I Love My New Dermatologist!

So if you didn't know I have a disease called Hidradenitis Suppurativa or HS for short.  I'll do a post all about this disease later for those who are interested.

I had a wonder Dermatologist in Pennsylvania at Penn State Hershey.  When we moved to Louisiana I asked her for a recommendation but as you can see in the graphic below, there is not a single Dermatologist in this state that knows enough about or specializes HS.

The states in purple have at least one Dermatologist in the whole state that specializes in treating HS.  See all the purple surrounding Louisiana?  Anyone with HS needs to live in one of those purple states(and near a Dermatologist's location within that state)in order to receive effective treatment.

I tried here in Louisiana to find a Dermatologist who could treat me.  It was almost after living here a year(11 months)before I found what I thought was a Dermatologist who had a clue about this disease.  But once I had my first appointment with her, I found I was sadly mistaken.

So I reached out to 4 HS specialists-2 in Texas, 1 in Arkansas and 1 in Mississippi.  Only the one in MS returned our calls so we set up an appointment with her.  

Earlier this month Hubs drove me the 3.5 hours to her office(north of Jackson)and we hoped for the best.  We brought paperwork and information from my PA dermatologist so we could hit the ground running.

It turns out this doctor is friends with my old Dermatologist.  They go to medical conferences about HS and give talks there-my old Derm gives lectures about Adult HS and my new Derm handles Pediatric HS lectures.  

So we had our appointment and she needed to now write a prescription for the drug I am on presently for my HS condition, which is surprisingly still keeping me in remission.(Most HS sufferers need to change biologics or go on Remicade infusions after a few years, as the biologic drugs used lose their effectiveness over time.)

We had a funny moment when the doctor's nurse took us into the exam room and was setting us up to see the doctor.  She noticed that we had traveled quite a ways for this appointment and asked us where we had come from.  I told her and she said she and her husband live across the river from our town in the neighboring town.  I wondered why she took a job in Mississippi and then she asked me what Dermatologist I had seen in my town.  I told her the name and the name of the group practice and she got a knowing look on her face.

It seems this nurse had tried to get a job where she lived with a Dermatological practice that does "serious" or Medical Dermatology.  She had contacted this same practice I had tried to use and then they had tried recruiting her.  When they took her out to wine and dine her this nurse had asked point blank, "Does your office do Medical Dermatology?"  To which, the local to us Dermatologist has responded NO.(Funny how this office, when contacted by a potential patient with HS is told, "sure, we treat that!")  At that point the nurse had declined any job offer from this Dermatological office and went looking elsewhere for a "real" dermatologist and had landed at this U of Mississippi affiliated doctor's practice.  The nurse stays in the Jackson, MS area all week for work and travels the 3.5 hours home on weekends to be with her husband and then back again on Mondays.

Turns out I am not crazy when I got a bad vibe last August when I had an appointment with this dermatologist in Louisiana if this nurse also ran away from a job offer from her. lolz

New Dermatologist wants to see my back in 3 months.  This is a hardship traveling so far so frequently(a 7 hour drive total)but I am hoping such a frequent visit schedule is just because I am a new patient to her.  Perhaps I'll be able to see her 2 x a year like with my previous Dermatologist in PA, who we had to travel just under 2 hours to get to.  I'll ask if she does telehealth appointments the next visit(but sometimes Medicare and Supplement plans don't cover these types of visits so I'll have to get more information on costs is she allows them).

Anyway there have been issues with setting up my Rx for the medication I need because of going on Medicare with a Part D supplement and her office staff not willing to send my Rx to a different specialty pharmacy that MY Part D requires me to use and wanting to use the pharmacy that they have a relationship with.  It's all fine and good to use whom they regularly use but won't do me any good because my Part D plan requires me to use X and not Y.  That's been a small hassle so I am glad I stockpiled my medicine while still on private insurance, otherwise I'd have missed doses waiting for this to get straightened out.

