I had to draw a spiraling circle and mine looked not quite as bad as the one on the right in this photo.
Miracles do happen it seems.....either that or my PCP did really listen to how desperate my ADL(activities of daily living)situation was(I was actually considering checking myself into an assisted living facility). After they gave me an appointment 7 Months out, I was put on the Wait List for Neurology and miraculously an appointment opened up on Wednesday and I saw a text about it Tuesday evening. Either someone canceled at the last minute(but I can't think why someone would cancel/reschedule a Neurology appt!)or somehow they figured out how seriously impaired I had become and they squeezed me in.
So I got a good going over with a new Neurologist, a med student(it's a teaching hospital after all)and then the head Dr. came in too after the Neurologist went to consult with him. I got tested(I failed the touch your nose with your pointer finger, then touch the doc's pointer finger test as well as hold your hands out i front of you and keep them from trembling test.)
For now I've been diagnosed with Essential Tremors and put on an epileptic anti-seizure medication.(This or a Beta-Blocker(which I have adverse reactions to)is standard treatment for this disorder.)
Now we start working on getting the dosage right. I'm on 25 mg(half a pill)for the first 4 days to get me use to it. Then I go on the full 50mg dose and wait a few days and if that doesn't take care of the tremors we start upping the dosage.
They are also scheduling me for an MRI to check that I don't have something worse going on(like Parkinson's or lesions on my brain)since my tremor condition seemed to worsen at a quick clip and could be part of something else developing in my head plus I have family history on both sides of neurological conditions.
I'd be happy with "just" Essential Tremors thankyouverymuch! There is no cure for this condition and it can get worse and most probably will. Kim's hubby who passed had this condition so I've seen first hand how it can affect your life. I don't know yet(didn't ask)how bad or how high they can push the med for it but we'll cross that bridge when and if we get there.
I see the Orthopedist early in August so we are moving ahead with the knee replacement here. But I am also moving ahead with the elite joint surgeon program available through our insurance too. I had picked a surgeon near Columbus OH but then they told me he insists on an in person pre-op appointment and won't do that through telemedicine. That means trekking 995 miles to OH TWICE-once for an in-person appt. and then again for the actual pre-op testing/surgery/beginnings of PT afterwards. And what if I go to OH and go through that initial visit and fly home and the surgeon says he won't take my case? All that effort was for nothing and I have to start all over again in that program. ugh
So I switched to a different surgeon in the same practice who will do the initial pre-op stuff via telemedicine. They are suppose to get back to me next week to schedule that particular appt. so we can get that ball rolling.
Basically whichever surgeon can schedule me for the knee surgery sooner gets to do it. 8-) Either way I'll be in Physical Therapy afterwards for many, many months.
And next week I get to have more fun.....2 days of PT for my back bookending my 10 year Colonoscopy. Goody! I don't mind that procedure but the day before prep? That's the b*tch! But at this point I eat so little anyway I won't mind and barely notice going a day without eating. Now drinking that nasty prep stuff and staying close to a bathroom all day is another story. lol
This year is genuinely what I've been calling it, the "Year of the Shit Show"(and next week will be an actual shit show on Wednesday).
I just want to thank everyone who has reached out with prayers, concerns, etc. for me this past week. I was in a very dark place mentally before getting into see a Neurologist. Between that and family drama plus Hubs brother passed away up in PA on July 13th, things have been nothing approaching "normal" with us.
Sluggy-who can sort of type today but writing is still beyond her skill set
I made it through Saturday without going to the ER.
Go me!
I am contantly checking my neck and arms now waiting for hives to come back and that's about as annoying as having them actually appear! lol
If it ain't one thing it's another, am I right? ;-)
Here's my current theme song.......
I've got a smoked pork butt in the crockpot and a roof over my head today so despite everything else, life is good.
Well my life seems to roll along like a misshapen lumpy rock.
*bump*bump*bump*stop*
Last week I had a flare up of my HS with an abscess in my left armpit. I'll spare you and won't go into details or share lovely, color photographs here. ;-)
A week ago Thursday I was at the doctor's office having said abscess drained, cultured and dressed. Nothing unusual was found and I was sent on my way with an Rx for a course of Bactrim anitbiotic.
On Tuesday I went back to this doc for a follow-up on the abscess. Everything seemed progressing in the right direction and she told me to finish out the course of Bactrim and no need to return for this issue.
Fast forward to this past Wednesday evening and after taking my evening dose of Bactrim I got a horrendous itch "down there" that led me to believe I may be developing a yeast infection.(I am also on another maintenance drug that can cause yeast infections so this wasn't a strange thing to consider.)
