I've Been Going Through a Lot This Year

*Feel free to just skip reading this if you want as it's just me bitching and moaning about my life and health.*

We've been in Louisiana for a year now and I've got to say it's been one of the hardest years I've had in my life.

Hubs and I fight a lot and neither of us are happy.  I don't know why Hubs is unhappy(other than having to deal with me)but I have had a ShitShow of a year so far so I know why I am miserable.

First came to leg injury on Xmas eve and the months of wound care, pain and waiting to heal.  Disuse of my leg made my knee worse and I ended up fairly crippled by March and in a deep depression.  Add in my hand tremors were rapidly getting worse around this time which made the depression even greater.

We moved here to be near family, our daughter specifically.  She asked us to move here and said she wanted us near so she could take care of us.

While we have had contact with her on occasions it is sporadic and contact usually has to be initiated by me or Hubs.  Granted she let us live with them when we first arrived but had we not bought a house and moved when we did, she may have asked us to leave around then.  I know your grown kids don't want you around 24/7 but this is the child we let move back home for three years in her mid 20's so she could finish her degree and didn't make her pay rent or anything toward the utilities or food bills.  I love my daughter but she runs hot and cold toward us and I don't see that changing.  It is just the way she is.

She also told me in no uncertain terms that they planned to have a baby soon and that factored into our decision to move here.  Since we got here, she began waffling on when and IF her and her husband would have a child.  Neither of them seem in any kind of hurry(they are both in their '30s) and she keeps saying they don't have enough money to have a baby. Gosh is everyone thought that way there would never be any babies anywhere!

Plus now her work situation is precarious due to the company wanting to sell the facility but it's looking like no one wants to buy it.  And IF it gets sold, whether the new owners will offer folks working there now a job is not guaranteed.  And daughter keeps mentioning that they may have to move out of the area since Chemistry jobs are far and few between here.  And after we moved here at her behest she may move away.  Great.

Then dealing with medical stuff has been nothing short of a nightmare!  While Hubs sees the doctor not often(besides an eye dr.), I am a frequent flyer with numerous health issues to keep in check.  It didn't help that we were patients at that substandard clinic for the first 8 months we were here but my hand shaking got worse once we got to Louisiana.  I had an appointment in PA last year with Neurology that I never got to go to because it was scheduled after the move here.  Then it took too long to get an appointment with Neurology down here.  I got diagnosed(initially)with Essential Tremor in June.  The neurologist put me on a very low dose of an anti-seizure medication and the plan was to titrate up until I got to a dose that kept my shaking under control.

The doctor wrote a prescription for 30 pills and had me take 1/2 a pill twice a day for 4 days and then go up to 2 full pills a day.  I did that and realized that this bottle of pills wouldn't last me a whole month.  I messaged him on the patient portal about how this dosage wouldn't last the month and wasn't helping and how I needed a new Rx for more pills.  For almost 2 weeks he didn't respond to my messages on the patient portal.  I was messaging or calling every other day and then daily.  And I was stressing out since I was going to run out of the only thing that helped my tremors(but not enough).  At one point I got a call back from a Medical Assistant that they were sending my new Rx over to my pharmacy but it never arrived.  I continues to follow up with the pharmacy and messaging the doctor but the Rx never showed up.

On the day of my last dose Hubs called the Neurology Department and raised hell.   He got them to fill the drug for 60 pills through another Neurologist in the Department.

Later that night after Hubs picked up this Rx I got a phone call in the evening(about 8pm).  It was my Neurologist explaining that he had come down with Covid the day I was told the Rx was being sent to the pharmacy and he had to leave the hospital and go home for X number of days until he tested negative.  I felt bad for him but for gosh sakes, why didn't he hand over my Rx info to another Neurologist then, to have that Rx sent to the pharmacy?!?  No, he left work and left me hanging for days until Hubs got through to Neurology on the phone. He also said he wanted me to titrate up to 4 pills per day with the medication as 2 pills wasn't helping much at all and he'd write a new prescription.  After this current medication snafu I kept asking him how many pills he was writing the new script for as I had no confidence in what he told me and that he'd follow through with a new Rx.

