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Perspective

A lot has gone on since I last posted and I don’t think most would be of much help to another person, so I haven’t bothered sharing any, since I’ve always wanted this blog to inspire or help others. However, I learned a very valuable lesson in the past week.

L surprised me with an amazing trip when Branson, MO started their Old Time Christmas season, which I’ll write about and share amazing photos of later. We knew that my being around people and being active (there’s a special old time, craftsman type of theme park there, where they keep old talents like blowing glass and blacksmithing alive, plus I believe the award for the most Christmas lights in the world), would be hard on me. This was kind of my goodbye trip to going as a “normal” person, so to speak.

We’ve gone there off and on through the years since we honeymooned there, fifteen years ago. One can never predict the course of an illness though and mine is stealthily taking away my ability to walk much, even with my cane, so on my list of “before I’m wheelchair bound” bucket list I had down Branson. Since I’ve progressed so dramatically within the past 15 or so months, he secretly planned to fulfill one of my biggest hopes. We knew I’d catch a cold being around sick people, since for some reason as a society we do not believe in staying home when sick, and that it would be physically difficult on me, despite the luxury accommodations that he splurged for to help me. Shortly upon coming home though, as my body was gearing up to get really mad about the trip, we met our neighbor’s litter of accidental puppies.

They’re noisy, but they are the cutest puppies and so darn sweet underneath it all. We developed puppy fever and wanted to expand our family again, knowing that we will never try to adopt a human again, so the more fur the more love in our home. *smile* As I was partway through my after trip symptoms we fell for two puppies out of the group and decided to go for it.

We went through that whole new puppy craziness of buying tons of things to take care of them, since everything of Bo’s was donated when he passed, and real life set in. The little girl and boy had neither been truly housebroken, as we thought he had implied, so it was puppy pads, paper towels with Lysol, and blocking off the kitchen or crating, believing a few days and we could move to the next stage, like we did with Bo. These little ones have so little interaction that they have massive separation anxiety though, so I had to literally be in sight and usually within their reach or there would be crying. We tried the whole “ignore and they’ll cry themselves to sleep” technique, especially with crating for brief periods, but the noise! Instant migraine and when the boy would hit top pitch, somehow it made both elder cats toss their cookies immediately. Triple the fun!

Long story short I ended up living in the sectioned off kitchen, taking tiny naps when they would nap (but as every sick person knows, it takes forevvvver to fall asleep, so more than an hour was mind blowing), and becoming very hurt by their playful nips and puppy claws, plus not being able to relax in my “accommodation” spots, which are set up to minimize pain and help my body rest. For the first time ever I looked in the mirror in the bathroom (a bathtub makes a great playpen for pups, let me tell you, especially in a tiny bathroom) and I actually saw my illness begin to physically manifest. There are tons of supportive memes that Spoonies share of how we would look if our illnesses weren’t invisible, with a body covered in bruises, sores, etc. I saw two black eyes, skin that just looked…wrong, and bruises. My glands along my throat had swollen and I ended up coughing up some interesting stuff, while most of the rest of my body started shutting down until I was in such low-spoon usage that I didn’t change clothes for days and ended up laying on kitchen mats because my body couldn’t take sitting upright anymore. My veins are growing less prominent under the surface of my skin thankfully, but it was kind of creepy to see the bluish lines running along my entire body.

Add to it that housebreaking never caught on well, although I made a tiny dent, and the cats went into a tail spin of bad behaviors, including trying to beat the muzzles if a pup got close enough. To be fair, with the bite force these little babies have, I was scared of what would happen if one got hold of one of the cats, too. At least the cats swatted without front claws when the pups got in reach (done for medical reasons, not without considering their health and the research behind it, trust me).

It became a nightmare situation made all the harder because I spent nearly every minute with them, except when L kept himself up when he got home from work, to take care of them so that I could get undisturbed sleep. I fell in love with the wiggling bundles of wee and wild tongues. But the hard decision had to be made to either return them or find care while he worked and slept, because I was going to be hospitalized. The returning was a disaster within itself, even though it was less than a week later, and the only thing that tipped the scale was me actually showing an outsider just how sick I looked.

