Specialists-A WASTE OF TIME & MONEY ON A SO-CALLED (NP) DERMATOLOGIST WHO KNEW NOTHING!

Going to a "Specialist", Getting NOTHING but MAD, when they do not know a thing about WHY you were sent! When My Rheumatologist (NP) & My PCP BOTH already had agreed I had "probable Psoriatic Arthritis"

I've been "waxing and waning" at least 4 months, maybe more at this "sudden acute break-out" that started on the outside of my right ear, sudden big "flakes" on my scalp (NEVER HAD that before at all", then the top part of my upper chest, and my upper shoulders, a spot over my ears, and one on my nose, then on the side of my face... and a bit on my right wrist... ALL APPEARED.. they are round, at the time very, very "flaky, thick" almost as if it had been a sore that took a long time to heal. But, no itching, looking horrible, and no sign of getting better, just every one of them flaked every day... I tried everything I could think of, yet nothing seemed to be helping.

I did my own "research" and found with my other Autoimmune issues, the RA, Lupus, Sjogren's, Raynaud's etc... and my joints getting worse with stiffness, pain, beginning to "twist and turn" all of my knuckles on both hands swollen, I felt it could be Psoriatic Arthritis". 

I had seen both the PCP & the Rheumatologist (NP) BUT this was after 3 months of them beginning to heal. They could still see it on my scalp, and how it flaked off a few places, BUT OF COURSE they had began to look a bit better. As always, about the time you begin to get well, & go to the doctor so then they cannot get a good idea. 

BUT, everywhere I had one, a round white scar almost with a bit of a sunken spot in it developed. Plus even now I still have a couple in my ear.

So, after waiting weeks, getting into a "Dermatologist" & try to avoid Dallas, I found one closer. I go yesterday, & before I went I called & asked if there were any "precautions" they were taking, other than the normal ones for the Coronavirus. Well, the lady on the phone about half acted as if she didn't even know what I was talking about. Then she said, "we are going by what the authorities are saying. So, still a bit hesitant with all of my other issues (even the pacemaker, it's been there 7 months but it can be like the autoimmune illnesses, a complication, even with the flu etc. I always am very cautious during the flu season. 

So, I go into the building, NO HAND SANITIZER, NO WIPES, NOTHING... not at the door, at the lobby EVEN NONE IN THE RESTROOM! Well, by now I was a bit nervous. Of course I had my own, so I put some on, after washing my hands, and & went to find their office. Again, I go in the office, NO HAND SANITIZER, WIPES AND EVEN NO KLEENEX!!! NOW I was REALLY getting to the point I wondered if they took "any" precautions. There was NONE in the rooms, and other than a very small "posting" you could barely read on the wall in the waiting room, NOTHING about it! They called me in, the nurse NEVER asked about a fever, if I had been exposed possibly, or had been out of the country. Plus again NO HAND SANITIZER, NO TISSUES, NO SIGNS POSTED, NOTHING. SO, that was bad enough, then she was an hour late!! And she "barely" looked at anything I was trying to show her, or listen to what I was saying. And just said, "I don't think it is psoriasis"and I asked what about these white round "scars" left? She had NO answer... for one thing they are ugly & with spring and summer coming it is bad enough with the scars I have due to surgeries. So, she basically, told me the same thing I knew, about lotions, what to use etc.. and said "if I have some that come up she can see "better"then call & come back. 

By this time I was fuming and disgusted, and she even tried to shake my hand! I almost walked out without paying the co-pay I was sob freaking peeved! I left there upset in tears, ruined my day, when I could have been home working on my lawn, a waste of gas and money for a co-pay I should really not have owed. I paid it, hurried out, used my hand sanitizer, then went to the restroom and washed my hand... & the closer I got home, the more upset I got.... I wished I would have taken pics when the places were so bad... so, at the last I asked her "would Enbrel be a medication they MIGHT USE TO HELP THIS?"  SHE SAID "YES"... one of them & there are several others out they use for it. So, I said well I went back on my Enbrel about 4 to 5 weeks ago. So, I told her that, & she said well let's "hope", that will help. (So all of the paperwork I filled out over the previous weekend, along with medications, illnesses, surgeries, whom my doctors were etc... she NEVER even looked to see I was on Enbrel, Prednisone, Plaquenil, & Methotrexate.. because those 3 are the older ones they use... NEVER, NEVER, EVER WILL I GO BACK NOR RECOMMEND THAT OFFICE TO ANYONE! I have had a doctor or two really upset me over the years, but this one really "did not know her rear from a whole in the ground"....