So I waited for a text from the pharmacy for a few days but when nothing came I called them.  They had the Rx but since I had just had a different Rx for this same medication filled they didn't fill the new one.  I'd have to contact them later in the month when I was close to running out of pills and they'd fill it.  So I relaxed a bit on that score.

The Neurologist wanted me to have an MRI of my brain as well to make sure my symptoms weren't an indication of something worse than ET.  This was decided on my first visit back in July and was set up for mid August.  Diagnosing ET is very much a game of "rule stuff out".  

So I had that MRI on August 16th.  Two days later my test results popped up on the portal but of course it was written in "medicaleze" so being a lay person, it was difficult to decipher what the report meant.

There was also a little "bubble" that said my care team hadn't reviewed the results.  A couple of days later that "bubble" went away but still no one from Neurology contacted me about my MRI results.

Meanwhile as all this was playing out I also had an appointment with the Orthopedic surgeon who I had picked to do my knee replacement.  This was the third appointment with him.  At the first appointment he weighed me and looked at my leg(the Xmas eve injury area)and said he didn't like the looks of it and he said I'd probably lose my leg if he did the knee replacement.  Great.

At the second appointment he then said he wanted the doppler test I had done on my legs before Wound Care would do layered compression on it to heal my devastating leg wound from Xmas eve back in early February.  It took most of a month in July to get the hospital to send that doppler report.  It shouldn't have taken so long to send it(the hospital was 20 minutes drive away)so more anxiety and stress on my part.

At the third appointment(in early August)after saying my leg wound looked much better and reviewing the doppler report which showed good blood flow in my veins/arteries he was set to put me on his surgery schedule for the procedure.

Then I mentioned I was due to have a brain MRI and I had recently been diagnosed with Essential Tremor.

Well that became another roadblock to him!  Now he refused to put me on the surgery schedule until he got a copy of the MRI report.  Every visit it was something else standing in the way of getting my knee replacement.  What does a Brain MRI have to do with a knee replacement anyway?

That was August 4th, the MRI was the 16th and here I sat STILL WAITING until last Thursday for anyone from Neurology to contact me!!  We message or call the Department everyday for the last 2+ weeks.  I am told they will pass the message on to the doctor but he never contacts me.  It would be a 2 minute phone call but he can't find the time.

All I can say it's a good thing I decided to go with the surgeon in Ohio to do the knee or I'd be still sitting here spinning my wheels and not getting a knee replacement because the surgeon here is so risk adverse.  BTW-the surgeon on Ohio knows about the ET diagnosis and the MRI but hasn't said boo about that in regards to my knee.  I just think the surgeon here is gaslighting me.

So we go into September and still no response from Neurology.  While we were at Trivia Monday night my phone rang at 7:05pm.  I picked it up but couldn't hear anybody due to the loudness of the trivia going on.  I said whomever you are(because I couldn't hear a word they were saying)to call me back later as I was in a restaurant and couldn't hear them.  I repeatedly yelled into the phone, "Who is this?" but all I heard was someone hang up.

I am assuming that was my Neurologist as that is the only person I was waiting for a phone call from and I looked up the number that call came from and it was the hospital where the Neurology department is.

So I called that number back Tuesday morning and said I had gotten a call from this number the evening before but I didn't know whom had called.  Of course, some call center person at the hospital answered so I explained what was going on.  She sent yet another message to the Neurology department with a high priority.  Then later that afternoon Hubs called someone in the Neurology department directly, the woman he dealt with before about the prescription fiasco.  He got her voice mail and left a message.  
And nada.

At this point I have little confidence in this doctor and this Neurology department.  I really need to titrate up on the medication as it's not quite enough to keep me from shaking.  The meds wear off a few hours before I am due for my next dose.  If I feel stressed(and that's constant lately!)it also makes the tremors worse.  If the doctor won't even let me know what the MRI shows weeks after he reviews the test, I have zero confidence that this titrating up on the meds(which will mean a new prescription...again!)won't devolve into a stressful clusterf**k like the last time I needed a new Rx from him.

