Wednesday, January 03, 2018

Distressing news...

Tonight I made apple caramel cookies for my therapist's office, salted caramel cookies for my GP's office, and peanut butter cookie brownies and butter vanilla sugar cookies for my freezer.  I had been planning to make the latter two for myself for several days, but the news I've had of late just has me despairing and the new medication I am trying for the constant shocking pain in my hands has side effects that have made life rather difficult in the physical department.

I had planned on making the cookies for my therapist's office this afternoon, but the news I received this morning crushed me.  And I spent the afternoon sitting on the sofa weeping my tearless sadness.

I finally got up the courage to ask my parents for help with my medical expenses.  In part I did so because they are no longer paying to have my house cleaned since the woman who was leading my team left the job and there is no one who has another space in her schedule.  In part I did so because I keep thinking about the money they are sending my sister for my nephew's schooling and I asked myself what made him more worthy of help than me.

The answer I received was no, buried in some talk about having medical expenses of their own and my stepfather's retirement.  The thing is ... they have been taking vacations all over the world, having recently gotten back from Argentina, following trips to Peru, Ireland, and Japan.  They are in the process of sending $100,000 to my sister for my nephew's schooling.  They regularly visit my nephews, taking them on trips for Spring Break and having adventure-filled trips in the summers with them.  They regularly visit other family members.  And they regularly visit friends and take small trips such as to a spa retreat.  In short, my parents are wealthy.  It isn't that they do not have money with which to help me with my medical expenses.  It is that they do not want to help me.

I received the news this morning and couldn't get back to sleep.  All I kept thinking about is the wording of the decline of my request, just how much they have helped my sister over the years, and all the ways that they spend money.  It's their money, though.  I have no right to it.  I suppose I had no right to ask.  But I did.  And I hoped.

I have a plan for 2018 to make up for just how much I went about celebrating my 50th birthday since I was going to be the only one really doing so.  I have a plan that is doable as opposed to so austere that I will fail to meet my monthly budget goals.  But I also have a body that is failing me in ways that are troubling.

A while back, I was looking at something in my chart and I saw that I was diagnosed as Stage 2 Chronic Kidney Disease.  Call me foolish, but that is the first time I absorbed just how troubling my kidneys are and I understood why my GP was so put out over the ibuprofen I took with the plantar fasciitis even though I gave up the Celebrex during that time.  I also realized my willingness to go from 400 mg of Celebrex a day to 300 mg wasn't all that impressive in her book.  She's trying to save my kidneys while balancing my need for arthritis pain relief and I wasn't getting it.

I got it now.

Learning that I have venous insufficiency in my legs wasn't that much of a surprise because my cardiologist was so very certain that was the cause of the swelling I experience.  That and blood pooling when my blood pressure drops and my heart rate cannot keep up with gravity.  But I admit that I am rather used to test results coming back normal.

So, I suppose ... I suppose I should have been prepared for the high resolution chest CT to come back normal, too.  It didn't.

I have patches of groundglass opacities in the upper and lower lobes of both lungs, more so in the lower ones.  The impression was either infection (my white cell count is just peachy) or interstitial lung disease (something that can happen with Sjögren's Syndrome if you are unfortunate).  The latter is just plain bad news.

Now, there is this part of me that jumped up and down to have something measurable wrong with me, but mostly I felt punched in the gut.  I had bought into my rheumatologist saying it was my heart and my cardiologist saying that it was the strain of being vertical that is par for the course with dysautonomia.  He didn't even think I should bother with the CT, buy my GP still wanted it done (as did I).  I knew that something was going on between the shortness of breath and the breathlessness.  I just didn't want that to be the answer.

It is not a good answer.

Then I went to see the eye specialist thinking I would get a good report and was sucker punched again with the news that the dryness in my corneas is no better and is a tad worse in some areas.  I am to try adding a fifth type of eye drop to my regimen and to increase dosing my eyes to every hour.  She said, ideally, I should be putting in those drops every 10 minutes, but that is not manageable.  The next step will be to cauterize my tear ducts to try and keep more moisture in my eyes.

I have been so very overwhelmed thinking about adding one (most likely two and possibly three) more specialists to my medical team and any medications they might add to my list or tests they might order.  There just isn't room in my budget.  The increase in Medicare ate up nearly all of the COLA adjustment that I got this year after having things static for the past few years.  Where will I get the money for more medical stuff?

I learned that I can save money on streaming if I pay two of them annually and so I did and set up savings accounts so that when I pay them next year, I won't take a hit from those bills.  I realized that even for the small amount of Christmas things that I do (cards and a few presents), I need to be saving all year for that, too.  Another automatic savings account.  And I switched insurance companies saving well over $100 per year, but I had to pay the car insurance up front.  A third autonomic savings account set up.

