Tapering Progress, Phase Two

Friday, 6:30am

As I write this, it is 6:30am on Friday, officially day three of my new tapering regimen. And as of now, I have not been to sleep since Wednesday night. I think between the activity early in the week (drive to Tampa and prepping the apartment for our inspection on Wednesday,) the family being in town for the week, and the reduction in pain medication, I am wore slap out.

Every day with the family has been sitting outside in the heat, which is rough on both hubby and me, while the kids swim. And if I’m worn out, I cannot imagine how exhausted my Mom must be. She is not used to so much activity, and so many people all at one time. I know she has been enjoying the time with her family, but they seem to forget she is nearly 90 years old. I think I am starting to understand how she feels. I am too old to have such horrible sleepless nights, but the dose reduction and being out of muscle relaxers is not a very good combination.

So for now, I am going to put the phone down and try to get some sleep before noon. Today is everyone’s last day in town, so I want to make sure I am awake and alert. Maybe it’s a good thing after all the only coffee in the house is dark roast!

Saturday, 2:09am

Yep, you read that correctly. In the past 24 hours I’ve slept a whole grand total of 4 1/2 hours, and I’ve now gotten a second wind. We had a busy day out with family, their last day in town before either going home or going somewhere else. Quite frankly, I was surprised that I not only stayed awake the whole day but made it out at all. It surely wasn’t looking good at 7:30 yesterday morning when I was still awake, as I had been all night.

I know something big is coming pain- wise, like it did the last time when I attempted this dose on my own last month. I can feel it in the fibers of every muscle in my body; the constant, growing and increasingly bad pain and the accompanying fatigue… the virtual brick wall. Anyone familiar with the Spoon Theory on chronic illness knows this is sum zero spoons. This is the point where you have borrowed every spoon you can borrow from coming days until there are no more to borrow. Some also refer to it as rock bottom, but even though I struggle with fibro, I try to be uplifting.

Sunday, 3:19am

Oh goody, another painful day, another sleepless night. I am still out of muscle relaxers, and I’m angry with Walmart for three reasons. First, the cyclobenzaprene is no longer on the $4 list at the pharmacy. This latest development is another increase in cost that I cannot afford, especially this month. I can’t be angry at Walmart for my insurance company’s decision to increase every single pain medication co-pay, but this other thing was in their control, and they let me and tons of other pain patients down with this decision; 2) Something happened at the register on our way out today that still has me a bit irritated. Hubby and I got some food for the Boy and Mercy, and then we got some other stuff to fill in until we can get to the pantry. At the register, his card was declined, even though the bill was less than fifteen dollars. I said we would need to void the order, and I apologized profusely. The cashier put her hand on her hip, sighed deeply and said to me, “You mean you don’t have fifteen dollars?” I told her that no, I didn’t. She couldn’t have been more condescending if she had tried. A kind and generous soul paid for our few items. If you happen, by some freak chance, to be reading this blog, once again, a million million thank yous! We will make sure we pay it forward as soon as we can, and then some! 3) A Walmart employee in a bright yellow vest was in the parking lot talking to someone who was in the process of leaving their cart by their car as they prepared to leave. Loud enough for me to understand what was going on, I heard the customer tell her, “Well, I usually bring my cart up front when I’m done,” and then the conversation went muted. Was I really hearing correctly that this Walmart employee was really yelling at a customer who left a basket by her car? Is this what we are coming to now? All indications said yes.

So this is my second out of three nights I have been up and awake past 4am. Tonight I am actually sleepy, which I was not on Thursday evening.

Monday 1:45am

Tonight, by golly, I am going to get this uploaded! The past two nights I have dozed off with the phone in my hand, with a gibberish sentence written, probably half asleep. That will not happen tonight before I finish this thought.

I know this is an odd format for a post, but rather than make short, weird posts I thought I’d do a true journal-style entry. Please forgive me if some of it doesn’t make sense. It probably did to me at the time, and when I proofread it as well. But sometimes I forget when I have a thought in my head, I don’t remember to include all the background. If that is going on here, I am sorry!

It has been a weekend of rest and recovery before swinging right back into life in the morning. The pain has been worse than usual, but the additional pain meds seem to be making things at least a little tolerable. Sunday was the first day I did not leave the apartment since Monday last week. Truly, the one day respite was not nearly enough, but life, as they say, goes on, whether or not I feel like participating.

