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!

Advertisements

Family, Friends, and Those In Between

Gamer

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.

The

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.


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.”


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!

Hurricanes, Crises and Decisions

Hello everyone!  When I last checked in, we were in the middle of a huge crisis, which I said I would write about if I thought I could do the story justice.  I also have some thoughts on the events that are affecting the Carolinas with Hurricane Florence, and some realizations I’ve come to with my own life.

First off, I want to tackle Florence.  We have several friends and family in the affected areas, and I have been following their posts on Facebook throughout the past few days.  Now that Florence is upon them, it brings back memories of the anticipation and the stress of expecting Hurricane Irma last year.  My friend’s wife, who is mom to three children, ages 3 to 18, is scared to bits for her family’s safety and for the property they had to evacuate. I know that fear intimately. Last year, when we watched in horror as Irma shifted to Florida’s west coast, I was positive I had poorly made every decision, and we were going to lose everything.  After all, Irma was a “super hurricane” that decimated Barbuda and other small islands in the Caribbean, and it was headed right at us. But we survived and ended up being incredibly blessed, as the eye wall of the storm passed about 40 miles to the east. Florence is a bit of a different story, however.  She is nearly stalled, and will cover precious little distance over the next 36-48 hours. The sheer amount of rain that is forecast is mind boggling, and the North and South Carolina coasts will have hurricane force winds for well over 24 hours. My friends and family would surely appreciate you joining me in prayer for their safety.


About eighteen months ago, my mom was still living at her own home when she slid out of bed and landed on her backside just out of bed in the morning. What started as an unremarkable fall ended with her ankle severely broken, admitted to the hospital and in a walking cast for six weeks. I knew that morning when the ambulance transported her to the emergency department that she would never be able to go home.

Right out of the hospital, Mom was admitted to a rehab center.  I was pretty unsure where she would live long term, but I was quite scared because at the time, my mom paid me instead of a caretaker, to care for her, transport her to doctor appointments, do her shopping and house cleaning.  With her not being in her home, I knew that income was gone, and this was the beginning of what has been a building financial crisis for hubby and me.

After her rehab was completed, my plans were to keep her at the skilled nursing facility where she had been since her release from the hospital. My family fiercely disagreed with me, and decided to converge on me last year in August to convince (more like strong arm) me to move Mom to an assisted living facility.  Previously, her doctor had supported my decision to keep her in skilled nursing, since she was not thriving, having lost about 30 pounds since her admission that April.  So I was surprised when he told me he felt she could possibly benefit from the environment an assisted living facility would provide for her.  So, I toured a couple of facilities and crunched the numbers.  Her financial ability to pay for such a facility relied solely on her Veteran’s widow benefit being increased to an assisted living rate. I knew we would have plenty of paperwork to complete.

Three days before Hurricane Irma, we moved Mom into her assisted living facility.  I gave her my old cell phone, gave her a brief lesson and drew diagrams so she would know how to answer it, kissed her and left her in the capable hands of the ALF.  Meanwhile, I was getting harassed by my family about things that were completely out of my control regarding my mother.  Having had enough, I told them to figure the details out among themselves, that I was too busy trying to figure out whether to evacuate or stay home, and worrying about our survival.

Anyway, during the hubbub of the hurricane, the VA paperwork was delayed until November, when it finally got submitted.  We were already two months into helping Mom with her expenses, because her income did not cover everything she needed.  We ended up helping not only those first two months, but until April of this year.  For nearly eight months, we laid down over two hundred a month to keep her in her ALF and all her necessities paid.  We ended up draining our emergency savings account, and ran up some sizable debt trying to keep ourselves alive.  Hubby and I are both disabled; he has Multiple Sclerosis and I have severe Fibromyalgia.  You can imagine a disability income doesn’t have much wiggle room.

Fast forward to last Friday, the 7th of September.  It began as a normal day, until I saw an email flash across my computer while I was doing some research.  The email was from my Mom’s bank, and it was an overdraft notice.  I forgot to mention that when Mom was finally awarded her benefit increase, the VA magically found a sizable overpayment, and decided that they would take a portion of her benefit.  That debt also negated the retroactive payment Hubby and I were counting on to help our recovery, replenishing our savings and paying her mounting medical bills. We applied immediately for a waiver of the debt, because she does not have enough disposable income to pay back this size of debt. I had no advance notice of a decision,  and no reason to believe anything was different, so I paid her bills as usual.  Rent and cable. So when I checked her account online, my heart sank when I saw a negative balance of over $200. This was well after the VA offices closed, so I had to worry about this crisis over the weekend.  I didn’t sleep well, and having run out of my pain medication on Saturday, the weekend was looking pretty awful.