The worst is that the neighbor still hasn’t taken the litter where he said he was and every day they get put in their pen periodically, crying away with the parents, especially since it’s so dang cold. And if either of us are outside, the two remember who we are and want us, because they knew love for that little bit of time with us. Which makes it hard to stay strong, but being terrified of the alternative helps dampen it, admittedly.

So, there’s the back story to this change in perspective that I developed. When the war (puppy) zone got picked up, cats realized they could roam freely again and had access to Mom, and I went on bed rest, suddenly nothing ornery that the twins did, or the squabbling between the older and younger generations, bothered me. I’ve actually found myself laughing at the feisty antics of Zane stealing little things and taking them around the house to beat around (and try to shove under the oven like everything else lol). I separate squabbles, but I understand where they stem from and do it calmly without anyone getting in trouble. The “Trouble Twins” aren’t so bad when the perspective has been tweaked.

I’m hoping to cling to this lesson and learn to apply a change in my perception to that bucket list I’ve made. I still want to do as many things on there with L that I can before I’m permanently bed bound, but it’s not before I’m in a wheel chair. That’s just my pride and fear of considering myself “less than”, when it’ll actually enable me to continue trying to live my life to the fullest. I’m going to try to challenge my perspective on a lot of things and see what I can improve; in my life, in my character, and hopefully my relationships. Seeing the world through the eyes of a chronically ill person can be a little tinted, or jaded, so I’m hoping to do better about how those I care about perceive my actions and being a lot more understanding of how difficult it is for them to understand such a bizarre condition.

I once read and didn’t really grasp the saying until now: “Instead of asking why me, ask what can this teach me”.

National Invisible Illnesses Day

Today I want to share a few pieces to help raise awareness; an encouraging one, one humorous, one to hopefully help others understand the “what”, and last is a link to an incredibly well-written and brave blog post about going from being a very active person to disabled by invisible diseases, with an insight into how “kind and helpful” comments can be very hurtful for those with invisible illnesses that can not be cured at this time. Some lucky people get to go into remission or were misdiagnosed; for most of us this is the new life we are forced to accept.

Some days this is exactly how it seems. *laugh*

And last, but not least, Jamison Writes’s blog post: “This is Why Exercise Can’t Cure Illness“.

Thank you for taking the time to read this and learn a little bit, if you’re unfamiliar with these illnesses; with a big Spoonie non-touching hug of encouragement to those who had to mourn their original lives and take it day by day. I wish I could give an extra two spoons to all Spoonies, so that we can shower and not have to rest afterward today!

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 Baaaack! :)

I’m finally done researching, dealing, and wrapping my brain around everything. It’s been a long few weeks of dieting, medication withdrawals, fighting two bugs, and recovering from a few injuries. At least I stayed busy, right? *laugh* Plus, you should be proud, because we didn’t make the bloody snowman I found instructions for on Pinterest during either of the snow storms that came through in the meantime. *grin* It’s been SO hard to resist the morbid temptation, so I deserve a lot of credit.

 

First, I am really sorry that it’s taken me so long to respond to those that wrote to me. I hope that I replied to each comment; if I missed yours, it was not intentional!  I want to tell you all that the support shown means the world to me and was a massive help in getting me through to this stage, despite it taking me a while to be able to come back and say so. I have a habit of crawling inside of my mind until I feel like I’m back in control. It’s something I’ve been working to improve, but I’m a work in progress, as they say. *smile* Regardless, thank you so much for the support, encouragement, and just being there.

 

