Hopping Over the Hurdles of a small town, with no shuttle to Dallas to get there for surgery more on the Horrors of Dementia & A Parent

This may sound like a ridiculous question to many people, but what do people do like myself, that live in a small town, and have no really "close" relatives, and need to be taken to somewhere like Dallas to have surgery, or a procedure done, yet they don't have a "spouse", or anyone they can call upon to do so? Sure, if I lived in Dallas, I could probably find some type of shuttle service, or at the very least take a Taxi, etc.... but unless I am just not informed, I gather there is no type of shuttle here in our community that does that type of thing? So, are there people out there that will do something such as that, drive a person for a day surgery, or for a test of some type, or to a doctors office, that for some reason they are not able to drive themselves? We must have someone around here that does that and charges a certain amount to take you and bring you back home. My son can't get off work, due to him having been off himself for an arm injury so he can't get off this next week on Wednesday, of course my daughter is 8 hours away, my Mom, well even if she was OKAY, Mom could not even drive me across town when I had double pneumonia a couple of years ago to Urgent Care...

I was "too sick" to drive alone, so she came over, and I had to drive us there, and then drive myself back home, and I have no other "relatives" or people that can do something such as that. I guess it would be something someone in our area should consider. Because there has to be more people than myself that wind up in this situation. And of course even if I "felt like" I could drive home, there is no way, no how my surgeon would ever, every agree to that, especially it being neck surgery, and I will have a cervical collar on... Any thoughts from any of you? I know there is "Uber" in the larger cities, but I am sure we don't have anyone here that would drive anyone from Ennis to Dallas and then back to Ennis.... I've just about taken all I can...

I've put this surgery off, and thus that means my lower surgery has been put off also, and now my fingers are numb all the time, I can barely turn my head, and my lower back and legs continue to hurt like hell... I guess I am going to have to go and have my pain pump medication increased, which I did not want to do.... and then like today, I go to the market for Mom, I take food over for her to choose what she can eat, well, she never said a word, just mumbled a couple of times, "nothing" I guess it what she said... so I put stuff up, cleaned out the fridge, took out the trash, put up the clothes in the dryer, happened to have ran into the gentleman that does my Mom's lawn work, and found out she did no pay him from last time, so I told him to go ahead and cut the yard again, and I had to pay him for that... then I had to fold laundry, get her medications together for the next week, pick up her scripts from the pharmacy, clean up what she had left out give her a new glass of something to drink, take her an Ensure that was cold, and by that time, I went in 3 or 4 times, and she never said a word...

I had asked like 3 or 4 times about eating... so when I finished, I gathered up my stuff, and just came home. I am totally exhausted, and I got to thinking, I am a main, a cook, a grocery shopper, a car detailer, a trash person, I do laundry, I "exterminate" for ants, I vacuum, dust, sweep, fix her meds, make sure she takes her meds ... and the list just goes on and on,.. a bill payer... an accountant... chief, cook and bottle washer... and you know what... I am totally exhausted.... so I am headed to the sofa to watch a movie, and then will get dinner ready here in a bit... I am just so disenchanted with it all... and I "watch" and see everyone else "living their lives"... and mine seems to "not be of my own"....


Alas, I am just going to have to postpone it again, and I know my Orthopedics Surgeon's office is going to throw a fit. I've had to postpone it twice myself already, and he postponed it once due to some thing that came up for him. So, they also at times suddenly postpone at the last minute. But, I am just going to have to let his assistant know that this time rather than trying to "reschedule" in a month or two weeks etc... to wait, and I will call them back to reschedule once I can "set in stone" find someone to take me to have the surgery and bring me back. I do not want to do this again. It is difficult on them, and it is difficult on me, to feel "rushed and in a panic trying to find someone"...I even looked up in our area some type of "shuttle" service that may take me up there. I know my neighbor across the street goes in a shuttle frequently, but she is on dialysis, and I think they may take her to Dallas, but just a certain area. 

The only one here I can find, just does a shuttle in our county, and if I lived up in DeSoto or in that area, then the Star Transit could take me, but that is about 20 miles away... Anyway, I am going to have to make some very difficult decisions this week about Mother anyway. I am sick this morning, and the weather here is horrible. We were supposed to be "sunny" and no chance of rain... LOL... what a joke, the thunder and lightening woke me up around 6AM, and it is raining, and we have an electrical storm over us still. It is just a terrible day out there right now... I had to get the trash out to the curb and I HATE LIGHTENING... it struck my car one year while we were driving in an unexpected storm on a major highway, and it hit the antenna of our car, knocked it off and it literally FLEW over an 18 wheel tractor trailer, and it "stopped" the brain of my car! We were in a brand new car with dealer plates still on it! 