Laugh if you will at all of my savings accounts, but I cannot handle any big bill in a month.  I need them all saved for and funds set aside for when those bills come due.  And I cannot think of a way to keep all the funds separate—saving what for when—if I just dump the money all in one savings account.  Fortunately, Capital One has the same rate no matter how small your balance and no limit on deposit amounts or the number of accounts you can have.

I should say that I cannot handle more than one big bill in a month and right now that one big bill is Parkview, the medical system where nearly all my appointments, tests, labs, and x-rays take place.

I have 2018 mapped out budget wise and, thanks to my electronic register, can tell you how much money I should have on any given day of the year.  I also have weekly budget goals estimated through June, estimating specifically what will be on my credit card, so I can also tell you on what days of the month I will be spending money.  The only real luxury I have is streaming, spending $44 a month if you include the cost of Amazon Prime.  That and groceries is the only place I have flexibility.

I know I dipped into my tiny retirement fund for my haven.  But I honestly feel no guilt over that.  My daily life is quite miserable on many fronts and I built a place that makes me soothes and strengths me when I seek solace there.  Having that is crucial to surviving.

But I am determined to only dip into that meager retirement fund for medical if I have a hospitalization.  I want to make medical work on my small disability income.  I want to make all my bills work so that I am not taking from the future to fund the present.  In the best of all worlds, I would be saving even more for the future.

But there's my blasted body with crap kidneys and crap lungs and crap eyes and a crap autonomic nervous system and a crap immune system.  I'm assailed on many fronts and hardly know how to fight.

My sister asked a question the other day, wanting to know if the thousands I spend on medical is worth it since I have incurable disease and conditions.  She surprised me and I thought that was a good question as I could see how that question could be in the minds of my family members.

I am humbled by my new GP and feel as if all the things she has done medication wise are geared toward making some things in my life better.  Some of the pain is better.  It is still present, but muted somewhat.  I've added a slew of mediations this year, but all are ones that have a measurable impact, save for the one we are trying out now.  And none of my doctor's are into testing for testing's sake.  I think we've been extremely conservative in that front.  I think the only extra spending I am doing is that the cardiologist would go to thrice a year visits, but I want to stay with the quarterly ones.  That means an extra $45 a year there.

So, I could answer her in the affirmative.  And her question was good in that I want to make sure that I keep asking it as I move forward, especially with how Sjögren's is ravaging my body.  Because, basically, I do not believe that going into medical debt is a wise course of action unless there is some life-shattering event, such as a car accident that is out of your control.  I don't believe in seeing any doctor without being certain of paying his/her bill.  The same goes with testing, imaging, and labs.

How do I pay for all the medical?

Devastated at my parent's response, I reached out to my sister.  Mostly, she just kept me company all evening, chatting about this, that, and the other, none of which having anything to do with medical expenses and asking for help.  But she did ask me how I felt.  It was hard to answer her and something she had said is what I was thinking, too.  But after I said that I felt worthless and unloved, she said she hoped that I could get to a place, beyond the hurt I am feeling now, where I could see that my parent's response has nothing to do with my worth as a human being.  Normally, I want to scream:  GIVE ME TIME TO FEEL WHAT I FEEL.  But her saying that I am not worthless was helpful to hear.  Something I think would help to hear more often!

My parent's decision not to help me when they clearly could do so is not a reflection of who I am or what I am worth.  My sister's emphatic statement with those two points was a balm to my heart.  But I am still feeling what I am feeling.  I am still so hurt and still wonder why I am not worth such a small fraction of the help my sister is getting for my nephew.

But I suppose that hurt is sitting on a foundation of hurt that my family, aside from my sister, has not taken the time to learn of the things ravaging my body and making life so very, very hard for me.  I want them to care and to support me in this battle that I am forced to fight.  I want to not be the only one managing all the medications and weighing what to take or do medical and what to not pursue because of cost or return on investment.  I want the words dysautonomia and Sjögren's to be their words, along with all the words that fill life in both of those worlds.  Instead of "How are you doing?" I want to hear "How was your last doctor visit?" or "What is your testing showing these days?"  "Or how is your battle with PTSD going?" or "What are ways in which I can support you?"

I want a Team Myrtle and I want my family to be charter members.

My therapist and doctors keep asking about Team Myrtle.  I mention Becky's help with filling my medications and my friend Mary's reframing of troubling things from therapy and Amos' love and affection.  They sigh, saying that's not really a Team Myrtle.  I know that.  But I cannot make my family care.


On a separate note, before I forget, I want to say that this is the first year that I had a lot of Christmas cards.  My dear friends all sent ones and some of my family.  I was surprised and heartened and have savored looking at them up on the plate rail in my dining room.  I didn't realize that Christmas cards could be such a comfort.  I am deeply, deeply grateful for all of them.

No comments: