Thursday, November 16, 2017

Adding my voice...

I joined Instagram.  The link is here.  I thought that it could be a way to interact with the larger world and help me to focus on ... something outside myself.  I am not so much wanting to pursue advocacy about chronic illness, but I thought I could share some of my journey with invisible illness.  And I could combine that with my love of photography.  Although ... I don't think much of my photos.  They certainly do not rise to the level of being photography.

And I already have a couple of followers!  I actually have more than two, but one of the others is a friend and the rest seem to be businesses and/or gurus in the chronic illness world.  I am not sure why they would follow unless to get an idea from me.  Hah!  Think it will be slim pickings in that regard.

I actually got the idea from one of those Facebook challenges that is currently making the rounds.  The idea is to post seven black and white photographs of your life.  No titles or explanations.  I didn't realize you are also not supposed to post photos of your children or your pets.  I posted one of Amos, but he is more than a pet.  And he is a large part of my life.

I think that my dear friend Becky did a much better job than I did on the challenge.  She was more artistic and deep with her choices.  I particularly loved the ones of her piano and the mantle clock.  Of course, I might know a bit more of what those two represent than most do.

Anyway, I posted my black and white photos on Instagram, with a bit of an explanation and hashtags that fit what I was trying to show.  I liked what I was able to share and felt like I do when, here, I can write what it is that I am trying to say.  Such is rare.  But, on Instagram, I can use a photo to take some of the burden of words.

In this post, I was emptying my dishwasher and was struck by how my top rack had changed, had turned into a portrait of sorts of how gastroparesis has changed more than just my body.  I have a gazillion custard dishes and a gazillion glass storage containers.

The first I have because I have to primarily eat small meals.  The second because I have to keep food as fresh as possible.  Because the fresher your food is the less bacteria is growing on it and the greater chance it will digest more smoothly.  Plastic is more porous than glass.  Glass storage containers keep food fresher and keep it longer.

I have to worry about things like is my food fresh, but I also have to worry whether or not I have enough glass storage containers!  This is partly because I run the dishwasher just once a week and partly because of the way that I cook.  For example, I will poach two chicken breasts to get four servings of poached chicken.  I will put each serving, whilst still warm, in a separate snapware glass  container.  I use the one-cup size.  That way, there is no air added to the chicken from opening and closing the same container.  And each container maintains a seal of sorts having been closed on the warm chicken.  So, my poached chicken lasts longer, still tastes good, and doesn't set off malfunctions in my innards.

Of course I do wish I were an artist.  I wish I could capture in a photo some of the depth of the challenge of being chronically ill.  I'm sure an artist could have done a better job at capturing what I saw whilst I was piling up the glass ware.  And yet I am not unpleased with my small effort.

I think it might be a good thing—for me at least—to add my voice to the Instagram world.

Wednesday, November 15, 2017

Getting me some ferns...

I have two hooks on my front porch for hanging plants.  There are more, actually, but two in the front that I use.  A few years ago, my mother bought lovely baskets for them.  So very lovely.  But large baskets are expensive, so I have tried to make my own ever since.  The first time I did was a dismal failure, but my second attempt went well ... at first.

I had Wandering Jew baskets that I made from a single broken piece from a plant my dear friend Becky bought during her visit.  They were terribly scraggly the first year, but were spectacular the second year, after wintering them in my living room.  The third year, they grew scraggly and I just couldn't stay on top of them.  So, I gave them up.

This year, I bought fuschia baskets at Walmart.  They were very small, but pretty.  The thing is that they never really filled out.  They stayed small all summer.  Pretty bloom after bloom, but small.

Here they are just a week ago, when we had the first really cold night.  When I found them still alive in the morning, I decided to winter them in the solarium to see if they might could finally take off.  So, first I decided to do a long, deep soaking before taking them upstairs.  I also gave them some fertilizer.  I am not sure they will like the cold sunshine that is my solarium in winter, the way the succulents revel in it.  But I thought, if they survive, I would try them out in my haven next summer.

For my front porch, next summer, I am finally going to get a couple of ferns.  I love ferns.  And I love, love, love the look of ferns hanging on a porch.  There are two houses on my block who had them hanging on their porches this summer.  I admired them every opportunity I could.

After dwelling on the matter some as things were kind of imploding, I thought that I was going to give in and just get me some ... that I was going to stop counting the cost on something that would give me such bliss in this wretched life.  Next spring, I am going to buy ferns!

And probably post a gazillion photos of them if I can keep them alive.
Silly Myrtle.

Tuesday, November 14, 2017

Medical update...

Today was my GP appointment, something that was delayed this month and which couldn't have come a moment sooner.  It was hard for me to wait.  And, of course, I went over on my appointment.  I really need help with being more timely.  SIGH.

The first bit I want to discuss is going over the problem with the wretched constant shocks in my palms and fingertips.  I learned that it is unusual to be bilateral (both sides), so that probably points primarily to neuropathy, something which I am 99.99% sure it is.  I was glad to learn that she did not think it related to either the migraine or the sumatriptan.  

The first two options were the ones I thought we might come to as a decision.  However, my GP offer two more to the pot:

Option #1: Waiting to see how the increase of gabapentin goes.  My GP said that we might expect to go to 600 mg thrice a day if the increase from 400 mg to 500 mg doesn't stop the constant neuropathy.  I had a great decrease in overall neuropathy after we increased from 300 mg to 400 mg.  So, a part of me is hoping a one- or two-step increase might do the trick.

Option #2: Add an SNRI to the mix to see if it would make a difference in my neuropathy treatment.   I have been reading up on Cymbalta because that is most often mentioned in the nerve pain support groups I participate in on Facebook.  I am of two minds about trying Cymbalta, because of its side effects and its addictive nature.  My GP said that I could try Cymbalta or I could try Effexor. She gave me the homework to research Effexor and ask about in my support groups since I am not familiar with it the way that I have learned about Cymbalta.  Either one should work and the choice to try either one is up to me at this point.

Option #3: Have an MRI of my head and cervical spice to be sure that there is not something else that needs pursuing.  I have been worried about this ever since I had the pacemaker implanted, but my GP took the time to look up how we would do an MRI with my pacemaker. I would go to the pacemaker clinic and have my pacemaker put in MRI-mode (sort of like putting it to sleep). Then I would go have both MRIs. Afterwards, I would go back to the pacemaker clinic and have the pacemaker put back into normal mode (wake it up). It sounds doable. Just a VERY long day. And this WIMP would still worry about being in the MRI machine. So, I was a bit thankful that it was too late to call Parkview Scheduling today. I will note that hospital MRIs are more expensive than stand alone clinics, but I do think that I should get them done at Parkview because of the pacemaker complication.

FOUR: See a neurologist. Since I have had less than positive care from neurologists in Fort Wayne, I am not so much interested in that one. I also know there is not a whole lot more to be done at this point. However, I spent some time reviewing the doctors on my plan. There is one I have seen before once, who is female. There is another who has Parkview privileges and who has good reviews, but is male. The one my GP recommends is out of network. I am considering trying him, even though it is much more money, solely because several of her patients really like him. All that is to say, I have done some homework and am open to dipping my toes in the neurology waters again.

That covered my body shocking itself, but there was ever so much more to address.  My cardiologist is still leaning away from my heart being being behind the shortness of breath and the breathlessness.  I really wanted him to do an evaluation of my heart function, since the BNP test results were high, but all he did was offer to do another echocardiogram if I wanted one done.  Yes, well, I felt condescended to with that and will not be asking for one.  I'll wait until he wants it.  I do wonder if I can have the blood work repeated.  In any case, I was very, very, very thankful that my GP would like to be cautious and rule out Sjögren's Syndrome affecting my lungs at this point. So, she ordered a high resolution CT scan of my chest. Part of me really, really wants an answer. But that would be just about the worst answer I could get at this point. So, I suppose I am crossing my fingers for a normal reading.

What I haven't really written about is that I have been 99.99% certain that I had plantar fasciitis in my right foot.  It got so bad that I stopped walking on the treadmill 15 days ago and started a comprehensive scope of treatment: twice daily ice, thrice daily stretches, twice daily exercises, compression sleeves, anti-inflammatory medication, and rest.  It turns out the plantar fasciitis is much better, but the way that I have been walking compensating for the severe pain means that I now also have tendonitis in my right ankle. SIGH. Tomorrow I start a 10-day course of prednisone to deal with the pain and continuing inflammation. My GP said that I will probably be in the least amount of pain since my body started attacking me. However, she already warned me that she will not be giving me a monthly pack of prednisone.  My fervent hope is that the BIG GUN of the prednisone pack and continued icing and rest will get me back to walking on the treadmill on the 26th.