But it "reset" itself after about 15 minutes or so on the side of the road, but that was one of those "spring storms" that came up so suddenly we did not even have time to find shelter... we were fortunate enough to get under on overpass and had a truck driver in front of us and in back of us... and a tornado literally passed within a quarter mile or less right in front of us over the highway!!!! Cars were stopped for miles on both sides of I-35! It was a total nightmare! So, I am not a "fan" of any type of electrical storm or hail. I've had a roof ruined by that, windows knocked out in fact I still have a window that desperately needs to be replaced because it is just barely holding in with cardboard and duct tape now! But, I need someone to help hold the pane in place so I can get the "pins" in it to hold the glass in so I can put the glazing around it.... so again, until I can find someone to help, I am "SOL" as the saying goes....

 I was so totally upset over this past weekend, between Mom and some of the crap she pulled and said to me, and between not having any way to get to have my surgery, and my neck is getting worse... yesterday my fingers went to "sleep" on both hands and were burning and stinging, then by the time I got through the market, and got what I needed and picked up Mom's stuff, hauled it in her house, put that away, folded clothes and done everything there, put all of her trash out etc... then came home and had to put all of my stuff up, my hips and legs hurt so badly I wanted to cry! Now this morning, I woke up with a sore throat, and my glands are swollen under my neck worse on the left side... so I hope I don't have another infection...

I went over there this morning. She was "up" standing in her living room. No cane, no walker, and no emergency cell phone on her... so if she fell, there would be no way for her to contact me or anyone. So, I asked her what she was doing... and she mumbled "straightening" things up... and I just commented, well Mom everything should be pretty well straight.Then I went through the "laundry" list of things I did. I asked her if she had eaten... her reply of course was "No"... I went to put up some drinks I had gotten her, and there were items again in the fridge that did not belong, and she was just "fiddling" around with things, not really doing anything. 

I went and got her medication, put it in a small little cup, laid it on the table, and mentioned she did not eat yesterday and she replied, NO one brought me anything!...Okay, there I had been there the day before, brought in all of the groceries, asked her numerous times to eat or what she wanted, and I either got no reply or just a "no"... so I explained that I did come, and she did not want to eat, and she said I don't recall anyone being here... and I could tell, she was in "one of those moods"... so I finished putting up the drinks, and told her, her medications were on the table... and I said I see you must have things under control, so I am going home... and she looked at me and said. YOU have NO HOME!!

 I TURNED and replied Well, I guess I do, and that is exactly where I am headed... call me if you need anything. So, I shut the door and left. I am not feeling well today, I woke up with swollen glands under my neck, and a sore throat and the weather is cool today, and I was not about to stand there and allow her to "belittle" all of what I've done, since she just cannot recall what those things are... I called off my surgery and will reschedule a bit later in a month or so, once some things are not so messed up... but for now, as I told my doctor's assistant, until I can get a firm "way" there and back to Dallas for the surgery, and get someone to watch after Mom or see where all of this goes in the coming weeks, I did not want to reschedule, and then find out something is amiss again... Anyway, I am headed for the sofa... I just don't feel very well, and I just need the rest. I sure as heck cannot afford to come down with a "flare" or some type of infection right now.

Sjogren's and Just How We Lack Professionals in the Medical Field that truly Understand all of what Sjogren's can do....

Such an important thing - there is certainly NOT enough education, even with the medical professionals when it comes to Sjogren's. I in fact even after trying everything in my power to fight the autoimmune illness, lost ALL of my teeth to Sjogren's. It was a very hard ordeal to go through and even today, it remains something I feel "odd" about,although my dentures are very pretty. But, each and every one of my teeth were "eaten" from the inside out, and no signs of Sjogrens appeared to be causing issues, until suddenly I had 3 or 4 teeth completely break off at the gum line. I went in to see my dentist, who actually sent me to another dentist due to my own having also issues with horrible arthritis that is not allowing him to do nearly as much dental work. He had been a dentist here locally for gosh 30 plus I am sure... anyway, I was given a "full round" scan... and inside just about every tooth, you could see that basically all I had was a "shell" left... thus after over a year of pulling them all, and allowing all of that to heal, along with a couple of dry sockets, then one of the tiny cartilage bones between my maxillary sinus passage was  pulled and thus a tiny hole that they call a "communication" happened. This I had to have that "repaired" two times, then allow it to completely heal over before I had the final teeth removed, and the dentures put in place. After that, I had to wait another almost 3 months for the bone and all to heal. Then I had the "mini implants" put on the bottom dentures to hold them in place... besides all of the time... the COST is ASTRONOMICAL!!! And even though it was caused by a "medical illness" I could never get a dime out of my insurance for any of it... just insanity... and at the very LEAST that type of thing is in the ballpark range of $12,000.00 and usually much more depending on which dentist and what your complications and so forth could be...