I found a little light to focus on during my research. I kept researching for a good week after my last post about the possible causes of the liver damage and found that the muscle relaxers that I was on had a very rare instance during two clinical trials of Fibro patients showing liver damage occurring. Very soon after the medication was discontinued and it was fully out of their systems their labs returned to normal. The only thing that had changed in the few months between lab draws was that one of my specialists had doubled the dosage of the muscle relaxer to fully stop most of the involuntary movements and spasms. There is no way to know if I’m in that tiny percentile that may have troubles with anything beyond a minimal dose except by doing exactly what I did – I immediately discontinued the medication, cold turkey (you SO shouldn’t do that without physician approval and I am definitely not recommending it to anyone, but it’s what I needed to do in this situation),  so that I would be able to get labs drawn at my next appointment, which is next week. This visit is to my guru, the one doctor that I fully trust, the one that diagnosed me after so many years of I don’t knows. Plus, he’s a take charge kind of guy. He won’t react like the other doctor’s nurse did and say “I don’t know” when I ask him if it could have been that medication, or what to change in my treatment plan, or how to manage the changes of my treatment plan and lifestyle that the nurse demanded. He won’t leave me on an iceberg in the middle of an ocean of fear. He’s pretty awesome. He’s really great about letting me be involved, and about getting involved when I ask him for help, so I have a good feeling that when I tell him about everything he will run follow up labs after the appointment to see if my counts have changed from discontinuing the medication. Even if they haven’t, it was worth the withdrawals and getting the movements back, because I’ve had a few weeks with hope. If it was the medication that had started to cause liver damage, and it has been reversed, then it reduces the likelihood that I am facing any of the scariest disorders, too. If my labs have improved, then most likely I’m just having reactivation of the EBV with progression of my relapse. I never thought I’d be happy for that, but it sure beats the other possibilities!!

 

I also need his help to keep up these dietary and lifestyle changes. Changing the diet of a regular person is one thing, but I have so many intolerances that it makes this a bit difficult. Add to it that almost everything has to be cooked from scratch now and with Chronic Fatigue it feels like I’m trying to climb a freaking mountain some days instead of just prepping and cooking a meal. I’ve been getting so sick due to reflux and I’ve had a nonstop bloody nose since my last post (small nasal ulcer from botched septoplasty), which has done an amazing job of making me nauseated about 75% of the time. Meh. Plus, limiting my dairy intake has only caused me to become absolutely obsessed with most things dairy. *laugh* We’ve always been big milk drinkers, although Larry has always drank more than me since I’m more of a sipper. Since I decided to use Slim Fast and Special K to keep the good counts up when I can’t eat, and it is SO much easier to figure up how much of each percentage I’ve had for the day then, I can justify having some milk fairly often. It’s been hard to limit my cheese intake, but I don’t crave it nearly as much as I do the milk. I figure I’ve tried, I made some changes that I can deal with, found out that I have some healthier cooking habits all ready (I’ve always trimmed meats really well, etc.), and found that I just can’t do everything that she demanded of me because my body is way more complicated than she thought or assumed or whatever.   If she feels I didn’t give it enough of a shot I swear to you I’m going to ask her what her advice is for handling vomiting acid from reflux, and then I might just take her down with my cane. Unicorns might fart glitter too, so I figure that means there’s a slight chance that one of the mean thoughts floating around might actually take place some day. *sassy wink* Anyway…lol I am so exhausted, but I’ve been trying really hard. It’s always been pretty much impossible to get Larry excited over eating chicken anyway, so now that it’s a main protein he’s really not too wound up over the latest menus and changes. Thank goodness for Pinterest and the bazillions of chicken recipes that at least make it look and taste a little different every few days. *laugh* I managed to actually get an “it’s all right” for two of the dishes so far, so I’m learning to celebrate the small successes. And I burned out my crockpot. Seriously. It can now cook 4.5 pounds of chicken on low to so done it shreds itself when you try to pick it up with a fork in just over 3 and a half hours! Dude! So I have a new crock pot on the way next week. I splurged and got the fancy kind that even has a probe on it. I figure if it keeps me from overcooking a roast, then it’s made up the cost of the upgrade all ready. *grin* (No matter what I have to have one item of red meat a week – I mean, I’m in the Midwest! It’s impossible to go without red meat fully and it’s also a very cruel form of torture to limit it, too.  Just saying.) By the way, I can’t even fake excitement over another shredded chicken meal. The blahs are worth it to help make meals easier though, since my fatigue has been so insane lately. I trim and prep the chicken breasts when I’m not really bad yet, then the slow cooker cooks them insanely quickly, and now I have precooked protein on hand, so I can get a meal in front of Larry within 20 minutes usually. Someone else will have to prep and clean up if I’m going to have enough energy to make an exciting meal out of it now though. Dishes are only awesome and exciting the first few times when they’re in a small rotation. *laugh*  Maybe my failing crock pot will short out and give me super powers, or at least super energy, in the next week.  Can’t blame a girl, especially a nerdy girl, for hoping.