Weather, Chronic Pain, Pain Pain and MORE PAIN!

Any and everyone of us here, there and yonder, knows how much the "weather" can effect chronic pain. Other illnesses such as Lupus, RA, Osteoarthritis, Joint replacements, cervical spine surgeries and problems, and many more illnesses are "effected" by weather.

Oddly enough, it was not that many years ago, that I would tell my doctor(s), not that long ago, ONE doctor saw you for just about everything.... that THE WEATHER MADE MY MIGRAINES WORSE! Back then, and as I said NOT that long ago, they would look at me like I was nuts, bonkers, and just needed some reason to "complain", go the the Emergency room for the dreaded Migraines that plagued me from the time I was about 17 years old, until I then began having "Lupus Migraines" about 10 years ago.

Lupus Migraines, as I call them are an entire different "ball game" from regular Migraines. Used to pain medication worked for the other migraines. Even though I had to fight tooth and nail to get it often times, my severe headache, nausea, the grogginess, the feeling of wishing you could remove your head from your body was horrid. Yet pain medications handled the problem, most of the time.

Then when I began having Lupus Migraines, no amount of "regular pain medications" in the world will do a thing for them. I must have a huge injection of corticosteroid, and then 10 to 14 days of Prednisone, the "step down" dose, in order to get rid of that type of Migraine.

Fortunately, getting that help is easier than having to go in for any type of narcotic pain medication. Yet, I still have to have those also, for the other "many chronic daily pains"I dread, must still have my pain pump, and I have pills for "break through" pains, especially during the times when the weather acts nuts, causing it to reek havoc with my entire body. I "had the surgeries" to help rid me of the other pain, from the joints that have just disintegrated over the years. I tried to tell doctors way back in my twenties, that I had "genetic arthritis". Again, although not that many years ago, they just didn't want to accept the fact that "someone as young as I was" could have that bad of joints. Yet, it was true. I tore cartilage out of my knee at 15. But, by the time I was 21 it needed surgery again. Then the other knee, my elbows, my shoulders, all began giving me problems. I had them injected more times than I can count.

After the many, many tests, scans, injections, medications, even was hospitalized for a few days to try a medication that was "dangerous" to my heart, and it didn't do one thing for the headaches.

After having several more joint surgeries by the time I was 35, I began getting through to some doctors, that these problems were not all imaginary, but were truly issues that I probably was born with. I even had double hernia surgery about 4 years ago! The surgeon told me I was probably "born" with those areas "weak" like some infant girls are, and after years of walking, lifting, bending, picking up something heavy and so on, that they finally became fully herniated, and had to be repaired. Even that was a nightmare. I could Feel them, I could SEE them, yet 3 doctors and even a sonogram didn't pick them up. I finally went to a surgeon I trusted and HE could feel and see them. HE knew what to look for, and he also was well aware of some women, were born with those spots weakened. And some went on to develop hernia's that needed repair.

Usually you don't catch me "lying around" or doing basically nothing. I fully believe that laying around, even when you feel like "hammered hell" can just cause you to feel worse, hurt worse, and give you a lack of energy, lack of muscles, an you question, which is better? Am I harming myself worse, by getting up and doing  things? Or am I better off "working through the stiffness, pain, swelling, and all of the side effects that go along with these illnesses?   

What sucks is that although I usually DO feel better up and moving, even if it is slowly, it still at times takes all the energy and will power I can muster these days.  I have people who stare at me when I park in the handicapped place. It's still hard to have "invisible illnesses". As much as is out there about so many of us suffering, with these horrid diseases, yet there are still "uneducated", "mean", selfish people that want to make fun of, or cause us more grief that we already deal with on any given day. Just sitting here trying to type had caused my wrists, my upper back, my hips, all to hurt like hell.

