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Happy News!

I haven’t written lately because I’ve actually been enjoying being a little more “normal” than I have been in years (not mentally of course – I’m still pretty much insane probably lol).  I’ve filled my time with doing things and then a few marathons to make myself rest, so that I don’t overdo it and get really bad again.  The tide began to change two weeks ago.

I saw my Fibro specialist and we went over my abnormal labs, plus went through older labs, etc.  Since he’s actually an Infectious Disease doctor he is the one to ask about any wacky things that I might have picked up.  He’s so awesome that he actually worked his way through the entire page of stuff I had researched.  The best part is that he ruled out everything else except for Hep C, which he forgot that he was going to order labs for (so I’ll get those soon, but he really doubts it anyway).  The abnormal labs actually are due to the muscle relaxers, as I had found in clinical trial results, although the reasons for the abnormal results were actually a good sign.  The way he said it is that it just shows that my body is actually processing the medicine, although the higher dose is probably why I never had elevated labs before, and that although the labs were abnormal for a normal person we don’t have to worry until it’s many, many times higher than these abnormals.  *happy dance*  (Back on the muscle relaxers now thankfully!  I can’t wait for the involuntary movements to stop again!)  Oddly enough no one has ever tested for Hep C despite having several inches deep of lab tests.  By the time I saw him I think we all figured everything had been ruled out all ready, so it slipped through.  There are enough overlapping symptoms between it and the combination of conditions that I have that there is a slight chance that I have a mild case of it, but it’s most likely just the same old conditions.  It’s kind of crazy to feel so happy over having the miserable conditions that I have, but I am so thankful not to be facing new challenges!  He thinks that the other doctor’s nurse just isn’t familiar with chronic illnesses like mine, so that’s why she wanted to just blow it off until the next round of labs, and why she focused on the one part that she understood and was instructed to inform me about.

Next, we went through all of the other research.  I had learned about a Midwest doctor that believes that most Fibro sufferers actually have black mold in their sinuses and has a very different treatment protocol, etc.  As luck would have it my specialist actually knows a lot about this other doctor and knows that there hasn’t been any proof of success.  He actually put it really well when he said “If you look for something strange in a group that has problems, then you’re going to find something”.  Well, hmm.  That’s true.  If the black mold in the sinuses truly was the cause, then why hasn’t almost every one of those patients had tremendous successful recoveries?  To give my doctor credit he also offered to get the labs and refer me to the other doctor if I’d like to check for myself, but I have no need since his thoughts make a lot of sense to me.

We also agreed on trying two new medications.  One is prescription and the other is a supplement.  The supplement is 5-HTP, which is a tryptophan in pill form, and helps with mood, appetite suppression, and sleep.  As to the prescription, I had compiled a lot of success stories from patients and research, plus even talked to a few friends in the medical field, about Marinol.  It’s not a recognized treatment for CFS or Fibro, however there has been a lot of success with it blocking the receptors.  Using it for anything beside nausea/appetite is still pretty controversial, especially in the Bible Belt, but he agreed to prescribe it for me to try it for a few weeks.  It had to be prescribed to help with the nausea I’ve had from the IBS and sinus stuff, but I don’t care what is said as long as I can get it.  I don’t know if it will work for everyone, and it definitely won’t work for anyone that is still working, but so far it’s a huge success story for me.  Between the two of them I am sleeping a whole lot, although it’s actually restorative sleep for once.  *little chair dance*  One of the benchmark symptoms of CFS and Fibro is that sleep is non-restorative, which is part of why we’re so fatigued.  True sleep makes such a huge change, let me tell you!  I still sleep really odd times, but who cares?!  After I’ve been awake for a bit I get these bursts of energy and can get some stuff done.  I made a bunch of freezer meal and partial prepped meals, cleaned several rooms, and made some product.  The coolest part is that when the Marinol is in effect it somehow stops a lot of the chatter in my brain.  At any given point I usually have at least a handful of messages bombarding my brain to say a body part hurts.  I get tons of messages about pain that has no reason to exist, then on top of all of the hyper responses from my body I have the real pain messages, plus a lot of random thoughts.  I’ve never understood when people talk about having just one thought or even staring into space without a thought.   My mind has always been cluttered and busy.  The Marinol quiets my brain and almost all of the false pain messages are quiet now.  The pain that I experience now almost all has a reason – injuries, overuse, etc. I never realized how tiring it is to have so much input continually being processed  until it finally quieted down.  It’s been hard to relearn what my limits are without my body continuously complaining and it has been an awesome lesson to learn.  I had truly started to believe that things wouldn’t improve again, so this has been a huge sun filled vacation during an ice age.  *grin*