On Monday, we discovered that we could call the VA debt department (I forget the exact name) and arrange a more affordable repayment plan, one that would allow us to keep Mom where she is, and not have to move her back to skilled nursing.  We also found out that there had not been a decision made on the waiver, so if they did decide to forgive the debt, they would refund any monies taken. They are also processing a refund for the difference between her old and new payments. After pulling some financial strings, hubby and I managed to cover the huge overdraft (it had grown to double with fees and an additional item.) The crisis is over, and we paid a heavy price for it.

In the one year since Mom entered assisted living, we received no offers of help from the family that coerced me into placing her there, even when it was well known that we were struggling.  All we ever heard was feigned surprise, and nothing more.  Even this past weekend, I sent out an SOS to my family, and heard nothing.  Crickets. All we’ve accomplished is financial ruin for us, and Mom is still wildly unhappy. She just wants to return to a home that she no longer has.  It breaks my heart, not only because she is unhappy, but because her other children don’t care enough to lend her a hand when she needed it.  Such is life.


I mentioned in the above story that I had been out of my main pain medication since Saturday, and my last post covered some of that briefly. I had said that I was expecting the withdrawals to be bad, and that I didn’t think I’d be willing to go back on the meds once I had gone through the worst part of the withdrawals.

I was wrong.

Shortly after I published my last post, I awakened at 2:30 feeling ill. I recognized the symptoms immediately; cold sweat, shaking, rapid heartbeat, just feeling really rotten.  I knew if I didn’t do something, and do it quickly, I would not be sleeping the rest of the night. I had a bottle of immediate release pain meds that I have been nursing along since January, taking them only when I desperately needed them.  Those pills were the first casualty in the Great Drug Taper of 2018, out of financial need rather than by legislation. I checked the bottle and found five little pills left. I took one without even second guessing myself, and finally got back to sleep right as my alarm was sounding to feed the cats. Hubby had a lab appointment on Monday morning, which was when this occurred, so I just stayed up.  It was also the day where I knew I needed to run errands and make phone calls to clean up the mess the VA helped me make. I decided then to save those precious few pills for bedtime, and just deal with withdrawals during the day to the extent I could tolerate it.

I’ve since been able to get the medication, and I filled them without regret.  The pain still has not settled down since I started the meds again, and I don’t think it will at this dose, which brings me to the last part of this big ol’ post. Tentatively, I am leaning toward discontinuing the medication taper. I’m just having a very rough time with the pain, and I strongly suspected that I would eventually.  I still haven’t made my mind up yet, and I think a lot of that will actually be decided when I get my health plan’s benefits for 2019 ahead of open enrollment in October. I’m not optimistic that my plan, or any other Medicare plan in Florida will continue to pay for pain medications at the current level.  I am expecting a tier change and cost increase across the board for the medications I take, although I’m sincerely hoping not.


So that’s my life in a nutshell over the past weekend.  I’m glad it is behind me, behind all of us, and that everything looks up from here.   And, I’d also like to publicly acknowledge my hubby’s 52nd birthday today, September 14th.  I am blessed to be your helpmate, and the kitties and I love you to the moon and back.  Happy Birthday, HoneyBear!

I will check in again soon. If you are in Hurricane Florence’s path, you are in my prayers.  Be safe and dry, listen to local news and instruction, and stay put.  Hang in there!

Soft hugs to you all!  Have a blessed weekend.

Tapering – A Whole ‘Nutha Level

Hey everybody! I want to make this post short and sweet, but I have something significant to say.

I will get right to the point. My tapering schedule will be altered slightly, with the possibility of being permanent. Very long story short, a financial crisis has left us unable to pick my pain meds from the pharmacy until Wednesday this week. I have been out of my main medication for 24 hours. At first I panicked, but I remembered I still have a small number of the breakthrough pain meds left from last month. Those are significantly less potent than my extended release (5mg vs 15mg) and if they are able to keep the worst of the pain away, and those pesky withdrawals, I might call this good. By the time I can actually get them, I think I will be past the worst point. And cold turkey off 30mg a day is a far cry from where I started in January at 90mg a day. I don’t figure there would be reason to start again once I’m past the rough part, right? Right!

Of course, if the pain starts kicking my butt, and I strongly suspect it will within the next 24 hours, I don’t think I will have a choice but to continue taking these meds. But I will let you know how easy or rough a time I am having, and what my decision will be regarding this whole mess. And maybe, if I feel I can do the story justice, I’ll write about the circumstances that led me to this point. Right now, I just want to get through until Wednesday.

If you are the praying type, I would appreciate prayers for this event I am currently struggling with, and for some resolution in the finances that brought me here. Thank you, and I will be in touch soon!

God bless, and gentle hugs!