Here is an article that gives some answers to questions about Sjogren's...

http://www.niams.nih.gov/Health_Info/Sjogrens_Syndrome/default.asp?WT.mc_id=social_niamstwitter

How DO You Deal with Doctor's Offices, especially the Nurses and Staff When they just REFUSE to HELP YOU get proper care

It it to the point we sometimes must question "why" our doctors, dentists, an other medical professionals get into the business of "patient care". My family has had several events over the past month, and 99 percent of it all, is due to "lack of doing their job properly"! Of course we had the horrible weather in the area for several days over a couple of weeks prior, but all of that has been behind us since last Friday at the very least. I had to make the TWO trips to Dallas, two days in a row, because my internal pain pump, although "refilled" seemed to not have been "updated" properly. Thus it was not set correctly to give the proper dose of medication and so forth. I had to drive like a bat out of heck... trying to NOT get a ticket, because they were closing early that day, and I had to have it done, due to the fact they were not going to be there from like a Friday to the following Monday. So, I through my teeth in, jumped into some jeans and a shirt and headed that way. Well, I got there within about 45 minutes. Traffic happened to have been good at the time. I told the receptionist I was there, and to let the woman that would get this resolved I was there. Well, they had a waiting room full, but they were coming and going pretty quickly. The nurse came out at least 6 times, and I was sitting in the chair RIGHT BESIDE the door to the inside offices! So, there was no way she could miss me. So, over an hour passed and they were almost ready to go to lunch! Finally the nurse comes out and says, "Gosh I didn't see you!" WE thought you had not made it yet.... duh!!! Really!? So, I go in finally, get that done, and was back on my way home... but rather than being a couple of hours, it was more like 4 since the receptionist never told the woman in the back.
So, the week before that is when we had all of the really terrible snow, ice, sleet, especially in the Dallas area. Many offices including that doctors office was closed off and on during that week, and then the next also... but I had called my medication in - giving them PLENTY of time BEFORE the weather got too bad, to send the script over to the specialty pharmacy so they could get it out in priority mail. That would have came in within a day or two at the latest. Well, I never heard back, and this was like 3 days after leaving messages both with the doctors office and the pharmacy. When I would call the doctors office, all I got was recordings. Yet, they never mentioned they were out due to weather, no one ever called any patients... they just "assumed" we as patients would either "not come in" for appts, etc. Talk about nuts!!! Some people travel several hours away to see him... and to think I go and it takes about an hour... and that is bad enough... so this was like a Wednesday. I called through Friday and never got a soul on the phone, and no one answered any of my messages. On Monday, I call, and leave word again. I had checked with the pharmacy and they had not received a script yet. Then, they were the ones who first told me that the doctors office had been closed off and on for several days, and didn't get many of the scripts out! So, I call AGAIN the following WEDNESDAY, a week later (and I was to run out of medication on that Sat/Sun BEFORE) and finally I get someone to call me, and tell me "Oh it is not your fault, we just weren't open due to the weather"... no duh? Really!!? And not one person thought to try and get a list of patients and call them... it is just nuts... It took a over a week, several phone calls later, and I finally got my medication. So, last week Jim's monthly visit and to pick up scripts was supposed to be I believe Wednesday. Well, he calls because that was the day here the weather was horrible. Snow, Ice, Sleet... both here and Dallas were no place to drive... so he tries to call them and again, no answer, no message saying a word about being open, closed, etc... nothing... it is NOW Wednesday! They promised him last Friday they would mail his scripts to us, and set his appt up for later in the month. We asked them to at least send it priority mail, and oh no they didn't want to be put out that much, and besides they had told us they would be open last Friday afternoon (they usually close on Friday at lunch and only work half a day) so we asked if we could drive up and get the scripts... well NO they were NOT going to stay open Friday afternoon after all... they changed their minds. Okay, well Jim is running out of meds, and they promise they will go out Friday, and we should get the scripts if not Saturday, by Monday at the latest. YESTERDAY!!!! Tuesday! NO SCRIPTS!!!! NaDA! He calls, and the nurse tells him, well we mailed them on Friday, but we think the mail man didn't pick them up until Saturday!!!!!!! You have got to be kidding me!? So, we shall see once again a WEEK later than this should be, actually more than that for him... but those scripts better arrive.... this is insanity.... and if they would have DONE THEIR JOB right away, like with mine... I would have had my medication right on time, no problems... and so would Jim... but it is like they just don't care! Well, if you "hate" your job, or just don't want to do it, and don't care that people can get extremely ill, wind up in the ER, suffer needless pain... for more than just a day...or more than once.... but several times.. and each time I gripe (because it is usually ONE of the nurses that pulls this and we know it) - she does it I think for spite... yet even though I had been told she was being "replaced" that was months and months ago... and she is STILL doing the same thing.... It sucks....


