998, now it is getting bad again, and I know it is due to me having to use my left hand, arm, wrist and shoulder much more than my right one. I could barely get my tea holder open this morning, because it hurts so badly to pull the lid off of it. I dread the drive up there though. His office means going on I-45 but then I have to make this horrid couple of miles that is a nightmare in order to get over to I-35 where the offices are for the SW Med Center.
So, I always hate the traffic. My appt is early afternoon so that will help some, plus I will leave in plenty of time just in case there is issues with traffic, but still just the regular traffic that particular way is terrible any time of the day. Plus the drive home is almost as bad... same deal you HAVE TO be in the CORRECT LANE in order to make the cross back over to I-45 and that is about a 6 lane or more highway there, and goes all directions. Plus they have been doing a great deal of construction in that area so that even makes it worse. Then you have the idiots that don't get in their right lane until they have to cross over 4 lanes of traffic at the last minute and risk a chance of hitting someone with their stupidity.
I know most of them are from that area and they think the "know" just how to move in the lanes, but usually even if they are driving like maniacs, it gets them no quicker there, than me, who is driving in the correct lanes with the flow of traffic. Speeding, is something I just don't do, BUT as many know in huge cities, with that much traffic sometimes driving the "speed limit" will get you ran over also. So, I've learned over the years in those places to try and drive with the flow of regular traffic, thus usually it makes it a bit easier to be in the lane you need to be and give yourself time to be there. I am a good driver as far as I am concerned, but it the other fools on the road that bother me... trying to look out for all of them, in so many lanes at once, and then trying to not hit someone when they cram on their brakes, or avoiding someone behind you hitting you because they are not watching to see brake lights coming on or they tail gate, which pisses me off to no end. Those that tailgate are just accidents waiting to happen. Anyway, I am hoping we try Zeljanx.
That is my hope BUT since I am facing cervical neck surgery in probably a month, my fear is that they will not want to put me on the medication, until after the surgery, and a few weeks after it until I am kind of out of the woods for any type of infection. BUT, hopefully that won't happen, and I can get approved for it and get started quickly. I know they will have to send paperwork into my insurance company to get that medication approved. After all of the crap going on now with the government, my fear is many of us will wind up having to either NOT take our medications, because they will not cover them, or our co-pays will be higher, or we will have to try and get the drug companies to help with the costs, which many of them will do now just to be able to get the meds out there and hope the insurance will finally wise up, but I think it is worse when you are on any type of Medicare, especially a Medicare Advantage Plan. So, I am going over things and checking email etc. I will have to get out of here a couple of hours before I need to be there. by the time I get to the Valet parking, and then get in to check in, fill out paperwork since it has been so long since I was there and then all of the things to tell them. They are not aware of my hip fractures and my ankle/foot issues, or the complication with the hematoma on my hip and so forth. So, hopefully this visit WILL help and be one that is not worth going for as they do sometimes.
I feel that maybe is my what I thought was some type of "bite" or sting, could be shingles. With them being on one side of my body, on my upper arm and on my torso, it sounds like and kind of appears to be those... I take the medication daily for my cold sores, which is the same family of virus that the shingles come from, so my thought it that my case might be "less" due to the medication...
So, I always hate the traffic. My appt is early afternoon so that will help some, plus I will leave in plenty of time just in case there is issues with traffic, but still just the regular traffic that particular way is terrible any time of the day. Plus the drive home is almost as bad... same deal you HAVE TO be in the CORRECT LANE in order to make the cross back over to I-45 and that is about a 6 lane or more highway there, and goes all directions. Plus they have been doing a great deal of construction in that area so that even makes it worse. Then you have the idiots that don't get in their right lane until they have to cross over 4 lanes of traffic at the last minute and risk a chance of hitting someone with their stupidity.
I know most of them are from that area and they think the "know" just how to move in the lanes, but usually even if they are driving like maniacs, it gets them no quicker there, than me, who is driving in the correct lanes with the flow of traffic. Speeding, is something I just don't do, BUT as many know in huge cities, with that much traffic sometimes driving the "speed limit" will get you ran over also. So, I've learned over the years in those places to try and drive with the flow of regular traffic, thus usually it makes it a bit easier to be in the lane you need to be and give yourself time to be there. I am a good driver as far as I am concerned, but it the other fools on the road that bother me... trying to look out for all of them, in so many lanes at once, and then trying to not hit someone when they cram on their brakes, or avoiding someone behind you hitting you because they are not watching to see brake lights coming on or they tail gate, which pisses me off to no end. Those that tailgate are just accidents waiting to happen. Anyway, I am hoping we try Zeljanx.
That is my hope BUT since I am facing cervical neck surgery in probably a month, my fear is that they will not want to put me on the medication, until after the surgery, and a few weeks after it until I am kind of out of the woods for any type of infection. BUT, hopefully that won't happen, and I can get approved for it and get started quickly. I know they will have to send paperwork into my insurance company to get that medication approved. After all of the crap going on now with the government, my fear is many of us will wind up having to either NOT take our medications, because they will not cover them, or our co-pays will be higher, or we will have to try and get the drug companies to help with the costs, which many of them will do now just to be able to get the meds out there and hope the insurance will finally wise up, but I think it is worse when you are on any type of Medicare, especially a Medicare Advantage Plan. So, I am going over things and checking email etc. I will have to get out of here a couple of hours before I need to be there. by the time I get to the Valet parking, and then get in to check in, fill out paperwork since it has been so long since I was there and then all of the things to tell them. They are not aware of my hip fractures and my ankle/foot issues, or the complication with the hematoma on my hip and so forth. So, hopefully this visit WILL help and be one that is not worth going for as they do sometimes.
I feel that maybe is my what I thought was some type of "bite" or sting, could be shingles. With them being on one side of my body, on my upper arm and on my torso, it sounds like and kind of appears to be those... I take the medication daily for my cold sores, which is the same family of virus that the shingles come from, so my thought it that my case might be "less" due to the medication...
Thursday, March 16, 2017
Thursday’s Addition of my Newspaper "Life Chronic Pain & Autoimmune Systemic Diseases & Dementia
For those of you who may not be aware of my daily Newspaper I have and put out everyday here is a link to today's latest addition for today's paper! LOTS of great information here on Chronic Pain, Lupus, RA, other Autoimmune Illnesses, Dementia, and more. There are usually pics, along with articles, and video's daily.
Please stop by and see the daily additions. I usually update it at least once daily in the mornings, and sometimes twice daily if I feel there is more I should let you know. There is also a link that has that information on the side of my blog pages if you can't find it one day. I've been getting quote a good deal of positive feedback, even from Twitter, IN, FB on several of my pages, and more....
Come by, visit and give me your feedback!
Sunday, March 5, 2017
SHINGLES??? What NOW! Always some thing to deal with medically it feels like.
I began to put the cabinet together yesterday. Looks like the actual "corners" that are "damaged" will be on the bottom of the cabinet in the back portion I think. Anyway, I still have about 30% to finish. I was actually putting it together in my hallway, but I am thinking about taking what I have put together now, into the back bedroom.
If I put much more of it together, then it will be too large and probably too heavy to move into that room. I had to take some things out of that room, and make a space large enough to work in. But, I have an "odd" thing going on. For one, although the weather is kind of dreary, cloudy, and rainy looking, it is not all that cold outside, more just a very damp coolness.
But, I've been COLD now for 2 days, upset stomach off and on, and I "thought" something had bitten me, or stung me on my left arm. It began feeling like it has "fiberglass" on it, that tingling, stinging, very itchy feeling. I've not felt all that great now for several days, and I figured it is just the weather causing me to feel lousy.
But, this now severe itching is driving me nuts. I found what looked like one small "blood blister, about half way up on my upper arm, up from my elbow. It almost reminded me of the severe wasp sting I had last year, but as far as I know, of course I have not been stung by any type of wasp. Plus, I don't think mosquito's are out and even if they were this is not from a mosquito, I don't think either.
*By what I know about "shingles" and what I have looked up, and with my Lupus and RA, that makes me a higher risk to get them, it "might be" shingles dammit. If anything touches my skin from just below my elbow, in the bend of my elbow and then about up to this "green spot" it makes me want to scratch the heck of out it, but it burns, stings and tingles. I did not know that you can have shingles and not have an eruption of the blisters/rash that usually appear. My guess since I read that the rash actually may not appear for several days after the pain and itching has happened, it kind of looks like I may have some "rash-like" places especially in the bed of the elbow. Good gosh, what else... I also have doctors appts. Monday for my hip f/u, Tuesday to Dallas to see my Rheumatologist, and Thursday back to Dallas to have my pain pump refilled. I also have been fighting a bad headache along with my upset stomach. Anyway, I guess I will just wait and see what this looks and feels like tomorrow. I thought I would be putting that cabinet together the rest of the way today, but with my stomach so nauseated, right now I think heading for the sofa is best for while at least until my tummy feels better. Take care everyone, there are all kinds of "bugs", the Flu and other illnesses around right now... Rhia Steele "All things Autoimmune"
Here are a couple of websites with information on Shingles:
Sunday, February 26, 2017
Stressing Out, Trying to Cope, with surgeries,health,family,doctors, and trying to "get over" all that I cannot "fix".... Weather,Chronic Pain,RA,Doctors,Hip surgery & Life
For some reason (and I know partially some of the reasons) I am just in such an odd, feeling like I am just totally forgotten about, crappy mood that I've been trying to "shake" now for a week or more. I know the weather does not help, this HOT one moment, and in a few hours, COLD, dreary, and you need a coat on, and then that makes my entire body almost have this deep ache, especially in my joints. Even the entire leg from the hip all the way to my foot, has an ache to it... and it was not like that right after the surgeries. In fact after it was repaired, I did not have a HUGE amount of pain, but enough I had to take medication to do my PT, etc...
But now, even again this morning, I woke up to a horrid headache, that then made me sick to my stomach, and I knew better than to drink any coffee if my stomach is nauseated... that just makes it worse. So, I made a cup of hot tea instead and that seemed to help calm my stomach and I took my nausea meds also. then of course although it was sunny yesterday, with the wind it was still really to COOL to do much outside.. So, wake up this morning to not rain yet, but now it has clouded over, and we have a pretty good have of rain or even thunderstorms later this evening, in to tomorrow and maybe rain on Tuesday also. Plus the ordeal with my Surgeons' office Friday left me pissed... I wanted to make sure I had seen him BEFORE going to my Rheumatologist, so I would have the latest X=ray and know how the hip is healing etc. Plus I have a bit of a purple spot, and have had some what I figure is "nerve pain" down that entire leg, but more than likely that is from my back.