I took an oatmeal treatment bath in the tub which seemed to calm the itch and I went to bed.
Thursday morning I took my a.m. dose of Bactrim followed by my usual cadre of routine pills.
About an hour later my scalp started itching like a mutha and then my neck started and my left arm had what looked like a mosquito bite welt on it.
A short time later I went to pluck my eyebrows and saw that my neck was covered in red welts. WTF?
After reading a few blogs I noticed a tingling in my lower lip and saw that the middle of my lower lip was swollen. As I sat looking into my magnifying mirror the swelling started spreading and by 10 am my entire lower lip was swollen by about double it's normal size.
I dug out some Benadryl and took a dose and waited for the swelling and welts to go down.
I also messaged the doc I had seen for the abscess and who had prescribed the antibiotic that I was possibly having a drug reaction.(Bactrim can cause hives and swelling though it's not usual.)
By 1 p.m and I hadn't heard back from the doc I made the decision to go to the local Urgent Care to be seen.
This is what my lip looked like before I left the house for the Urgent Care......
Again, WTF?!? You can see a bit the welts on my neck in this shot too.
Up to the Doc-in-a-Box and after waiting an hour there the PA prescribed me a course of steroids.
Could be a reaction to the Bactrim so stop taking that now. As long as my tongue and airway wasn't swelling and my vitals were normal there wasn't much more to be done there but wait and see if the Prednisone helped.
I went to Burger King to grab a small burger to eat in the car and wait for R-A to fill the Rx.
I resembled the Elephant Man trying to eat my burger. It hurt to bite it and then finding it's way inside my mouth and then not letting food dribble out of the indentation that was the middle of my lip took real effort.
I finished the burger but R-A was taking forever to fill this script so I had to sit in the pharmacy for 15 minutes and wait with my hand over my mouth.
On the way out of the story I walked past a woman with a small child who saw my face and yelled in fright.
I felt like John Merrick from the movie in this scene......
I took the first pill of the script with some iced tea when I got home after 3 p.m. Most of the tea ended up down my face and on my shirt but I kept enough in my mouth to swallow the pill.
I laid down to nap before 4 and waited for the drug to work.
When Hubs got home around 6 p.m. I got up, and if anything, the swelling had gotten worse 3 hours after taking the steroid.
Plus the tingling and swelling was now moving down my chin, up my cheeks and to the edges of my upper lip.
I took off my shirt to see that I had red welts all over my chest, my breasts and my stomach area. In addition, the back of my thighs and hands were now itching like a SOB!
Hubs threw me into his car and headed straight to the emergency room.
Finally got back into the ER and after asking me a bazillion + 1 questions the learned professionals "think" it is a reaction to either the Bactrim or the blood pressure med I am on, or a combination of the both.
My BP med is an ACE Enhibitor which can cause angioedema and hives in rare cases. ACE Enhibitors can kill you if you develop a reaction to them and you continue to take them.
I guess I am one of the "lucky people" to be allergic to them. lol
ER doc can't be sure this is what caused my episode so I was referred to an allergist for testing in the future to see if the Bactrim or ACE Enhibitor caused this, or both. For now I am off the BP med and the Bactrim.
Nurse in the ER gave me a Benadryl cocktail into my IV......well, after two tries to find a vein by two different nurses.(I am a hard stick as they say.)
Mega doses of Benadryl cocktails don't like me either it seems, as my eyes rolled back in my head and I nearly passed out on the gurney. After laying there for about an hour I felt like my lips were improving and was well enough to get up and go home. The IV was suppose to make me sleepy as well but I was up another 2+ hours after we got home before I could sleep. sigh.
Here's a shot of me around 11 p.m. Thursday night. The bottom lip is almost normal size but the upper lip is still puffy. I look like I had my lips botoxed, don't I? lolz
I don't think the Angelina Jolie look is for me......
I'd probably still scare a small child with this face.........
Obviously I'll never be mistaken for Angelina Jolie and I sure hope not to be mistaken for the Elephant Man either ever again.
As of Friday morning my lips are normal and all the welts are gone. rah.
Awhile ago though I got another welt on the crook of my right arm and my thighs started up itching again.
Sigh.
*Update as of 5 am Saturday morning* About 8pm Friday evening I started in with the intense itching and by 9pm everything besides the lip swelling started again. I took another dose of Benadryl but it did nothing so we spent from 9:30pm to 1am back at the ER getting another IV of benadryl and prednisone(administered at 11:30pm)and the hives started disappating so I was discharged at 1am. Got a script for Pepcid but no pharmacies open to fill it so we went home. PA at ER said this could go on for 5 days or so if it's what they say it is. We are on Day 3 now. Got home and took another dose of Benadryl and went to bed by 2am. Woke up at 4 am with crazy mad itching and can't sleep because of it. Hives are getting worse and spreading again....now on all previous areas and going into my armpits and back of arms too.
