Tapering – Uncle

Happy Wednesday everybody. I might as well explain the post title right away, as I want to be blatantly transparent with this process…

I am stepping back on the second dose taper, effective this morning. I am crying “Uncle,” so to speak. From a pain standpoint, yesterday was the worst day I have survived in a very long time. I am not sure I can, emotionally and mentally, have another day like it again today. I was simply not prepared for the magnitude of hurt I suffered yesterday. Without a good plan to tackle this issue, I can’t continue until I’ve seen my pain specialist.

This is total insanity. To anyone who has stopped taking painkillers while experiencing excruciating pain, you have my utmost respect. However, I am not seeing this backstep as anything but a delay in achieving the final goal, at least for now. I don’t feel defeated, I am just hoping for some pain relief at some point, and I really need a nap. I haven’t slept more than 8 hours across two nights. If there is one thing that is crucial to Fibromyalgia, it is getting adequate sleep.

A couple of months back, I read an article that someone had written about Prince, who died of a painkiller overdose two years ago. The author posited that he did not die from pain pills, but from chronic pain. I hadn’t seen anything written from this point of view, and I agreed with it wholeheartedly. Chronic pain is a huge problem, and too many people suffer with severe pain to sweep them under the rug any longer.

I need to cancel the second of two appointments this week, because I can barely move. We missed hubby’s neurology appointment in Tampa yesterday, which is a 70 minute drive each way. There was no way I could have driven and been safe on the road yesterday with the misery I faced, and it was a good call. Today is my appointment for a long overdue eye exam. However, a dilated eye exam and the size of migraine headache I have brewing is not an ideal combination. Stuff happens when you have a chronic illness. I joked with the lady on the other end of the phone yesterday as I rescheduled hubby’s appointment, that it’s rough when you don’t feel well enough to see the doctor. Something you take for granted when you’re normal.

I will check in later this week. Have a blessed day!

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Tapering – Rough Going

Hi everyone. I know I haven’t checked in since I began my second dosing taper on Friday. For that, I apologize, especially since I had stated I would update last week. I haven’t felt much like myself since Friday evening, and even then was a little iffy. Writing has been the absolute last thing on my mind this past weekend.

I would be lying if I said I don’t want to give up doing this taper. Initially, I thought I was going to have a problem with getting my prescription filled this month, but it got worked out quickly and efficiently. That reason alone is why I use a pharmacy where I know the pharmacist, and she knows me. My doctor mistakenly wrote the prescription to be filled August 5th, not July 6th. Anyway, my point is, it doesn’t seem like I will have any problems with accessing the medication even after the new law. I technically don’t need to torture myself like this…

So, why do it? I am doing this for me. Many things my body cannot do anymore without help, like digestion. I used to sing, and had hoped to be on the worship team at church, but I have found since the opioids, I can’t hold a note long enough. Plus, with so much research out on the web that speaks of opioid-induced hyperalgesia, the last thing I want or need is more pain on top of what is normal for me.

I know the road to recovery isn’t necessarily going to be easy. I am finding this out as the hours tick by slowly between medication doses. The excruciating pain that I didnt have on my last dose reduction makes my brain feel foggy. I have pain in places I forgot I have. And I wonder if I have the fortitude, the chops, so to speak, to make it to the end where I am opioid free. The will is strong, but I’m not sure how the body will endure. And if the pain overrides my will, where do I go from there?

It’s amazing to me to think I am more than 4 weeks into this journey. I have come a long way, and yet there is more, most likely difficult road ahead of me. I have to make it… for me.

Thanks for listening and allowing me to ramble on as I walk this journey. Again, your audience is so very much appreciated! I will check in again soon.