It is still annoying because I get home to find out they rescheduled my appt for the SAME DAY AS MY RHEUMATOLOGIST IN DALLAS!!!! Well, of course that won't work, so now I have to get them to hopefully schedule it BEFORE I go to my Rheumy. because we want to try new medication the RA is getting so much worse, especially in my thumbs, fingers and wrists. My right hand has swollen spots on it almost all the time now or especially if I do lots of things using my hands... from cutting small branches, to washing my car, even driving makes my thumbs and fingers (the 2 next to my thumb) "go to sleep" or be numb. It is annoying plus that tells me the RA is progressing, which is the last thing I need to happen. I've been trying to keep as busy as possible doing cleaning, throwing away stuff that needs to go, taking care of all of my plants, ready to put them outside as soon as I can... a couple of them HATE being inside during the winter and will look like they are going to die while inside.
I even put my cool mist humidifier in the room and run it several hours a day. Anyway, I have PLENTY to do that can keep me busy, just going through, and as I said throwing away old things, or getting rid of stuff I know I will never use. I keep lots of things (a few certain things not like a hoarder) LOL that I feel may come in handy later. Sure enough there are many times, something comes up and I need a certain thing, then I recall, I put something away,, that may work, and I don't have to buy anything, or run out to the store, etc. But, there are also things I hang onto knowing fully well, they just need to be trashed. I even do that with coupons now. I cut out what I need and throw away the rest. I had been taking them to the girls at Wal-greens, but so many of them are gone, or they may not have small babies that need certain items that I have coupons for etc. I also pitched a couple pair of old sandals. I had been just using them around in the yard during the hot months, but I had basically "glued" them one or twice, the stone kept falling out of another pair, that we worn out, and stuff like "half-slips" OMG I cannot recall the last time I needed any type of "slip" under clothing - Women's clothes are different or they have a liner in them thus no need for a slip etc. And I had a billion samples of all kinds of shampoo, and those types of things, that I had accumulated over 5 or 6 years, and some of it, was just too old, and needed to be trashed. I also have been going through all of my "hand tools"... like for my plants, hand tools for my yard, spades, things like paint brushes, items to work on my windows with, screws, nuts, bolts, nails, sheet rock things, my screwdrivers, cordless drill, and just an entire "collection" of things such as screws, nuts, bolts, I never throw away, I can guarantee I will need one that size later, so I have been putting those in empty pill bottles, I take off the labels and save some to put those types of things in them. I have several bins, many need nose pliers, vice grips, small saws, hammers, and as I said you name it, I have kept them... so they are going to finally be organized and I went ahead and ordered the "cabinet" with doors - so many, of those types of things can be put away, organized, rather than sitting in a couple of boxes on table tops taking up space, and causing me to have to dig through things when i need something.
BUT, EVEN WITH ALL OF THAT, I GUESS I AM SICK OF FEELING OR BRING ILL, OR NOT FEELING WELL, or "not doing some stuff" until I get another "review" about my hip and foot. I am just frustrated, with myself, with all of the catching up, with stuff I "am not sure" whether I should do or not... which is really stupid. My surgeon told me last time I was there, I could basically "DO" What I FELT I COULD DO... LOL! not things such as sky-diving, or up on a ten-foot ladder painting right now, or trying to pick up things that are too heavy, and that is more for my neck and back, than it is my hip. I do know I've got some pain from the hip that runs down the inside of my thigh, and they say that can be very present, and is likely after a hip fracture and repair.
I am also using muscles that were not used for 6 weeks or more... while I was in the hospital and them Rehab Inpatient PT. But, they really were giving me a workout in PT honestly. So, I am avidly doing my ankle and foot exercises, and I make sure I do them with both legs, so both feel strong. I had sprained the left ankle a couple of times also, and due to the flat feet, that tendency to "re--sprain" or for those muscles and tendons to be loose is probably there in that foot too. Right now, I am just having to MAKE MYSELF SIT HERE AND TYPE!!!! It makes my neck and shoulders hurt if I type for very long, a well as my thumbs,fingers and wrists. I guess in "wrapping" up this ongoing FB post, I will close with I know MANY of us are going through the same thing. But, I think I expected "more out of myself" than where I am.
I also felt I would be more "settled" with all of the medical things, so I could get my neck fixed... I know I probably face lower back surgery, especially since we found out I had that "missing lamina" that they feel I was that way, without it there in that area, and I know my discs there are not good either... and even though it's been 8 months or so since Mom passed away, I am still dealing with her, paperwork and stuff, but also that I still in ways grieve for her, and find myself almost "LOST" with her no longer around. I catch myself thinking "I should call Mom and tell her, this, that or the other"... then it dawns on me, that she is not "reachable" from here anymore... so LOTS of "stuff" even more than I've poured out here is causing me to really have a great deal of "stress" that some is really useless... if I can't "fix" it then I should not stress over it....
But now, even again this morning, I woke up to a horrid headache, that then made me sick to my stomach, and I knew better than to drink any coffee if my stomach is nauseated... that just makes it worse. So, I made a cup of hot tea instead and that seemed to help calm my stomach and I took my nausea meds also. then of course although it was sunny yesterday, with the wind it was still really to COOL to do much outside.. So, wake up this morning to not rain yet, but now it has clouded over, and we have a pretty good have of rain or even thunderstorms later this evening, in to tomorrow and maybe rain on Tuesday also. Plus the ordeal with my Surgeons' office Friday left me pissed... I wanted to make sure I had seen him BEFORE going to my Rheumatologist, so I would have the latest X=ray and know how the hip is healing etc. Plus I have a bit of a purple spot, and have had some what I figure is "nerve pain" down that entire leg, but more than likely that is from my back.
It is still annoying because I get home to find out they rescheduled my appt for the SAME DAY AS MY RHEUMATOLOGIST IN DALLAS!!!! Well, of course that won't work, so now I have to get them to hopefully schedule it BEFORE I go to my Rheumy. because we want to try new medication the RA is getting so much worse, especially in my thumbs, fingers and wrists. My right hand has swollen spots on it almost all the time now or especially if I do lots of things using my hands... from cutting small branches, to washing my car, even driving makes my thumbs and fingers (the 2 next to my thumb) "go to sleep" or be numb. It is annoying plus that tells me the RA is progressing, which is the last thing I need to happen. I've been trying to keep as busy as possible doing cleaning, throwing away stuff that needs to go, taking care of all of my plants, ready to put them outside as soon as I can... a couple of them HATE being inside during the winter and will look like they are going to die while inside.
I even put my cool mist humidifier in the room and run it several hours a day. Anyway, I have PLENTY to do that can keep me busy, just going through, and as I said throwing away old things, or getting rid of stuff I know I will never use. I keep lots of things (a few certain things not like a hoarder) LOL that I feel may come in handy later. Sure enough there are many times, something comes up and I need a certain thing, then I recall, I put something away,, that may work, and I don't have to buy anything, or run out to the store, etc. But, there are also things I hang onto knowing fully well, they just need to be trashed. I even do that with coupons now. I cut out what I need and throw away the rest. I had been taking them to the girls at Wal-greens, but so many of them are gone, or they may not have small babies that need certain items that I have coupons for etc. I also pitched a couple pair of old sandals. I had been just using them around in the yard during the hot months, but I had basically "glued" them one or twice, the stone kept falling out of another pair, that we worn out, and stuff like "half-slips" OMG I cannot recall the last time I needed any type of "slip" under clothing - Women's clothes are different or they have a liner in them thus no need for a slip etc. And I had a billion samples of all kinds of shampoo, and those types of things, that I had accumulated over 5 or 6 years, and some of it, was just too old, and needed to be trashed. I also have been going through all of my "hand tools"... like for my plants, hand tools for my yard, spades, things like paint brushes, items to work on my windows with, screws, nuts, bolts, nails, sheet rock things, my screwdrivers, cordless drill, and just an entire "collection" of things such as screws, nuts, bolts, I never throw away, I can guarantee I will need one that size later, so I have been putting those in empty pill bottles, I take off the labels and save some to put those types of things in them. I have several bins, many need nose pliers, vice grips, small saws, hammers, and as I said you name it, I have kept them... so they are going to finally be organized and I went ahead and ordered the "cabinet" with doors - so many, of those types of things can be put away, organized, rather than sitting in a couple of boxes on table tops taking up space, and causing me to have to dig through things when i need something.
BUT, EVEN WITH ALL OF THAT, I GUESS I AM SICK OF FEELING OR BRING ILL, OR NOT FEELING WELL, or "not doing some stuff" until I get another "review" about my hip and foot. I am just frustrated, with myself, with all of the catching up, with stuff I "am not sure" whether I should do or not... which is really stupid. My surgeon told me last time I was there, I could basically "DO" What I FELT I COULD DO... LOL! not things such as sky-diving, or up on a ten-foot ladder painting right now, or trying to pick up things that are too heavy, and that is more for my neck and back, than it is my hip. I do know I've got some pain from the hip that runs down the inside of my thigh, and they say that can be very present, and is likely after a hip fracture and repair.
I am also using muscles that were not used for 6 weeks or more... while I was in the hospital and them Rehab Inpatient PT. But, they really were giving me a workout in PT honestly. So, I am avidly doing my ankle and foot exercises, and I make sure I do them with both legs, so both feel strong. I had sprained the left ankle a couple of times also, and due to the flat feet, that tendency to "re--sprain" or for those muscles and tendons to be loose is probably there in that foot too. Right now, I am just having to MAKE MYSELF SIT HERE AND TYPE!!!! It makes my neck and shoulders hurt if I type for very long, a well as my thumbs,fingers and wrists. I guess in "wrapping" up this ongoing FB post, I will close with I know MANY of us are going through the same thing. But, I think I expected "more out of myself" than where I am.