Daughter woke Hubs up at 5am before she left for work. Hubs is heading out now to find the 24 hour pharmacy in Dallas PA to fill the Pepcid script. And I am sitting here trying to type between scratching. I am so tired I can hardly see straight. I am seeing a third trip to the ER in as many days in my near future, though they'll probably just give me more Benadryl and send me home. Sigh
Can this end now.....please?
So. over. it.
I'll check-in later today or tonight. Ugh
Sluggy **Saturday 1 PM Update**
Hubs brought home the meds from the 24 hour pharmacy. With a metropolitan sized region we live in, I find it strange that there is only ONE 24 Pharmacy around here(next one is an hour away or father if you live north or east of here), especially since hospitals no longer house 24 hour pharmacies on site.
Rx taken at 7:30 am along with another dose of Benadryl plus most of my other morning meds* and by 8:30 am I was itch-free (mostly) and heading off to bed to nap.
I did sleep until 12 pm and awoke still mostly itch-free and the welts have disappeared(mostly).
Took another dose of Benadryl at a 4 hour interval and so far, so good at an hour past taking this dosage.
The IV cocktail they gave me the first night at the ER was a combination of mega dose of Benadryl and a dose of Pepcid. While Pepcid is usually given to treat stomach aliments(acid relief, ulcers, GERD, etc.)it is also a Histamine-2 blocker. Hives and angioedema to some extent are caused by allergic reactions and are helped by blocking histamine releases in your body(Antihistamines).
Benadryl and other similar medications are histamine level-1 blockers. So a combo of both blockers are often used in cases where hives just won't go away. (Of course you can also be allergic to Pepcid or the other meds labeled as histamine-2 blockers so this Pepcid may have made the problem worse, but luckily I am not, and it did not.)
I spent this morning between scratching myself and waiting on Hubs to return with the script googling Hives(Urticaria)in all it's forms. Yikes. If it doesn't go away it could become a chronic case lasting for basically the rest of my life....so I had to stop looking! No information can be a bad thing but a little information can be dangerous.
I'll take this one 4 hour segment at a time for now.
* While googling Hives however, I did read that a maintenance drug the specialist put me on in late August after my referral "has been documented to induce allergic Urticaria".
At my follow-up appt. with this specialist this past Monday it was discussed taking me off of this one med I started in late August since it was only a minimal dosage(1 mg)and the condition I was prescribed it for seems to be improving and he doesn't feel I "need" to be on it and said I'd probably be taken off of that soon.
So I made the executive decision(along with my gut feeling)to stop that script as of this morning.
I'll contact this doctor and explain what I am doing and why, especially if the combination of taking the 2 different histamine blockers along with discontinuing three drugs now(Bactrim, the BP med and this new drug in my regime)keeps me hive and angioedema free and doesn't cause me even worse symptons, until I hear back from his office.
It's possible that the first outbreak on Thursday was both angioedema and hives but when the swelling of tissues(lips)didn't come back on Friday, that could just be hives(or not). Which drugs caused what could be complicated or changing, but I will not take them for now until we get definitive proof which one(s)are the culprit.
I will be making an appointment asap with my primary doctor too to go over all this and get his input, as well as push for an allergist appointment on three drugs that seem to be the likely candidates for causing these outbreaks. If none of the 3 medications come up as the culprits we go back to square one in looking for a medicinal cause with the allergist. At which point, this could take a very long time to discover what the trigger(s) were and this will be my new medical hell.
So we still don't know why this is happening other than I am allergic to something. Between the various docs and PAs I've seen since Thursday and knowing my own body and environment at home, we have ruled out environmental causes(not due to laundry detergent used on clothing, a difference in my surroundings in the last week), animal or bug infection/bites, a food allergy, cold-induced, warmth-induced, solar-induced, so we are left with drug-induced Allergic Urticaria or Idiopathic Urticaria caused by stress which leads to a break down of the Autoimmune system, and can result in developing autoimmune thyroiditis, celiac disease(in which case food will be involved), rheumatoid arthritis, Sjorgren's syndrome or systemic lupus erythematosus. (Type 1 diabetes is also among the outcomes but I can't develop that at this time in my life.)
Yikes!
So that's it from here for now. I see many oatmeal treatment baths in my near future and luckily for me I have A LOT of rolled oats on hand to pulverize into oatmeal dust for it(and I got it really cheap by buying it at rock bottom price.....see what I just did there?....worked in a frugality thing in this medical update? ;-) ).
