The Finale

Good (?) morning everyone!  I honestly do not know why I am typing this as though I am perky and happy, when the absolute opposite is true this morning. Last night was my second night in a row where I lay in bed awake, fidgety, miserable, sweaty, and whatever else you can think of that is a synonym for awful, throw that in, too. Let me explain.

On Monday, I had planned on beginning the final leg of my medication taper, which technically I did. Except I didn’t.  A second dose crept in, because it was supposed to be there, and I forgot to adjust my medication box this week to accommodate my plans. So on Tuesday, I went almost 24 hours between doses of the morphine, up from my previous best score, so to speak, of 18 hours between.  What’s another 6 hours, I thought?  Well, it’s a big flipping deal, apparently.  At about the 20 hour mark is when I start getting the first hint of withdrawal. Feeling overly warm.  Headache.  Cold sweats.  Not to mention the pain that I’ve had since early last month as a result of this final lap.

This was the part I knew would take the most amount of will power and determination. I wasn’t counting on massive sleep disruption in the process, because NO ONE tells you how this type of thing affects, you know, actual pain patients.  If I know one thing about Fibromyalgia, it is that this disease requires, and I mean requires a good night’s rest.  Forty eight hours with just 5.5 hours of rest in that span is nowhere near enough, not for a normal, and certainly not for a fibromite.  So after one night of no sleep, I thought I fixed the problem last night.

I did not.

I thought I was being sneaky, and I took it two hours before I knew I’d be heading for bed.  And I was hoodwinked into thinking my little scheme had worked.  I got away with fooling my body.  Except for the part where I didn’t, because when it is being tricked, the human body can come up with some pretty extraordinary tricks of its own.  Restless leg syndrome, something I thought I didn’t have to deal with any more. Wrong.  Neuropathy and allodynia make anything touching my skin hurt. Sheets?  Forget about it.  Clothes?  Nah.  Who needs to wear pajamas to bed?  Combine RLS with neuropathy and it’s a recipe for insomnia. I would say this week has been a nightmare, except I would have to sleep to know about nightmares. I can’t roll my eyes enough right now without losing them out of their sockets. I’m done.

When I reflect and see the incredible amount of progress I’ve made on this adventure, I can’t say that I’m upset that this is the end of the ride. Am I disappointed that I can’t manage to squeeze out this last bit of medication?  You bet I am, but I won’t beat myself up over it.  At least now, if I ever get to a point where I am forced to taper due to state or even federal law, I don’t have as far to go. I sincerely hope and pray that we as a nation do not get to that point, but the climate in D.C. is not conducive to constructive talks on the drug problem without penalizing legal patients.  We are the easiest target, and we will be the first to feel the squeeze. Period.  If we can learn anything from the past and from current trends, I can predict that things will only get worse from here on out.

So now, the only formality is informing my pain specialist of the progress, or lack thereof, of this final lap of the taper.  He might still surprise me with another option I didn’t know was available, but I’ll cross that bridge when I get there.  I still have about a  month before I see him.

Now, if you’ll excuse me, I have some pain meds, a pillow and a sleep number bed calling my name. I hope they really mean it this time and aren’t teasing.

Happy Thursday to all! Gentle hugs and blessings.

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Quick Update

Hello everyone! I hope this post finds you feeling great and being blessed. It has been a very busy few weeks, and I apologize for not updating this like I had promised. Life, as usual, has a funny way of interfering with my “want-to-dos” these days. So, now that it is quiet, I have a few moments to bring all y’all up to speed on how my taper progress is going.

Crazy that it has been nearly a month since I began my last leg of this journey, and crazier still that the first month of 2019 is in the books. Hubby has finally gotten approval and appointments scheduled for 24 visits with physical therapy. He began three times a week yesterday morning, and will continue for the rest of February and possibly into March, depending upon how he is progressing. So between this and other appointments for him and me, we have been pretty busy bees!

As far as the actual medication taper is going, speaking in terms of withdrawals, things are mostly going well. There have only been a handful (2-3 times) that I have really been uncomfortable with that aspect, and each time I can pinpoint why. But as it has been this entire journey, this is a learning experience. I now know, by mistake mind you, that when I finally go to once per day, that I should take it at bedtime to minimize the ugly effects while I’m attempting to rest. Found this out the hard way, but it is what it is.