Who knew that torturing myself on the treadmill would have helped my beleaguered mental state?? I find that I miss it and I deeply, deeply miss not being able to work on trying to mitigate the incredible weight gain from taking gabapentin. I walked for 9 months in the neighborhood and only continued to gain weight. Two months on the treadmill and I had started a downward trajectory on the scale.

No more. The increase in gabapentin and the lack of treadmill torturing has me gaining weight again. SNIFF. SNIFF.

We also did a fall assessment worksheet from my Medicare Advantage Plan.  I dislike jumping through hoops, but I have been working on finishing up the 2017 Healthy Rewards for my Medicare Advantage Plan. So, far, I have earned $40 in gift cards (I chose Amazon since that is where I get my theanine) by doing the eye exam, the flu shot, and (today) the fall risk assessment. On December 8th, instead of my normal monthly visit, we are going through the Annual Check Up visit even though I see her every month. That will earn me another $15 in rewards.

With the $40 so far in my Amazon account (I just redeemed three rewards), I am going to get something for my tub to help me be more stable in it. My GP recommended this mat because it is what she uses. I ordered it since it is user-tested by my GP. She also has those stick on ones, but my GP said that they do not provide the stability that the mat does. I also like that the mat can be taken out and cleaned when my tub is scoured.

My GP gave me a lesson on balance.  Balance is affected by 3 things: 1) eyes, 2) ears (inner ear), and 3) feet. If one of those is unavailable/compromised, the other two should compensate for the loss ... unless one of those is also compromised.

We talked about how I often fall in the shower when my eyes are closed (washing my face and rising my hair). She surmised that I am not getting a good enough feel of the ground beneath me because of the neuropathy I have. This theory is mostly likely correct because I feel most secure in the tub the first week after the Household Magicians clean it. It is like I am standing on Gibraltar. A few showers later I no longer feel secure. The mat should help with that.  I am hoping it does.

We also went over a few other smaller issues.  I had been saving up a lot since I missed my appointment the first week of November.  Next month, I hope to be just on time since we are doing the annual exam.  Although, if I have test results before then, I would like to hear about them.  Even with that, though, I do want to stick with one hour.

I will note that my blood pressure during my visit was 80/60.  The nurse kept thinking that it was an error.  I laughed and told her that is what can happen with NCS.  Funny how that doesn't even worry me anymore.  A part of me was actually glad I had a really low day, because doctor's office syndrome ususally makes me the opposite with all my worrying.  This way, I have something more like the readings I have at home.  Still, I wonder what drove it so low today.

Finally, I will say that I made my doctor's life better in one way.  I had told her about the Awesome Note app, which I adore, because of the stress of having to try and restore all my notes.  She went looking for a similar app and found a free one that she likes.  So, now she had more organization in her life and an even better use of her smart phone.  I really like that she share that little blessing with me because she's been a huge blessing to me.  I like knowing I've been a small one to her.

Saturday, November 11, 2017

Puttering about the yard...

Last night and today I worked on prepping the yard a bit for winter.  Our weather has been so very wacky that my weigela didn't stop blooming until yesterday when it froze.  It was rather massive, so Firewood Man suggested that I prune it back to about a two-foot ball.  I have pruned it every save for last year.  I liked the growth that I saw this year, but it out grew the corner bed where it is by the end of the summer.

I also cleaned out the rest of the original raised bed and my raised bed 2.0.  The second round of carrots were still in the original raised bed.  Even though they are supposed to be ready to harvest at 75 days, I left them in the bed until the tops froze on day 97.  Clearly, I am not skilled at growing carrots.  SIGH.

I also pruned back the rose bushes.  One of the new ones died and I pulled it out, but I never got around to replacing it.  I very much wanted to do so, but I kept thinking about that terrible injury to my back the last time I tried to dig a hole.  SIGH.

What's left is to prune back the burning bushes.  I do that every fall, but the leaves haven't dropped yet.  It is far, far easier to shape them when they are bare.  So, I am hoping they drop soon since we've started to have a spate of weather too cold for puttering about the yard.

My final chore was to put away the two fountains.  For the one in the haven, I had a rather difficult time emptying it.  I think I could have built it in a better manner so that breaking it down is much easier.  I have the winter to think about that.  For now, I struggled to pick up the upper pot since it was full of water and the pump was connected to it.  And emptying the larger bottom pot was quite difficult, since it was incredibly heavy and I was trying to direct the water away from my shoes!  I should have changed to my gardening shoes first.  But I got the fountain emptied and moved into the garage.  The pump is drying out and then I will move it to the basement.  I learned the hard way it is best to not freeze your pumps.

I wore my gloves for all the pruning and bed work, but I foolishly took them off before taking apart the fountain on the front porch.  The mini-mountain is made out of a faux pumice or something like that and it cuts your fingers and hands and arms and pretty much any body part that you get near it.  I basically shredded my right pointer finger.  And I realized why it is you don't buy generic medicine.  Neosporin has pain relief in it!  The generic version I grabbed does not.  Be a better shopper, Myrtle!

Last night, I did not sleep much because I kept having sleep paralysis with my night terrors.  It has been a while since I was trapped in my body because of my dreams.  It is a horrify experience that is difficult to explain.  And it got me thinking about nerve pain ... because I didn't want to think about my night terrors.

Like the bouts of sleep paralysis, Trigeminal Neuralgia is such a lonely, lonely condition.  Its pain is truly ineffable.  Even when it is wreaking havoc in your life and driving you to despair, describing it seems impossible.  How could this pain in the side of your face fell you so? It attacks you so suddenly, gripping your whole body even though it is in your face.  For me, each time, I fall to the ground in the grips of its agony.  There is no room for thought or feeling or any kind of sensibility.  There is only the pain.  And when it is over,  I am numb with shock.  When the shock passes, it is hard to do much because of what I just went through.  And I try not to think of what I just went through, because if I did I would ... I would want to die before going through it again.

I cannot fathom how it is for those who suffer constant neuralgia instead of its flares.  

Friday, November 10, 2017

More days lost...

More days lost.  SIGH.

Mostly, I've been taking care of things.  I called GE and got an appointment for my new stove.  It took me months and months and months to figure out why it is not broiling evenly.  The broiler isn't lit evenly!  A no brainer, I know.  But it took me forever to realize that.  I've got less than two months of warranty left, so I wanted to have someone come out.  Of course, it took me a few weeks to work up the energy to make that call.

Then, sadly, the only appointment was for the morning hours. So, getting up for that was taxing and recovering from both the stranger in my house and the early morning was the same.  Just typing that wearies me.  The upside is that the broiler is going to be replaced to ensure that it is not the part as opposed to how the model works.  If it is the model, I shall be a bit disappointed.  I really do adore cooking with gas.  I suppose I could learn to rotate the pan whilst broiling.  Maybe.  Another thing to remember.  SIGH.

Then, I had to work up the energy to call Whirlpool again.  The parts were replaced at the end of September on repair trip #3 (each repair actually takes 2-3 visits to the house) and there has been no real change in the refrigerator.  It still freezes my food and is sometimes much warmer.  Personally, I think it is that it is the damper, even though it has been replaced twice.  I think that it is a faulty part that Whirlpool hasn't resolved.  But, then again, what do I know about refrigerators?

Finally, I am being referred to the unit replacement program.  I have yet to hear back, but some time in the next 3 business days (since 2 have passed) I should receive a call from the program.  I am a bit skeptical, after all this time, that things can work out.  However, it would be a great relief to have a reliable refrigerator again.  One less worry to have on my plate.

I have also been working on my prescriptions.  As I mentioned the other day, I have been working on looking up other options for nerve pain management that might be viable ones for me.  A lot of folk in my Facebook support groups are deeply worried about having their opioids taken away from them. Already they are facing terrible obstacles toward getting (and taking) their current medications (mostly in the Pudendal Neuralgia and Trigeminal Neuralgia groups).  That pain is so bloody severe that often opioids are the only thing that works.  For many of them, the opioids do not even take away the pain.  They just lessen it.  Genuine chronic pain patients are caught in the movement to combat addiction and it is terrifying for them.

Something that comes up again and again is the idea of having counseling to learn to live with the pain.  Mostly cognitive behavioral therapy is what I see.  Whilst that sounds good, it is more complicated that something that seems reasonable.  For some, it is the easy way out for doctors who are not understanding or believing of their pain.  In the Pudendal Neuralgia world, this is especially true.  Even though everyone has a pudendal nerve, some doctor's doubt is can cause the debilitating pain that it does.  Funny that since other neuralgias are recognized.  SIGH.