I feel I am now in the right hands medically, for my HS, though the medicine I need will cost me $2,600+ to fill the first two times on Medicare Part D as there are no generics.  The first fill, along with all the other medications I am on, will put me in the dreaded Medicare "donut hole" but the second fill + other meds filled will get me out of the donut hole and put me into the "catastrophic phase" where I will get the medicine for free for the rest of the year.  It's still a large chunk of change to fork over for drugs but at least I won't have anxiety over this going forward. 8-)

Sluggy

Frugal Friday.....the February 23rd Edition

There are a few Frugal wins this past week so here goes....

*  Evelyn/Evelyn the Egret has moved on and we didn't see him/her this past week.  I blame the lack of rain filling up the fishing holes in the yard.  Goodbye for now my bird friend.

* As for saving money last week at the grocery stores, I already posted the details on my Walmart trips from last weekend........

*  Hubs and I had a Valentine's Lunch at a local Chinese restaurant last Friday.  Doing Lunch is more frugal than doing Dinner out.

*  I received a quarterly Rakuten rebate check this past week..........

A whole $22 and change.  Most of that was earned from hotel stays on our 3K+ mile trip in December. Better than nothing I suppose.....

*  No grocery shopping this week(so far).  My wallet likes that. 8-)

*  No eating out except for Valentine's day at lunch this week.  Shopping from my pantry and freezer this week.

*  We took all this to a local food bank on Thursday.....

Not necessarily frugal but it made me feel good after a day of dealing with my shitty kids. 8-)  Bonus-my gift buying list for Holidays shrunk by two(plus 2 spouses and a grandchild)this week!  

*  I bought a few clothing items and a purse online.  My wardrobe is still pretty bare so I used some gift cards for Kohl's I still had and bought a vest, a thinner jacket, 3 shirts and a pair of pants at their 70% clearance sale and ended up spending under $9 OOP.  Though the pants are a petite I still need to hem them up 5 inches! lol  The jacket may be going back as the color is not what my monitor showed and it's a tad long and shortening it involves a zipper so...no!

At any rate, I earned $20 in Kohl's cash which I now need to spend. 8-)   Vera Bradley had an outlet sale online too so I splurged on myself and bought a dog themed purse and wallet because I am all about the dogs. lol  I ordered smaller sized dresses, the sort I like to wear in the Summer, and 2 pair of pants in a smaller size as the company that sells them had a President's Day sale as well.  My last stop was on online t-shirt vendor for some of their offerings with free shipping. I went through Rakuten to earn rebates when possible at all these online venues.

*  I spent a good deal of time finishing trying on every clothing item I own.  I sent 6 dresses, some pants(don't recall how many pair)and 5 shirts to Goodwill(also had to pitch a bathing suit and bras), and I have many items I like which I'd like to save by altering them but only about 4 or 5 only require hemming to make them wearable(2 are dresses I bought last Summer that just need hemming).  Most items require more extensive alterations-raising shoulder seams and/or taking in seams(side and other)and with my ET I may never be able to save those.  It's a shame really. 8-( This was a big time consuming project but it didn't require spending any money so that's why I have included it as a frugal activity.

*  I found Money!

The Chinese restaurant referenced above is inside of a run down extended stay motel.  As we pass through the lobby I always check the coin return slots in the two vending machines there and one had a quarter in it!

Then I found a dime in Walmart when I returned a shirt at the Customer Service Desk.  There is a "change your coins into bills" machine there and I spied a dime that got lost by someone on the floor next to the machine.

Then on Sunday I hit up a different Walmart for 2 items and I just found pennies all over the store--next to the freezer section, in a self check-out machine coin return, on the floor in toiletries and in the foyer while leaving the store.

Total Found in last Week.... .39¢
Grand Total Found this Year.......$1.55

That's all I got.  

Any frugal wins in your neck of the woods?  Let's hear all about them!

Sluggy    

My Visit to the Creepy Eye Doctor's Office

My primary set me up to have an eye exam.  Being diabetic I have a yearly exam but this new primary says current thinking is that this sort of eye exam should be done two times a year now.  Great, more money being sucked out for medical shit.

So Hubs took me to the eye doc last week.  I couldn't help but notice the giant eyeball statue in the complex's courtyard.  I posed with it after we were heading out.........