I also felt I would be more "settled" with all of the medical things, so I could get my neck fixed... I know I probably face lower back surgery, especially since we found out I had that "missing lamina" that they feel I was that way, without it there in that area, and I know my discs there are not good either... and even though it's been 8 months or so since Mom passed away, I am still dealing with her, paperwork and stuff, but also that I still in ways grieve for her, and find myself almost "LOST" with her no longer around. I catch myself thinking "I should call Mom and tell her, this, that or the other"... then it dawns on me, that she is not "reachable" from here anymore... so LOTS of "stuff" even more than I've poured out here is causing me to really have a great deal of "stress" that some is really useless... if I can't "fix" it then I should not stress over it....
Friday, February 24, 2017
Friday's Addition of my Newspaper "Life Chronic Pain & Autoimmune Systemic Diseases & Dementia
For All of you that may not know that I also have a Daily Newspaper that contain all types of articles about Chronic Pain, Dementia, RA, other Autoimmune Diseases, Lupus, and everything that pertains to these types of Systemic Illnesses, Chronic Illnesses, Dementia and Chronic Pain Issues.
From articles about medications, and the "trauma" we are in as far as getting our pain and Opioid prescriptions, our doctors, the government involvement in medications, Chronic Pain people and how more and more people are becoming "victims" of these diseases, Sjogren's is another one.
There are articles about Cannabis and how it is helping some Chronic Pain patients, and other alternative types of treatments, from Acupuncture, Yoga, other relaxation treatments, and the latest on research of new and upcoming medications and other things to help ALL of the horrible illnesses and diseases, plus I also put my blog posts there usually. But, there are video's and articles from anywhere like the Arthritis Foundation, to Lupus, and the Alzheimer's and Dementia Non-Profits.
Please stop by daily and check it out. I would really love to have you come by. I update at least once daily, sometimes more than that, so it is always current.
http://news.autoimmunearthriticsystemiclife.com/#
From articles about medications, and the "trauma" we are in as far as getting our pain and Opioid prescriptions, our doctors, the government involvement in medications, Chronic Pain people and how more and more people are becoming "victims" of these diseases, Sjogren's is another one.
There are articles about Cannabis and how it is helping some Chronic Pain patients, and other alternative types of treatments, from Acupuncture, Yoga, other relaxation treatments, and the latest on research of new and upcoming medications and other things to help ALL of the horrible illnesses and diseases, plus I also put my blog posts there usually. But, there are video's and articles from anywhere like the Arthritis Foundation, to Lupus, and the Alzheimer's and Dementia Non-Profits.
Please stop by daily and check it out. I would really love to have you come by. I update at least once daily, sometimes more than that, so it is always current.
http://news.autoimmunearthriticsystemiclife.com/#
The name of the Newspaper is:
Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®
Friday, February 17, 2017
With Will, Hope, Faith, many prayers from many people, I am able to do some things I thought I would never do again after the hip fractures.
I couldn't resist taking these photo's today. First of all, I actually put MAKE-UP ON twice this week! LOL!! Then today I went over to Waxahachie to Lowe's and I found the cabinet I was looking for. But. I just had my car, so I knew I could not fit it in... I'll either order it and have it delivered, or Jason may help me sometimes next week. I really need to research some of the wallboard etc to put up in the back bedroom and finish out the laundry room....
Anyway, I actually went over there and decided since I am "very stable" especially the hip now, I would wear my new "ankle boots". They have a small heel on them but i felt I could handle walking in them, so on they went. Also, a couple of the nurses and my Orthopedic surgeon, and the anesthesiologist even all were taken back and kind of made fun of my belly button ring. I had forgotten to take it out before they took me to surgery, so I was already on the operating table and I took it off and they taped it to my bed. ;) So, I made a photo of my belly button ring, just to show you can be (OH LORD) 57 yrs old and still 'court" fashion.
I got back to town and decided to stop at HEB's and pick up a few items. I had a young woman stop me and tell me how great I looked in my outfit... :) That truly made my day!!! So, I share with you what I was so proud of. When i 1st had the hip fractures, I was so bummed, I felt I may never be able to walk without a cane, or at least for a long while, plus I felt I may never be able to wear my "sensible" heeled boots.... and here it is on Feb. 13th 8 weeks, I am able to do what I thought may never happen :)
Anyway, I actually went over there and decided since I am "very stable" especially the hip now, I would wear my new "ankle boots". They have a small heel on them but i felt I could handle walking in them, so on they went. Also, a couple of the nurses and my Orthopedic surgeon, and the anesthesiologist even all were taken back and kind of made fun of my belly button ring. I had forgotten to take it out before they took me to surgery, so I was already on the operating table and I took it off and they taped it to my bed. ;) So, I made a photo of my belly button ring, just to show you can be (OH LORD) 57 yrs old and still 'court" fashion.
I got back to town and decided to stop at HEB's and pick up a few items. I had a young woman stop me and tell me how great I looked in my outfit... :) That truly made my day!!! So, I share with you what I was so proud of. When i 1st had the hip fractures, I was so bummed, I felt I may never be able to walk without a cane, or at least for a long while, plus I felt I may never be able to wear my "sensible" heeled boots.... and here it is on Feb. 13th 8 weeks, I am able to do what I thought may never happen :)
Sunday, February 12, 2017
Finding some kind of "Quiet" in all of the Chaotic Realms of my Own Daily Life, what I want, what I need to do, and why I am NOT doing some of the things I think I "want" to do... as I said "chaotic"
If I sound "off" today, I feel "off".... I've been having so many nightmares, or just plain terrible dreams, I even began waking myself up and writing them down... and my sleep is all off schedule... I get up way earlier than I had been, and by the time 9PM comes around, I am ready to lay down. I try to watch a movie, and sometimes I do, other times I wake up and the movie is over, and the TV is still on... and the weather is really messing with me... although it is warm here, our humidity levels are so high, it appears as if it has rained, and I even Peanut acting a bit "off" ... we did have a full moon, but this has been going on now with me for several weeks. I "think" I am just sick of being in the house so much, and although I have a billion things I can do, for the most part, I just cannot get motivated enough to do them. I've thought it was my diet, so I went back to eating breakfast earlier, like I did while in the hospital...
so I try to eat by about 8:30AM or so, but then by 2PM, which is too late to eat "lunch" because I eat dinner by about 5:45 for the most part, so I even made some of my own homemade granola... I have to get more stuff to go into it, but it turned out good, and this way I can keep out the nuts and stuff that my dentures just cannot take... I bought some "trail mix" and they have whole almonds in it, and even when I chopped them up more, I still cannot chew or bite on an almond, they are just too hard, and oddly enough, I like the "flavor" of almonds, but I am not crazy about the nuts themselves... I love walnuts, and they are a bit less hard, but I realized while I was looking for granola recipes, you can even put like Cheerios cereal in it, and other things I had not thought about... I used "brown sugar Splenda" in it and a little bit of honey... then put my favorite spices, allspice, cinnamon, cardamon, ginger, and nutmeg...
and I had a few dried dates, and I took the dried cranberries out of the trail mix, and they had some dried cherries in it... plus I put coconut in it before I put it in the oven... I want to get it a bit "chunkier" though... so probably more honey or brown sugar, so it will "stick together" a bit more... then I need to grab several of my favorite dried fruits to go in it, and those now are easy to find... anyway, I am just having a tough time trying to figure out where to "stick myself"... I came down with a sore throat the last couple of days, and I know everywhere in Ennis I go people are coughing and sneezing, and hoarse, and the flu, and some other viral stuff is going around, plus lots of people are suffering from pneumonia, which I HOPE that new vaccine I took early in the fall helps to keep me away from the pneumonia.. I had it like 2 or 3 years in a row, twice in both lungs, so I don't want any of that if I can stay the heck well. Besides if I come down with something like that it delays my possible new RA medication, and/or my neck surgery... and then this morning, for some odd reason, I was getting up off the sofa, and "hit" the nerve I guess going down my left leg...
I NEVER usually have issues with that side, but it burned and stung like I was on fire... so I am not sure, if I happened to have "rolled" on it getting up or if my lower back is acting up, but this time on my left side... when I've had kidney stones, my left side usually hurts worse than the right. So, I first thought oh crap, not a kidney stone... but it is more I think all weather related... my hip and right leg have hurt now for about 3 days or so... I even have been getting Peanut on his leash, and the days it is nice outside, we walk 4 or 5 times during the day.... he loves it ... and he got upset with me this morning. I had to go around to the back and get one of the smaller tree limbs that I need to get into the trash, plus I had a whole trash can full of limbs and tomorrow is trash day. I always try and bring the cans up to the side of my house, especially if we have bad weather, so I don't have to go around to the back if it is rainy or cold... so he was upset. I could not hold his leash, and try and bring the limb and the can up to the front... but I had him out for a little while to pick up the newspapers, and it is still damp outside... I figure it will either "cure me" or "kill me: as the saying goes, to get out and walk around for a bit...
I've got fire ants coming out again, so it is time to get the fire any granules out, but also time to spread the granules out I buy for spring and summer. I have to do it early as of now, since we have basically not "had any real winter weather yet" so the bugs, ants, and every other kind of insect, fleas, will be in the yard if I don't get them under control BEFORE they start.. Anyway, Lots of things I could do, and I need a cabinet, preferably with doors on it. I want to take all of my tools and such I have on two tables in my back bedroom, and get them organized into the cabinet, and off those tables... The room is a damned mess... and although it is my own "controlled chaos" (I KNOW where everything is) still it looks horrible, and I've got to go through some boxes of stuff and throw away some things... but I have so many "hand tools" like pliers, screwdrivers, my cordless drills, and nails and the list of "things" I keep and need the small stuff, just needs to be organized, and put away neatly so I can get that room painted, and get the window repaired that is still broken from hail over 2 YEARS ago,...
I fear anytime one of these bad winds will come, and it will knock out my "duct taped" window, and I will be up the creek - and mad because I have not fixed it yet... so I have MANY PROJECTS, like my writing, around the house, my advocacy stuff, and my lists go on and on, but my "motivation" is lacking right now.... I just cannot stand to "feel this way"... like I am kind of "lost" in my own sea of "stuff" and can't find which way to get my bearings and "sail" the path that I 1st need to, then go from there... I SWORE TO MYSELF after I got home from the hip fractures, I WOULD WRITE THIS NEXT BOOK... yet I continue to "not be able" to "begin" ... I almost feel like starting at the "back of the book" and work forward, rather than beginning and then coming to an end... the "latest" things to go in there are very fresh in my mind, thus the other stuff is already written down, but i must wade through all of it, and get it in some type of organized chaos, so it will half-assed make sense to whomever reads it...