Plus, it is utterly devastating to hear that nothing more can be done for you.  Going into counseling has to be the patient's choice.  But more and more pain management clinics are making it a requirement to continue receiving the same treatment that a patient has had for a while.  Essentially, they feel their pain medication is being held hostage.

Sometimes, I get that.  I mean, from the time I started taking Xanax to the end, how it was given changed.  At the end, I had to get a prescription every month or so.  And it was extremely stressful because the drug is not something you can stop cold turkey.  I was on a relatively low dose and yet I was treated as if I was some kind of junkie.  What I could get, the length of time between having to what felt like begging for refills, dwindled.  I had wanted to get off the drug for a while, but every time I asked for help, my request was brushed aside, even when I talked about how stressful it was to always be in limbo over whether or not I would be able to get more Xanax.  SIGH.

So, a bit of that ... continuing coverage concern ... still lingers with me.  I am now taking three medications that cannot be stopped abruptly.  Managing those prescriptions is stressful to me, even though I am in the best of situations right now, with good doctors who are good listeners and are supportive of my care.

For the baclofen, we increased that last month, although I put off starting the gradual increase for two weeks just thinking about the side effects I would experience again.  Then, it was trying to get the prescription changed to the 10 mg pills, which are both easier for me to swallow and are cheaper.  Today, I receive my bottles of the next shipment and they are the 10 mg ones.  Yay.

For the gabapentin, I had to end up asking via the messaging system, for an increase because I just CANNOT STAND this constant shocking in my hands.  There was a bit of a miscommunication, so the original order was not sent in, but I got that one re-sent.  I am now one week into the gradual increase of that drug.  Being extra cautious with that one means a much slower increase.

Then, I had a bit of a panic about the gabapentin 400 mg pills because I am nearly out of them and will need another bottle before I fill my meds a week from Sunday.  I had forgotten to order them when I noticed the dwindling supply when I was filling my meds last Sunday.  That forgetting, when I discover it, grieves and distresses me.  I had to go through all my meds and figure out which ones I needed from the mail order pharmacy to get that order done.

Then, I needed to have my hormones refilled, only this is a new prescription and it was not entered in correctly last time, so I was trying to figure out if it was corrected before I tried to refill it again.  That was a bit of a management process.  But I am glad to say that those are ready to pick up once I can drag myself out of the house.

Finally, I was working on my sister's birthday box.  I have been a wretched sister when it comes to celebrating her birthday my entire adult life.  My family doesn't really do birthday celebrations, not like I see in other families.  I find it hurtful, but I never stopped to think about how my sister found it.  That's why, when I realized she had no celebrating of her 50th, I decided to share mine.  Thinking about that still, I wanted to send her something good for her birthday.

She was appreciative of my newfound lemon pound cake skill and I got the rather brilliant idea of sending her one for her birthday.  And, because the box needed filling out, I also made her some of those bloody fantastic brown sugar oatmeal cookies and some of the maple chili roasted sunflower seeds.  Finally, I took care to wrap the present I bought her to make it extra special pretty.  Now, to be honest, I shall admit that I reuse wrapping supplies like nobody's business.  I haven't bought anything more than a gift bag in well over a decade.  Still, I think that I did a good job.  And then I got the box packaged up and off to the post office today.

All of that ... well ... I am exhausted.  And so I sit, trying to ignore the constant shocks taking place in my hands, and think about blogging without actually doing so.  Who would have thought that I would come to a place in my life when I am too exhausted to write.  SIGH.

Oh, this wretched life of mine!

Tuesday, November 07, 2017

Prescription bargain hunting...

I am blessed with a GP who is willing to help me work on the best prices. She will look up things on my formulary and try to find options on Tier 1 and Tier 2. She will also make changes based on free programs (such as changing me from Advair to Dulera) and based on pill pricing (the 10 mg of baclofen is much cheaper than the 20 mg pill, so we changed my dose to two 10 mg pills at a time instead of using the 20 mg pills so I have less of an impact on my Medicare prescription spending total).

I currently use four different local pharmacies and a mail order pharmacy. At the local pharmacies, I switch between using my Medicare Advantage Plan and GoodRX coupons depending on the price. I also get three prescriptions for free using the manufacturer's patience assistance program (Celebrex, Combivent, and Dulera). All of those free ones are Tier 3 drugs and would take me to the donut hole around April if I didn't get them free, making my medication costs soar out of reach for me, being on a fixed disability income. With the assistant programs and my bargain hunting, it is November and I am still not yet in the Donut Hole.

So, right now I am considering asking my doctor about Cymbalta (duloxetine) to see if it helps with my nerve pain. I spent much of today looking it up on my formulary, calling for the price it will be charged to my insurance, seeing what it will be using a GoodRX coupon, and seeing if the manufacturer (Lilly) has a patience assistance program (it does, but I do not qualify based on my medication spending). In this case, my insurance co-pay would be $45 and the cost to insurance (charged against my medication total before reaching the donut hole) would be around $100. However, if I use GoodRX, the price will be $19.50 AND, being cash, it will not be charged against my medication total (a total win in my book). I will be taking the GoodRX coupon for Meijer Pharmacy to my next GP appointment to ask if it is time that we add Cymbalta to my drug regimen.

For the newbies to the Prescription Bargain Hunting game, to sum, the things I do are:

1) Ask the doctor for other options in that drug class in case I find a cheaper one when I do my drug pricing research.

2) Look to see if there is a manufacturer patient assistance program or coupon for my drug and for the other option drugs. The programs usually based on some combination of insurance (or lack thereof), income, and total prescription spending.

3) Check my formulary for my drug's tier and then look up the similar options to to see if there is a cheaper tier. I asked my insurance company for a stand alone copy of the formulary and bring it to all my medical appointments.

4) Check GoodRX to first see if there is a price different between the pill sizes to see if there is savings to be had by taking more pills at a lower dose (like two 10 mg pills to get a 20 mg dose). Then I look to see if the coupon prices are lower than my co-pay. Finally, if I am going to be using the GoodRX coupon, I check to see which pharmacy is lowest at the dose I will be taking.

5) For my maintenance drugs, where possible I try to get 90-day supply from the mail order pharmacy. This is because Tier 1 and Tier 2 drugs are free in 90-day supplies on my Medicare insurance. Many insurance companies have a mail order pharmacy that is cheaper in 90-day supplies. However, my mail order pharmacy is always more expensive where I have co-insurance (a fluctuating amount usually based on a percentage) instead of a co-pay (a fixed amount). So, I only use it for Tier 1 and Tier 2 drugs where they are free. Thus, it is important to do some research on the cheapest way to use your specific mail order program.

5) Every time I get a refill and that refill will be using insurance, I double check GoodRX to see if the cash prices are better because drug prices can really fluctuate. If I am already using GoodRX, I do another search in case switching pharmacies will save money. For example, last month the hormones I take dropped from $15.27 to $9.80.

6) To every doctor appointment, I bring a chart of all my medications that shows where I buy them so that when I need refills sent, I know what location/method is the cheapest. I also bring a copy of my formulary in case we need to look up new medications.

7) For every new prescription where I will be using GoodRX, I get a paper prescription so that I can bring the coupon with me. If the doctor's office hems and haws about paper because their policy is to use electronic prescriptions, I very calmly and bluntly say that the only way I can afford that particular medication is using GoodRX and when starting up a new prescription with a pharmacy paper is best ... the smoothest process. I've never had a doctor refuse to give me paper once I start talking about trying to afford my medical expenses. Once GoodRX is in a pharmacy system, the coding will stay on the refills. But if you have a new prescription because you are out of refills, it is best to get a new paper prescription instead of having that new prescription called in so as to avoid the problem of having the new prescription run through on insurance instead of GoodRX, even though it was run through on GoodRX previously. Insurance seems to be the default entry of most pharmacy computer systems.

This is exhausting, but it is necessary if you are on a fixed budget.  And, to me, it is really necessary for anyone looking to save on their prescriptions.  Unless your co-pays are really low on the upper tiers of your plan, checking out GoodRX is prudent.  I have saved ever so much money using it even with prescription coverage.  And, with the two prescriptions I have that are not on my formulary, GoodRX saves me a substantial amount each and every time I pick them up, especially the benzonatate.

I am grateful that I found an more economical way of paying for cymbalta should my GP choose to go that route with nerve pain control.  GoodRX is $24.50 cheaper, per month, than my Medicare Advantage Plan insurance.  Of course, I would be even more grateful if the nerves shocking me would stop!  SIGH.