 

As you can see from tonight’s post I get cranky and sassy when I don’t have enough red meat, dairy products, and energy. *wink*  I put my crankiness to good use though.  I even came up with super sassy ideas that would have worked as Anti Valentine’s themed products, but now they’re just going to be some fun and tongue-in-cheek items since I got too sick to get them done in time to market. I was going to wait to share, but you’ve read enough about the blahs to get some good stuff tonight! First, you’ll have to understand that I’m just not that into much of anything that’s really mushy, super cheerful, bright, or extra sentimental. I’m even making the “somebody farted” face just thinking about the words. To clarify, I can be all of those things (though if they happened at once I’m pretty sure I’d die, possibly from the shock to my system lol), but those moments are pretty widely distributed over my life and mostly avoided. *laugh* I may get all girly about glitter and pink, but add in anything cutesy and the “fart face” kicks in immediately. It’s totally cool that people are into all of it, but it’s just not for me (or especially Larry). And I found out that there are others that aren’t so into it either! (I even follow some Anti Valentine boards on Pinterest. Friends, trust me, there are some hilarious pins on those boards!) In honor of those that are a little edgier, shall we say, I wanted to make black glitter soaps for Anti Valentine’s Day. Mom and I made a batch of daisy soaps, named “Black Magic”, and a batch of skulls and crossbones, which I amusingly named “Love Bites”. I used a clear soap base, then a little new black sparkle soap bar color, and a few generous puffs of iridescent glitter that shimmers throughout the black soaps. Maraschino Cherry with an undernote of chocolate. I love these soaps so much! I’m not sharing pictures quite yet though. I’m hoping to build a photo tent box tomorrow and take pictures of them then, so I didn’t want to give in to temptation and share blah plain pics that won’t capture them as well. (See, I’ve been productive during my time away! I learned how to do photo tent boxes, took up Tai Chi [although I’ve only made it to fifteen minutes so far – but that’s big progress for a fatigued and hurting person], researched alternative causes for the liver damage, made a list of whimsical product names to invent products for, tried about twenty new recipes, and got quite far into my TBR pile!)

 

I saved the best for last, too!! Malice & Mayhem. Roll that title around in your mind a few times and delight in the perfection of that name. That is the name of my next batch of soaps. I got a silicone mold during my time away of small pistols. I’m going to sell a duo of pistol soaps packaged together with this name. One in black with glitter (can you tell that I LOVE how that combo turned out? Lol) and the other hopefully in hot pink. Malice & Mayhem here for all your gifting needs. *grin* I’m sure I’ll do later batches in some conventional, male friendly, colors too, especially since they’ll be awesome in the Redneck Combo, but this duo is for those sassy ladies out there. I really hope they go over well because I am so incredibly excited about them. The name, the colors, the mold…I figure I have ten months to experiment with the mold and maybe by next February I can do a sassy themed combo with “Love Bites”, “Malice & Mayhem”, and hopefully a few other whimsical and amusing items.

 

On that bit of cheerfulness I’m going to end my “return” post. *smile* Again, thank you for the support shown and hopefully I’ll have lots more cheerful things to post about this year like Malice & Mayhem! In the meantime, happy pampering.  🙂

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.

Helpful Tips for Reaching Out

I fully intended to post something else tonight, but I’m in pain and thought this would be a perfect time to share a pin that came through a chronic illness board that I follow. I don’t like to talk about my pain, because it never fully goes away. Seldom is it below a 6 on a 1-10 scale, which is hard for most to comprehend, and a lot of people don’t believe that it’s real, even doctors. A coping mechanism that a lot of chronic pain sufferers develop is to blow off the question of “how are you?” We often say “the usual”, “it’s all good”, or just totally evade answering. Most of the time people don’t know how to handle a true answer and often it makes them uncomfortable. If you are sincere in wanting to reach out to someone in your life that suffers, then try even one thing from this list. The fourth one is a great one. If you do most anything from this list you will be a shining star in an otherwise nonstop darkness, so to speak. Just believe in them and be there. We usually don’t think you’d actually want to be there, or that we must be so boring to hang out with, so we pull back. Someone reaching out, even just in a text to say “I’m thinking of you” or “I just want you to know that I’m here for you if you need something” can sometimes truly be the difference between life and death for them. It’s hard to see the life all around beyond the constant struggle to make it through each day. Bless the person who originally posted this and you for reading, and especially if you ever try one.

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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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