Prepping For Step Two

biscuits

I love that meme.  It depicts my life to a tee, and I think it’s hilariously funny.  The past two days have been busy, but decent. Yesterday, I never even turned my CBD vape on, and on Sunday, I only used it a few times.  Today, I’m more on the spectrum on the busted can of biscuits, but I’m doing housework anyway, because I have the next step of my tapering journey starting very soon.  If I don’t get some cleaning done now, it’s gonna wait.  My poor carpet can’t take much more neglect, and I found a kitten-sized ball of fluff under the microwave cart in the dining area.  It might have been an actual kitten, come to think of it.  That would explain how the cats are going through the sheer volume of food they’ve been consuming. I also find it funny, or frustrating (depending on the day) that I have these delusions of grandeur. In my mind, I’m cleaning like a fiend on fire, but when the rubber meets the road, I’m sitting down more than I’m working, and running out of energy long before I run out of stuff to do.  I have yet to find that middle ground where I can pace myself and accomplish more, and I’m in my 19th year of fibromyalgia.

In retrospect, I have been feeling better over the past week or so, with the exception of a day or two where my back has been acting up.  I don’t believe that was related to anything I’ve been doing with my meds, my back is just wonky like that.  Back pain seemingly runs in my family, and surprisingly I didn’t draw the short straw on that.  A specific defect, called spondylolisthesis, has affected every person in my immediate family. Both brothers have it, my parents both have/had it, my sister has it and her two girls have both been diagnosed with the condition as well.  I, on the other hand, have no evidence of it… yet.  It can develop over time, so I am not out of the woods, and I do have some symptoms of it.  But as of my last MRI, I’m okay.  That is about the only thing I’ve been lucky with when it comes to health.  No one knows where in the family my fibromyalgia came from, even though experts tend to think the disorder is hereditary.

I am shooting for Friday to begin my next dosage taper, mostly because that is the day that my medication is due to be filled.  I still don’t know, however, if I will have a problem at the pharmacy; since I have a history at Publix, I am not anticipating any issues.  I was going to reach out to the pharmacy manager yesterday while we were at the store getting some essentials, but it was her day off.  Time will tell.

I will probably not update this on the tapering topic until Thursday evening, the night before my new start date.  There is no need to bore everyone with the details when there is nothing new to report.  I’m still working on that elusive new recipe I’ve promised for more than two months, so look for that very shortly!  You will want to try this if you love curry dishes.  Yum!

Until then, be safe on Independence Day, but have fun, too!  Gentle hugs, and God bless!

Prayers Are Great, But They Don’t Get Dinner On The Table

By every definition of the word, my husband and I are in financial crisis. We are both disabled adults, both of us are unemployed and neither of us can physically do enough to be gainfully employed. As of last April, we suffered a significant financial setback when we lost a good portion of our income every month, money that we used to buy things we used to take for granted. Things like food, medication, upkeep on our one vehicle, and the ability to save a little for a rainy day. After a year (and then some) of rainy days, even that piddly little savings account is dried up, too. I am not kidding when I tell you that we can’t afford to even pay attention. I have overdue hospital bills from last year, for both myself and my 89 year old mother, whose finances I also manage. I have no idea when, if at all, I can pay on them. My coinsurance on my three most important medications rose this January by 4200%… each. Most months, I am making the impossible decision between feeding the both of us, or taking my medication for that month. Stopping two of the three suddenly could be life threatening, so we all know which takes priority.

My father, who worked in manual labor his whole life, supported a family of six on an 8th grade education. He didn’t have the luxury of finishing school. He was the oldest male child born to native Italian parents. He was expected to help support the family of eleven after the Great Depression began. He never once complained about having to work a skilled trade; the back breaking labor, the often times too-hot-to-breathe weather in the summer and the bitter cold in the fall. In the winter, there was no construction work in Connecticut, so he and everyone else on his job was laid off. There was nothing my Dad loved more than his family, and we were his life and his reason for working as hard as he did. It pained him, physically, to collect unemployment during his annual lay off, and he would have rather died than take food stamps. His own parents taught him the value of hard work, and the importance of being free enough to support his family. That is, after all, the reason his grandfather toted five children by himself from Naples, Italy to America… to seek a better life.