So, me now trying to sit down and write a 3rd book, when I need to spend HOURS typing it out, almost seems as if it will never happen.                                                                                                                                                   

Fed Up With Pharmacists, Doctor's, Lupus, Medications and Fed up with too many side effects! Loving Fishing, and Better Weather

Was out at the lake yesterday, but the wind picked up the wrong direction and I had to come home. I can't stand in the sun due to the Lupus and meds etc... and I HOPE I finally have some sunblock for my FACE that DOES not cause breakouts. I FINALLY ALSO GOT HUMANA AFTER 4 WEEKS OVERDUE OF MY RA MEDICATION BACK ON TRACK! THEY ARE SUPPOSED TO DELIVER IT TUESDAY! I hope so, my fingers, THUMBS ARE THE WORST, WRISTS, ANKLES, EVERYTHING IS SO STIFF, HURTS, I COULD NOT EVEN BUTTON OR UNBUTTON MY JEANS OR ANYTHING THESE PAST FEW DAYS... 

I can't cut up fruit, and even trying to be out yesterday cutting a few tree branches down for the trash, I accidentally hit one of the branches on my leg, and it was just a little nick, and it bled everywhere. I had to come in and I already have spots on that foot and ankle where mosquito's bit me and it itched so badly, I've got a rash where I scratched it in the night... So I've had to bandage up my foot so much it looks like I cut off half my foot!!! And it's just a few scratches mainly, but if I don't the pups want to lick it, and then I was outside this morning, weed eating and spraying the weeds in the back, raking up and so forth. So, I fear infection so badly. Ever since the incident on both thighs where I had the cellulitis, that turned into "holes" in my legs, and I still have terrible scars, that although I went to the wound care people for 6 weeks in Dallas, they still never really healed where they covered over and look nice. I am almost embarrassed. Between those, the cuts on my knees from the replacements, and now for some reason, I have "spider" veins so badly in my ankles they look horrible!!! And it is so odd, I never had any problems, then about a year ago or more, 

I began getting them all over both ankles. I don't know if me spraining them so badly, that Sunday of Mom's funeral, and I had already sprained the right one twice before, if they "broke" those vessels that badly or what, but they are so ugly. I've asked the doctors and they told me that insurance probably would not pay for it. But, they also tend to "seep" under the skin, so at times those ankles where the spider veins are so bad will "weep" and cause my ankles to swell. I know they have new treatments now. They used to put saline through them, and they said it hurts like hell. But, now I think they can "laser" them... I am thinking about going back to the foot specialist I saw with my ankles being so badly sprained they would not quit hurting. Plus the right one would swell so much, I could not walk on it. He put an injection of corticosteroids in it, and that really helped to stop the swelling and pain. But, the spider veins make my ankles look like I am an old, old lady! I guess though after all of the surgeries and scars from them, I get to where I don't care if people think they look bad or not! I refuse to COVER UP and burn up and not wear shorts, when it's hot! 

Anyway, been a busy week, and I've been busy every day doing something. I still have not done  that stupid lab work, but it has to be fasting, and I get up so early, I can't go for hours without my coffee or tea... last time I ate breakfast early, then went for 8 hours without food and then went in that afternoon for the blood work, rather then trying to go in at 8AM. And I got kind of peeved at my Cardiologist last week. ^ months ago when I was there, we talked about putting in a pacemaker, due to my heart rate being so slow especially at night. It will be at 43 beats or less at times, and she suggested since I take the medication for the "extra beat" I have she could do the pacemaker. But, of course once it's there it is forever. So, this time she talked about sending me to a "heart rythym" specialist. She said he could possibly try a "different medication" or decide whether to do the pacemaker.. Well I said, 1st of all, I am taking too many meds as it is and I am just about ready to throw them all out the window and use "natural" supplements, because each time we try a new medication, I have problems from it. Then she admitted she DID NOT do the "medications" this specialist does "because there are so many side effects"... so I said well then, "if" I decide I am "bothered" too much by the arrythymia THEN she could DO THE PACEMAKER AS WE ALREADY TALKED ABOUT! She was the one who just told me 6 months ago,, the pacemaker was the simplest way to "correct" the slow heart rate!!!!! So, WHY WOULD I GO TO YET ANOTHER SPECIALIST, THAT FIRST OF ALL UNLESS IT'S LIFE OR DEATH, I AM NOT TAKING ANY NEW MEDICATIONS!!! I am FED UP WITH THEM, AND ALL OF THE SIDE EFFECTS THEY CAUSE!!! 2ND OF ALL, she can do the pacemaker right here in my hometown, as a day surgery, and I can go home in a few hours. I DO NOT NEED OR WANT YET ANOTHER "SPECIALIST" THAT I HAVE TO GO TO DALLAS AND TRAVEL TO SEE! It's bad enough with the Rheumy, Pain doctor, and the Orthopedic surgeon, without adding to the list!!!!!