Today I started another two week trial of the Marinol and restarted the muscle relaxer.  I’m hoping that the next two weeks will be just as successful, although it’d be nice to be awake during lunch a few times.  *laugh*  Poor Larry didn’t have any lunches made for him lately.  It is super hard to fight off the sleepy pull from the medications right now and my eyes feel like sand paper is rubbing over them when I try to fight it.  I’m going to just go with the flow for now and enjoy all of this sleep.  *grin* Expect to see some freezer meals and prep shortcuts since those have been my current research topics.  The next post will be an awesome shortcut that I’ve been absolutely delighted with.  🙂 Anyway, I hope you don’t mind my sharing what’s been going on and I’ll try to post the shortcut later today.

I’m A Little Scared Honestly

This is going to be one of those massively personal, vulnerable, in depth kind of posts, so if you follow my blog for the amusing mishaps as I make my products, then go ahead and skip this post.  This is why I’ve been quiet lately.  Hopefully this will help you to forgive my absences.

For a few months now I have been fighting what I thought was a nasty sinus infection that didn’t want to give up.  They have a tendency to do that when you have Fibromyalgia (Fibro/FMS) and/or Chronic Fatigue Syndrome (CFS), so I wasn’t that surprised, and just kept trying to get over it.  In my many years of dealing with my illnesses I’ve learned that Primary Care doctors hate when you know what you have and tell them what works for you, so I try to avoid having to see them as much as possible.  When you have a chronic illness you have to become your own advocate and typically become way more educated on your illness than any non-specialist could ever be, and they don’t care to not be the smartest one in the room.  I love the medical field, so don’t get me wrong – I’m just a little jaded and sarcastic when it comes to how primary care usually handles my health issues.  *laugh*  Anyway, something has felt off these past few months, very different than what I usually deal with, and I didn’t think it would be smart to try to ignore it any longer.  I finally gave up and went in on Christmas Eve.

He prescribed an antibiotic (wouldn’t do the one my specialist said to tell doctors to prescribe to stop infections in my system, but I really didn’t expect anyone to listen to that anyway, due to that whole doctors hating to be told what they need to do thing) and ordered complete extended labs that they typically run every couple of years when something changes with my conditions.  The antibiotic made me very sick and Christmas was a little difficult to get through, but it made me appreciate being able to see our closest relatives.  Although the sinuses seemed a bit better I still felt that there was something more going on.

The doctor’s office still hadn’t called me with my results after a week, so being the control freak that I am when it comes to my medical care I logged into my medical record (bless the nerd that developed mychart) and looked at my records.  I expected a few abnormalities that I’ve been borderline on for a while and sure enough, I finally reached a point that they’ll have to be dealt with.  I wasn’t prepared for the other highs though.  Some of the tests were items that I’m not familiar with, so I pulled up a few of my favorite medical sites from when I had to do medical coding and record auditing (it’s hard to audit a medical record for accuracy if you don’t know what the words mean, so I did a lot of research back then lol), and researched every abnormal result.

