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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.

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