PLUS>>> I can guarantee you, this doctors office has all kinds of signs posted about "what they will and will NOT do" if you don't make an appt on time, or don't call in ahead to cancel, or whatever... they will charge either an entire VISIT, or they may deny you medications, until you "reschedule" AND come in for the visit. Even if you are 10 minutes LATE (usually I am on time, but I have had to call and let them know I am stuck in traffic)... and all kinds of if's, and or but.... if the "patient" does NOT comply!

What about the PATIENTS TIME?! When you go to a physician, especially out of town, that is YOUR time... you get there, you are on time, and then you sit and wait for 5 hours! I've seen it happen to us even right here at our PCP office! He would be hours late, keeping you sitting in a cold cramped room, not even have a nurse to come in and say why.... but that is supposed to be OKAY?! OUR time is just as important as their time... we also have family, jobs, other schedules and appts. in our daily lives also.... it has always been beyond me to see some of the ridiculous stuff the medical profession will state to "patients"... yet it seems we have no "recourse"... if it happens to us....

Another great example just recently for me again. I called my dentist office LAST WEEK! I wanted to make sure I had the "dollar amount" right to finish up my "mini implanted" pins for the bottom dentures. I have the "treatment plan" that was initially drawn up BY THE DENTIST HIMSELF! We in fact, due to "HIS" mistake, paid for 11 MORE TEETH at $147.00 EACH to be pulled after my dentures came in and all of the back teeth were gone! By then, I had no choice! I couldn't just walk away and say forget it. Here are my full set of dentures, that I have to have... already have paid thousands out of pocket to get this far... and yet even though HE LEFT THAT OFF THE TREATMENT PLAN - about CHARGING for EACH TOOTH left in front when my dentures came in!!! I could NOT get them to come down, to give us a break on the price... you add it up $147.00 x 11!!!! NOt Cheap and WELL ABOVE AND BEYOND what I "agreed" to when I signed that treatment plan..of course they "had me over a barrel" by then! If I went somewhere else, I am not sure any other dentist would have touched me since this other one had so far done all of the work!PLUS my new dentures were sitting there, that gosh cost (just themselves) almost $3,000.00!!! And they can't be in unless the rest of those teeth are out! So? I am stuck, whichever way I turn... thus again, they get their way...

So, before the dentures were put in and while he was pulling some of my top molars, a piece of "bone" between my maxillary sinus PASSAGE and MY MOUTH!!! I WOULD GO TO RINSE MY mouth out and WATER would pour out of my nose!!! So, I called, went in and he felt like it would "close itself" off. So, I was put on another month worth of antibiotics, and we "hoped" it would seal itself off. Now, this is also where he had to "split my gums" and then they were sewn back together, and he removed stitches 10 days later... so it was "sealed" with sutures initially.

Well, weeks went by, and nothing stopped. Same thing, between the "air" I could hear coming in and out, and the "feeling" of water from my mouth, to the sinus cavity, to my nose... it kept happening. We waited about 8 weeks, and he decided to go another procedure, to close it off. It was called a "buccal" flap (and here is a very good look at what the heck was going on and can lead to scar tissue in the sinus passage etc...  http://www.surgical-dentistry.info/files/Closure_of_OAF_with_buccal_flap.jpg

So, I went through that and believe me, he gave me "gas" BUT THAT DID NOTHING!! This was a painful scary process sitting in a dentist chair. Honestly, at that time when I think about it, he should have immediately sent me to a "true trained ORAL SURGEON)... one that could have at least given me "twilight" or something... it was nuts... But I went through it...

again stitches, and again taken out 7 to 10 days later... well guess what??? Nothing closed... EVEN WITH my new dentures in, covering it over... (now this had been like 4 months at least) and it didn't fix it..