So we go into the check-in area and there is a large decked out Christmas tree.......

Folks around here seem to leave Christmas trees up most of the year.....Christmas decorations make way for Mardi Gras decorations and/or Valentine's decorations.  As I looked closer at this tree I noticed there were rather large silver balls which had been painted to look like eyeballs.  Hmmm.  A bit creepy in my book.

So I rather quickly got escorted back by a technician to a small room where she did an intake on me and then tested my vision with the infamous eye chart.  Between answering questions and trying to make out the lines on the eye chart, while she was writing stuff down I made the comment that "I could never work here.".  She looked at me with a puzzled facial expression and I explained that I found this whole place creepy, as there was nothing but eyeball themed art work on the walls and on EVERY SINGLE WALL IN THE BUILDING.  And this small room had a large piece of artwork featuring a ginormous eyeball on it that kept staring at me!  She responded in a rather haughty tone that, "Well, all this art work is done by local artists."  That's all fine and good but seriously?.....if someone was paranoid, all these eyeballs staring at a person might drive them running from the place. lolz

So after finishing with this tech person I went back into the waiting room and then was called back by a different technician to a different room.  He had me look into a machine with bright green x's to measure something or other.  I made a comment that I felt like I was going to play MineCraft due to the green pattern.  This 30 something tech suddenly got very excited, thinking I played Mine Craft, but I had to burst his bubble on that.  He then launched into telling me that he and his brother ran a side gig helping gamers advance in games by providing digital equipment you can buy at auctions in these game worlds, etc.  He went on to say they made a high double $Ks figure last year and all I could think was, "Dude, you need to quit this job and do that full time because I am sure you'd make more with your side gig than what they pay you here.". 8-))

So after being dilated I was sent to a darkened waiting room labeled the "Dilation Room".  There was a tv monitor in there and instead of showing a tv show of some kind it ran commercials for this eye doc on a continuous loop.  Seems he also owns a "MediSpa" in this complex and they do cosmetic type dermatology stuff........

There was also a slide of the doc next to an eyeball mural located somewhere in the building.....I suppose the lady on the other side of the mural was the artist?

Then a slide came up of the giant Eye Ball statue outside decorated for Halloween, wearing an oversized Witches hat......

Hard to tell the scale of this thing from this photo.  I was wondering where the Christmas decorated eye ball photo was.

So it was finally time to meet the eye doctor.  I was surprised that he was a young guy, dressed in tan corduroy pants, a plaid flannel shirt and a red puffer vest.  Looked like a hipster employee rather than the owner of this facility.

He extended his hand to me but instead of putting his hand out vertically so I could shake his hand, he held his hand out to me, palm up.  I didn't know what to do with this....slap him 5?....spit in his hand?.....What??

So he went on to explain that I had no evidence of diabetic complications in my eyes. yay.
Then he said however, that sometimes when one has cataracts removed(which I had done in 2015)and have artificial IOL lenses implanted, a membrane can develop under the lenses, which can make your vision less than perfect.  He explained that they have a quick and easy fix for that-a YAG laser that can zap the membrane and restore your vision to the clearness from when you had the lenses implanted.  I had this membrane developing more so in my left eye but the right eye is not far behind in having this condition.  It's called a secondary cataract and this is a common complication with an easy fix.

I did have the presence of mind to ask if Medicare covers this procedure.  In my case my Medicare Part B will cover this being done as an outpatient procedure with no OOP.

So I am due to go back to the creepy eyeball place in about a week to have the PCO membrane zapped away.  Information on this procedure is HERE. Having a laser zapping my eye sort of makes me  nervous.  Heck, eye doctors/techs have a hard time prying my eyelids open to put drops onto my eyeballs. lol

Let me know if you have had cataract surgery and then needed a posterior capsular  opacification procedure performed on your eye(s).  How did it go for you?  Any complications?

I'll try to get more photos of all those creepy eyeball paintings/prints/murals/watercolors to show y'all in the future.

Sluggy

Last Weekend's Ibotta Deals Haul & Donations

 I did some rebating last weekend...........

Everything included......