I have my drums and keyboard, BUT the right leg, will be the one along with the right foot for the bass... and the type of exercise I would get from "banging" on the drums maybe actually good for my hip and foot... it may help to strengthen those muscles both in my upper leg and in the foot also... My crap with the writing also has to do with my shoulder, and neck... and actually my lower back also, and might as well admit it my hands and wrists... When I sit here for very long, typing etc. my shoulders, neck, wrists, fingers and lower back begin to just burn... from the impinged nerves... and now the RA has gotten to the place my thumbs, wrists, and portions between my fingers are swollen, and stiff and it hurts to type for very long... I THINK IT IS TIME FOR ME TO GET THE HECK OUT OF THE HOUSE OVERNIGHT, THEN GET MY NEW PUPPY... AND try to take all of the chaotic crap, I "feel" I need to do, and sit down to re-organize my priorities again... I've drifted again between those things I "want" to do, and those things I feel I NEED to do... and what lies in between is a bunch of stuff, that keeps me in knots half the time....
so I try to eat by about 8:30AM or so, but then by 2PM, which is too late to eat "lunch" because I eat dinner by about 5:45 for the most part, so I even made some of my own homemade granola... I have to get more stuff to go into it, but it turned out good, and this way I can keep out the nuts and stuff that my dentures just cannot take... I bought some "trail mix" and they have whole almonds in it, and even when I chopped them up more, I still cannot chew or bite on an almond, they are just too hard, and oddly enough, I like the "flavor" of almonds, but I am not crazy about the nuts themselves... I love walnuts, and they are a bit less hard, but I realized while I was looking for granola recipes, you can even put like Cheerios cereal in it, and other things I had not thought about... I used "brown sugar Splenda" in it and a little bit of honey... then put my favorite spices, allspice, cinnamon, cardamon, ginger, and nutmeg...
and I had a few dried dates, and I took the dried cranberries out of the trail mix, and they had some dried cherries in it... plus I put coconut in it before I put it in the oven... I want to get it a bit "chunkier" though... so probably more honey or brown sugar, so it will "stick together" a bit more... then I need to grab several of my favorite dried fruits to go in it, and those now are easy to find... anyway, I am just having a tough time trying to figure out where to "stick myself"... I came down with a sore throat the last couple of days, and I know everywhere in Ennis I go people are coughing and sneezing, and hoarse, and the flu, and some other viral stuff is going around, plus lots of people are suffering from pneumonia, which I HOPE that new vaccine I took early in the fall helps to keep me away from the pneumonia.. I had it like 2 or 3 years in a row, twice in both lungs, so I don't want any of that if I can stay the heck well. Besides if I come down with something like that it delays my possible new RA medication, and/or my neck surgery... and then this morning, for some odd reason, I was getting up off the sofa, and "hit" the nerve I guess going down my left leg...
I NEVER usually have issues with that side, but it burned and stung like I was on fire... so I am not sure, if I happened to have "rolled" on it getting up or if my lower back is acting up, but this time on my left side... when I've had kidney stones, my left side usually hurts worse than the right. So, I first thought oh crap, not a kidney stone... but it is more I think all weather related... my hip and right leg have hurt now for about 3 days or so... I even have been getting Peanut on his leash, and the days it is nice outside, we walk 4 or 5 times during the day.... he loves it ... and he got upset with me this morning. I had to go around to the back and get one of the smaller tree limbs that I need to get into the trash, plus I had a whole trash can full of limbs and tomorrow is trash day. I always try and bring the cans up to the side of my house, especially if we have bad weather, so I don't have to go around to the back if it is rainy or cold... so he was upset. I could not hold his leash, and try and bring the limb and the can up to the front... but I had him out for a little while to pick up the newspapers, and it is still damp outside... I figure it will either "cure me" or "kill me: as the saying goes, to get out and walk around for a bit...
I've got fire ants coming out again, so it is time to get the fire any granules out, but also time to spread the granules out I buy for spring and summer. I have to do it early as of now, since we have basically not "had any real winter weather yet" so the bugs, ants, and every other kind of insect, fleas, will be in the yard if I don't get them under control BEFORE they start.. Anyway, Lots of things I could do, and I need a cabinet, preferably with doors on it. I want to take all of my tools and such I have on two tables in my back bedroom, and get them organized into the cabinet, and off those tables... The room is a damned mess... and although it is my own "controlled chaos" (I KNOW where everything is) still it looks horrible, and I've got to go through some boxes of stuff and throw away some things... but I have so many "hand tools" like pliers, screwdrivers, my cordless drills, and nails and the list of "things" I keep and need the small stuff, just needs to be organized, and put away neatly so I can get that room painted, and get the window repaired that is still broken from hail over 2 YEARS ago,...
I fear anytime one of these bad winds will come, and it will knock out my "duct taped" window, and I will be up the creek - and mad because I have not fixed it yet... so I have MANY PROJECTS, like my writing, around the house, my advocacy stuff, and my lists go on and on, but my "motivation" is lacking right now.... I just cannot stand to "feel this way"... like I am kind of "lost" in my own sea of "stuff" and can't find which way to get my bearings and "sail" the path that I 1st need to, then go from there... I SWORE TO MYSELF after I got home from the hip fractures, I WOULD WRITE THIS NEXT BOOK... yet I continue to "not be able" to "begin" ... I almost feel like starting at the "back of the book" and work forward, rather than beginning and then coming to an end... the "latest" things to go in there are very fresh in my mind, thus the other stuff is already written down, but i must wade through all of it, and get it in some type of organized chaos, so it will half-assed make sense to whomever reads it...
I have my drums and keyboard, BUT the right leg, will be the one along with the right foot for the bass... and the type of exercise I would get from "banging" on the drums maybe actually good for my hip and foot... it may help to strengthen those muscles both in my upper leg and in the foot also... My crap with the writing also has to do with my shoulder, and neck... and actually my lower back also, and might as well admit it my hands and wrists... When I sit here for very long, typing etc. my shoulders, neck, wrists, fingers and lower back begin to just burn... from the impinged nerves... and now the RA has gotten to the place my thumbs, wrists, and portions between my fingers are swollen, and stiff and it hurts to type for very long... I THINK IT IS TIME FOR ME TO GET THE HECK OUT OF THE HOUSE OVERNIGHT, THEN GET MY NEW PUPPY... AND try to take all of the chaotic crap, I "feel" I need to do, and sit down to re-organize my priorities again... I've drifted again between those things I "want" to do, and those things I feel I NEED to do... and what lies in between is a bunch of stuff, that keeps me in knots half the time....
Saturday, February 11, 2017
Talking about our own Advocacy work, activism, the GOOD you TRULY DO, & What makes "us tick" - all of us differ one to the other... and Chronic Illnesses and pain can create and reek havoc on us, as well as age....
I have a "surprise" for everyone, but I wanted to wait until our newspaper publishes it here locally, then I will post it on Facebook, in my personal newspaper and on my blog. I have a "Press Release" from a project, that is really a vital program for research in many different realms of chronic illnesses and/or pain. I've participated two times so far, after they "found" me.
The 1st time, I guess we did not do a news release, but they have this time. I was so thrilled about it, because I always have to sign a NDA (non-disclosure affidavit) each year they ask me to do my part. I want to share it, not just because if it being "me" but MORE to show ALL OF YOU, HOW YOUR INPUT, YOUR ADVOCACY, WHETHER ONLINE, emails, a blog, Facebook, Twitter, or however you may help out when it comes to activism DOES MAKE A DIFFERENCE! I've done advocacy and activist items now for about 5 years, for different organizations and in different realms. Some of them, really in depth, like getting to go to Congress in Washington DC with the Arthritis Foundation, or posting blog articles, or my Facebook things that I read, post, and try to help provide viable and possible solutions for so many of us, that truly need to be helped, whether through knowledge (which believe me KNOWLEDGE IS POWER, ESPECIALLY WHEN IT COMES TO YOUR OWN HEALTH, ILLNESSES, PHYSICIANS, SURGERIES, and all types of medical needs we step into during life.) I found out that although "some doctors do not like "educated" patients' MANY OF THEM are extremely happy to see patients taking an initiative to reach out, look for answers, make lists, ask questions, and not sit back and just rely on what our physicians tell us.
LIFE and PATIENTS are too many and too busy, and our medical people NEED us to know all we can... so it saves lives, even our own. If you KNOW your medications, what you take, what you are allergic to, or have an idea about all of your medical issues, your surgeries and symptoms that are due to either a chronic medical illness such as RA or Lupus. Or if you are diabetic, you KNOW your own body, what you CAN eat, how to keep your blood sugar evened out, or other medications, know the side effects, understand when you NEED to call your doctor, OR when that side effect may not HURT you or even after a few days go away, rather than trying to call a doctor's office, and either stop the medication or go on taking it when something may not be right about it. I can almost go in when one of my joints, or my spine, or my muscles, or tendons (since MUSCLES CAN BE TIGHTENED BY EXERCISE) and TENDONS HAVE TO BE SURGICALLY REPAIRED OFTEN TIMES BECAUSE THEY DO NOT GET TIGHT AGAIN, LIKE A MUSCLE MIGHT...
That is why when you have a "torn rotator cuff" in a shoulder, you "may" strengthen the muscles, but if those "tendons" that make up the rotator cuff are too lax, or torn completely away from the bone itself, surgery may be the only option to get back mobility, strength, get rid of pain or much of it, and then strengthen the muscles after the tendons are repaired. You would be shocked and I know even ...
I recently began to totally "understand" the true difference between tendons and muscles. I "asked" the question, and my foot specialist explained it to me... like a rubber band may "stretch" like a muscle... but if it is attached to a board, and you actually tear it away from that board, no amount of exercise will give you back the loss from a tear. I now also realize WHY when someone TEARS TENDONS in their foot, or leg, it takes MONTHS AND MONTHS EVEN WITH SURGERY, to get that tendon "healed". It has to "attach" back to that bone. So, like my shoulders, or my left elbow the "severe tennis elbow" I had was "torn" away from the bone. My orthopedic surgeon attached the tendons back to my bones, with screws, nuts etc... BUT it took a long time for that tendon to actually "grow itself" back to the elbow, and often times, they don't attach back themselves, that is why, so often you never can do some of what you did with that shoulder, elbow, ankle, and so forth as you could at one time.