Being in our current predicament, while I accept full responsibility for years of poor decision making, weighs heavily on me, because I always think back and remember my Dad telling us the value of a job well done. To not be reliant on anyone to provide for us, and he meant the government, was a huge source of pride for him. Many times I catch myself wondering what he would think of me today. Disabled at 38 years old, collecting that government check every month, regardless of whether I had paid into it. The disability is something I have absolutely no control over, but nonetheless, this is a tremendous source of shame for me, and is difficult to bear. I’m sure his words would not be terribly kind., but as always he would have had good, constructive criticism and loving advice.

This, in a roundabout way, brings me to my point. Society at large does not have much empathy for a couple of disabled, childless, unemployed adults. Now I know there are exceptions to this rule, just like every other hard and fast rule ever made. But it has been my personal experience that my statement is true. Our familial status has been the defining feature of whether society deems us “worthy” of saving. No children? Well, then you don’t qualify for x, y and z services. We were even told once, when we were facing homelessness that we could never qualify for Section 8 assistance, because families with children would always bump us down to the bottom of the list. It would take literally years for approval, and we had just weeks. I had always thought that government agencies could not discriminate based on familial status, but obviously that means you need to have children to qualify for goods and services provided by most cities and counties. If they don’t mean that, then the Powers That Be should clarify, because that is what we have been told over and over again. Mean what you say, and say what you mean!

There are a lot, and I mean a LOT, of folks with good intentions in the world, who offer everything from a listening ear to prayers. Both are fantastic, wonderful things to offer someone who is down on their luck, but prayers sometimes just aren’t enough for a person or family in crisis. Yes, they would like someone to care and pray, but also ask when they had their last hot meal. Please, check up on them or call, but also ask how, not if, you can help. Many people in crisis don’t want to be a bother to others, and will seldom volunteer that they are, indeed, in crisis, or have a specific need. Prayers are wonderful, but they don’t work immediately to get tonight’s meal ready, or provide a ride to the store to pick up a much needed item, or watch children so a single parent can go to a job interview, or lend a helping hand with household tasks that a disabled person cannot do without aid.

I think, and I’m guilty of this myself so I will shoulder this as well, we get complacent and put too much burden on God, when WE could actually be His hands and feet, and provide a blessing to a person or family in crisis. It’s easy to say, “I’ll pray for you,” and you’ve fulfilled your promise, but things are still left undone. It’s easy to look at the brokenness around us, shake our fists at Heaven and say, Why Lord? Why aren’t you fixing this injustice? When all along, we could be providing the answer, the fix, ourselves if we are just moved to act. Is it not our duty as Christ followers to feed His flock, and care for His sheep? Did He not command Peter to do these things for Him? How, then, are we any different than Peter? Jesus did not tell Peter to refer these people to the government for care, but that he was to do it himself. So why do we pass the buck when it comes to doing the work He has given us to do? Like I said, I am just as guilty in this way, so I am pointing three fingers back at myself.

As a society, and as Christians, let’s all try to do better.  Though right now we are in no position to help anyone, once this crisis passes, we will both be much more aware of people that tend to fall between the cracks.  I will be prepared to help in ways that I am able, and if not financially, with my time and helping hands. I encourage us all to do the same.  Offer prayers, words of encouragement, and then ask how you can help.  I will do the same, too. Anyway, this has been weighing on me this week, along with other things over which I have zero control. I know He is working on something big for us, and we are in the middle, as always it seems, of a great testimony. I appreciate your audience, more than you know. Thank you for indulging me in this, and for joining me in this part of my walk in life.

Gentle hugs and God bless!

I Have No Words…

Good morning blogosphere!  Well, I wish I could say it was a good morning but I can honestly tell you this one is for the record books as being the most wretchedly horrible pain day I’ve had since I started tapering my medications weeks ago.  For some reason, I cannot sleep past a few hours a night, though yesterday I managed to get a full 10 hours.  Even the Boy cat let me sleep yesterday, but they both seem to have an innate sense to know I’m not feeling well.  They tend to “nurse” me when I’m sore and tired.  They’re such sweeties, I don’t know how I’d survive right now without either of them.