I've said it before and I'll say it again:  dealing with chronic illness is the work of a graduate degree.  Really, it is several graduate degrees, such as Prescription Management, Insurance Claims Management, and Illness Specialities.  When you battle chronic exhaustion, working up the energy to throw yourself into the prescription or claim or treatment fray is daunting.

Sunday, November 05, 2017

Never assume...

My security system company is having growing pains that are really, really, really frustrating.  Trying to get to tech support these days often requires an hour or more on hold.  This from a company whose business model is based upon customer installed systems.

I called for one problem and learned that my system is still under warranty.  That means that I can still get an inset sensor for the basement entry free of charge.  When I had the other two door sensors switched out immediately after getting the system, I somehow overlooked the basement door, the first door for which I had to jury-rig a means of attaching the sensor.  I have never felt comfortable with my solution for the sensor and was grateful to hear that I could have an inset one ... the kind that you drill into the top of your door and the bottom of the top of your door frame so that the sensors are inaccessible to the common thief.

Tonight, Firewood Man came over with his 3/4 inch drill bit and took care of the installation!  My doors were made onsite back in 1920, so the wood is HARD.  There is no way that I could have drilled a hole.  Plus, the new sensors are twice as long (deep) as the ones I received nearly two years ago.

All three of my doors have glass in them, so I have a double-keyed deadbolt on them ... where you have to have a key on both sides.  The front door is an oversized French door, and I think, even with all that glass, would be hard to destroy because of that hard wood.  The back and basement doors are ones with large single pane.  So, I didn't want a sensor that was easily viewed from the outside.  Thus, I already feel much safer with the sensor installed.

I keep thinking about seeing to the cost of a motion sensor in the basement, because I would like the advanced notice if someone managed to break the glass and crawl through it, go down the stairs, into the other room, and back up the basement stairs to the kitchen.  However, once there, the intruder would set off the motion detector.  That's probably why I haven't taken that step.

The other thing Firewood Man did was to get the window above the treadmill and recumbent bike open for me.  There was this crazy long, ancient bolt being used as a window security pin.  I got the left side out, but not the right.  He finally got it out, but the window wouldn't open.  When it finally did, we realized we had never cut through the paint from this summer's paint job.  That window now needs to be painted again.  SIGH.  However, now I won't be so stinkin' hot whenever the heat kicks on whilst I am torturing myself on either piece of exercise equipment.

I was trying to figure out how to hold the window up because it was resting on Firewood Man's head whilst he worked on cleaning up the paint and stuff that was making it hard to close the window back up.  When I said that maybe I should get a hook and eye doohickey, Firewood Man suddenly said I wouldn't need one.  He'd already noticed the hook attacked to the window and found the eye in the joist above us.  I think I would still like something I could just wedge in the bottom to keep the window open just a bit since being wide open won't be necessary in the dead of winter.

I was too chicken to ask about the window opposite this one, even though I know the value of a good cross draft.  When I checked myself later—looking not working—I spotted another hook and eye.  I will try to remember to go and cut the other four basement windows from the outside before I try opening any more from the inside.  With two entrances to the basement, one being an outside entrance, I never worried much about opening the windows.  But I now need some cold winter air by the treadmill at least.  Mission accomplished.  I can worry about the rest later.

Before he left, Firewood Man shot the breeze with me a bit.  He knows how lonely I am and gives me some time whenever he can.  It is sad, to me, that he feels less safe in my neighborhood since he first started coming over to my house.  The whole city is less safe, but so is my neighborhood.  It is weird to look around at my beautiful old house and think about the decline of the neighborhood happening all around it.  Not a heavy decline, but a marked one nonetheless.

That is why he was so willing to come over as soon as possible to switch out the sensor.  He fully supports both making the house safer and helping me to feel more safe.  I like that about him.  And that he mows.  And his firewood.  And his countrified patience and mercy he always shows to me.

To me even when I block the door because I was peeved he didn't have the sawzall with him, my solution for the window bolt problem.  He didn't have it with him because he wanted to eyeball the problem.  I was so certain it was needed I was miffed and sulked quite a bit as we went downstairs to the basement.  I was equally certain the entire time he was working on the door sensor and left him to his own devices for the first time ever when working in my hope (I'm a side-seat driver even in home repair).  I was so certain right up until the moment he pulled the bolt out.

But you know what they say about assuming something.

He was right to wait and see.  I was wrong about what tool we needed.  Instead of a sawzall, we needed a painter's knife, a cutting blade, and locking pliers.  I was wrong and he was right.  SIGH.

But let's not focus on that.  Let's focus on new sensors and open windows rather that how we got here.  And the blatant reminder lesson I got about making assumptions.  And how mercifully that lesson was given despite my sulky ways when I was certain I was right.  I don't deserve the blessing that is Firewood Man to me!

Oh, and if you need help programing an IQ security system panel?  I'm your gal.  No question is too small or two embarrassing.  My especial skill is to add and delete sensors.  But I can also run tests and customize the system for you.

Ah ... the things you learn as a homeowner!

Saturday, November 04, 2017

Being tortured...


It is difficult for me to concentrate on anything.  And it is difficult for me to be fully sensible ... or at least as sensible as I am capable of being.  A large portion of my brain is caught up in being shocked. In managing the pain and surprise and jerking of being shocked constantly.


Last night, I started an upgrade to the gabapentin.  I'm going from 1,500 mg to 1,800 mg, 100 mg a dose at a time.  It should take about 2-3 weeks.  I am hoping ... fervently ... it will make a difference.  But when I think about the last constant neuropathy I had, the bee-sting pain and itching with the pacemaker incision, I am discouraged because it was 18 months of increasing and increasing and increasing gabapentin—and gaining weight—before first the pain and then the itching ceased.  I cannot fathom living with being shocked by my own body for a year or more.


More than anything else that has happened to me, I feel like I am being tortured by my own body.  SIGH.

Thursday, November 02, 2017

Flashback revelation

Therapy today was good in that the therapist enlightened me a bit about why I have been so upset over something that I know is not what happened.  She told me that the way I described it to her ... far more detail than what I wrote here night ... was someone describing a flashback.  That surprised me.  I mean, I thought I knew what flashbacks are, considering I have them a lot.

To me, the strange thing was that I had a flashback on Monday that was par for the course.  I was in a parking garage basement and I heard a noise that startled me.  BOOM!  I was right back in the parking garage where I was raped.  I could smell the urine on the ground and feel my head slam against the concrete.  There was pressure all along my body as I was forced against the wall.  I screamed and screamed and then fled into the floorboards of the back seat of my Highlander.  I wouldn't have thought I could squeeze myself down there, but I was trying to hide.

It felt like ages for my body to calm down and even longer for my mind to leave the past.  I am proud of myself for going inside to get my blood drawn.  It was one of the few times I wasn't transparent on Facebook, for I was ashamed at how afraid I was.  I just posted about my blood work being done and moved on from there.  No mention of the bruises I have from jamming myself into my vehicle.

Of course, I will not be going back to that lab unless I am already at my GP's office up on the 2nd floor.  If so, then I could take the interior elevator down and back up.  Otherwise, I am going back to the lab on Liberty Mills.  It's a stand alone, single story building that has no ... triggers.

When the cardiologist touched me the third time, I went cold all over and became full of fear.  I slipped into that shut up/be still/wait until it is over mode.  I felt my whole body screaming at me to leave.  And, as I have said, I had this thought of being groomed.  A thought I haven't been able to escape even though I know it was not what happened.

When I started, I told her that I HAVE to figure out how to change that thought by the end of January because I can NOT walk back in his office thinking that way.  I have been rather distraught over that.  And a bit despairing because changing thoughts has not been a skill of mine, despite working hard to acquire it.

However, with her ... revelation ... this is not so much a thought I have to change as to re-categorize.  I already know that when I have a flashback, I can be a tad insensible.  And it is insensible to think that my cardiologist was grooming me.  He's proven over and over and over again that he is committed to make me feel safe and worthy of care, even when doing so disrupts his rather busy schedule.

It wasn't so much talking about it being a flashback in the session as it was that revelation and all that it could mean soaking in on the way home and since camping out on the sofa.  I don't need to change the thought so much as to understand why it happened.  It is not exactly a wrong thought.  It is just a thought from the past, not the present.

I can work with that.
There is hope with that.

I already know I cannot believe my body during flashbacks.  So, I think that if I focus on what happened being a different kind of flashback, especially since part of me stayed there and still functioned, I should be able to eventually leave last Thursday's appointment in the past and not keep it in my present.

I am not sure if that makes sense, but it does in my mind, which is most important.  A flashback is not reality, which I already know.  The upsettedness of flashbacks eventually end.  Now that I understand that was what was happening to me and what skewed my mind ever so much, the end will come.