So I sit and worry about this MRI at present and the lack of communication from this Neurologist.

And my tremors keep me from doing two of the things that I've always done; painting and sewing.  I guess I am in the throes of grieving the loss of my previous life and my abilities.  Taking a half an hour to successfully thread the needle on my sewing machine is disheartening and soul crushing.  I am having to face the fact that I now need to sell all my fabric stash I brought here and that the ceramics I brought here too will need to be gotten rid of and I'll never do either skill with any degree of competency again.

And I finally got in to see a Dermatologist to treat my HS.  Luckily my excellent Dermatologist who was an HS specialist set me up with Drug refills through the end of this year or I'd be shit out of luck.

Let's just say that the Dermatologist I saw last week here was underwhelming.  I specifically asked when I called to make this appointment whether any of the 4 doctors in the office knew how to treat HS.  I was told of course they treat it but now I am left wondering if they treat it successfully since none of the 4 specialize in this little studied disease.  This dermatologist barely said anything to me, didn't examine me even! just had an office staff member copy the report I brought from my Dermatologist in PA and said come back after Jan. 1st when I go on Medicare.  I did get her to give me orders for a TB test since you have to have that every year you are on Humira and I was overdue for that test.

So I have gone to the HS website with a list of HS specialists and set up an appointment in February with a dermatologist who actually treats HS.  Of course there are no specialist for HS in this state.  I either had to go to TX(Dallas or Houston), AR(Little Rock) or MS(Jackson)to find one.  All these specialists require at least a 3+ hour drive one way for treatment.  Luckily I am in remission and just need maintenance visits so would only need to travel once or twice a year for checkups and refills of meds.

The situation here(all of the factors)is pushing me to move back to PA.  We have no friends here, a child who is basically too busy to really be in our lives and our experience with the medical care here is less than stellar.  We could move into Central PA(some place we could afford, cheaper than where we lived before in PA)but still be close enough to my HS specialist as well as a first rate medical center for my other medical needs.  

Besides I find the weather here terrible, the poverty around us is soul crushing and having to pay state taxes on our finances when is was not taxed in PA, as well as sales taxes on groceries(how regressive is that?!)  No wonder people here are so poor....between all the sales tax, state tax and lack of jobs, it's a terrible place to live.  Might be nice to visit but live?  Nope.

UPDATE-I finally heard back from the Neurologist after another portal message and then Hubs called the Patient Advocate's office and lodged a complaint.

A few hours after Hub's call I heard from the Neurologist.  He asked me questions(like was I a smoker, etc.)and said the MRI showed "extensive white matter lesions" to quote him.  When asked what that means he wouldn't give me a definitive answer.  I have had to Google that terms to learn what it means.

We all get white matter areas in the brain as we age but his wording made me anxious that something serious showed up in the MRI.

So he said I needed to have 4 blood tests(come to find out afterwards it was 5 blood tests but they only drew 4 vials)and if those don't indicate anything abnormal I'd need to have a lumber puncture(a spinal tap).  Great.

I asked the phlebotomist who drew my blood to give me the names/what these 4 tests were and I wrote them down.

The Neurologist had me tested me for Antinuclear Antibodies(which indicate you have an autoimmune disease), a JVC test which can indicate(a virus that can indicate you have a rare fatal, progressive disease called PML, a Varicella test or Zoster Virus(Chicken Pox)), a test for HIV and a test for Syphilis.  Really?  Do I look like Al Capone??lol

The 3 were negative except for the Varicella, it showed Zoster exposure(because I had Chicken Pox vaccine as a child and a few years ago I had both Shingles shots)so nothing out of the ordinary came from those tests.  There is no result on the JVC test on the portal so who the hell knows on that one!

So now I get to have a Spinal Tap...maybe.  Go me.

As of now I am still in the dark but it looks like I am at a higher chance of stroke and dementia and may have Small Cerebral Vessel Disease.

So we went into this MRI to rule out Parkinson's but came up with a bunch of unanswered questions, none having to do with Essential Tremor.

Lovely.

It's like my life is a nightmare and I can't wake up from it.

Sluggy