This actually began yesterday, when I got up around 5:30 to make dinner, however easy it was. I felt shaky, so I tested my sugar and it was a bit low. No problem, have a glass of lemonade and check back.  Then the headache started right around the time I was prepping my sweet Vidalia onion to cook.  At first I thought it was the onion, but the headache persisted into the wee hours of this morning.  After I went to bed, I was back up testing my sugar again, and found it to be close to target.  Then back to bed, and shivering cold.  Poor Mercy, my one-eyed kitty who is my night time snuggle buddy, didn’t know what to make of me with the covers on and off.  Then around 4:30, I heard a thud… the bed next to me was empty, so my immediate reaction was to yell, “Are you okay?” to the hubby.  He yelled back from the bathroom floor, where he was struggling to get back on his feet.  It was difficult to get back to sleep after that, and then the Boy had me up at 6:15 for his breakfast.  I finally got up at 8:30am.  No rest for the weary.

I’m contemplating using my CBD sublingually today, and I don’t normally do that because I need to make it stretch for months at a time.  Using my vape pen helps me do just that.  But when I’m laying in bed in so much pain, wishing I could take another pain pill… I’m not sure vaping alone is going to cut it today.  So this morning, the headache is gone, but my usual lower backache is back with a vengeance.  Why did my body pick today?  Hopefully I’ll be feeling better tomorrow, because I need to do a blowout shopping trip at Walmart for Mom’s hurricane preparedness duffel bag.  Even if I don’t feel better, I have no choice.  I’ve procrastinated long enough on it.  She has to have it by Saturday.  End of story.

If you all are the praying type, I have a couple of requests.  First, a friend of mine had a seizure yesterday, and I would appreciate remembering her in your prayers.  It’s a scary time for her and her family as they figure this out.  And one for my hubby.  He’s been falling a lot lately, and quite frankly I’m scared he will really hurt himself someday.  We see his neurologist in less than 2 weeks, so we’re hoping to have some answers, or at least traveling in the right general direction. Six months ago, his Multiple Sclerosis seemed to be in remission.  Now, not so much.

One last thought.  Florida’s new opioid law, the one that inspired me to begin this medication taper, goes on the books on Sunday.  The way it is being reported in the news is that the law will affect the vast majority of painkiller prescriptions with very few medical exceptions.  Right now, I’m hoping I can fill enough to continue with my slow taper. If not, I’m in for a rough ride in July.

That’s all for today.  Sorry for my small novel here, but if I’m keeping this real, then this sort of thing will happen on “paper.”  Thanks for bearing with me, y’all.  Gentle hugs!

 

Answers At Last!

Good morning y’all! I am awake, probably not for good as the cats woke me about an hour ago for their breakfast. But I usually use the time they are eating to do some catching up on news, or just browsing the web. This morning, my Google search for answers on this topic brought some welcome answers.

One of my more unpleasant side effects of the opioid medication is constipation (hey, just being real, here!) and one that has caused some serious complication in my life. At one point last year, a trip to the ER for what I was convinced was gall stones turned out to be constipation. However humiliating it was to be clinically diagnosed as “full of crap,” I came away from the experience more than wary of these pain meds. I know that opioids can slow bowel motility but I began to wonder to what extent, and how permanently. When I was treated at the ER, I was already following a prescribed regimen to treat the chronic constipation, but at that moment I realized it wasn’t good enough.