I have liver damage and a problem with my thyroid. All ready having chronic illnesses makes it hard to pinpoint what the most likely culprit is, though, because my daily symptoms are often the criteria for a lot of other diseases.  I did a lot of cross checking and found the three most likely conditions: Hepatitis A, Hepatitis C, and reactivation of EBV (the Epstein Barr Virus).  I had a severe round with EBV in my pre-teens to teens, which actually became CFS and prevented me from attending some of Junior High and High School in the traditional sense.  My counts were so high on the EBV test that it’s useless to ever run that lab again, apparently, because most likely they will always show as extremely elevated for the rest of my life.  So there’s no real way to diagnose that the blasted condition has reactivated and is no playing havoc with my system and chronic illnesses.  Hep A doesn’t come across as too likely since the only way I could have contracted it is if someone spit in my food at a restaurant (my stomach rolls every time I think about that) or if someone handled something wrong at one of my doctor appointments.  The symptoms and lab results fit, which made it a possibility to rule out though, so it’s on my list.  Hep C fits in rather well, although I have no idea where I would have run across that little bugger.  And EBV fits terrifyingly well.  I left a voice mail for my doctor’s nurse to call me finally, back on Monday, but didn’t hear back until today, after I’ve been sitting with this information for a while.  I couldn’t take it anymore and had to call them.

 

Possible reactivation of EBV shouldn’t be scary, but the first round brought about one of the hardest, and darkest, periods of my life.  It was seriously as hard to deal with as the domestic abuse I suffered.  That’s how bad it messed me up.  Imagine being about 12 and the doctors have spent months trying to figure out what’s wrong with you, while some say it’s all in your head, and it becomes a struggle to even get out of bed to go lay on the couch.  When you’re young you’re supposed to be bubbling over with energy and the excitement of all the new adventures of life.  I overheard the doctor comment to someone that they weren’t sure if whatever I had was going to kill me from the way I was progressing.  At 12.  I remember that my mom bought me a bag of Andes mints at the pharmacy that day and that night she didn’t scold me for eating the whole bag.  It’s funny how I can’t remember things from just a couple of days ago because of my illness, but I can remember that day and night so clearly.  I remember the smile on her face as she looked at me after kissing me goodnight, the look in her eyes, and how her hand felt as she held my cheek.  She was scared too.  Things settled down a bit several months later and I was finally able to do more than just rest.  I held food down again, the fatigue improved slowly, and I was finally able to go back to normal school.  For a while.  Then it started up again.  We finally got a diagnosis of CFS.  Basically the EBV had hit my system so hard that it had triggered a chronic condition where fatigue, and a laundry list of other crud, would challenge me the rest of my life.  Since I came down with “the sinus infection” months ago I slipped back into that old pattern.  I never realized it until I started researching the possibilities for my lab results.  I sleep even odder hours than usual and I nap a whole lot.  The day is considered a success if I can get out of bed, actually change into something beside what I slept in, and make it to the couch to sit down.  I’m impressed with myself when I’m up in time with enough umph to cook lunch for us before Larry has to go to work.  I try to do a little tai chi, Just Dance, or recumbent cycling, but to be honest it doesn’t happen much lately.  I have a hard time taking care of the dog and doing a few basic household chores.  Vacuuming wears me out as much as an intense round on Just Dance does.  *bitter laugh*  It takes me a week to get the energy up to go get groceries or go to the doctor’s.  I’ve had trouble with food, I get sick if I try to eat or drink some regular items (like straight water!  How insane is that?!), I actually fell asleep hunched over my laptop playing on SL while watching tv, and at times I don’t even feel up to being on my computer (which is SO out of character).  Trying to actually make products sounds as likely as my bucket list trip to Scotland.