From a pain standpoint, sometimes I question every thread of sanity I might have left when it comes to the taper. Of course the pain has ramped up to levels of awful, and I expected it to an extent. Mostly, I get little sharp, stabby pains in odd places that linger for a minute or two, and they’re gone. Today’s pain is in my gut, though I suspect that might be related elsewhere. My doctor says that withdrawal related pain is usually more widespread rather than localized, but I seem to be a trendsetter in this department.  I’ve also been very sparingly using the immediate release pain meds since last week after a bad reaction to them.  It wasn’t an allergic thing, but I just felt very icky about an hour after taking them.  Cold sweats, nausea, just generally feeling unwell… I’ve had these symptoms before when I used to take hydrocodone years ago, which was one of the reasons I stopped that medication. I have a strong feeling I reacted so badly to it because my stomach was empty, even though I had not had a problem before then. So, I’m basically sucking it up and pretending I’m doing okay once I walk out my front door.  At home, I’m miserable.

With the reduction in dosage, I will not need to fill the new script as soon as I have in the past few months. Nevertheless, I am planning my next reduction in dosage beginning next week, starting February 11. Hopefully, this is enough time that I am used to this dose and can handle the next stage. I’ve been too hasty in the past with dose change, and I had to pedal it back quickly. I do not want a repeat of that disaster, trust me!

We have some news on Hubby’s MS and related stuff, too.  His MRI revealed a bulging disk in his spine between C5 and C6, which the neurologist believes is responsible for his spasms in his shoulder, and the tingling and numbness in his hands. This finding explains a LOT for him, and it makes total sense.  The CT scan of his lungs revealed nothing new. He was being monitored because a CT a few years ago found two teeny, tiny little nodules in his lung.  They have not grown, nor have they changed in the years since they were found.  The best news, however, is that the MS seems to be stable, with no evidence of new lesions in his brain or on his spinal cord. Praise the Lord!

So, now I’m all up to date with everything that has happened since the new year came upon us.  I will continue to update on the taper when there is something to report. I am also collecting Mom’s old tried and true recipes to share with you.  I hope you are looking forward to them as much as am looking forward to sharing them.

God bless, and gentle hugs to you all.

Tapering Hiatus

Hello everyone! I’m so very sorry I’ve not gotten back to regular writing yet. I know you all know it’s been a rough month for me, but I’ve been trying to get back to life and normalcy. It’s just not working out as I had hoped, but it’s only been a month since my Mom passed away. I’m not going to rush into making myself feel better because I think I should.

Anyway, I have an update on my tapering progress, and I’m thinking that this might be my last post concerning that topic.  I had an MRI at the beginning of the month after my last doctor appointment, and I think I might have even mentioned this in an earlier post. My results appointment was on Thursday last week, and I have some disappointing news.  It turns out the pain in my back stems from a protruding disk between T8 and T9 in my thoracic spine. Before I even told him what the symptoms have been over the past 3 weeks, he told me what they were.  He nailed every one of them. Pain radiating forward around my rib cage.  Difficulty drawing a full breath because of said pain.  Costochondritis pain (which is inflammation of the breast bone and cartilage surrounding it.) The feeling of having been hit with a hard object.  Yep, I have all of those lovely symptoms.  The MRI also showed some degenerative changes in my neck and lumbar spine.  I’m in terrific shape.

For now, he is keeping me on the same medications.  Leaving the doctor’s office, I said to Hubby that, in light of this new information, I most likely couldn’t finish my medication taper as I had desired. And he said no, probably not. Am I bummed out about this?  You bet I am.  This is not how I had hoped this would go.  In fact, I was hoping to be completely off of the medications by Christmas and beginning the new year fresh and free.  And as this drags on and I face more setbacks, it seems less and less likely this will happen at all. In the meantime, I’m starting to rely upon my CBD oil a little more, to fill in the gaps in pain coverage. I am, after all, 60mg less than I was in January, and I’m still coping with the discomfort that is bringing.