As far as withdrawal symptoms go, I’ve been doing rather well. Twelve hours seems to be fine, plus I do have the breakthrough pain meds that help in that sense. They aren’t very strong, so I hope they will continue to be sufficient over the course of the next month. If not, I will ask to switch to tramadol instead. No sense in keeping the extra narcotic if it isn’t doing its job, right? Right!

We were blessed today by a loved one with a substantial gift. They know we’ve been struggling, and it was well appreciated. Tomorrow during breakfast, we will work on our first real grocery list since about March. It has been a very long time since we have had enough to get us through a month without worry. If you are reading this entry, please know that we both thank you, and love you dearly.

I am going to wrap this up and get it online. Thanks for bearing with this longer, oddly formatted post. Let me know here, or on Facebook, how you liked the format. If it works better than a series of shorter updates, I’ll continue the journal entries thusly. As always, thank you for stopping by and reading. Soft hugs and blessings!!

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Surprise!

Hi all! Today is my first official day of the new tapering regimen, so I probably won’t have much to report today, but I did want to give a quick update on hubby, whose appointment went okay yesterday.

I actually don’t mind going to Tampa (if only I didn’t have to drive there) because the doctor runs very on time, and often early. That was the case yesterday. Our appointment was at 3:30pm, and by that time we were on our way to the outpatient lab for a quick blood draw. Anyway, hubby filled the doc in on all his falls (at least 6 in the last 4 months) and his feeling of generally not doing well. The doc ordered a bunch of new MRIs and an ECG to rule out a possible heart issue with dizzy spells. He also posited that hubby’s feeling unwell could be from the extreme summer heat. Our next appointment is in November, and it generally begins to cool down around mid-October here in central Florida. Hubby is to make extensive notes about how he feels when various things happen, so the neurologist can put this puzzle together better. I am learning that multiple sclerosis is much more challenging to manage than Fibromyalgia.

On the way home, after over an hour of being in rush hour traffic, we stopped at the pharmacy to pick up my medication and some food for the “kids.” Standing in line at one register, I spotted a young girl who greatly resembled my brother’s oldest daughter. Upon closer observation, the woman paying for the items on the belt ended up being my sister. Both siblings live out of state, so it was a huge surprise to be at that exact spot at the same time. They are in town for a few more days, which my mom will absolutely love. She loves having visits from her family, and though she never says so, she must get tired of seeing just my face! There will be quite a crowd, consisting of four generations, as my nieces are both here, one with her two young sons.

I will update periodically as I have over the next few days, and as I have something new to report. Blessings to you all!

Tapering – Step Two, Take Two

I have sat down to write this post a dozen times in the last week. I’ve been wanting to update everyone who is following this journey about the next step, which will start in less than twenty four hours from now. I am nervous, considering how badly my first attempt went. But, I think we have a good plan going forward.

Last week, I saw my pain specialist and let him know how the process is going. When I saw him two months ago, it seemed like he believed I might have been a little premature in deciding to taper off the meds. This time, the attitude around the office was much different. The tension was thick in the air, and I got the feeling they (the pain clinic) are being pressured by the state and their ridiculous new law to reduce the number of narcotic painkillers they prescribe. I did tell him I attempted a taper on my own, and that the pain nearly destroyed me. So our plan is to continue with the 15mg cut in dose, making my morphine equivalent dose 30mg a day on extended release. To deal with the breakthrough pain, he prescribed a very low dose of hydrocodone. He recommended tramadol, but it was something that didnt work that well at the time. When it’s all said and done, that 5mg of hydrocodone won’t be a problem to quit, not after quitting 90mg daily of morphine equivalent total since January. I lost my breakthrough pain meds at the beginning of the year, before this stupid law was ever passed, because my insurance wouldn’t pay for it anymore. In our current situation, an extra Ben Franklin out of pocket for meds is out of reach, as it is for many struggling on disability.

In the morning, we are driving to Tampa to see hubby’s neurologist about his newest MS symptoms. He thinks he will end up admitted to the hospital for a steroid infusion. Because this hospital is over 60 miles away, I would need to arrange for someone to come sit with the cats while we are gone, and it would be the best part of three days for the infusion. Sometimes the steroid can stop or slow down the severity of his relapses. We are really praying about the infusion the doctor wants to do. I think the brand name is Ocrevus, or something to that nature. The actual drug name looks like Klingon to me. Anyway, that’s the scoop on hubby.

So, I am looking forward to pressing on with this taper. By a generous gift, my WoW account is up to date and ready for a month or more of serious pain and the need for diversion. (Yes, I play World of Warcraft. For the Alliance!) Once I get started again, look for updates as long as I am feeling well enough to type.