Fingers crossing I can get through today without another outbreak and trip to my regular gurney up to the ER. I have to, merely for the fact that they have run out of good veins to use to put an IV into because due to my disappearing veins and their crookedness I am a very "hard stick".
Though there was some excitement last night when 6 cops showed up with a belligerent man in handcuffs to get his blood drawn for a DUI charge I'd rather stay home and find other entertainment.
The bright side of all this?
I am still alive(knock on wood)and our healthcare insurance is "good"(not great but at least good)and we have now maxed out on our Maximum Deductibles OOP we are required to pay/co-pay for(all medical treatment accept RXs). Umm, I think we hit the ceiling for out of pocket medical sometime between the Urgent Care and the 1st ER trip. Everything medical from then until Dec. 31st will be no OOP so I'll want to get this allergy consult, etc. on the books before Jan.1st. If this saga drags on into 2017 we'll probably max out our OOP next year too, given that 3 of the 4 people under our policy are frequent flyers now due to various health conditions. bleh.
I'm off to find something to eat now.
Thanks for all the well wishers in the comments. It does help a bit getting some positive vibes(or dare I say blog love?). 8-P
As August winds down(hey! it's the 31st today)here are the things going on lately at Chez Sluggy.....
* We got College Boy back to school this past weekend........
I was more hands-off this year on this one, as CB wanted to handle things himself.
This meant that I only spent $ on a couple of kitchen sponges and printer ink cartridges on the back-to-school shopping. $100 or less for back to school shopping? I'll take it! 8-)
The rest of his needs were acquired from my various stockpiles(food/toiletries/office supplies/etc.).
The down side was that he forgot to take a goodly amount of articles that he'll be needing....like his concert shoes, mattress memory foam pad and his printer cables.
sigh.
And he lost his wallet but didn't notice until the morning he was to leave which meant an extra hour delay in leaving and he was trying to find it.(He did and he left it in his bandmates car the night before.) I have threatened him with a wallet/belt chain for the wallet for Xmas.
The good news is he got to school in time for his Wind Ensemble audition and he aced that so got a chair in the Ensemble for this year.
* The garden--
All this was harvested in the last week..........
7.43 lbs. of tomatoes and another of the acorn squash(22.8 oz.)brings my Garden Harvest to 19.93 lbs. of goodies.
The bulk of those tomatoes are now in the freezer wanting for cooler weather so I can can them then.
I spent a morning here.........
Daughter had a treatment and I had to drive her there and back.
Lunch at a Chinese Buffet may or may not have been involved in this "treatment" afterwards.....
A medical appointment was how I spent my morning on Monday, well most of it was spent waiting.
It took 3 months to get this appointment and now my treatment is in the hands of a specialist and all my meds are being turned on their ears.
It's a whole new ballgame as I begin a new journey down the healthcare system.
yay.......8-(
Perhaps this anointed one will have some answers.
* Anxious to see the end of the month August financials tomorrow on the 1st of September. It won't be pretty I know but it's better to face it than hide from it, right? September won't be tons better in the saving category since property taxes(half of them)are due next month. The grocery budget is still kicking my ass but with College Boy away at school the numbers should look a bit better.
Speaking of CB, I can't wait to go dig out his bedroom. *insert eye roll here*
So I am off to the grocery store for cheap facial tissues and coffee and then to Rite-Aid for my monthly med pick-up plus all these new ones that were ordered. I might even pick-up something for free while I am at R-A.
Hey, how could I not? 8-)
Let's see......what's been going on over here this past week.....
First off we took #2 Son out for his "My Bad Self is 18 Years old" Birthday Meal.
Of course he picked one of the most expen$ive restaurants around.......
You think #2 Son is grimacing? You should have seen the look on my face when the bill came!!
I am not a big fan of Thai food anyway but this place ccommits highway robbery.
I could have gotten the same dish for half what they charged at the local Asian dive where we usually go. I suppose I am paying these high prices for the linen tablecloths and that cheezy fake rose on the table, huh?
Yah, leave it to me to bitch about taking the youngest out to dinner when he turns 18.
When can he leave home and stop draining my bank account anyway? Now seems like a good option..... ;-)
I've been having this for meals a lot this week.......
This is what happens when you buy 3 lbs. of strawberries and no one else in the house wants to eat them before they go rotten.
And might I add that these were exceptionally GOOD RIPE berries, which is unusual given the season is so early for them still.
I've also been eating differently than usual. I've been trying to only eat when and what my body is craving. This works well if your body is behaving and craving good things, like fruits and veggies and lean meats. Not so good when it goes off on a bender and wants nothing but crap like chips and cookies.