Before I broke the hip, I had just about made up my mind to try and snow ski one more time in my life. That used to be my "birthday present" the week of my birthday for many years.... but after the replaced knees, and the shoulder replacement, I felt maybe I should not chance "wrecking" one of them again. But, I had decided I would give it a try once more... and thought about making a trip to Santa Fe NM, I've skied there as well as Wolf Creek Pass that I LOVED!
But Santa Fe has lots of new courses, and much more to offer than they once did, and it is about 7 hours closer than Pagosa Springs, CO where you stay to ski Wolf Creek. But, once the hip was fractured, I then knew there would be no way I would try to ski... not really because of the break of the hip BUT a fear now since my bones are so severely taken away with osteoporosis, my fear would be to "break" more bones, or another hip, or injure my back worse, thus my days of skiing are over with. I have great memories... and in fact yesterday when I was going through looking for the photo's with the fish, deer etc... I started to scan a pic of me, when the "big hair" craze was in... Gosh I wished I still looked that young.... ;) Alas time has become somewhat of an enemy when it comes to skin, aging, and how our lines, wrinkles and so forth seem to develop out of nowhere.....
Friday, February 10, 2017
I was given a "press release" that I am very proud of ;)m- Goes to show ANY Advocacy Work is well worth doing especially for Chronic Pain and Illnesses
I've really been down and out lately at the numbers that are coming to my blog. Used to I would have at least 75-100 and sometimes 300 or over. But, over the past 4 months, even before I went into the hospital I noticed a huge drop in those coming to my blog.
I know "Google" have changed a great deal of their SEO stuff, BUT, I have many of their ideas and recommendations that I use. I've not went through the entire "book" of recommendations, BUT, I usually post everyday, sometimes more than once. I do miss sometimes, such as when I was "out of pocket" due to the hip fracture, but even then I still posted once I was feeling a bit better and had my laptop to post to all of my social media places.
The one thing that I have not done "much" and continue to try and not do, is get too deep into the "political" issues that are invading our lives DAILY! I know many are like myself and HOPED that AFTER THE ELECTION some of the DAILY CRAP WOULD STOP!
Well, I should have known much better than that. With the "Donald Duck" elected LOL, there is NO way to SHUT HIM UP NOR the NEWS. Everything he does, tweets, says, posts, and probably what he eats for his 3 meals a day are NOW LARGER ISSUES ON THE NEWS, THAN THE ELECTION!!!!!
I am SICK TO the point of NAUSEA hearing about "The Duck" this, that and the other.... I cannot even "type his name" it makes me so ill to see or hear about one damned thing he does.
I was a "voter" and I've voted for many years, without missing many. Of course I feel if we "vote" then we do have a right to GRIPE! But, for those WHO DO NOT VOTE, then you do not have the RIGHT TO FUSS because you did not allow YOUR VOICE TO BE HEARD!
I KNOW that my "typical" daily life may not interest you. thus I "try" my best, to put something useful, fun, information that you can use, new items from The Arthritis Foundation, to WEGO, to other health and human information especially for us that remain all too ill, from Chronic Pain and/or illnesses.
I am HAPPY that although I had TWO HIP FRACTURES, now in 3 days it will be 90 days since that 1st surgery, and I am doing very well. Even without a cane, and in fact, I left it at home yesterday and did not even take it with me.
I realize at times, I am still leery about being almost too cautious, in fear that another fall could even be worse. I also am in fear that if I don't try and do all I can to "never cure" the osteoporosis, BUT try and build "muscle" and "put protein" back into my body, I have a far better chance of not being a "fall victim".
The woman that was in the room at the Rehab place with me for part of the time, had already been in the hospital like 3 times BEFORE CHRISTMAS, IN LIKE 3 MONTHS! She had pneumonia a couple of times and was put in for that. She has also been a "Diabetes 1" victim since being a teenager, which I watched even after all these years, especially without a proper diet like she should have had in Rehab, she was always having way too many problems with her Diabetes. Then she had fallen and been in Rehab before Christmas I guess in August or September, then fell broke her pelvis, WHICH SURGERY OFTEN CANNOT REPAIR A BROKEN PELVIS, thus you have to spend WEEKS AND WEEKS IN BED TO ALLOW IT TO HEAL ON ITS OWN! Her pain had to be horrible. I know HOW MUCH PAIN I WAS IN WITH THE FRACTURES TO MY HIP, and I was yelling, screaming, cussing, bitching, crying and my entire neighborhood probably thought someone was attacking me, or I had just lost the rest of my mind. MANY of them came when they saw my son's vehicle here to ask what happened, that I was SCREAMING AND CRYING SO MUCH, they could not imagine what had happened. No one I guess heard me screaming and yelling and crying, while I was still in the house for over 3 hours, being too stubborn to call the ambulance. I "hoped" I had a "bad bruise" NOT a damned brake to my hip. But, alas dammit the news was worse, because I had TWO breaks in it.
I cannot begin to even express "ALL I LOST" in those weeks and weeks, through the surgery, through being an inpatient in a Rehab Center, from my own self-esteem, pride, I felt unworthy, useless, a burden, and just a totally screwed up person to be going through this and making my kids go through this also.
LOTS played into my issues with the entire thing, because of losing Mom to Lewy Bodies Dementia in June of last year, and having to take care of her, the 6 months prior, I was already more than behind on "caring for me"... I cancelled neck surgery at least 4 times, and just put my RA medication on hold, since I just felt I COULD NOT leave and go to Dallas for a few hours.
I AM STILL trying to "clean up" everything that needs to be done, and actually am totally confused, because I feel I did not "grieve" enough before trying to begin taking care of other affairs once she past away, that now I get to a place I am not sure what, what not, which, how, is done, not done, and my own "Christmas Present" to myself, is still sitting in my hallway, along with the new rug for my living room. But, now with the hip thing, I fear trying to turn the old sofa over in order to get the backs off of it. That is what has to be done, before it can be taken out of the house. Once that is gone, I can once again clean the hardwood floor very well, put the rug down and get my new sofa/futon/chaise lounge finally put up and using it.
So, NO the political issues I speak of are usually tied into "medical things".... whether clinical trials, or laws, or trying to get the government to fund certain research projects, and so forth, my "own personal beliefs" in whom should be or not be President, and so on down the agenda, I feel I did my part, I can now bitch all I want, AND then go on with my life and pray we have NO ALLIES by the time one YEAR has gone by with the "Donald Duck"....
P.S. I WILL POST THAT PRESS RELEASE AS SOON AS MY NEWSPAPER PUTS IT OUT.
Wednesday, February 1, 2017
Right Foot "diagnoses" and causing much of my stability issues on the right side, answers & hoping I continue to improve... Foot issues, Want the Neck Surgery done) and wanting to get some new RA medication
I went out for a 3rd time myself yesterday, and went to run a couple of errands, then went by Legend Oaks to visit the lady who was in the room with me a part of the time. Bless her heart, she had been in the hospital a couple of times before Christmas with pneumonia, and she has had Diabetes 1 since she was a teenager.
They were not really keeping it under control, and she was on several different types of insulin shots... and she was in there for a broken pelvis which COULD not be repaired by surgery. So, it takes much longer to heal on its own, when you have nothing there to try and help hold it in place and heal it. So, when I left I knew she would be in a couple more weeks at least. But, she has pneumonia NOW again, and it was bad yesterday when I went to see her. What makes it worse, is the woman they have in there now, I guess had a fractured hip etc... but she was a "chatter box"... had company running in and out, kept interrupting me as I tried to talk with Mary, and Mary looks really bad, she needs IV antibiotics with all she has going on.... I felt so badly for her, so I am going to see if there is anything I could take her with her having Diabetes 1 (and THEY DO NOT have a "diabetic" diet there, I thought that was stupid, with many patients having Diabetes) Anyway, everyone there could not believe how well I was doing... they were so pleased to see that I was back in my jeans, and clothing for town, and without a walker, and in fact, I carry the cane, especially in the stores, but I don't use it much here in the house.
The main thing making me UNSTABLE is my FOOT AND ANKLE. I was correct, I kept feeling like my hip was very stable but that right foot felt terribly unstable and I was having to watch it almost more than the hip. So, sure enough, I went to a foot and ankle specialist that is in the same office of my orthopedic surgeon that fixed my hip, and I was correct. Due to the severity of the sprain in June on that right ankle, and then I did catch and twist it the morning I fell. That is what made me fall. I've been thinking over that morning, and now I recall that foot "hanging" and when it twisted, that is when I fell so hard to the floor. So, that means torn ligaments/tendons and I am extremely flat-footed.
I had known that since I was very young. So, between the two, I have that type of "injury" (Posterior Tibial Tendon Dysfunction) or even a "Lisfranc) issue, but without a break so far they do not see any break, but of course my RA/Arthritis I know has a great deal to do with it, because the very 1st Rheumatologist I saw, X-rayed my feet and toes, and my toes "roll under" and are kind of crooked due to the RA. So, he put an "orthotic" in my shoes, to help with the flat feet, then put a steroid injection (WHICH HURT LIKE HELL) into that ankle and foot, and I am going to PT outpatient for a couple of weeks, 2 times a week, to let them teach me some exercises to try and strengthen those tendons and ligaments. I know that ankle has endured two very severe sprains, one when I was 40, then again last year, and before and in between it has always been very "unstable"... and that is exactly what he said, because I told him my hip feels stable, but the foot is what wants to "roll" or not be stable when I walk, which can be another cause for a fall.
Thus it has to be dealt with... so I am hoping between all of this I see some improvement. I know from others that foot surgery takes weeks and weeks to get over, especially the tendons and ligaments, and you wind up in a "boot" sometimes for months.. last thing I need. I need to see my Rheumy and have my neck surgery first... and pray the foot gets better with this other stuff.