 

I wish it hadn’t taken abnormal lab results to realize how bad things have gotten and I really wish that I hadn’t had so long to think about what conditions they need to rule out.  I am glad, however, that I won’t be so shocked when they discuss the results.  Maybe this way I’ll actually hear what they’re saying and we can make a game plan.  The nurse finally returned my call today after I muted my phone to nap (since it was after their business hours I figured yet another day without a call had passed).  She left a message to call her tomorrow – they can’t get return calls after hours.  I’m glad I finally can get some information from them tomorrow.  I’m scared though.  It won’t be possible conditions that fit according to research anymore.  Tomorrow it’s numbers on a page that may seriously change my life.  It’s “Well, the doctor wants to try…” or “We need to rule out…” or even the worst, “We’d like to schedule an appointment so that the doctor can talk to you in person”.  I had to schedule plenty of those appointments when I worked for a neurologist and I’m afraid of not being strong enough to make it through one of those appointments without breaking down.  I try to always focus on what I’m thankful for and not dwell on my daily struggles, since I know it can be worse, and I’m thankful for my blessings.  I’m worn out from being strong every day though and I’m afraid of “my cup” overflowing when I finally find out what’s caused these abnormal spikes in my labs.  I’m scared to see how the next chapter in my journey begins.  I guess we all are at some point though.  Being sick, losing so much of who I was and what I loved (along with some friends), losing my career when it just got really awesome, and becoming disabled in my thirties were supposed to be the worst things in my book, I thought.  I truly thought I didn’t need to learn how to be even stronger.  Every tree breaks if it gets bent too much and I’m scared that I won’t be able to stand strong through this, too.

Bless Yore Beautiful Hide, Wherever You May Be

First off, I want to say that I’m really sorry for the silence for the past few months. I’ve gotten caught up on all of the blogs that I follow, but not my own. I think that shows I just needed a little time away, I think. I also think it’s about time to give you the details, clear the cobwebs, and get back into the groove. 🙂

I’m sick. I try not to talk much about it except to those I’m close to, since it’s not exactly a cheerful topic and I pray every day to have a good impact, but I want to always be honest on this blog. I have a disabling case of Fibromyalgia with Chronic Fatigue Syndrome, Costochondritis, Chronic Insomnia, a compromised immune system, and a laundry list of other little things that get in the way sometimes. I went into this year with high hopes that I’d start getting better. Maybe not a full remission, but at least a bit better, since I didn’t think it could get much worse. Yeah, I deserve a total “Gibbs smack” to the back of the head for that thought. *grin* Between injuries, new symptoms, doctors altering my meds all of the stinking time, and some withdrawals from meds that just didn’t work well with my complicated system, I had a hard time. Sometimes I struggle with depression. It’s hard to always be happy when it can be a huge challenge just to get out of bed. I mean at ALL, not just the ole usual I don’t want to get out of bed this morning thing, either. Sometimes it’s as hard to get out of bed as a workout at the gym. It’s hard to believe, but that’s one of the truths that every Fibro sufferer will usually hide from you. We try to smile so you don’t see how broken we’ve become, we say “about the same” or “not too bad” if you ask how we are because we know most don’t want to hear the depressing truth that we seldom have good days when we’re in a relapse, and we try not to let you see us wince from the pain when you playfully nudge us or slap our shoulder during a joke. We want to be normal; we want to be loved and liked still. Most friends and acquaintances drift away because they think we’re just always going to blow them off or we don’t bother to participate in the friendship. Most of the time we desperately wish we could handle being hugged or that someone would go ahead and give us a hug anyway, because the pain is ALWAYS worth it. With all of that turmoil it’s easy to lose sight of who you are and what your dreams are. When every day requires adjustments just to do the basics, we don’t know that we can have dreams anymore, sometimes. Our dream can become having more than one good day a month and our world gets so wrapped up in the hardships that we can’t always see the shore when our ship starts to sink. Anyone with a chronic illness has these moments and sometimes those moments last a very long time.