My eyes are heavy, and the “kids” will have me up for breakfast before I can say “Cat Food.”) As always, I appreciate your audience more than you know. And stop by our Facebook page to say hi! I’d love to meet y’all!

One Week To Go

Hello everyone! Boy, has it been a busy, busy week, and I only have one more day to go before I can rest. Hubby finally had his bad tooth removed this morning (we were up at 4:30, and that is am!!) Mom has had a couple of appointments spread out over 4 days, and an impromptu trip to Tampa on Monday rounds out the busy week. I am supposed to see the eye doctor tomorrow, and believe me I really need new eyeglasses, but our accounts are tapped out until next week. It, along with many other things, may need to wait.

I have not been updating this like I had planned, but as I have mentioned previously, I have not had much change as far as how I’m feeling. It has been good to get out of the apartment, away from the four walls that have surrounded and smothered me for the past two months. The only good thing about being home is staying cool. The weather has been oppressively hot and humid, and the heat saps my energy quickly.

Next Wednesday, I see my pain specialist again, and we will discuss either continuing or abandoning the medication tapering. If we can devise a plan where the pain is controlled without switching to a medication like methadone, I am all for it. But I am very hesitant to switch one opioid for another. I may have to accept the possibility that I might just have too much pain to discontinue these meds altogether. My primary care physician did tell me at one point that I am the worst case of Fibromyalgia he has ever encountered. That’s always encouraging to hear, along with, “We have run out of treatment options for you. Now we just control your symptoms.” Gee, thanks.

By now, I hope you have found us on Facebook. The new page has been up and running for a couple of weeks, and I am honestly trying to keep it fresh and updated with posts about 4-5 times a week. If you haven’t seen our page yet, click here and visit. You can also share our page and any of its content with friends, family, neighbors, anyone and everyone is quite okay with me!

Last post I mentioned that the makers of MyPainAway Fibro Cream sent some samples my way. Guys, that stuff is simply amazing! I used a bit on my feet tonight, as I have some neuropathy, and it dulled the ache to almost not even being noticeable! It is insane how well it works, and I wonder why I just gave up looking for it in town after CVS stopped carrying it. How I lived without it for so long, I can’t say. But I won’t be without it again! I can’t wait to get a full sized tube of it, so I won’t need to skimp. With this added to my pain relieving arsenal, so to speak, maybe I will make it through the taper after all!

Anyway, it is late and once again, I need to be up early for yet another appointment. At least this one isn’t mine. I know I’ve been promising that new recipe, and I’m almost done with the post. I just need to tweak the instructions, and waiting on feedback from my sister, so that everything is perfect. I can’t wait to share it!

Have a blessed week, y’all!

Tapering Update

I know it has been awhile since I’ve updated this, and for that I am truly sorry. The truth is, not much has changed since I went back to my higher dose. I am still having significant pain issues, despite the extra 15mg of morphine equivalent medication. I am really wondering if I should continue this taper, so I will surely be discussing this with my pain specialist on August 1.

I had another whole post written, but it was done over a 24 hour period, and it just didn’t make much sense to me when I went back to read it. Though it had some good thoughts, the bulk of the writing seemed like gibberish. I certainly wouldn’t want to unleash that mess on anyone!

There was something that I wanted to touch upon that I had written in my pain-ridden haze. While on Instagram last week, I stumbled upon Topricin’s page. Topricin is the company that makes MyPainAway Fibro Cream, a product I have used in the past with good results. I commented on their post that I love the product, but couldn’t find it locally. The CVS on our corner stopped stocking it years ago. They replied asking for my ZIP code, and they would locate a retailer who carries it. When they replied with the names of the stores, I mentioned casually that I will go as soon as we can to get a tube. It was then they offered to send some samples to hold me until payday. I am so incredibly thankful to Topricin, because they took the time to answer my inquiries, and then went above and beyond anything I could have imagined. I wanted to publicly thank them for their kindness.

So, we are still on the road to recovery, both of us. Hubby hasn’t been feeling well either, so we have been just trying to feel better. Today, though, I have committed to staying housebound. It’s been one of those days, and I have some tidying to do. I am not sure how long I will be able to clean, but chances are I will do more than I should, and I will end up worse. People who are well take so many things for granted. I used to as well, before the Fibromyalgia took over my life.

I’m sorry for my brevity, but if I don’t move now, I might not until tomorrow. Peace to you, and blessings!

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!

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.