They were not really keeping it under control, and she was on several different types of insulin shots... and she was in there for a broken pelvis which COULD not be repaired by surgery. So, it takes much longer to heal on its own, when you have nothing there to try and help hold it in place and heal it. So, when I left I knew she would be in a couple more weeks at least. But, she has pneumonia NOW again, and it was bad yesterday when I went to see her. What makes it worse, is the woman they have in there now, I guess had a fractured hip etc... but she was a "chatter box"... had company running in and out, kept interrupting me as I tried to talk with Mary, and Mary looks really bad, she needs IV antibiotics with all she has going on.... I felt so badly for her, so I am going to see if there is anything I could take her with her having Diabetes 1 (and THEY DO NOT have a "diabetic" diet there, I thought that was stupid, with many patients having Diabetes) Anyway, everyone there could not believe how well I was doing... they were so pleased to see that I was back in my jeans, and clothing for town, and without a walker, and in fact, I carry the cane, especially in the stores, but I don't use it much here in the house.
The main thing making me UNSTABLE is my FOOT AND ANKLE. I was correct, I kept feeling like my hip was very stable but that right foot felt terribly unstable and I was having to watch it almost more than the hip. So, sure enough, I went to a foot and ankle specialist that is in the same office of my orthopedic surgeon that fixed my hip, and I was correct. Due to the severity of the sprain in June on that right ankle, and then I did catch and twist it the morning I fell. That is what made me fall. I've been thinking over that morning, and now I recall that foot "hanging" and when it twisted, that is when I fell so hard to the floor. So, that means torn ligaments/tendons and I am extremely flat-footed.
I had known that since I was very young. So, between the two, I have that type of "injury" (Posterior Tibial Tendon Dysfunction) or even a "Lisfranc) issue, but without a break so far they do not see any break, but of course my RA/Arthritis I know has a great deal to do with it, because the very 1st Rheumatologist I saw, X-rayed my feet and toes, and my toes "roll under" and are kind of crooked due to the RA. So, he put an "orthotic" in my shoes, to help with the flat feet, then put a steroid injection (WHICH HURT LIKE HELL) into that ankle and foot, and I am going to PT outpatient for a couple of weeks, 2 times a week, to let them teach me some exercises to try and strengthen those tendons and ligaments. I know that ankle has endured two very severe sprains, one when I was 40, then again last year, and before and in between it has always been very "unstable"... and that is exactly what he said, because I told him my hip feels stable, but the foot is what wants to "roll" or not be stable when I walk, which can be another cause for a fall.
Thus it has to be dealt with... so I am hoping between all of this I see some improvement. I know from others that foot surgery takes weeks and weeks to get over, especially the tendons and ligaments, and you wind up in a "boot" sometimes for months.. last thing I need. I need to see my Rheumy and have my neck surgery first... and pray the foot gets better with this other stuff.
Friday, January 6, 2017
Fearing...Home...Falling Again...Loss..Bad Blood work...Grieving, and more.... So Many Questions - Looking for Answers
I can't "fuss" too much about the care I've received in both the hospital and now the Rehab Hospital. Thank Goodness, it is NOT anything like a nursing home!
Although they have "long term" patients, there are 4 "Halls" of which each serves a different type of patient. So, those that like myself, are trying to "rehab" so they can go home and be able to care for themselves, we are all in one hall.
The others are for Dementia/Alzheimer's patients, and those that are probably here for the rest of their days.
I really have not encountered much that I would say was "wrong".... I usually get my meds when I ask within a reasonable amount of time, even though there are times, they have patients coming to to be admitted, or things get crazy, and I may have to wait a bit, or remind them. Most of the time, the nurses are apologizing to me, because they were not "prompt" in getting me my pain, muscle relaxers and my diazepam in a timely manner.
I've been able to shower by myself the past two times, and I am getting around MUCH better this past 4 or 5 days. Enough so, I am READY TO GO THE HELL HOME, I am SO BORED WITH IT ALL NOW!
But, complications, like a huge hematoma, at the repair site on my hip, has caused a delay in getting the staples out, my liver functions are all high, and my anemia really was a very huge concern. So far, it appears after the 3 units of blood at the hospital were given to me, my red blood cell counts have gotten better, but I look for them to bottom out again, once I am not here and on the supplements, besides I still feel that I have pernicious anemia, which is an autoimmune illness, plus even the liver issues, probably have to do with Lupus and the RA, causing the issues with my red blood cells being so low.... etc....
I realize I face yet another surgery my neck surgery,if I can recover from the hip fractures (or actually WHEN I recover enough to go and have it done...plus my lower back has to be fixed also....my lower back and neck both were already needing surgery, then between trying to take care of Mom, and now the "jolt" from the fall, both are worse than ever.
ALL OF YOU, PLEASE stay with me!!!! I am certainly NOT giving up on my blog, my advocacy, writing and my other things I participate in so I can HELP OTHERS understand they are NOT alone.....
I am trying to find ways to increase my readers here on my blog, but I know I really need to make sure I have interesting and valuable information here for everyone, or all of you will get bored with it.
IF YOU have any ideas of what you may like to read, hear about, or have me talk about, PLEASE let me know. You can always email me at: ravishingrhia@gmail.com
Although they have "long term" patients, there are 4 "Halls" of which each serves a different type of patient. So, those that like myself, are trying to "rehab" so they can go home and be able to care for themselves, we are all in one hall.
The others are for Dementia/Alzheimer's patients, and those that are probably here for the rest of their days.
I really have not encountered much that I would say was "wrong".... I usually get my meds when I ask within a reasonable amount of time, even though there are times, they have patients coming to to be admitted, or things get crazy, and I may have to wait a bit, or remind them. Most of the time, the nurses are apologizing to me, because they were not "prompt" in getting me my pain, muscle relaxers and my diazepam in a timely manner.
I've been able to shower by myself the past two times, and I am getting around MUCH better this past 4 or 5 days. Enough so, I am READY TO GO THE HELL HOME, I am SO BORED WITH IT ALL NOW!
But, complications, like a huge hematoma, at the repair site on my hip, has caused a delay in getting the staples out, my liver functions are all high, and my anemia really was a very huge concern. So far, it appears after the 3 units of blood at the hospital were given to me, my red blood cell counts have gotten better, but I look for them to bottom out again, once I am not here and on the supplements, besides I still feel that I have pernicious anemia, which is an autoimmune illness, plus even the liver issues, probably have to do with Lupus and the RA, causing the issues with my red blood cells being so low.... etc....
I realize I face yet another surgery my neck surgery,if I can recover from the hip fractures (or actually WHEN I recover enough to go and have it done...plus my lower back has to be fixed also....my lower back and neck both were already needing surgery, then between trying to take care of Mom, and now the "jolt" from the fall, both are worse than ever.
ALL OF YOU, PLEASE stay with me!!!! I am certainly NOT giving up on my blog, my advocacy, writing and my other things I participate in so I can HELP OTHERS understand they are NOT alone.....
I am trying to find ways to increase my readers here on my blog, but I know I really need to make sure I have interesting and valuable information here for everyone, or all of you will get bored with it.
IF YOU have any ideas of what you may like to read, hear about, or have me talk about, PLEASE let me know. You can always email me at: ravishingrhia@gmail.com
Saturday, December 31, 2016
Hoping that 2017 "pushes" out all the grief, sadness and illness and brings peace, wellness and secuirty to myself and everyone!
I have been "quiet" - but I had more terrible stuff going on... Bubba my Chiweenie, got suddenly ill, and passed away in my arms night before last. All of the loss surrounding myself and my family is really taking its toll on all of us. I've had all kinds of complications, from the anemia, to a huge hematoma just where the surgery on my hip was done. I look "deformed" because that hip looks like it is 4 times bigger than it should look, then my liver enzymes and lab work was high and all messed up.
Then I still have this place on my right foot that I swear has to be fractured. I cannot stand to put any weight on it, which hinders my therapy for my hip. I just want things to get back to some kind of normal so I can go home. Even though everyone is extremely nice here, I don't want to stay one moment more than I have to. I had hoped I would be home by January 1st, but looks like that is not happening. My doctor wants to leave the staples in another 5 days or so, due to the large hematoma where the surgery and the staples are...
PT is going fine, other than me having such heck with that right foot. They re-x-rayed it last night, and the woman doing the X-rays showed them to me, and said she was not the doctor but it didn't appear to have a fracture, and she mentioned a bone spur... but I still insist that due to the pain, the "redness" where it hurts and the pain and swelling from it kind of around and down my foot, something is wrong, and they have not found it. Anyway, wishing everyone a Safe and Happy New Year's eve and Day... I hope is 2017 brings more happiness, peace, and security, and wellness for myself and everyone.... Rhia
Then I still have this place on my right foot that I swear has to be fractured. I cannot stand to put any weight on it, which hinders my therapy for my hip. I just want things to get back to some kind of normal so I can go home. Even though everyone is extremely nice here, I don't want to stay one moment more than I have to. I had hoped I would be home by January 1st, but looks like that is not happening. My doctor wants to leave the staples in another 5 days or so, due to the large hematoma where the surgery and the staples are...
PT is going fine, other than me having such heck with that right foot. They re-x-rayed it last night, and the woman doing the X-rays showed them to me, and said she was not the doctor but it didn't appear to have a fracture, and she mentioned a bone spur... but I still insist that due to the pain, the "redness" where it hurts and the pain and swelling from it kind of around and down my foot, something is wrong, and they have not found it. Anyway, wishing everyone a Safe and Happy New Year's eve and Day... I hope is 2017 brings more happiness, peace, and security, and wellness for myself and everyone.... Rhia
Thursday, December 29, 2016
How to Move forward with severa Systemic diseases, Lupus, Sjogren's, RA & knowing when everything feels so out of sorts, even with the New Year Upon me....
A piece of me feels as if I am blocking out all that we went through
with Mom, then losing her in June so suddenly. Then the ordeal of
paperwork, and all that happens even after the funeral is over.
Then I've went from one issue such as both ankles severely twisted, to sinusitis, to pneumonia, to Lupus flares, then to take such a horrible fall. and break my right hip in two places... to wind up being in the Rehab on Christmas, and maybe for awhile after the 1st of the year.
I just know that things have to get better. I am so terribly tired of being ill in one way or the other. I tried so hard to NOT allow this to happen to me. I knew my chances of a fall could lead to a break of a bone or joint. That is one of the very last things I wanted r needed. But, when I hit that hardwood floor two weeks ago the coming Tuesday, I knew it was not good.
I wanted to believe that it was bruised badly, yet when I could not drag it on the floor without screaming out in pain, I knew then it was bad.
I've been in a turmoil over the state our nation is in. Now with the "person" that is to be our new President, totally terrifies the hell out of me. I cannot fathom him having enough tact with out own Congress, much less any other nation.