Becoming an "Active & Proactive Patient" Educating yourself & How it can surely help when you are managing chronic illnesses and/or pain... Lupus,Heart Disease,Cancer,FM,RA,Sjogrens and so many more...

In Other Words "When Patients Manage Doctors".... or at least try to...


This is something I have practiced actively all of my adult life, and especially after have several different "ongoing chronic illnesses", and now we see a different "specialist" it seems for each and every illness, unlike when you "family doctor" did it all, done your physicals,delivered babies, done surgeries etc. I recall with my 1st son being born, my regular Family MD delivered him. Shortly thereafter, he quit delivering babies, along with many of the other family doctors. Due to the rising cost for them to have insurance being doctors, they allowed those area's to be left up to the specialists. When you have for instance my situation, heart issues, so I need a cardiologist, Lupus, RA & several autoimmune illnesses, my Rheumatologist, and my PCP also works with me on the Lupus, I now have a specialist as far as my vision, due to the double vision, I have different surgeons, from a general surgeon, to more than one orthopedic surgeon, because many of them "specialize" in different joints, surgeries and so forth

Then many of us have a Neurologist, a Pain Management specialist, and ENT, a dermatologist, dentist, sometimes even a specialized dentist, and from time to time we may encounter other specialists, such as immunologists, psychologists, oral surgeons, and so many others, as time goes on. I found if I did not take an "active" approach to let each doctor know who the others are, what role they play in my health care, what meds I am on and from which physician, and I keep a list of all of my physicians and why I see them, along with lab work, any type of radiology reports, or scans etc... I have learned that all too often one doctor, may not even send the others the information such as labs, testing, imaging and so forth. So, being involved in your own health issues, taking charge of making sure everyone is put to speed on your other health issues... all of that is so critical for all of us, especially those who deal with chronic illnesses. Now the one problem with that, is SOME physicians, are not as "accepting" when a patient comes in with information, and so forth.

I have found that a couple of my physicians, even though in the end, what I had originally thought and told them was true about a particular health problem of mine, they much prefer an "uneducated patient"... I know that is hard to believe, most of mine are thrilled that I take an active role, and I "know" my own body, and I research medications, treatments and so forth. But, I have a couple of them, especially one in particular that gets almost "mad" when i come in and tell him what I think could be wrong. He has told me before that "I was not the doctor" etc... then he had to apologize a couple of times, because what I had said in the beginning was exactly right! So, he had had to "swallow his pride" and in his own way, make amends for calling me "stupid" basically. Yet my other doctors love it when I can walk in and possibly tell them what I fell maybe going on. It allow them less time in testing etc for things that may NOT be wrong, and to concentrate on what is so we can get right on to "fix" the problem.... Times have dramatically changed in the medical world even over the past 10 years or so... and you truly need to be an "educated patient" whether your physician likes it or not... YOUR health and well-being should be #1 for you!

 

Here is an article from the Wall Street Journal

 

"When Patients Manage Doctors"

http://www.wsj.com/articles/when-patients-manage-doctors-1439228028

"I Wish I would have known? - WEGO Health Writer's Challenge - April 29th, 2015 Wednesday

Today's "prompt" for the next to the LAST day of the 30 Day WEGO Health Writer's Challenge, is "What I wished I had known in the beginning of my patient journey?" In other words, when you were first diagnosed, what do you wished you could have known, asked about, done, been more capable of understanding and so forth.

One thing that comes to mind is I wished I had known more about different types of "Rheumatologists". Our physicians (and I say this often) have almost "specialized" themselves out of the everyday field of medicine.

Rather than have as we did not that many years ago, a doctor, or physician that could see you for a flu bug, take out your appendix, deliver your kids, and give your kids their immunizations. My kids are now 35 and 30 years old. Yet, they both were delivered by our regular physician, that did all of those things. Even if one of mine had been Cesarian, he could have delivered him or her.