This brings me to my last point of this post.  I have come a remarkably long way in this journey to being opioid free. Even if I don’t realize my final end result, I am still proud of myself that I have reduced my dosage successfully by two-thirds. To go from a 90mg equivalent dosage to 30mg a day is a tremendous accomplishment, and to have done so willingly, this is probably my most significant achievement in a very long time. If I stay where I am for the rest of my life, and can manage my pain effectively using this dose, I’ll be content with that.

While I anticipate that this is the end of my tapering journey, my doctor might have other ideas that will work towards achieving that end eventually. Right now, his main concern is getting my existing pain under control. So I want to thank each of you that follows this for the purpose of keeping informed about the medication taper. I invite you to stay, because the new year might bring some other news.  Fortunately, I cannot tell the future.

As always, I thank you all for following me and my journey through life.  You have no idea how much I appreciate your audience, prayers and well wishes.  Blessings to all of you, and wishes for a pleasant weekend!

Family, Friends, and Those In Between

Photo Credit: SunnyDayStarryNight at Flickr

In the years since I’ve become disabled and unemployed, I have developed a bit of a gaming habit. Now, I know this isn’t the best or wisest use of my time, but there have been many days when I have relied upon the distraction therapy that the games provide me. I don’t tend to think about how badly I hurt while I am immersed in my online world. If that makes me weird, then weird I shall be!

Though I have played many over the past 20 years, there are two to which I return on a regular basis. My first love was and still is The Sims franchise. My beloved mother-in-law started this obsession on my 30th birthday when she gifted the original Sims game to me. I have owned almost every game, expansion and stuff pack made for every Sims game, including The Sims Online. We are now on The Sims 4, and I continue to adore my “digital doll house,” and every family that I have created and played has left fond and lasting memories. In fact, one of my favorite families has inspired in me some creative writing, a sappy, sometimes awfully gooey love story which is still in progress. If Sims fan fiction interests you, you can catch up here. Keep in mind, if you do visit, that the story has not been updated in quite some time.

My second favorite game, which was actually encouraged by my enduring love of The Sims Online, is Blizzard’s World of Warcraft. In 2008, The Sims Online, which by then had been transformed into EALand, had shut its servers down for good. TSO was my very first massively multiplayer online role playing game, or MMORPG, and I was heartbroken when it went offline. Enter World of Warcraft. Hubby has always been a Blizzard fan, having played the first Starcraft years before. It was he who got me immersed into the cartoonish but beautiful world of Azeroth. I began my subscription for the first time on April 1, 2008, just four months before EALand’s eventual demise. My first character, a blood elf hunter named Evilwendy, still lives and is still actively played to this day, though she has switched her allegiance from the Horde to Alliance, and has become a void elf in her older years. I still truly love playing her, despite the fact I am still not very good at it.

WoW is an extremely social game, but only so much as you allow it to be. You can join a guild or fly solo, join groups to raid dungeons or simply quest on your own. Early on, as a new player, hubby and I were involved in a guild of about 200 other players, a few of which we are still in contact with today. Eventually, hubby quit playing and left me to wander in my newfound habit alone. I joined up with another guild around the end of my second year playing, and met lifelong friends. Three people in particular, guys that I have kept close contact with both in and out of game, have become who I call my “brothers from other mothers.” We all spent many a night playing and chatting on Skype, building cherished memories. We still laugh about epic battles and the prized loot to this day.

Evilwendy and the “Prized Loot”

About a year later, the guys all quit playing at the same time. I played for what felt like an eternity alone, not wanting to give up our guild or my “kids” on that server. But I was lonely and after I decided they really weren’t coming back, I switched servers and allegiance, and created my first Alliance character. On the new server, it was just like starting over from scratch. No money, no guild, no friends. Although I joined a new guild, I had a rough time making friends. So in 2012, I took a 9 month hiatus from World of Warcraft.

In mid 2013, around 8 months or so into the expansion known as Mists of Pandaria, I returned to Azeroth. I missed my characters and the old content my brothers and I had once done together. But I also revisited my newer Alliance “toons,” as we call them, and joined a different family guild. I quickly fit into the new group of people, and made a whole new family of friends. We have been playing together ever since. My best girlfriend, who goes by Brandy in game, lives in Azeroth (and Louisiana!) To date, my character count on my current server stands at fourteen, and of those, three are at top level. I’m not sure it says much about my life, but it sure says volumes about my level of pain that I would play so often. As I stated earlier, the distraction therapy really helps me not think about hurting so darn much.