I am having to almost "hide" my feelings this season. Here I see many families, together, excited about kids, Christmas, and this very special time of the year, yet I feel left in a "dark fog" wondering once again why I feel "punished", why did I have to take a fall as I did, and break a hip. And what are the chances that I wind up having another surgery if this hip does not work without an entire replacement since the osteoporosis could cause issues.
Frankly, this is one of the very 1st times I've been this worried about my own health issues. I watched my Grandmother and my Mom be able especially my Grandmother take care of themselves for YEARS alone. Now, I fear everything, from just getting out of the bed to going home. I've always been so bound and determined to do my stuff myself. Now, between the Lupus, the RA, the Osteoporosis, and now a broken hip, that I will lose some of my independence, which that thought bothers me badly.
The latest is I have a huge hematoma where the surgery was done on my hip. I knew it had been looking like a I had "2nd hip" and was sticking out but I just thought it was swelling. But when the nurse went to put a new dressing on it yesterday she found it was much more than swelling, and they took pics of it, and sent them to my doctor. Sure enough it is probably a huge hematoma, and they are putting ice packs on it 4 times daily, and I won't even get the staples out for another week.
My foot still hurts and I still think I have a hairline fracture in it. I guess I should ask for it to be X-Rayed again. I am just so sick of being poked and prodded on, I hate to say that anything hurts.
I have to wonder if anything in my life will ever become "normal" again?
Then I've went from one issue such as both ankles severely twisted, to sinusitis, to pneumonia, to Lupus flares, then to take such a horrible fall. and break my right hip in two places... to wind up being in the Rehab on Christmas, and maybe for awhile after the 1st of the year.
I just know that things have to get better. I am so terribly tired of being ill in one way or the other. I tried so hard to NOT allow this to happen to me. I knew my chances of a fall could lead to a break of a bone or joint. That is one of the very last things I wanted r needed. But, when I hit that hardwood floor two weeks ago the coming Tuesday, I knew it was not good.
I wanted to believe that it was bruised badly, yet when I could not drag it on the floor without screaming out in pain, I knew then it was bad.
I've been in a turmoil over the state our nation is in. Now with the "person" that is to be our new President, totally terrifies the hell out of me. I cannot fathom him having enough tact with out own Congress, much less any other nation.
I am having to almost "hide" my feelings this season. Here I see many families, together, excited about kids, Christmas, and this very special time of the year, yet I feel left in a "dark fog" wondering once again why I feel "punished", why did I have to take a fall as I did, and break a hip. And what are the chances that I wind up having another surgery if this hip does not work without an entire replacement since the osteoporosis could cause issues.
Frankly, this is one of the very 1st times I've been this worried about my own health issues. I watched my Grandmother and my Mom be able especially my Grandmother take care of themselves for YEARS alone. Now, I fear everything, from just getting out of the bed to going home. I've always been so bound and determined to do my stuff myself. Now, between the Lupus, the RA, the Osteoporosis, and now a broken hip, that I will lose some of my independence, which that thought bothers me badly.
The latest is I have a huge hematoma where the surgery was done on my hip. I knew it had been looking like a I had "2nd hip" and was sticking out but I just thought it was swelling. But when the nurse went to put a new dressing on it yesterday she found it was much more than swelling, and they took pics of it, and sent them to my doctor. Sure enough it is probably a huge hematoma, and they are putting ice packs on it 4 times daily, and I won't even get the staples out for another week.
My foot still hurts and I still think I have a hairline fracture in it. I guess I should ask for it to be X-Rayed again. I am just so sick of being poked and prodded on, I hate to say that anything hurts.
I have to wonder if anything in my life will ever become "normal" again?
Friday, December 9, 2016
WEGO Health Blog Challenge for Monday 28th, 2016 - 5 Challenges and 5 Victories
Challenges and Victories (the WEGO Blog Challenge from November for Monday 28th, 2016)
As many of us have faced, it always feels as if the challenges tend to stick out stay with us, rather than the victories. I feel that is more likely about "Human Nature". As humans we tend to "dwell" on the things that feel lousy to us.
2) Facing the tests, all the labs (my 1st go round with lab work, they took 18 TUBES of blood, I am a difficult stick anyway but had to go back 2 or 3 times because some of the blood did not get to the lab quickly enough and was ruined before those tests could be ran.
3) How many so-called "Rheumatologists" do NOT have the "same thoughts and mindset" on Lupus, RA, Sjogren's and all of the other Autoimmune disorders. I found that some did not deal with "ALL' but possibly only dealt with one or two of them. I also found out that MANY doctors (specialists) ONLY went by "blood tests". IF you did not have a "positive lab on RA for example) some of them really were not convinced there was a "sero-negative" RA. I went through at least 7 or 8 Rheumatologists BEFORE finally finding the Rheumatologist that fit my illnesses and needs.
4) Trying to "find" the right medications, then trying to get the doctors to allow me to try them, and the insurance to pay for them, and then finding that medication or medications that even worked for my particular symptoms.
5) Losing my own "caretaker", then becoming a caretaker twice, all the while letting my own illnesses, continue to deteriorate my joints, and body. After putting off surgeries, now I facing further degeneration of my cervical and lumbar spine. I've come to find out that losing all of my teeth, all of the joint replacements, surgeries, many of my other illnesses, are ALL due to the autoimmune diseases and medications also. It seems there are so MANY different health problems that can be caused by AI diseases and/or the medications.
1) Finally getting "diagnosed after MANY years of not one physician "getting" that it was Autoimmune related issues.
2) Becoming aware that I was able to take my illnesses, become a "voice", advocate, Ambassador, for some of these, and that my blog, writing, and my books; along with Social Media really gave me a chance to MAKE A DIFFERENCE!
3) Getting to go to Washington DC in 2014 with the Arthritis Foundation! That was a dream come true. All my life, I had said I wanted to stand on the White House steps, and TELL MY STORY! Basically that is what I truly was able to do. I was able to "tell Congress" what my own personal journey through hell and back was like.
4) Finding the ONE Rheumatologist who has helped me, along with my Primary Care Physician, who Thank goodness was the physician who actually "found" my Autoimmune Issues.
5) Continuing to be able to slowly but surely "move forward". At times these diseases are "dammit the hell" bad, and put me on the sofa for even a week or more. BUT, so far, I am able to put one foot in front of the other each day, and even though the pain, and all of what comes with these illnesses can get horrible, I so far am able to do some things myself, realize when I can't, and be "smart enough" to admit that I need help with certain things.
continuing with another "Victory"
For the most part, I feel "fortunate" to have somewhat of a "victory" over whatever happened to me in 2010, when I was so extremely ill and in the hospital for over 6 weeks having several surgeries, even a 2nd Heart Attack, yet survived to come home, take months to really "get better" and still be here right now to "tell about it"!!
As many of us have faced, it always feels as if the challenges tend to stick out stay with us, rather than the victories. I feel that is more likely about "Human Nature". As humans we tend to "dwell" on the things that feel lousy to us.
Challenges
As far as "Challenges - the 1st Challenge was truly facing the fact, I DID have not just ONE but "several" possible Autoimmune Illnesses, of which any or all, could cause all kinds of havoc in my life.
2) Facing the tests, all the labs (my 1st go round with lab work, they took 18 TUBES of blood, I am a difficult stick anyway but had to go back 2 or 3 times because some of the blood did not get to the lab quickly enough and was ruined before those tests could be ran.
3) How many so-called "Rheumatologists" do NOT have the "same thoughts and mindset" on Lupus, RA, Sjogren's and all of the other Autoimmune disorders. I found that some did not deal with "ALL' but possibly only dealt with one or two of them. I also found out that MANY doctors (specialists) ONLY went by "blood tests". IF you did not have a "positive lab on RA for example) some of them really were not convinced there was a "sero-negative" RA. I went through at least 7 or 8 Rheumatologists BEFORE finally finding the Rheumatologist that fit my illnesses and needs.
4) Trying to "find" the right medications, then trying to get the doctors to allow me to try them, and the insurance to pay for them, and then finding that medication or medications that even worked for my particular symptoms.
5) Losing my own "caretaker", then becoming a caretaker twice, all the while letting my own illnesses, continue to deteriorate my joints, and body. After putting off surgeries, now I facing further degeneration of my cervical and lumbar spine. I've come to find out that losing all of my teeth, all of the joint replacements, surgeries, many of my other illnesses, are ALL due to the autoimmune diseases and medications also. It seems there are so MANY different health problems that can be caused by AI diseases and/or the medications.
Victories
1) Finally getting "diagnosed after MANY years of not one physician "getting" that it was Autoimmune related issues.
2) Becoming aware that I was able to take my illnesses, become a "voice", advocate, Ambassador, for some of these, and that my blog, writing, and my books; along with Social Media really gave me a chance to MAKE A DIFFERENCE!
3) Getting to go to Washington DC in 2014 with the Arthritis Foundation! That was a dream come true. All my life, I had said I wanted to stand on the White House steps, and TELL MY STORY! Basically that is what I truly was able to do. I was able to "tell Congress" what my own personal journey through hell and back was like.
4) Finding the ONE Rheumatologist who has helped me, along with my Primary Care Physician, who Thank goodness was the physician who actually "found" my Autoimmune Issues.
5) Continuing to be able to slowly but surely "move forward". At times these diseases are "dammit the hell" bad, and put me on the sofa for even a week or more. BUT, so far, I am able to put one foot in front of the other each day, and even though the pain, and all of what comes with these illnesses can get horrible, I so far am able to do some things myself, realize when I can't, and be "smart enough" to admit that I need help with certain things.
continuing with another "Victory"
For the most part, I feel "fortunate" to have somewhat of a "victory" over whatever happened to me in 2010, when I was so extremely ill and in the hospital for over 6 weeks having several surgeries, even a 2nd Heart Attack, yet survived to come home, take months to really "get better" and still be here right now to "tell about it"!!
Wednesday, December 7, 2016
When Lupus, RA, & Osteoporosis is taking over Trying to Feel Like Catching Up on my Own Health Issues, Surgery Upcoming on my Cervical Spine and Lumbar spine soon, and everything else that "can happen, will happen" to me
I have been gone for the most part off and on, and also doing a great deal of stuff around the house the past several weeks.