In a way, maybe the constant shocking in my palms and fingertips will be of service just now, as I am greatly distracted with them.  Very, very much so.

Wednesday, November 01, 2017

From childhood's hour...

I know that this is not what Edgar Allen Poe had in mind when he penned these lines ...

... but think about a child who has been sexually abused repeatedly and read them again.

When I saw this image, that was my first thought.  That this was a meme for adult survivors of childhood sexual abuse, but it was not.  It was just a poetry meme.  Only, for me, that is exactly what the image was ... is.

Were I a poet, I could have penned these words and they would have been about my past.  About how I was as a child.  About who I am now because of that.  I wish that I could pen the words in my head as a poet.  For me, I can only fumble about whilst I try to find the words to make them make sense for anyone other than me.

My cardiologist knows about my past, not in detail but as a concept.  Because of that, since the beginning, he has not had his nurse deal with me first collecting my symptoms, but has taken them himself, so that I would learn to deal with him.

When I had my pacemaker surgery, he was very, very, very accommodating for me.  For one, I wore a bandeau bra into the surgery and he worked around it.  For another, he had an all female support team.  And he made sure the hospital had all female staff for my care.  There was one snafu with the tech sent for the in-hospital pacemaker interrogation, but, upon reflection, I am not sure it is realistic to have expected perfection with the hospitalization.  And I could have refused his service.  Well, if I were a different person, I could have.  The possibility was there.  I am not sure my cardiologist could have prepared perfectly because I am not sure he's ever had a patient like me.  In any case, I don't blame him ... which is big for me.

But something happened last Thursday during my appointment that has me deeply, deeply spooked.  It was something that was innocent and actually, upon reflection, probably good for me, but still I am distressed.

During my appointment, my cardiologist touched me three times.  He very purposely does not touch me and when he's near me, to listen to my heart, he asks my permission to approach and to lift my hair and just about anything he does.  When he's not listening to my heart, he sits pretty far away from me.  So, for him to touch me the way that he did was pretty unusual.

In my head, I know that he has spent years being patient with me and working up to me trusting him. But, also in my head, my first thought after the third touch was "He's grooming me!"  I panicked, but was able to shove that panic deep inside.  I know it is a lie.  But I also know it as a truth that has been proven over and over and over again in my life.  SIGH.

The conflict within has been ever so difficult to bear on top of the gastroparesis flare, the pain of which drove all thoughts of my medications out of my head, which added gabapentin withdrawal on top of all the other bodily misery.  To be so ill and so conflicted makes being so alone even worse.

In sum, the past week has been ... brutal.

I should add another thing my cardiologist did last Thursday was that he immediately and directly responded to something I dared to mention.  You see, there was this change in my appointments a couple of years ago where I no longer left with the next one, but was to receive a phone call.  Each time, I have not received a phone call.  I don't call myself because I feel such a bother and reckon the missing call is proof of my being a bother and do not feel worthy enough of his care.

Had I called for that appointment when I wasn't called, I would have seen him a month prior, right when I was in the grip of whatever was raising my overall heart rate and he might have caught the reason.  But I didn't.  I couldn't fight through the 1,001 ways I am utterly convinced that I am not worthy of care (or anything else good), including that I never get a call for an appointment.  Last time this happened, I didn't go in for almost a year.  I only called because I have been so worried about being short of breath with exertion.  The breathlessness didn't even start until after I had my apointment.  SIGH.

Anyway, I dared tell him about that issue of mine because it kept me from coming in and he once said that he didn't trust that I would call him when I needed help.  I reminded him of that remark and then explained why I let things go and how much it bothered me that I couldn't bring myself to call for an appointment.  His immediate response was that he would give me an appointment before even leaving the exam room and he would make sure that happens each time I come.

He's proven over and over and over again that I can trust him.  So, why am I certain his touches were grooming when I know that they were not?

I hate my childhood's hour.
I hate my mind.
I hate my ever present self-loathing and abject fear of the next time it will happen.

Tuesday, October 31, 2017

Shocking, shocking, shocking...

Being constantly shocked in my palms and fingertips is driving me NUTS!

I just do not know how to handle it.  I mean, Electrician Man came today to service the HVAC and Firewood Man came by to mow.  Having folk to interact with helps distract me for a while.  But when I am alone, which is almost all of the time, I struggle to ignore the pain and the ... jerking.  It is hard to use the computer and the phone and my Kindle.  It is difficult to concentrate enough to stream something.  It is near impossible to sleep.  It is just ... shocking ... shocking ... shocking ALL THE TIME.  SIGH.

I am horrible company.
I am horribly grumpy.
Life is horribly bleak.

Friday, October 27, 2017

Slow innards...


The neuropathy in my arms and hands continues, which has made just about everything impossible.  Okay, not impossible, but definitely difficult.  Typing and using the touch pad and using my phone ... I jerk and jerk and jerk and end up with a colossal amount of mistakes.  SIGH.  Plus, well, it just drives me nuts to be continuously shocked.  I cannot tell if the shocks are slightly less or if I am growing used to them.  SIGH.

The visit with the cardiologist was ... interesting.  He is super, super patient with me and answered my gazillion questions, some of them several times until I could understand.  Some of the answers, I understood, but I just cannot repeat.  One of them made sense ... maybe my oxygen sats are not as low as my pulseoximeter, because maybe the capillaries in my fingertips have shut down because of a reaction to the exertion.  He doesn't know that, but it could be an answer.  The thing is, we just don't have enough answers.

I started experiencing a new symptom that I am calling breathlessness.  All of a sudden, it feels like there isn't enough oxygen in the air anymore.  Like I am breathing another gas or something.  Usually, it passes quickly, but it is rather disconcerting.  My cardiologist thinks the shortness of breath with exertion and the breathlessness are connected.  I think he thinks that it is lungs not heart, but I wasn't quite straight on that.

The doughy swelling in my legs at night, he suspects my be because of the valves in the veins in my legs, so I am having a test for that in December.  I brought him a photo from Tuesday night, because the elephantine size of my legs, ankles, and feet scared me.  My right is worse than my left.  I just don't look at my feet much.  But when I did I gasped.  I was really, really, really grateful that I only had two days left until my cardiology appointment.

As far as the breathing, the pulmonary function tests say two things:  1) I had good results for having asthma.  Great results, even.  2) They show a restriction and something else I just don't understand that has to do with diffusion.  I'm not taking in enough of a breath is the restriction part.  Is it Sjögren's?  Is it the weight gain?  Is it asthma?  Is it dysautonomia?

I think I got that he thinks it might be reactive, which could mean dysautonomia and thus harder to pinpoint and maybe treat.

I mentioned to him that the integrative medicine specialist asked why I am no longer on the theophylline since it helped my asthma so much.  I told him that I told her that I didn't think that I could go back on it.  His response was interesting in that he did not agree with that.  Maybe I could.  Or maybe we needed to attack this from a non-traditional direction.

I practically didn't have asthma any more on theophylline.  So, I'm up for that, if there was a way to control the wild reactions I had in my blood pressure and heart rate at times.  Also, frankly, theophylline would be cheaper treatment for me.  Well, cheaper in that I wouldn't be on traditional meds.  But I would be paying for it, whereas I do not now being on medication assistance programs from the manufacturer.

One of the highlights of my visit was when I shared my FitBit data about the increase and subsequent decrease in my resting heart rate.  I know doctors can be dismissive of Fitbit, but I thought the graph could help show this rise of heart rate overall.  Low and behold, the pacemaker data showed the same thing!  Fitbit shows the peak October 8th, but it was really the 10th.  And it shows a greater intensity in increase a week around that date.

With dyautonomia, you generally get a whole lot of normal test results, save for the tilt table test.  So, you get a whole lot of "crazy" diagnoses.  "Psychosomatic" comes up a lot.  The way I like to describe it is that those tests are often looking at the organ and not the nerves controlling it.  And it is the nerves that are the problem.  Nerves a whole lot of medical personnel forget about, ignore, and even dismiss as real.  SIGH.

With Sjögren's, I am getting abnormal results, which is a bit of a relief.  Only the syndrome is unnerving and makes life ever so difficult.  It is unfamiliar and difficult to manage.  I hate it already and my diagnosis is not even a year old.  SIGH.

So, back to the breathing issues.  My cardiologist wants me to do a cardiopulmonary stress tests, which takes place on a bike.  First, that is a problem because of the pudendal neuralgia.  But I will sit for that.  Second, biking is just not that stressful to me.  It is not the effort that standing and walking is.  I am just not sure we can get the data he wants on a bike.