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The fact is, the Internet has changed how people interact with one another. Some think their phones and mobile devices have liberated them, while other see themselves as slaves to them. No one can deny that tops of heads are the first thing people are likely to see in a room full of electronics, instead of faces. We no longer make eye contact with those to whom we speak, but vie for attention with phones and iPads. That being said, I would not have met my husband without the Internet. I was a late bloomer of sorts, not having my first computer until my mid 20s, but the Internet has held me captivated ever since. It was instrumental to my survival in the years after my diagnosis of Fibromyalgia. People from all over the world, from all walks of life, folks that I would have never been able to contact or have any interaction with at all, that is the direct result of the Internet. Love it or hate it, the ability to go online is a lifesaver for those who either cannot socialize normally, due to disability or phobias, or who are away from their friends and families.

I believe my life is better, enriched by the people I have come to know over the course of 20 plus years online. It does not matter to me at all that I have never met the majority of my online friends face to face. I did manage to meet a small handful of people face to face, including my husband, that I had met online, and there are still a few I’d love the chance to see. But the friendships I have now are more than sufficient for me. They are my family, and I am theirs. Even hubby has a dear friend that he met over 12 years ago in a Christian forum. She and her husband have been so very important to both of us. We have watched their children born and grow up in pictures, celebrated successes and mourned failures together. During one of the roughest years of our married lives, it was our online family and friends who helped the most. We have played together, prayed together, laughed and cried together. We have celebrated the birth of children, the loss of loved ones, and everything in between. We have that one precious thing in common. We are nerds. There, I said it! We. Are. Nerds. I’m so not ashamed of that title any more. Whatever has brought us together bonds us, in many cases for life. Blood may be thicker than water, but you can’t make lemonade with blood. I’m just saying.

I think the photo at the front of this post says it all. “I don’t need to ‘get a life.’ I’m a gamer! I have lots of lives.”

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Author’s note: This post was originally written, posted, and for some reason removed and reverted back to draft form. The reason for this is unclear, but I have not done a good job of remembering my original post. I sincerely apologize for this problem, and have taken steps to avoid this occurring in the future.

Tapering – Taking A Break

Hello everyone! I just wanted to give a quick update on what is going on after today with my medication taper.

If you have been following my journey with opioid tapering, then you know that I’ve been agonizing over what to do next. However, my doctor wants me to stay where I am with my current dosage. I told him today about the significant pain in my mid (thoracic) spine, something that is fairly new over the past few months, and I believe totally unrelated to the fibromyalgia. He has ordered an MRI study of my thoracic spine, so that we can chart a course of treatment. So, for the time being, my taper has been suspended, at least until I get some of this horrible pain under control.

I have very little doubt that the increase in overall pain is directly related to the medication taper. On the other hand, this back problem came from literally nowhere, and I am scrambling to figure out what, if anything, I’ve done to cause it. Frustratingly, the opioid medications do precious little to relieve even a little pain, unless I double up on the smaller dose. I don’t have enough of those over a 30 day time frame to do that very often, so that is not a solution for the long term. My MRI appointment is next week, and I’ll be anxiously awaiting the results of that study.

So that is where I am for the next two months, maybe longer or not, depending upon test results. I already know my lower spine is a hot mess. October is looking to be interesting, to say the least.

Thank you again for reading and following my tapering journey. Blessings and gentle hugs to you all!

Crossroads

Hey everybody. It’s me checking in again, if you are following my tapering journey this may interest you somewhat.

I am about a week away from my pain specialist appointment (man, those two months went crazy fast), and I have some decisions to make regarding my medication taper. According to my health plan formulary for next year, my pain meds, and only my pain meds, will be increasing in cost by nearly 11% each, a real bargain considering my medication copays rose 4200% last year per medication. Anyone who thinks that is nuts, raise your hand. Dang, I see a LOT of hands out there!!

If money was no consideration, I would probably go back to a higher dose per day than I am currently taking. But that is the main issue right now. Money is very tight, and we are both getting tired of not eating well, and sometimes not at all. The truth of the matter is, I don’t know what our situation will be next week, never mind next year. I don’t know if my medication co-pays will be affordable or not. At the same time, from a pain standpoint, I’m not sure how feasable a complete taper is, either. I have much to think and pray about, and I am running out of time quickly.