Well, next is a "bone implant or graft".... and he was sending me to what I thought was an M.D. - a "true oral surgeon" like that can put you to sleep in an "OR" setting... I went and had my wisdom teeth cut out at 19 years old at the Baylor Dental College, and the head Oral Surgeon did my surgery.... and I was expecting to see someone like that... besides if I had gone there, my "insurance" since this was not caused by a "dental" but "physical illness - Sjogren's) may have paid for some of it...

But, he sends me to an idiot about 25 miles away, that is a crazy person. First, they told me NO CHARGE for me to come in and be seen and have a consultation. 2nd I had just had Xrays done of that area less than a week or two before showing the bone piece missing, which was about almost an inch between the maxillary sinus and my mouth.... but he insists on taking another Xray - and then charges me almost 200.00!!! too do NOTHING! HE wanted (HONEST to the Lord) to DO THE EXACT SAME THING MY DENTIST DID THAT FAILED! PLUS he knew nothing about "Sjogren's" and less about autoimmune illnesses, and he acted scared to even touch me, due to all of my "medical issues".... so again here I am STUCK... if I DON'T PAY UP, then there goes my credit score... he absolutely (and he is another one I sat waiting on him until after 5 pm in the evening, and my appt was like at 2pm).... and he could not do a damned thing to help me... PLUS he tried to go ahead and schedule the procedure.. and told me it would cost about 3,500.00!!!!!! NOPE you read that right!!! $3,500.00!!! REALLY!!!???!! You have to be joking right..?

I literally hurried paid, AND ALMOST RAN TO MY CAR... I felt like I was in the "Twilight Zone" of hell with dentists!!!!! Nuts, insane, no compassion, no care... and he is old as Methuselah... he had been a "dentist" for eons...


As I drove back home, late in the evening, my husband and family worried... I finally jumped on the cell, and told my husband I was fine, mad but on my way home....

Again though, no RECOURSE!!! Where are those PATIENT RIGHTS!!?? I sure as hell have not seen them.... and there are more, but these really stick out...

Now back to my "current" dental status. I called last FRIDAY, to get the proper charge, and make an appointment (by the way after about 6 months enough scar tissue filled that hole, and even though the bone is probably still missing, the air and any liquid seems to not be coming through... but it took it that long to seal itself over... and that is insanity... I could have and already had massive issues, with lots of maxillary scar tissue in that sinus passage. I had been told that after having a CT scan of my head and neck... they could see the chronic scarring from one sinus infection after the other when I was a bit younger.... but I could have had a massive infection, and/or all kinds of things can happen when you leave that "open" for bacteria etc to get in.... it could have even caused osteomyelitis... or a bone infection.... that URL above will give you a good look into why that was nothing to mess with....

Okay, it is NOW WEDNESDAY of the following week! The receptionist had the audacity to tell me, "Well, that plan was done almost a year ago" and prices have went up! WHAT!!??? So, she said she would talk to the "office manager" and call me back... well, here it is almost again a week later... no call... nothing...

and again, what is my recourse....???? Those mini pins HAVE to be put in because my bottom dentures WILL NOT STAY IN PLACE without them! So, they have to be "modified" to snap down onto those pins, and until that is also done, my top dentures tend to "move around" if I am not careful. Even with the "Fixodent" powder, and everything like "training" your muscles to help hold them in... if I allow my mouth to dry out in the least way, or I have a long conversation, or if something "gets under" that top denture due to the bottom one shifting around, they both will literally fall out!!

How the hell can I deal with that? Plus I am NOT able to EAT PROPERLY YET! I can't "chew" most stuff, but very little on one side... I have had to stop eating many things that are healthy and I love... many fresh fruit, veggies, just so many things that I think I "might" be able to eat, and there is no way... either the dentures move, or something happens so if they don't line up, then there is no way to chew food... I can't bite anything off. I have to even take lettuce and Jim cuts it up almost like it is chopped parsley or something tiny, just so I can have salad... but things like cucumbers... forget it, can't eat apples, no matter how small I cut them up... it is insanity....