My idea was to go home and do a session on my recumbent bike to see if my oxygen sats drops.  I tried different settings, mostly because I figured I would need to be able to sustain the biking.  At the middle tension and 12.5 miles an hour, I got my heart rate to the 120s, but my sats only dropped to 92.  I do not think that that is enough stress.  I sent him the data, per his request.  So, I am waiting to hear back from him.

In sum, I was reminded that I am incredibly blessed by the care of my cardiologist.  He is very, very knowledgeable about dysautonomia and is the paragon of patience.  I am trying to get better at being the patient of a male doctor.  SIGH.

Thursday night, I had dinner with my realtor after my cardiology appointment.  Unfortunately, after that my stomach stopped working.  Another gastroparesis flare.  It's been a while since the writhing has been this bad.  Here I am, more than 24 hours later, and that dinner is still sitting there.  Such misery.

It's been a long, long few weeks for me.  Many appointments and yet no real answers.  I very much dislike breathing issues, for they deeply frighten me.  Swallowing.  Breathing.  Chest pains.  The symptoms that strike the deepest fear within me.

More blood work on Monday.
I don't do mornings well.

If only my stomach would start working again.  Slow innards ... UGH.

Monday, October 23, 2017

I cried today...

I had a terrible migraine last Wednesday evening.  After taking my meds and finally falling asleep, I awoke with the neuropathy I think I've described:  pain radiating down the inside of my arms to my fingertips.  A pulsing, electrical pain.  A pain that over the weekend intensified into electrical shocks that make my hands jerk.

I am not able to type without lots and lots and lots of mistakes.  It is hard to use my phone because my fingers are jerking against the screen.  I keep selecting things I do not want.  I am mighty frustrated and in quite a bit of pain.  Sleeping is also rather difficult.

Tonight, I have been struggling with my breathing.  I feel short of breath even though I am not short of breath.  When I check, my oxygen sats are low.  I do not understand what's wrong, but I will be at a doctor's office tomorrow, so I can ask.

I see the cardiologist in just two days.  Even though the shortness of breath upon exertion has gotten better and my resting heart rate that had elevated 30 beats per minute is now back down, I am, as of tonight, glad only two more days remain before that appointment.  Even though I don't think I have the data for him to collect on my body anymore, I have QUESTIONS that I want to ask.  First with the exertion and second with the breathlessness.  SIGH.

I did want to share something that I read from a child sexual abuse survivor:

I cried today because even though the abuse has stopped I'm still affected
I cried today because I've been strong for far too long
I cried today because he could be out there hurting someone else and I was too ashamed to stop him
I cried today because my innocence was stolen before I was ready to give it away
I cried today because I will never know what normal is
I cried today because who I am is not who I want to be, and who I want to be is too hard for me to be
I cried today because through all the suffering I am a survivor

I think do not think of myself as a survivor, nor do I think of myself as having been strong.  Mostly, because I keep getting this pushback that I should be "over that" by now.  I am not.  Over it.  I do not think I will ever be, but I hope that I am better at coping.

What struck me most are two lines:

I cried today because I will never know what normal is

YES!  I want to scream and weep, though I have no more tears.  It is difficult for others to understand.  I do rage, at times, that I will never know what normal is.  It is an ache and a longing that I oft think will shatter my soul.

I cried today because who I am is not who I want to be, and who I want to be is too hard for me to be

YES!  I feel ever so much pressure to not be who I am, at least in regards to an adult survivor of child sexual abuse.  I do not much like myself for a plethora of reasons, but chief amongst them is not being the person that I know I should be.

I cried today  ... not with the tears Sjögren's stole from me, but with my whole body.

Thursday, October 19, 2017


That crazy weird neuropathy is driving me NUTS!  Never mind the burning, stinging electrical pain running down the inside of my arms past my wrists to my fingertips. When you feel something like a static shock, you tend to jerk your hand away.  So, I have to constantly keep myself from jerking my hands away.  Plus, when I am scrolling in my laptop, my fingertips jerk against the mousepad and I end up clicking on things I'd rather not.  This is just ... too much.

I continue to feel so very STUPID about the phone.  I mean, I know I wouldn't have known about the service coverage if I didn't try, but I just think that if I had done better research I could have learned about the importance of having a phone optimized to the service you choose.  It really is best to have a phone sold by that service because you have the best antennas for that service ... or so it seems by my two attempts to use the SIM free phone.

What I do know is that with Sprint I had no problems talking on my phone wherever I needed.  The data was not the best, but I don't need data all that often.  I haven't used more than 1GB a month.  Mostly, I keep my long rides on the data train for whenever I am on a wi-fi network.

So, $115.23 later, I have ended up trying to get service back with Sprint and getting a phone through them, having lost my phone number in this process.  SIGH.  I cannot get the $56 for Straight Talk back.  I am hopeful $25 of the $26.75 for the T-Mobile SIM card might come back through an account credit on my friend's bill.  But the $32.48 for the booster doohickey that was not supposed to be charged to my card, it turns out, doesn't seem to be coming back to me because the only way to refund the deposit part ($25 ... the salesman did not tell me about the other $7.48) is through an account and I don't have an account with T-Mobile.  It should have gone on my friend's account, but it didn't.  SIGH.

So. Very. STUPID.

It is my fervent hope that the Sprint phone comes before Monday because I have to send the Apple phone back.  I don't want to be without a phone at all.  SIGH.

This past week, I have deeply missed having a landline.  Firewood Man left on a trip this morning, but last night he stopped by to bring me some wood so I could enjoy a fire as the weather cools in the near future.  Being the merciful man that he is, Tim stayed for a long while to be my landline so I could try to figure out the problem with Straight Talk (I need a Straight Talk phone basically to make the voice mail work).

It struck me, then, just how much Tim does for me, helping when and where he can.  We are not family.  We are not really friends.  But he helps me as if I were both.  I mean, he is a service man for me, but he also does things like bring me wood for the first truly cold nights.  And, a couple of weeks ago, he fertilized my yard for me, knowing that some GREEN grass would do my heart some good.  my yard is GREEN now!  There is some grass seed growing where he finally got a chance to remove the mound of dirt left over from the excavation work on the sewage line in February 2016.  No more grave in my yard!  Anyway, I guess you can say that he's claimed me as his neighbor.

Such goodness God has brought to me through that man.  The interesting part, to me, is that Becky found him for me.  The first man I had bringing me firewood was ... cruel.  He would leave me feeling wretched.  Becky finally stepped in and told me that I didn't have to take such behavior from the person bringing my firewood.  She went looking on Craigslist in my area and found Tim.

I think I've said this before, but Tim stopped selling firewood.  He chops trees for himself and for me, telling me I can have as much as I want.  So. Very. Blessed.

I know that God has blessed me through my friends, the ones who have stuck with me despite the illness and the misery and the spiritual anguish.  Despite my utter brokenness.  I know that.

But do I believe?

I doubt that every day.  Every. Single. Day.  Not looking to my faith as evidence of faith, but questioning what is it that I believe.  Do I believe that Jesus is the Son of God?  Yes.  Do I believe He died to save the world?  Yes.  Do I believe that He died for me?  Honestly, no.  What could possibly cover my past?  What could possibly cover the utter hatred I have for my body?  What could possibly cover the doubts I've been struggling with ever since I stopped ... being able to keep hidden all the things of my past?  What could possibly cover the deep and abiding fear that leaves me quaking in my very soul?  What belief have I that atones for such filth, such hatred, such doubt?  SIGH.

My dear friend Mary listened to me bewail my misery and fear today and tried to speak the Gospel to me.  I think she said that Jesus died for the futility of the world.  And so He died for the futility I see in my life.  I think that was the word ... futility.  I love words.  It is something that we share between us, something that I cherish.

Sitting here, writing this, I thought of another word:  fragility.  Did Jesus die for the fragility of the world?  Did He did for my fragility?

Tuesday, October 17, 2017

Blasted SIM cards...

I read this article today on Facebook that sort of punched me in the gut.

I could tell you about a dozen things that I loathe about myself.  Truly loathe.  Not just ... oh, I wish I was _____ talk ... but loathe.  The article popped up like this ginormous mirror that I could not avoid.

"When Anxiety Presents As Anger" could have been written by me, well not me because my micro meltdown today at T-Mobile store was not as self-aware as the author seems to be.  It was my fourth trip in a week.  And it was another brick wall against which I banged my head.  But I still wish I would have been ... more gracious.