My back, which I strained last week cleaning our car, has not been healing very well. The last few days have been dreadful, and even the opioids aren’t helping the pain. That isn’t a really big surprise, however, since ibuprofen and naproxen are best for inflammation. I can only take ibuprofen on a rare occasion and naproxen never, because I caused my stomach some great harm taking those medications in the years before my Fibromyalgia diagnosis. Right now, my heating pad is my best friend, even if it does cause me to sweat. Something about summer in Florida….

In other news, and this requires a short back story, our warranty replacement of our beloved Vornado tower fan was stolen after UPS delivered it. The one we had was starting to make some grinding, rattling sound as if the fan unit was out of balance. It ran on one speed… tornado… and was too chilly at night time. So after contacting the company for a warranty repair, they offered to replace it. And someone stole it from our front stoop. That won’t be happening again, as we will be rerouting all incoming UPS shipments to our leasing office. It’s a shame that others can’t keep their fingers off other people’s belongings, but this is, after all, a broken, fallen world. Stuff happens.

So that has been my week so far. I hope sincerely yours is going much better than mine has. Take heart, it’s already Wednesday! Have a blessed remainder of your week. I will check in again soon.

Being A Blessing

Have you ever done something, and the moment you did it you just knew it was going to hurt later? This can apply to anyone, whether or not you suffer from chronic pain. You bend down and something clicks, and your knees lock. You stoop over to pick up something, and suddenly you’re on the floor in agony. You reach over your head for a plate from the cabinet, and your shoulder freezes, causing spasms and pain.

Well, this was me yesterday. A couple of days ago, I received a phone call from a lady friend who was in need of a ride with her cat to the vet. Being a softy for 1) cats, and 2) cute little older ladies, I couldn’t say no. The only obstacle was getting her into the back seat of our car. It isn’t that the car is too small; in fact, it is rather roomy even in the back seat. The problem was our growing heap of clutter from one too many road trips to the VA, and not grabbing empty water and pop bottles when we leave the car. This had to be substantially cleaner before I felt good about taking her anywhere.

So yesterday, armed with a 13 gallon trash bag, which we filled, incidentally, we set out to clear the car of our trashtastic pile o’stuff. And while I was bent over picking up the last few bottles from the floor board, I felt it. That all too familiar shooting pain, and instant gnawing ache, it was right there in my lower back. And like a dummy. I ignored it!

After the car was tidy, we went to the grocery to get some half & half for my coffee (priorities, man!) and returned home. It wasn’t until I sat in my recliner that I was reminded that I had hurt my back. Heat and ice, my usual best friends, deserted me. Their brand of relief must have been on a vacation, because neither of them have returned. I even took an extra pain pill, hoping it would settle everything, but nooooo… of course not!

So, this morning’s errand was difficult, but I knew what I had volunteered for when I offered my car and time. The last thing I wanted to do was let her see how much pain I was in, because I think she already felt a little guilty asking for my help. It isn’t that I could not carry a 14 pound cat, because I definitely can, and could certainly do so much better than a lady using a walker. Every step was me putting on my brave face, and sucking it up like the buttercup I guess I am. By the time I got home, I was walking with my cane, something I very seldom do, and doing so very slowly. From just below my waistline to my tailbone is simply on fire in pain. I cannot stand up straight, and it nearly brought me to tears attempting to feed the cats a short while ago

But if you ask me if I’m sorry I did it, I’d smile and tell you I’m not. If you ask if I would do it again under similar circumstances, I would say yes, and very emphatically. Chances are, I will probably need to play taxi again for her and two cats, and very soon. And when she calls, I will tell her yes. Why? Why would I do this when I am so obviously suffering for having done so? My short reply is, I love to serve others when I can. I’m always the first to hold a door, or help someone in need, even if (sometimes especially if) they don’t ask. I’m really just paying it forward.

I will gladly suffer if it means I get to bear a burden for someone else. I’ll endure any trial if it means someone else won’t have to. I do have a great example, a perfect person after which to model my life. He suffered more than I can ever fathom, even to death. I think I can bear my problems.

Have a blessed weekend! Gentle hugs!