Funny how being chronically ill can make you into a chronic worrier as well. So as early as last year, I was already contemplating whether I had the chops to go through with this tapering process. The legislation that takes effect next week gave me the final push. So now, my usual Google searches still consist of trying to hit the keyword sweet spot… what combination of terms will show me exactly what I’m seeking. It’s not as simple as it would seem. This morning I was trying to find information (again!) about a connection between chronic opioid use and gastroparesis. Ten years ago, I had never heard of gastroparesis but now I am painfully aware that if things do not change for me, this could end up being my life. There are few documented cases of opioid induced gastroparesis, but these are the things I worry about, and cause even greater regret that I began this therapy years ago. Who knew that this search would actually turn up what I was looking for… tapering side effects, from a chronic pain standpoint! Who knew?

Turns out, a PDF from a Canadian university called McMaster University gave me precisely the information I was seeking. I now know that I can expect to feel “off” for several months during and even shortly after completely discontinuing the medication. I also know that most pain related to stopping the meds will subside, and that my original pain will likely return, but the intensity may be lessened. Because this paper didn’t specifically address Fibromyalgia pain, its difficult to still predict how I might feel after the pain medication is gone completely. But I have more answers now than I had an hour ago, and I’m pretty excited by that!

What was not good news, however, is realizing I still have months to go where I will not feel well. At this stage, the withdrawal symptoms have subsided until my next dose adjustment coming next month. But the pain is lingering longer than I think it should be. I can tell you that this continued ache, which feels like body aches from the worst case of the flu, 10 times over, has worn out its welcome. I’m not exactly happy to discover I’m still a long way from feeling better. Something I suspected anyway, but it’s disheartening to find out I was right.

There is still much information to read through on this new resource, which I will link to here, for anyone who is searching for this. Even though the university is in Canada, I don’t see a reason why the information couldn’t be just as helpful to those of us here in the US. It’s still North America, after all, even if a border separates the two sovereign countries.

As far as my journey goes, I’m still in the same uncomfortable place I was when I last checked in, but every day I pray it will be a better one. Maybe someday the answer will be “yes.”

Until next time!

Tapering – Update

Hello everyone!  I am so sorry I haven’t kept up on my progress this past week. We have had an unusually busy week, and by the time I was ready for bed, I was asleep before my head hit the pillow. Except, of course, when I needed to be up early in the morning.  To be totally honest, not much has been different with me progress-wise with this process.  My body is still not doing well with the change in medication dosage from a pain standpoint.  I am still using my CBD oil on a consistent basis, and truthfully, I think that is the only reason I was able to survive the busy week.  I’m glad to be able to rest and replenish my energy this weekend.

I had tried to contact someone within my circle of friends this week who has personal experience with this type of thing. He was actually an addict in a long past life, and I thought talking to him about how he was able to detox, and what to expect would be helpful.  However, he is a busy man and had no time to answer my questions.  However unfortunate it is for me, I’ll be able to continue on my own and find the answers through time and experience.  Once this is over, I need to remind myself to have time for others, even at my own inconvenience, especially if they need help with this exact thing.

So, my busy week consisted of two doctor appointments, one for hubby and one for me.  A third appointment was for my 12 year old tabby cat, Pixel.  He has been just chewing himself to bits, and has had bouts of vomiting for a month or so.  It was more than time to bring him, and it was determined he has a UTI and some unidentified skin condition.  The vets remain puzzled on that, but after a few days on antibiotics, he seems to be feeling better. Our other appointments were successful, however short.  Hey, for me, short is good.  Nothing to complain about, right?

So, this weekend I’m just resting at home with my two babies (the cats!) and hubby, hoping that when Monday rolls around, I’ll feel better enough to get to Walmart and get some items Mom needs for hurricane preparedness this year.  Never mind that we will be doing any necessary hurricane prep a few days before, but I digress.  I totally get why the ALF (assisted living facility) needs a prepacked bag for Mom in the event of another Hurricane Irma.  Granted, we didn’t need to evacuate last year, but after seeing some very heartbreaking stories in Irma’s aftermath last year, I understand the reasoning for being prepared.

I’ll check in mid week next week, or if something interesting happens  before then. No need to reiterate the same old stuff, especially if nothing is new.  Thanks for following, as always.  Until next time!