A medical doctor was a doctor of "all". Unless you had something that was really extremely unusual, they did not send you to a specialist to "set a broken arm". If you needed stitches, they did not send you to a plastic surgeon. When babies were born, you didn't have to go to an OB/GYN. Even some surgeries, were performed by your regular physician, unless it was some "off the wall" type of surgery.

I began to notice, right after my youngest was born, that doctors began to "not" do everything. If one of mine had an ear problem, off to the ENT doctor we went. If you needed surgery, let's say "female surgery", a hysterectomy, you saw your OB/GYN.

Then when it came to cancer, you were sent to any number of "cancer" specialists. It began as kind of an "umbrella" physician, an Oncologist. Then you began to see that branch out into "breast cancer" specialists, brain cancer specialists, intestinal cancer specialists, and the list continues on.

If you had a joint that needed surgery. It maybe that your regular "Orthopedic surgeon" may not do a "hip surgery" or "elbow surgery". You had to take yet another step into the "Orthopedic Surgeon" who specialized in that particular joint.

Now, it is almost insane. When I hear or see just home many "specialists" there are depending on what is wrong, it can make your head spin.

So, had I known that a "Rheumatologist" that worked with RA or Lupus patients, maybe totally different than one that was more into other autoimmune illnesses, I may have seen the proper doctor a great deal more quickly than I did. My very first "Rheumy" as we call them, was very up in age. In fact, he still gave "gold injections" and this was about 2007. So, at the time, seeing him may have been the right thing to do. He "named" off after extensive lab studies, and also seeing me several times, a "few" different autoimmune illnesses that I have. He began with MCTD ) "Mixed Connective Tissue Disorder", Raynauds, Sjogren's, possibly Lupus, but he was not "set" on RA. As I said he was really up in age, but honestly he was one smart "cookie".

Yet, due to his not wanting to be as "aggressive" with the latest medications such as the biologics, I make the decision to find another Rheumatologist that would be. Well, little did I know, until after seeing 5 or 6 different ones, finding someone that would "treat all of them", in an aggressive manner was not easy. Each one either specialized in Lupus, RA, and so forth. Plus they were not much into the latest of medications.

So, had I truly known the factors surrounding getting into the proper Rheumatologist, I may have been able to "prevent" some of my problems that were getting worse, due to not being treated.

I also wished I would have began researching the medications, treatments, and doing my own blogging sooner. Even though I had done a great deal of research, when it came to the Sjogren's especially, I didn't do enough, soon enough I fear. Had I really known just how quickly Sjogren's was completely destroying my teeth, I would have searched for either a dental specialist on Sjogren's, or made sure my Rheumatologist did know about Sjogren's and was more apt to let me know just how bad it could get so quickly. By the time I knew just how bad my Sjogren's was, it had already rotted my teeth from the inside out. It was not until after the first two broke off at the gum line, and I went in to get a full mouth digital X-ray, that my teeth were goners. There was no more patching to do. There was basically nothing left to try and "save". So, wishing Sjogren's had been one of these that a really got adamant about, maybe, just maybe, I would still have some of my teeth. Now, my dentist told me, that even if I had known around 2007 more about it, since there are really no "medications" designed to fight it off, and the two I took really didn't do much. It was already too late. Thus, I spent all of 2014, getting the entire mouth of rotten ones all pulled, getting dentures, then going onto having "mini implants" for the bottom dentures, so they will stay in place.

I also wished years before I got an "official" diagnosis with the autoimmune illnesses, I had really pursued the reasons why, at well before the age of 40 years old, my joints were in need of surgery. I had 3 knee surgeries, an elbow surgery, a shoulder surgery, and many of my joints injected from about the age of 21 to 40! The answer I got for the most part when I did try and ask "why". was always met with, "Well we don't really know, But I feel you probably have "arthritis" that has surfaced early due to "genetics". Well, it was true, my Dad and Mom both had arthritic issues fairly early in life. Yet, nothing like mine where anything I did hurt.

So, more research, a better understanding of doctors, and asking more questions are things I do wished I would have done differently, more, better, etc. when I think back on when all of my health problems first began.

#HAWMC

AS YOU Go to DC Next Week to Represent ALL with so many health issues, may WE ALL do our part to BREAKTHROUGH the disparities that hold back Cures...