1 x Palmolive dish soap

1 x Ajax dish soap

1 x Pedialyte freezer pops

1 x Dove body wash

1 x Lysol laundry sanitizer

1 x Dove shampoo

2 x Softsoap body wash

1 x Safety dish soap*

1 x Siete refried beans

2 x Whole Blends shampoo*

1 x U panty liners

2 x Shine flavored water

4 x Lysol wipes travel size

1 x House of Autry breading mix*

1 x Band-Aid bandages*

1 x Mucinex DM

1 x Airborne

2 x Essential water 1 liters

1 x Durex condoms

5 x Lean Cuisines(not pictured)

1 x Canada Dry Fruit Splash 12 pack ginger ale(not pictured)

*Everything starred was on clearance as well.

Total for all came to $110.35 OOP after a BOGO hangtag Q for the Shine water.

Rebates received on all this......

Ibotta $41.00
Shopmium $26.00
Tada $11.06
Alexa $23.00
ShopKick 3,950 kicks($15.80)
Fetch 1,025 pts.($1.02)

$117.88 back when all is cashed in or a $7.53 money maker.  I used some overage to buy Hubs some almond milk(aka nut juice).
I bought stuff we can use or stuff I can donate.
And speaking of donating.........

I just got together a large donation for a local church's food/toiletry pantry and some of the above purchased items are included with stuff I culled from our pantry/supplies.....

The overflow that didn't fit in the photo above.......

I love that all that baby shampoo and stuff is next to a box of condoms. lolz

Sluggy

My Neurologist Has Declared That I Have a Mutant Brain

So I had my second appointment with my Neurologist at the end of January.

If you aren't aware, I've had a difficult and contentious relationship with said Neurologist.  It began when he didn't send my anti-seizure meds rx for my EssentialTremor, to the pharmacy last year when I ran out of that rx.  He said it was due to his testing positive for Covid and having to go home immediately, yet he said he sent my rx to the pharmacy that day.....which he did not.  We had to make numerous phone calls to the Neurology dept. to find out why the rx was never sent to be filled.  Only later did we find out about the Covid thing and why on earth did he not ask a fellow Neurologist to send the rx either before or after he left the building??  Boggles the mind......

Then I was sent in July for a brain MRI, received the results but not being a Neurologist I really had not clue what it meant.  We had to call and message through the patient portal for a solid month and then go to the patient advocacy department as we never received a reply or any information what that MRI showed for a solid month afterward.

Again, we were given the excuse that the Neurologist was out of the country and would contact me when he returned(though we were never given any indication on when this would be).

Finally the Neurologist called and using "word salad" conveyed that they didn't know why I had, using his words here, "extensive white matter lesions in my brain".  We all get white matter lesions as we age but this was different.  He scheduled me for 5 blood tests to detect whether this condition was caused by a virus of some kind.  I had a test for HIV, Syphilis, John Cunningham Virus, Antinuclear Antibodies and Varicella Zoster(Chicken Pox/Shingles).  The only test that came back positive was the Chicken Pox one as I had had the Shingles vaccines in the past 2 years so that one being positive was normal in my case.

So he scheduled me for a Nerve Conductivity Study and an EMG test(you can look those up if interested).  The NCS was conducted in November and it showed I had serious nerve issues(nerves were not firing as they should and I had demyelination of the nerves in my arms and legs.  The EMG was not performed as they felt there was no need to do it after I "failed" the NCS....though  I was told technically, you can't fail a NCS.

These findings concerned me since I have a family history on both sides of MS and my first cousin on the paternal side died a few years ago of ALS, which are all neurological muscular illnesses.

Some noise was made about further tests(bloodwork ones)that day in November but nothing was scheduled.

I followed up again in December before we left on our trip to PA, asking about the NCS findings and what the further tests would be and when they would be scheduled and got no reply.

Again, while in VA I messaged through the portal and no response was forthcoming.

While driving back from visiting my brother in VA on January 3rd, my phone rang and it was someone in the Neurology department acknowledging my last message from late December and telling me that my doctor was again, out of the country due to a Visa issue(he is from India)so he is out of contact with his patients but he told this person in Neurology to tell me that "you have nothing to worry about".  Not very reassuring to a patient with neurological issues, a family history of MS and ALS who is not being given answers for going on a year at that point.