Speaking of crap......
I bought some BEER ice cream recently.
We live near the oldest continuously operated brewery in American called Yuengling's.
You may have heard of it?
Back during Prohibition, when no on could legally brew beer in this country , Yuengling's started making ICE CREAM to stay "afloat". (See what I did there? Ice cream? Float?)
They discontinued the ice cream line when the people in this country came to their senses and repealed the 18th Amendment in 1933.
Recently Yuengling's decided to get back into the ice cream business and it appeared, if by magic, at my local Weis PMITA Markets.
So I took that as a sign that I should buy some.....and I did!
It was pretty good and how could I NOT like a flavor called root beer float?
It is a bit pricey however so I doubt I'll buy it again, unless it's on sale and/or I have a coupon.
*Note* There is NO beer in this ice cream(mores the pity).
I was tempted to take a bottle of my Sprecher's Hard Root Beer and make an actual alcoholic root beer float with this, but #2 Son scarfed up most of this ice cream before I got a chance. Grrrr
When is that kid leaving home???
In other news......
I got a call from the Coumadin Clinic earlier this week, frantically wanting to know why I haven't gone for my "pro-time" blood test so they can measure the "clottiness", or lack thereof, of my blood.
I told her my physician told me to discontinue the treatment and testing since it's been 6 months since I had that clot in my kankle.
Evidently the doc didn't let then good folks at the Clinic know I was released from treatment.
Not very "up" on follow through my new doctor.....
I also got a call from the medical caseworker I was assigned to last April when I had my health scare.
She informed me that since I was not a Medicare patient and no longer belonged to a certain health insurance plan, the company of which she worked for, she would no longer be following my treatment and calling me up sporadically to annoy me with useless chatter.
Ok....see ya!
She's a nice lady but seriously, I am not an 80 year old doddering old fool(not that all 80 year olds are like that!)who can't remember where I put my keys or what pill to take when, who needs "monitoring".
And in further news.....
I got a burst of energy the beginning of last week and listed a set of fabrics in my Etsy store. A flurry of sales activity followed within 48 hours of the listings going live(Yay me!)and after that?.....nothing. *Crickets*
And when I went to pack one of the fabric lengths(I usually iron the cotton/blend fabrics before shipping them so they fold better into the envelopes and look nice)I noticed some faint stains(possibly were there when I bought it?)so I had to decide what to do. I saw that the buyer made rag wreaths so I figured she was just going to cut this shit up anyway and a few faint stains wouldn't be a problem.
So I shipped it out and then emailed her about the possible problem and after she inspected the fabric we could talk discount and/or refund.
At least I got another piece of fabric out of here, right? lol
And as I thought, the stains were NOT a problem and I have yet another happy, satisfied customer.
Go me! 8-)))
So you would think with actually selling some fabrics I'd be motivated to keep it up?
Nope.
But I did list 12 more fabrics this morning and am going to try to get the rest of what I have measured and photographed up this weekend, and maybe relist a few listings that expired from the first go round of listings I made. I'll hold back listing/relisting the flannels, corduroys and wools until later in the Summer because who wants to sew flannel with Spring almost here?
I went out on Tuesday to run some errands.
The Panera Bread place was beckoning me as I drove past, and seeing as it was $3 off a baker's dozen of bagels Tuesday I gave in and brought bagels home.
It's Friday and we are down to 3 bagels left.
I also went out Tuesday to pick up some goodies to take with me to Delaware next weekend. I am making up little goodie bags for everyone who is attending the Bloggerpalooza. Just a little something as a remembrance of Yours Truly. It's been a challenge to figure out WHAT to put in the bags as I haven't actually met any of these people in person! Yes, I correspond or read their blogs/they read mine and a couple I have actually talked with on the phone but I am starting to freak out just a little bit about going to this thing! I know it will be fine but will they like me in person?? That remains to be seen.
"Insecurity Central" here......
But hey!, how could I NOT fit in with this bunch?
A photo from the touristy dress-up like an old West characters Shop from last year's gathering.
And on the car front, because you know, there are ALWAYS things going wrong with cars............
Hubs took my minivan in for inspection and a general tune-up/check the tires, belts, hoses and doohickeys, and an oil change.
$200 later it passed inspection, has new oil flowing through it's innards and got a new gasket for something or other.
But the word is we need body work done as there is rusting on the undercarriage which might cause it to flunk next year.
Fan-so-tastic!
The car is 10+ years old and just turned over 97K miles. At least it should get me to Delaware and back no problem.
And that's about all going on here.
What's up in your world?