Well the "day of infamy" is almost upon many of us! That is the packing, preparing, and getting on that flight to Washington DC for several activities going on there this coming week! I believe our Congress will be a bit on overwhelm at times with all of the health activists, Ambassadors, Volunteers, and many that will be telling their own personal story about their chronic illnesses, the different disparities and challenges they face, some daily, and how much more we need in research, in new technology, new medications, more specialized physicians, of course which all take lots of dollars to be able to fund some of these extremely needed actions. Life is already a huge enough daily challenge, to work, take care of family, kids, go to college, and participate in the "daily" life of living. Then you add on top of that, chronic illnesses, chronic pain, being unable to get the doctors and medications you need, further more possibly not being able to even get a "real and proper" diagnosis FIRST so you can receive the treatment you need. The amount of "challenges" that those of us with chronic illnesses face, especially when the diseases are often arthritis, autoimmune, or both, and we still have so many UNANSWERED questions about these illnesses. Are they genetic in nature? Is there something on Earth, in our water, food, land, air, that is causing so many more of us to become ill with these chronic diseases? It is almost unbelievable to actually think about the growing numbers of those (and especially once again women) at an alarming rate being diagnosed with autoimmune, autoimmune arthritic, arthritis, FM, CFS. MS. Myasthenia Gravis, and then the other "ailments" that follow along with these "main illnesses"... brain issues, heart problems, lung problems, bones, joints, spinal issues, and then with Sjogren's the "dental" problems that are so very severe so quickly, that within months, like myself you find you are losing every tooth to this horrid disease, and there is not a thing to do about it, but have dentures. You cannot stop it or even slow it down. I tried. I was meticulous with my dental health, always had been. but, even as meticulous as I was, also using the couple of medications available, along with keeping my mouth moist, chewing sugar free gum, you name it I tried it, yet I still lost ALL of my teeth in less than a year to Sjogren's. So, each and every person, whether you get to go to DC this week and tell your story, or you are sitting at home, possibly too ill to attend, and you do your "advocacy" work from your computer, you send emails, you send snail mails, tell your own elected officials, and not just "federal" but our STATE Officials, and even Local governmental officials need to be a part of this growing, ever enlarging issue of autoimmune illnesses, and rare diseases. All also goes along, with people getting the help they need, so they can afford their medications, they can afford and be seen by the proper physicians, they can afford the surgeries, or whatever their treatment needs to be, even like myself, trying to PAY out of MY POCKET over $15,000.00!!!!! cash for my dentures to be put in properly... there are not many people around with that kind of available money to spend in one whack at a dentist! THIS NEEDS to be PAID FOR MY HEALTH INSURANCE! IT is A HEALTH PROBLEM, NOT DENTAL THAT CAUSED ME TO LOSE EVERY TOOTH!!! But, we ALL need to stand up and say NONE of this is RIGHT, NONE of this is ACCEPTABLE, WE should have the medical, dental, eye and more CARE of PROFESSIONALS and experts that can help us live somewhat of a normal life. The ALMOST INTRACTABLE PAIN I've been in over the past week, SHOULD NOT BE!!! I SHOULD not have to wait, I should have been able to have my medication UPPED the next day, not a week later! I HURT! I HURT to the point, that it's stopping me from doing what I love the best, my advocacy, my writing, my helping others.... my taking care of my own home, shopping. and helping Jim and my Mom... ALL of this is just WRONG! AND ONLY YOU AND I can MAKE IT RIGHT! So, for ALL of you whether you will be in DC next and able to "stand on the steps of the White House" as I used to say, and plead my own case and the case of others that could not attend, or if you are home, and not able to attend you still MATTER! YOUR VOICE will STILL BE HEARD! We must RING OUT, CRY OUT, and say ENOUGH IS TOTALLY ENOUGH! WE are one of the MOST INTELLIGENT NATIONS in the entire WORLD! There is NO REASON that our incredibly talented researchers, doctors, professionals in these fields can't find solutions, but they need funds to get these types of things running and off the ground. Again, I wish ALL next week an incredible and memorable trip to DC. May your voice RING true for all of us... from patients, physicians, family, friends caretakers... researchers... may we FINALLY BREAK THROUGH the "thick headed" thinking of some, and get brilliant things accomplished! As tears roll down my face, I beg of all of you to stand up and tell your story... to stand up and tell a story of a friend, family member.... stand up and be heard!