Sometimes in January after returning from our trip the Neurologist got back into the country and actually called me one evening.  He reassured me that whatever was going on in my brain was not connected to my ET diagnosis and probably was not something to worry about.  He asked about how my ETs were doing and after I answered that the rx he had put me on the previous February was only working sometimes and I still was unable to perform fine motor skills except for during some small windows of time when the tremors didn't seem as bad(ie-writing and sewing), he added a second medication to my regime.

So I show up to my second Neurology clinic appointment at the end of January.  While I was not hopeful, the Neurologist did seem to take my concerns more seriously and he spent more time with me and also brought in the head of the clinic to confer with him.  A 15 minute cursory appointment dragged out into a 2 hour visit where they went over that brain MRI, asked me extensive questions and explained more fully what they thought was going on in my head.

At this appointment the story I was given has changed.  They(the Neurologist and the Head of the Clinic that he consulted with and eventually brought into the exam room)now believed that my Essential Tremor diagnosis is correct and they changed one of the rxs I was on for that. But now, the "Extensive White Matter" in my brain became a totally different issue from the Tremors.

They both believe my brain MRI indicates that I have a type of Leukodystrophy.
Leukodystrophy is you look that up, general presents in infancy and/or childhood.  The head guy asked me a lot of medical questions at that visit about my childhood, which was unremarkable besides my severe allergies at birth.  Then they asked about my ancestry(Hubs shot me a "good Lord, don't get her started on genealogy" look at that one).lol  Basically there are certain leukodystrophy diseases that are prevalent in certain ethnic populations and they were wanting to know if I had any Ashkenazi Jewish ancestry as that's one of those populations where certain identified Leukodystrophies prevail.  And no, I do not.  I am a Northern mostly Western European 100% in ethnicity as my DNA testing has shown and the whitest white woman on the planet. 8-)

Leukodystrophy describes a group of more than 50 inherited neurological disorders that medicine has identified.  These diseases affect myelin much like MS, which is the protective covering on nerve cells in the brain, spine and throughout the body.  Leukodystrophies cause a progressive loss of leurological function in infants, children and sometimes adults.  The medical community is still discovering more types of these diseases.  It mostly presents in childhood and the condition is progressive and incapacitates the child and/or results in death.  It is very rare for Leukodystrophy to present in an adult, but when it dies, it usually presents in the person's 40's and 50's.  This adult onset form is a rarely studied and understood disease.

The Neurologist now believe I have been carrying these white matter lesions around in my brain since childhood but I have been  asymptomatic for Leukodystrophy disease for 60+ years and it has never progressed.  They view me at this point as a medical mystery and have ordered even more genetic type tests and more MRIs on my spine, etc.  Basically I am now a medical guinea pig and one day, I may end up in a JAMA article or paper as a case study.  yay me.

So I still have no diagnosis or name for whatever it is that is rattling around in my brain.  It is caused by a gene mutation, usually inherited but genes can mutate spontaneously.  They may find in the end that I am just a carrier of whatever this unnamed version of Leukodystrophy is, and other than demyelinating of my nerve cells it won't kill me.

There is no cure at any rate and they still don't know much about this group of diseases.

The Neurologists are currently working me up for Globoid Cell  Leukodystrophy or Krabbe's Disease.  This one is prevalent in populations with Jewish Ancestry so I doubt it's the right diagnosis but they have to start somewhere, right?  The latest string of genetic blood work which has to be sent to the Mayo Clinic by the way, the results so far is not backing up this diagnosis.

Basically these Neurologists have no clue what I have or don't right now.  And I doubt they will put a name to whatever this is before I die.  I don't see them again for another 9 months and no one seems in much of a hurry to give me a diagnosis(if that's even possible).

I have raised concerns with my PCP over this and due to how I was treated when I initially visited this Neurology clinic, so I now have a second opinion consult set up with a Neurologist in a different healthcare system down here in May.

So that's just one thing I've been dealing with since last February.

Mutant Brain Sluggy