I want to scream and shout and stamp my feet and roll around on the floor flailing all my limbs.  IT'S NOT BLOODY FAIR!!!  My dear friend and her husband offered to put me on their plan so as to free up my phone cost for medical.  I called them my Medicare Supplemental Insurance Plan.  Only it turns out that T-Mobile is not good service for an iPhone in Fort Wayne.  I have no service in my home, at one of the hospitals I visit, and at my GP's office.  Oddly, I did have service in Walmart, even though it appears that T-Mobile on a SIM-free iPhone doesn't want to work inside a building ... except for Walmart.

After the pulmonary function testing, I came home needing to DO SOMETHING.  I kept thinking about how I couldn't use my phone at home without a wi-fi connection and I thought it was just plan stupid of me for trying to make a dismal service work for me just because it is free.  As much as I need that financial help, I need to have a phone that works in my house even if the Internet is out!  Without a landline, cell service is crucial.

So, what I did in my need to DO SOMETHING was to get what I thought (and now fervently hope) I needed to switch from my week of T-Mobile service to Straight Talk.  That was the service I thought I would do because it is $12 less than what I was paying with Sprint and it is the service Becky had when she visited me last.  It was the service she had when she came to get me through the pacemaker surgery and was driving out and about for me.  It was good service and I thought it would be sort of risk-free in trying.  It was my plan before the offer of free service came.

Now, Becky has also experienced terrible service in the same areas her husband's Android phone works just fine.  I thought it was something that just needed to be adjusted on her account.  In truth, I sort of blamed Becky for not working the problem.  Hah!  Oh, how the Lord smote me in that!!  There is no working of the problem.  The Bring Your Own Phone program with T-Mobile leaves much to be desired.

In switching phones, I purposely  bought a SIM-free phone from Apple because it angers me that my iPhone 5s from Sprint can only be used on Sprint even though it is unlocked and now owned by me for over two years.  I couldn't even use it on Boost Mobile, the pre-paid service that runs on Sprint's network.  Only I don't really know what SIM-free means and it seems like having a phone optimized for a service is the better approach in cell phones.

I've got 7 days left to return the iPhone if that is the course that I should take.  Should I get just get an iPhone through T-Mobile?  Should I return the phone and get a replacement, in case it is the antennae?  I know that it is the Qualcomm chip thingamajig, so it is the better un-attached phone.  But this whole SIM-card world is not for me.

I tried to port my number from T-Mobile to Straight Talk.  Who knows if I did it correctly.  Right now, I'm in this limbo land where the T-Mobile SIM card works and the new Straight Talk one doesn't.  I had to buy the $45 plan for the first month even though I want the $35 plan.  I am crossing my fingers that I can switch after 30 days.  But, instead of being smart about this, I opted to try to port my number.  What I should have done is gone with a new number.  Now, I'm in limbo.  Who knows if I did things correctly.  It's 10 hours later and the T-Mobile SIM card is still working.  The new one has "No Service" on it.  Becky (and the Straight Talk website) says that this will take a while.  But when I ported from Sprint to T-Mobile, it took mere minutes.

I think if I had signed up for a new phone number, I would know right away if I bought the right kind of SIM card and if it is working.

It is extremely NERVE-WRACKING to not know if you blew up your cell service or not.  If the T-Mobile SIM card stops working but the new Straight Talk one doesn't start working, I won't have a phone to call customer service!  I think I could get my realtor to come over and let me use her phone, but I am not certain.  And I've been too chicken to ask.

I have been ... well, I feel as if I am shattering, as if all these pieces of me are flying outward and I'm unable to hold enough pieces of myself together.  I am worried about the shortness of breath.  I am even worried about how it is getting better.  I am worried about the one segment of the testing today that I failed.  I am worried about potentially meeting a new specialist.  I am broken by this question in therapy that arose a couple of months ago that is rattling around my being.  And I am crushed by something that happened with my family this week.

This whole evening, as I checked the service on my phone a million and one times, I also found myself shuddering and shaking and being on the verge of a flood of tears save for the whole dry-eyes-Sjögren's thing that means I no longer cry.  Pain wells in my eyes.  My face turns read.  I shudder.  And my entire being is melancholy.  But no tears in my eye.

I found myself huddled over, clutching my midsection wanting to wail, but somehow silenced.  I am so fractured that I am even more frightened about that that about the barbecue ... no, not barbecue.  Oh!  DARN IT.  A migraine is starting and I cannot finish this.  I cannot think of the words for the greater fear.  But I want to post anyway. Post that I am frantic and frenetic and thrumming with an upsettedness that has bowled me over.  SIGH.

Maybe my migraine meds might send me into the slumber that eluded me nearly all of last night ... and I'll awake to find the port finished and the new service working on my phone.  A girl can dream, eh?

Sunday, October 15, 2017

Culinary labors...

Tomorrow, the maids my parents have clean the house once a month are coming, so I had a deadline of procesing my dried herbs.  I do not know how others do it or how I should be doing it, but the way I do takes forever.

This is over three hours worth of work.  Stripping the leaves and then ... crunching them down from a large bowl to what will fit into the mason jars.  From left to right, I have sage, thyme, oregano, and dill.  The dill is this German dill that I tried this year.  I adore it.  Can you see how brilliant GREEN it is even after being dried?  I wish I had enough for the larger jar, but I only grew one plant this year.  Next year, I shall be planting two of them!

The other goal I had for this day (well, I had two more culinary ones but grew too tired for the second) was to make some more chilorio.  Of all the recent recipes (as in this past year), I think that I like the chilorio the best.  Or it is definitely in the Top Five list.  I do like it as I have been eating it, on a fresh tortilla slathered with avocado mash, but I think it would be tasty as ... well ... as someone would eat barbecue.

You start by cooking the pork in a combination of orange juice and water.

Whilst the pork is cooking, you make the ancho sauce.  These are the peppers when you first start prepping them, remove the stem and seeds.

This is the peppers after you have soaked them in water you brought to a boil.  That's some of the water there on the right, because you use it with the ancho sauce.

This is the sauce.  Impressive, eh?  You put the peppers, soaking water, apple cider vinegar, onions, garlic, cumin, oregano, peppercorn medley, and parsley (I use Gourmet Gardens Parsley Paste).

To finish things off, you take out the pork and reduce the remaining liquid.  Then you pull the pork and drizzle it with the reduced sauce.  Next, in the same pot that you cooked the pork in, you heat olive oil and then pour in the ancho sauce.  After it cooks for a while, you add the shredded pork and cook it until the sauce is ... absorbed.

Mmmmm!  Tasty!!

Today, I started upping the baclofen.  I had put it off for a week or so because I knew I would be bowled over by massive headaches, dizziness, and drowsiness.  I wanted to sort of gear myself up for the increase, even though I want help with the neuralgia flares.  Nerve pain stinks!

The headache has started.  I know the side effects will ease as I get use to the dosage change—at least they have each increase thus far—but it is difficult to endure the side effects with all the other symptoms I have to swallow in this chronic life of mine.  SIGH.

It was good, though exhausting, to distract myself with some culinary labors.  I do so relish the idea of growing my own herbs and the sight of those jars tickle me pink.  Now, I just need to remember to buy an avocado so I can chow down on the chilorio I made.

Mmmm!  Tasty!!

Saturday, October 14, 2017


Someone I follow on Facebook posted the following:


Today, I was listening to a conversation on the radio between a man and women concerning the Weinstein sexual assault accusations. She mentioned that she didn't like it when a man hugs her during a greeting, but she never said anything.

Over the years, my [wife] and I have hugged hundreds, maybe thousands of our customers, friends, and acquaintances that we liked and felt comfortable with. After listening to the radio today and seeing what Weinstein had done, I'm feeling like I owe an apology to those I may have hugged and were offended.

I hug many people, even men. (Man Hugs) with no disrespect intended.If I didn't have respect or admiration for you, I wouldn't even take the time.

This being said, if I or [my wife] have offended anyone, please accept our sincere apologies.

Out of 34 comments, only three acknowledged what he was saying as important.  Most were saying his hugs were fine and not to worry.  Many were about how intentions matters so folk needed to be able to recognize that.  In most of the latter posts, not wanting a hug was seen as ... anti-social ... as wrong.  

When I see such comments on social media, it fells me.  It hurts and hurts and hurts and I can barely breathe.

Today, a friend posted this article about a woman who is on a mission to tell her story.  A story where she was a sex-slave.  In America.  Beginning when she was twelve.  Twelve.

Her brother-in-law sold her from her home .. because her own mother sold her to him.  By day she was another young girl going about her life and by night she was a sex-slave.  No one at school knew.  As she says, "a pimp doesn't necessarily wear a big hat with a feather, and pedophiles aren't necessarily 40-year-old men who live in basements."