Added to the muck I felt like I really let myself down with my business. When we got our taxes done Georgia’s Bath Products was officially downsized to a hobby instead of a business. I was too sick to be able to do the events and push sales, so I never met the standard needed in the allotted time. I’d all ready lost a full time job and ended my first business in the couple of years before this, so getting downgraded hit me a little harder than it normally would have. I lost my inspiration, my interest, and my way.

Thankfully something wonderful has happened in the past two months to help me start shaking this all off and work toward finding the new me. My newly single mom moved from an hour away to about eight houses away. When my days are so bad that I’m too sick to take care of my dog or get up off of the couch, she’s here for me. She cooks for the big guy and I when it gets hard and not only helps clean my house, but she even helped (well, really she taught me how) to make/install a shelf so I could organize some stuff. It may seem weird that I make attaching brackets to a board and screwing them into the wall sound like a huge thing, but when you can’t manage your own household anymore those little things make the sun feel a hundred times more glorious upon your face, and you can’t help but grin for days. Plus, she needs me. She accepts my limitations better than I do usually, but still wants me around, and visits me at home because she understands that it’s kind of an ordeal just to leave the house sometimes. No matter how dark the alleys in my mind got, how lost I became, she held my hand and said she needed me because I’m still the bright spot in her life. Hearing that when I did was a true blessing that has been helping me face each day.

So, now that I feel more naked than if I’d streaked at the World Cup, we can all look forward to the fun stuff.

During my time off I was on Pinterest quite a bit. (Hi, my name is Georgia, and I’m addicted to Pinterest…) Feel free to explore my quite diverse collection of boards by looking for the pinner Georgia’s Bath Products. You get a really good feel there for how eccentric I truly am. *grin* I’ve done some Pinterest pin reviews on the blog previously, but dude…for a while I really did have a problem. lol I also read a bunch of books that were completely and thoroughly fun. Raunchy historical romps, steampunk sci fi, paranormal romances, and Whodunits filled my hours, and it was glorious. *pushes glasses up my nose with a grin* I also spent a lot of time in the virtual world of Second Life. I learned some of the basics of building, mentored some newbies, and became a crazy cat lady in that life too. *laugh* I also got totally into learning and watching about cosplay (a bucket list item I don’t know that I’ll ever be able to check off, but it’s high on my list now *grin*) and came up with some awesome strategies (yep, I dare to say something so cocky) for my mom’s move. I got to utilize my love of lists and spreadsheets for the irritating process of moving. I rock sometimes. *cracking up*

Expect to start seeing my posts showing up in your inbox or feed a lot more frequently now. There will be some posts featuring interviews with one of my friends full of recipes, handy little tips, and some of the neatest decorating ideas. You’ll see my first attempt at spray painting something (shows what a goody two shoes I was as a youth, I guess lol) when I soon try to turn my ugly cane into a work of pink glitter art. I’m going to be working at trying to make a part of my mom’s office into a crafting section, so expect some fun info about that (most likely inspired by Pinterest, I’ll be honest *grin*). Who knows what other oddness I might get myself into, too. I all ready binge watched the second season of Hemlock Grove, so now I can focus on new activities. There probably won’t be a lot about the bath and body products until it’s closer to Fall, so if you don’t stick around, I understand. I hope you do, though, and maybe we can find some fun stuff to share with each other. Maybe if you’re also struggling with something in private this will help you to not feel so alone, too. I’m closing with a quote from the author that wasn’t afraid to confide about those dark thoughts, Mr. Edgar Allan Poe.

“I have absolutely no pleasure in the stimulants in which I sometimes so madly indulge. It has not been in the pursuit of pleasure that I have periled life and reputation and reason. It has been the desperate attempt to escape from torturing memories, from a sense of insupportable loneliness and a dread of some strange impending doom.”

 

(To give credit where it’s due, the post’s title is actually a song [and a bit of lyric] from the 1954 musical Seven Brides for Seven Brothers.  That song has been stuck in my head for a week now, and I thought it’d make a good title for the first post of my return.)

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