I have also been battling being ill myself, not knowing whether it's been another flare with the Lupus and RA, or everything else, from a stomach bug, to allergies, and this ever changing weather is NOT helping us either. So, rather than go through the entire ordeal, yes, I've been under the weather since before Thanksgiving, off and on, with a probable Lupus flare, but my cervical spine issues, and my lumbar/sacral spine problems have came to the place I can no longer put off surgery.
SO, FINALLY YESTERDAY, I did go to Dallas, to my Orthopedic Specialist, to tell him what has been going on, and that I've developed "more symptoms and problems, especially when I was having to take care of Mom, I had done something back then, and also outside trimming trees etc, that BOTH my neck and my lower back need HELP! "HOPEFULLY" HE WILL be able to get me in there, scheduled and get one of the surgeries done before the end of the the year.
Not that I am looking forward to holidays and surgery, but before all of the new year deductibles and so on roll over for insurance, I feel now is the time to get at least ONE done, and then face the other early next year. I know he thinks we need another CT Scan and I wanted to tell him NO, because I've have way too many, they are expensive, he SAW my NECK DAMAGE ON A REGULAR X-RAY last time I was in there, but I also know due to insurance and their bull, plus he can see if here is NEW damage and be prepared with the right things he needs in surgery to "repair" whatever all is there, so wish me luck.
I do not like the WEATHER BUT we have been fortunate up until now NOT to have horrible weather as far as cold, dreary mess, and that makes it harder to have to go to Dallas for surgery, and then get home. I am hoping my son will be able to take me, and he said that he is now where he can take me, so if not I maybe calling on one of my close friends to take me up and get the surgery done. It will be one that I should go home that same day, IF it goes as planned and he does not run into further complications once he is in there and can tell what all is happening. I will keep you posted as I can and let you all know what is happening.... Rhia
Sunday, November 20, 2016
Shout Out Tuesday! (I missed!) sharing the love to those Health Activists that Truly give me a "hand and foot up" when I need it the most! (TUESDAY 15th ,2016)
TUESDAY 15TH - WEGO BLOGGERS ANNUAL EVENT - shout out Tuesday to some of my great people in the HA and friends world!
I must thank Laura Keivel with the Arthritis Foundation. She has helped me and continues to help me get through some of the very tough times these illnesses , and life can throw us in. From all of my own health issues, to Jim's accident while I was at the Summit with them in DC in 2014, Laura has been right there, helping me in any way she can as a mentor, a friend, and giving me advice to make me feel like I can still "charge through these things" and bring my activism and writing back on tract. Laura, you are just a true angel.
Barby Ingle and I got to know one another through chronic pain, and also with her writing, her testimony and advocacy skills, and also someone who can be so ill and in the hospital yet bounce back and be on the road again, never allowing the pain and chronic illness steal away her "show" through her goals, Barbe Ingle, you are an inspiration.
Kerri Fabert I met during my 1st Summit in 2014, She lives about a bit over an hour away from me, and has Sjogren's that now is effecting her sight even worse than ever. Yet, again, she is a loving wife, Mom, and works in the medical field, as well as does the Jingle Bell Run, and other events to help get the word out about autoimmune illnesses and yet how we can ALL can contribute in one way or the other, Kerri THANK YOU FOR ALL OF YOUR KIND WORDS and being a role model in so many ways, activism, being a fantastic Mom, Wife, and friend.
WEGO Health has SEVERAL INCREDIBLE PEOPLE, that always are there to answer my questions, and listen when I need an ear to "bend". Susan Mees, Danielle Schroth, who is Community director and also works with Cure Ckick, helps to make Cure Click something that everyone can do to help spread the word about Clinical Trials. I am so proud to be a part of Cure Click!
Pam Gill, from the more "local" part of the Arthritis Foundation, I met at the 2014 Summit, is just a sweetheart. She is a huge advisor for our District in this Central portion of Texas, and keeps everyone up and going' excited about all of the activities, from the National, to the State and Local parts of the AF. Thanks Pam for being a great friend and even though we don't speak much, I always know I can email you for guidance and help.
KRISTEN AT WEGO is such an upbeat and sweet young woman! She is always giving up hope, encouragement, and reasons why she feels "we" are what makes "WEGO" work! - "the patients"!
Gosh, then there is Laurel, Jackie, and so many at WEGO Health, that I am so thrilled to be in touch with from time to time. Everyone At WEGO are just wonderful people, and I feel blessed to be a part of the patient team.
There are so many more of you that give me hope, lift me up, and give me the strength to move on, even when I feel I am not make enough of a contribution,
Clarissa Shepard who has a huge following on her Facebook group about FM, and the illnesses that go along with them. Clarissa is also a dear sweet lady and friend, who is there when you need her, and works herself day and night keeping up with all of the information about FM, and the other illnesses that go along with that fight, Much like other autoimmune illnesses, Fibromyalgia, is yet another one of those mystery illnesses that we still have a very long way to go before we understand the issues surrounding this horrid "disease". I appreciate you Clarissa and thank you for your hard work and friendship.
This is hard to do because I know I am missing many... but know ALL of you are in my heart, and I am so elated and feel honored to know each of you in all ways....
Friday, November 18, 2016
Throwback Thursday! WEGO BLOG #HAWMC a "phost" from the past? (Christmas Eve 2014)
WEGO HEALTH Bloggers Challenge for 2016 - 'Throwback Thursday" One of my blogs from the past and why I picked it to go back and "share" it again.
Many of you know how "messed, mixed, and flat horrid most of my year in 2014 was. This post explains a great deal of what went on, and why 2014 had an incredible start, I got to go to Washington DC for the Arthritis Foundations Annual Summit and although I had been down with a severe Lupus Flare, I had been to our Urgent Care the Friday before I was to leave and the doctor who knew a great deal about Lupus, since he suffers from it also, gave me enough corticosteroids for a horse I think (LOL, well not quite that much but enough to make me feel like I was brand new by the morning at 4AM I left for DFW Airport, for the flight to DC!
Little did I know what would happen that last day of the Summit March 26th, 2014. A horrendous nightmare of an event, that forevermore changed my entire life. There are days it still effects me, even now. So, here is the post from then:
http://www.autoimmunearthriticsystemiclife.com/2014/12/christmas-eve-2014.html
Then, thinking I would "start new" for 2016, only to become, someone without their own caretaker, that became a "caretaker" for my own Mom, who up until January 2016, had been in pretty good health. Little did we know what awaited us the first 6 months of this year...
Monday, November 14, 2016
WEGO Bloggers Challenge for Sunday November 13th - "One of the "BEST THINGS THAT Happened this past week?"
November 13th, 2016 WEGO Health Bloggers Challenge for Friday - "Finding the "good" from this past week"
I seem to not have "many good things" as of this past about a year. So, when those time come along, they are certainly not taken for granted, and I try and hold on to that good memory, so I can get through all of the circumstances of pain, burn out, and pure life's grief it can give to us....
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I have a great deal more to do, but I got some of that cut up and put out for the trash collectors this morning, Now the larger limbs I have left I have to get cut down small enough so they will pick those up.
I also made a decision (FINALLY) to order a new area rug for my living room and have my eye on a sofa that will be high enough ff the ground the dogs will no longer be able to have their "peeing contests" when they get mad, and soil the carpet OR the sofa.
I am hurting from head to toe, I am hoping to have my neck surgery done in December, and try to help stop this pain. It is another reason that I am not keeping up with my blogging and writing, I am in so much pain, on my right side, shoulders,hand,wrists, swelling, now a lump at my thumb, and I am hoping that they put me on Xeljanz, because the MTX for one is NOT working, and for 2, I am having side effects again from it...
So, there is what I considered "good bits and pieces" of my week, last week.
Sunday, November 6, 2016
Day 4 - #HAWMC WEGO Health Writer's Blog Challenge - for the Month of November 2016
Day 4 - #HAWMC - A Letter to "Myself" at the time I was diagnosed knowing now what I did not know then....
Dear Rhia (self),
You had already "figured out" that something must be wrong with your immune system. You had been through enough doctors, tests, had so many symptoms resembling Lupus, RA, and several others like Sjogren's and Raynaud's that you really did not know much about.
When the 1st round of labs came back, from my own PCP (who diagnosed me at first), he knew that you needed to see a specialist. Although you come to find out your PCP has been more beneficial with the Lupus and Lupus Flares, that the Rheumatologist, who concentrates more on the RA than the other Autoimmune diseases.
You now can recall the first Rheumatologist, even though he was quite elderly, had just came back to work after a stroke himself, but his diagnosis, just after a thorough examination gave proof enough to show not only did I show signs of Lupus, RA, Raynaud's, Sjogren's, but had findings of probable MCTD, and that was almost more frightening than the Lupus and the others.
My moments that now I wished I had realized that ALL RHEUMY"S are NOT THE SAME, is something I wished I knew when I was first diagnosed. That caused me going through at least 7 specialists, each of which had a different "edge" and look on my diseases, or lack thereof. Most of them were only "blood work" driven. Not anything to do with all of the symptoms I had for years and years.
I could have saved myself a great deal of stress, worry, and getting nowhere, had I known to search for the "proper" Rheumatologist from the beginning. I've also come to find out my doctors here at my local Urgent Care know more about my conditions, than my Rheumy's for the most part. Plus if I am in a severe flare, there is no way I could get into my Rheumy in Dallas quickly. With those at Urgent Care I can be in and out, have the medications I need, and be hopefully on the road to curving the flare, without having to drive 40 miles each way, and maybe not getting what I need.
When I found out that I had 2 or 3 other 1st cousins, all on my Mom's side with RA, then we each began to piece together that this could very well be "genetic".
I wished I had known more about Sjogren's, for one. Maybe had one doctor done more about the Sjogrnen's I would not have lost ALL OF MY TEETH WITHIN A COUPLE OF MONTHS, requiring severe pain, and many dentists visits, to have all of them pulled that were left, and then try to deal with dentures, and the expense of over 15,000.00! Now I am still left with "pretty straight" teeth, BUT "fake" in nature.
So, I also wished I had more knowledge of how I could have been a volunteer and advocate before I myself had been diagnosed. I think had I been involved in some ways with the organizations who help us I may have felt "better" about myself, and not so ashamed of what these illnesses can do to us, our minds, bodies and souls... plus relationships, friendships, and the way people "see" us after we are ill.
#HAWMC
WEGO HEALTH
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I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...