She says all the signs were there for folk to know what her life was like, but no one looked. She is sharing her story so that folk can learn to do so.

Reading the comments on that man's post made me rather cynical about her prospects.  Nearly all of the commenters rejected the very idea that his hugs could have been troubling to another.  They rejected the idea because he was a good person.  They rejected the idea because no one should be troubled if the hug was well-intentioned.  They rejected ... me.

They rejected my pain, my shame, my PTSD.
They rejected my fear, my sense of being trapped, my trigger.

Mostly, when I think about the things inside me, I believe there is no place for me in this world.  When I read comments like the one on that man's post, I am convinced more than ever that that is true.  When I read about that woman's horror, I know that that is true.

The world turns away.
The world doesn't want to know.
The world silences such stories.

I would add one more point about his post.  The man's response apologized for those who might have been offended by his hugs.  Perhaps ... perhaps those who do not like hugs in general it might have been offense.  But I would proffer that for those to whom he was addressing, those like the woman he heard on the radio, it wasn't offense, it was hurt.

Force me to endure something I do not want and you are hurting me, deepening the wounds of my past.  Even if it is just a hug.  Even in church.  Especially there.

Friday, October 13, 2017

Not what I wanted...

Half of me remains convinced that the huffing and puffing is because of Dyautonomia.  Half of me is still rather worried about it being otherwise.  Half of me is clinging to my GP's optimism.

Today, the visit with the rheumatologist went mostly as expected.  Her part of my blood work is what she would expect to see.  I am to repeat it and come back.  She gave me another eye drop option, but it is brand new and rather expensive.  I have made do with the Restasis primarily because you can stretch out each vial for many days, as long as you do not touch the tip to your eye and you keep it in the refrigerator.  I could do without the constant burning and stinging of the medication, but it has greatly helped the dryness in my eyes.

But the very minute she walked in, my doctor said, "So you've been short of breath?"  I nodded and told her about the pulmonary function testing next week.  "It's not your lungs. It's your heart.  When do you see the cardiologist?"

Gut punch.

Whilst I was sitting there, she fired off a note to my cardiologist, asking him to review the blood work, and I found myself worrying anew all over again.  She was very firm in her opinion.  SIGH.

I like my rheumatologist, even though she is pretty much the antithesis of me.  I am loquacious and she is taciturn.  But she reviews my chart before I arrive, reviews the test information, listens to me, takes notes on what I talk about, and dictates her chart note whilst I am in the room so that I can hear here.  Hers is the quickest doctor appointments I have and yet I do not feel as if I am being overlooked or neglected.

I like her.
But I am worried.

Something I have noted, though, is that in the past few days, my rising resting heart rate has been coming back down.  The graph is a sharp upward trajectory, with a steady decline past the peak.  It looks like a mountain.

I sort of laugh at that.  By the time I see the cardiologist, my huffing and puffing will be all better.  I should have made a stink about going in two weeks ago.  Don't get me wrong, I am glad that I have had less pain on the treadmill the past couple of days and walking up to my bedroom is a smidgeon easier.  However, whatever is happening I would like documented.  Not for ... proof ... but so that the next time this happens—if the shortness of breath is easing—I will know what is happening and if there is any treatment.

But I might be getting ahead of myself.
There could be much huffing and puffing still to come.

I had worked up to 35 minutes on the treadmill, but I dropped it down to 20.  I read that anything less than 30 is useless, but I am hoping that having my hear rate so high means my 20 minutes are useless.  I just cannot torture myself a minute past that mark.  I keep walking, though, because if I stop whilst I wait to learn what is going on with me, I am most certain I will never start again.

The appointment was hard because her words were not want I wanted to hear.  I wanted her to echo the cautious optimism of my GP, so I could gather their hope around me like one of my weighted blankets.  I have not worried as much as I have been save for the weeks before the pacemaker surgery, when I worked at saying goodbye to folk.  I have been so worried that I have lost four pounds in the past week.  That is a bloody miracle, but I am sure worry weight loss isn't permanent.

Ever since I was put on the theophylline, I have not felt hungry.  It is a side effect of the drug.  I thought that, once I stopped the medication, feeling hunger would return, but it hasn't.  Every now and then, I feel a bit peckish, but no real hunger.

I often say, these days, I spend so much time being pummeled by violent waves of nausea that I want to eat as much tasty food as possible when the nausea subsides.  But ever since I saw my blood work posted a week ago tonight I have lost that ... enthusiasm ... for tasty food.  I have found myself sitting and thinking and worrying until hours and hours have passed.  I am so alone and so scared that I do not have room for reading or music or streaming.  I am completely and utterly overwhelmed.

As I said, I am nearly certain this is the dysautonomia.  But, if it is, that means that it is yet another new normal that I must somehow learn to accept ... and endure.  That thought is what has me so completely and utterly overwhelmed.

You see, I don't think it is my lungs because none of my current lung medications help.  If it were Sjögren's damaging my lungs, I think the x-ray would have shown something.  If it were neither asthma or Sjögren's, then, again, the x-ray would have pointed to crappy lobes in my chest.

I don't think that it is my heart because my GP spent a long time listening to me last Friday and because the x-ray shows a normal size and does not show any fluid loading.  Anything more serious with my heart would have, I believe, other symptoms than merely shortness of breath with exertion.

I think it is crappy nerves doing crappy things and messing up my normal function.  And, frankly, I have absolutely no room on my plate for another new normal.  None.  Zero.  Zilch.

What I heard today was not what I wanted.
Not at all.

Thursday, October 12, 2017

Another injury...

One of the things that I do not believe I have written about is, recently, finding myself with injuries without any knowledge of how I got them.  One of the ones that has puzzled me the most is a cut I got on my right leg that is deep enough to result in a scar.  I got it sometime this summer (I cannot remember when) and whenever I see the now scar, I wonder just what happened.

Well, my left foot has been hurting for a few days.  I cannot thing of anything that I did that might hurt it.  It is hard to describe, because it mostly hurts on the bottom of it, but more diffuse as I walk on it.  Hobble, really, though I have continued to walk on the treadmill.

So, when I awoke today, and about near screamed with my first step, I thought to actually look at the bottom of my foot.  It is bruised!  I mean, gee!  There must have been something really ... hard ... to bruise the bottom of my foot that way.  I must have stepped on something really hard to bruise my foot so and to have it hurt this much for so many days. But I don't remember doing that.

Only blankness.

I know that there have been a few other injuries, but I do not remember them.  SIGH.  Today, I answered a question for the therapist from last week, only I couldn't remember the why behind the question.  Why I was so deeply distraught the week before.  I worked on answering her question and didn't work on trying to remember.  After all, surely I would that.  But no.

Only blankness.

I really wish I knew what caused this latest injury.

Tuesday, October 10, 2017


Friday night, I received rather distressing news in my blood work results.  At least to me it was.  Three of them—tests looking at inflammation, tissue damage, and heart strain—were all high, one of them seemingly really high.  All this huffing and puffing I am doing with exertion was bothering me and now it is really worrying me.

On Monday, I learned that my chest x-ray was normal, which is good news.  No obvious signs of heart or lung involvement.  Before seeing my GP, I had figured the huffing and puffing was either my heart, lungs, or dysautonomia.  I have been deeply despairing because I am convinced that it is the latter.  And if it is the latter, like the dysphagia, there is nothing to do about it.  My asthma medications are not helping.  I cannot think what could, though I am not a doctor.  And this is a new normal that I have not been taking well.

The most distressing part of my visit with my GP on Friday was that she noted a fourth option:  the huffing and puffing could be lung damage from Sjögren's.  SIGH.  I have been worrying about that ever since the blood work was posted to my chart.

In the wee hours of Monday morning I wrote a rather pathetic message to my GP, asking her to look at the results posted to my chart and help me understand how they should not worry me, since she has been really good at speaking calming words on things that have worried me in the past, either reframing things or explaining why I should remain hopeful.  She is talented in that way.

At 2:35 in the morning, today, I received a message back from her explaining that, whilst the results were of a concern, they were not yet the worry that I was carrying.  For one, she said, on the heart test, if I had bad damage the numbers would be even higher.  The tissue test, too, could be much worse.  The inflammation test is the one she said she would leave up to the rheumatologist to interpret.  But what I should do is focus on the fact that we just do not have enough data yet to truly worry.  That means I am to wait for that data.  The 13th is my appointment with the rheumatologist.  The 17th is my pulmonary function testing at the hospital.  The 26th is my appointment with the cardiologist.

So, this is me waiting ... trying not to worry.
Go ahead and laugh.