"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
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"....
NEVER again will I allowANY of the Dr's I see in Dallas, talk me into driving LATE afternoon RUSH HOUR in the POURING "Cats and DOGS"RAIN! Not when just about EVERY DRIVER DOES not CARE if they RUN OVER You OR not!!!! PLUS I have been going to the couple of"specialists" up there for 10 years & they ALL knowI have to make a 40 plus mile commune one-way and then back!!! Then when they "delay"you because they make a mistake, that you have to go BACK into the office, & "question" the doctor, (by the way good thing I did" I was CORRECT! Had I NOT "checked" I would have been in a world of severe pain till at least this coming Monday, and this way LAST Wednesday! Plus they also knew I was on a Schedule" due to trying to get two doctors visits done on that day. I DID NOT want to have to drive home, then GO BACK again in a few days! The driving on dry pavement is bad enough, but having to be in the car in stop & go rainy, wrecks, & road construction, at 5:00PM in Dallas on I-35 and I-45, just is enough to make you hurt for days.... To top it off, my Rheumy's NP is nuts.. she wanted me to walk over to another building (this is at like almost 5PM) to get my hands X-rayed & Labs done, which I have done here in town usually...plus NO WAY was I saying till Lord knows when in the pitch dark, that I don't drive well in due to the headlights anyway... I tried to TELL her but she is too busy "typing" on her computer to even LISTEN to me, sitting 10 feet away in the room! She will NOT speak up, I cannot understand her & I kept asking her to "speak up" and sh jut "mumbles".... So, then I finally get out of the "pits of hell in Dallas Traffic" have to stop & get myself & the pups some dinner... & by the way I got home (which I did NOT expect" to be gone over 10 hours or so.. I still had to change clothes, put stuff away & try to settle all 3 of us down, so we could eat... NOW I still think my doctor (Pain Doctor) is mistaken, but the way I need to explain it will be difficult on the phone, so I HOPE the email address I have for his Business Office & Patient Manager (who is awesome) works... MOST Dr's now days have "portals" & out of all them he does not. Thens the NP at my Rheumy's Office wanted me to see a "Dermatologist" cause this is probably Psoriatic Arthritis - the BAD thing is when I showed her the places, she asked me "Do you have Psoriatic Arthritis?" I was like WHAT!!!???That is what I am ASKING YOU?!! I wanted to shake her... that chart of mine and ALL of the updates.. by now SHE should have KNOWN I was asking about a NEW SYMPTOM and ILLNESS!? Not having to tell her what I had.... I asked her since it is a form of Arthritis, why do I have to see a Dermatologist? Of courseI have the plaque's & trouble with my scalp, BUT I did not know that the RHEUMY would not handle it all! Which I'll be darned if I find one in Dallas..like she wanted.. We have one right here I found, that I believe tales my insurance, had his "bio" etc... he shows to be extremely good. So here we go again, with a new doctor, like I did not have enough.. and I am NOT going back to Dallas for Labs & X-rays on my hands when they can do that here!
FOR ALL of us that are Chronic Pain Patients, Caretakers, family members of those who suffer from so many different types of Chronic Pain, many of us daily, and without our medications, along with other ways we "fight" against this epidemic, seeing that the CDC and the government is NOT on our side is frightening and down right wrong!
Those that do not understand chronic pain, from so many different types of illnesses, have no clue what happens to our "daily quality" of life. We would not be able to function normally, from taking care of our families, children, working, doing our shopping, going out to eat on a Friday evening, or even sitting with the family at home enjoying a movie. Chronic Pain without medications and treatments put each of us in a place of "NO life"... we would be sofa or bed ridden, we would not be able to cook, clean, do our yard work, shop, take our children to school or participate in the many, many activities that people that do not know what this type of nagging, gnawing, type of horrendous pain is like.
Many of us understand "acute" pain, from a broken bone, broken rib, from surgery, from an accident, which after a few days or week or so, that pain is gone once that heals. But, those of us with Diabetic Neuropathy, severe spinal pain and sciatic nerve pain, pain from the many Autoimmune Illnesses such as RA, Lupus, Sjogren's, Autoimmune arthritic types of pain, osteoarthritis, neck pain, pain from so many different types of problems that does NOT go away, that it stays with us throughout the rest of our lives... THAT IS THE SOMETIMES INTRACTABLE pain I am speaking of.
It always floors me when someone says, "You don't look ill?" Well, I, like most, do not like to go out in public looking like "death warmed over" as the saying goes. We "try" to put on our "best face"... to try and move through the pain, so we can appear to be "normal, even though our lives, our physical, mental and emotional states are far from normal. There is cancer pain, which in all ways is chronic, when it becomes "incurable". There are problems with bladders that can cause horrid pain, and it also an autoimmune illness. Up until I was "diagnosed" formally with RA, Lupus, Sjogren's, Raynaud's, and so forth, I had Migraines, and those were enough to cause me to have to after 25 or more years fighting them, had to quit working. They were so often and so severe, that I missed way too much work due to those. Then came my joints "falling apart" before I was even 35 years old... "arthritis" and people say how can someone so "young" have that had of arthritis that "eats away" at the joints. Well, we now know that infants can have RA, Juvenile RA, and some of them as young as 9 months old! So imagine, an infant so young, and the parents realizing that this hell of a disease shall effect their child or children for the rest of their lives.
I have always said, for anyone especially those in Congress, in the CDC, and so forth, that would like to "walk a week or two" in my or many others shoes with these illnesses would be screaming out for anything to relieve the pain!
So, the article below is just one example of how we still do not have ENOUGH EDUCATION IN OUR GOVERNMENT, in our NATION and around the World about ALL of these diseases that bring on severe, chronic, daily pain!