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National Invisible Illnesses Day

Posted on May 12, 2018 by Georgia's Pampering

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!

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Update on Our Journey

Posted on February 28, 2018 by Georgia's Pampering

 

We are a few weeks away from working toward our adoption for a year and there’s been another delay.  I don’t know if we’re allowed to talk about it, so I won’t, but I can say that this is starting to take an emotional toll.

 

When we were at the ninth month it felt kind of right; an expectant mother has that time to prepare for and fall in love with that little miracle.  When we hit roadblocks or long waiting periods I would fall back on that concept and find my strength again.  We’re unsure of how long this delay will last and it’s honestly worrisome that we won’t have enough time to go through all of the stages and get to placement by the time the new school year starts.  We still need to go through private profiles, go through the BIS process (a conference call between the officials to decide if it’s a good enough fit to allow more in depth consideration), making the decision on who to meet, meeting them (and if we make a match the first time we don’t have to go back through the profiles, BIS, and deciding who to pursue this time), have at least four visitations with one being an overnight stay, and, if all works right, we get legal custodial rights and Kiddo is placed with us.  After six months the case gets reviewed, make sure things are going well and we’re bonding, and then we get to adopt Kiddo.  If this delay takes more than a couple more months I really can’t see how Kiddo will be ready to start school here next year.  I hate the idea of having to change schools in the beginning of their year, especially if Kiddo is just starting high school.  I had hoped we’d have placement by summer, so we’d have the time to work at really bonding and it’d be a little less stressful for Kiddo, since school itself will be a lot of stress, not to mention living in a new town, making new friends, etc.

 

I think one of the hardest parts of the waiting period is how much of our lives is in someone else’s hands.   Realistically, if everything goes well, our entire future is in the hands of a social worker, a case worker, a foster parent (or parents), a judge, and Kiddo.  We have the bizarre ability to pick our preference like a puppy in a litter, but it doesn’t mean that we’re going to get to take the puppy home and raise them.  We don’t just want to raise them until they’re 18; we want to be the forever family for Kiddo.  And there isn’t anything we can do right now to help the process.  If anything we were over prepared, over excited, and we can only do so much parenting and trauma research without knowing Kiddo’s actual needs, so we just wait for the email.

 

As a Spoonie I have so little control over my health and knowing when I’ll have a “good” day, so my natural “get it done” personality is stronger in the other aspects of my life.  Kiddo’s room is done, I’m not really able to shop anymore for Kiddo until we know their needs, wants, and sizes, and there isn’t a whole lot to scrapbook for her about our journey when you’re sitting around waiting.  It’s doggone hard to not have an ounce of control over any part of the most important path in my life.  I’m blessed to have an incredible psychiatrist that not only helps with coping with becoming disabled, but helps me not get fully depressed.  She even wrote a letter for DCF stating that I’m able to parent despite my illness, because I seek out help when needed, have a lot of coping techniques in my pocket so to speak, and it’s been almost 20 years since I went through my traumas, so Kiddo’s traumas won’t trigger me.  We can’t really work on my concern about Kiddo not bonding with me, since that’s a “what if” scenario, and really it’s just me doing my usual “risk analysis” instead of it being a true worry.  When I became a HIPAA Officer and had to learn to do risk analysis, I would never have guessed that the mindset would stick with me for the rest of my life.  *laugh*  Anyway, I’m trying to learn to take one day at a time and focus on what I can control, like coloring in my smart aleck affirmations coloring book.  *grin*

 

We also realized that underneath some of that concern about Kiddo not wanting me is the worry of being rejected once they see the real me.  Ask pretty much any Spoonie and they will admit that they try to always have a mask of “I’m okay” on and that very few people ever see what life is truly like for them.  We hide our bad days because we don’t want to be a burden and we know that people don’t usually want to hear that things are still kind of cruddy.  They usually just ask out of polite conversation etiquette instead of wanting to see behind the mask.  We hide the days we need a walker to make it from bed to the bathroom, the days and nights that seemingly go on forever because we can’t sleep or get quality rest, the cushions, heating pads, and meds that help us have some quality of life.  When Kiddo has stayed here for a bit and the honeymoon period has worn off my body will override my emotions again, and I’ll be back to my normal, so Kiddo will be one of the few to see the real me.  It probably doesn’t make any sense to healthy “normal” people, but it’s a scary thing for us usually.  We tried for so long to be successful in life, then we were told for even longer that we were okay and it was all in our heads when the symptoms made life so difficult, and then we have to endure having a diagnosis that a whole lot of people think is made up because they can’t see it.  If we had our legs amputated or had lesions where our trigger points are, then there’d be a lot more compassion and empathy.  So we develop our mask as a coping mechanism to protect us from rejection.  And it becomes really scary to think about someone seeing the real version and rejecting you.

 

In the first six months we had so much to look forward to, so much to work toward, and it seemed like we’d fly through the adoption stages because we were so prepared, so there wasn’t time for fear.  The waiting period is almost completely spent in the dark corners of my mind.  Once I realized this and she helped me acknowledge that it’s something that I can’t change, so I need to let go of the concern, my mind went to how many more delays will there be?  Can we emotionally handle another six months or year of waiting just to get to the next stage?  The imaginary time line is gone and every extra day tears at the heart.  It’s hard to focus on the hope and joy of the future when you can’t see the light at the end of the tunnel anymore, and it is even harder as a Spoonie.

 

So we’re going to quit looking at the featured kids and picturing the one we think would be a good fit in our lives actually in our lives (now that complicated sentence is almost as complicated as our feelings!  LOL).  We’re going to quit hoping that the one profile we really liked will still be available by the time we get the chance to inquire about her.  We’re just going to wait.  Our hearts break over how many children are in the system and how scary the statistics are for them if they age out, but we’ll try to focus on patiently waiting for the one ripple we’ll someday make in that sea of need.  We need to find a way back to the joy and hope we had as we painted her room, put in the bed and imagined having our own daughter sleeping in it, and those moments when we felt our hearts would burst from the love for her – the love for our own future daughter.  And we will have a laugh the next time someone says we’re jumping in the deep end by adopting a teenager.  Raising a teenager is hard, but we’re all ready going through hell just to get the chance to raise one.

 

Since the long waiting period has been so difficult to endure, and has tested us to remain patient, hopefully God will help us make the right choice the first time and we will minimize the extra trauma by getting her settled before the school year.  Then we can worry about rejection, the risks and stress of teen life, how to help her with her traumas, and which store will have a prom dress she might like.  🙂

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Fibro Insight

Posted on February 2, 2018 by Georgia's Pampering

I had a required physical (ironic, but required to get my meds, even though I was just there two months ago for a regular visit). Anyway, the prodding and such caused a nice little flare, and as I sat reading emails one came in from a Fibro newsletter I get. They decided to do a post of Spoonies sharing pictures during symptom flares or how they cope with the visible symptoms. Yet somehow some people still don’t believe it’s a real condition and that there’s a community that really needs help. This is a group that have massively high suicidal ideation and risk rates. So I thought I’d share more information about it that might help others understand it a bit better or have a resource to share if they’re a Spoonie and trying to find examples to help people see behind the mask.

The Mighty post has a lot of examples of the visible symptoms that we tend to hide. They have tons of resources on their site and their newsletters are always comforting, in a way, because sufferers know that someone believes them and that it’s okay to not wear the “I’m okay” mask that we try to keep in place all of the time. Unfortunately I don’t have the umph to get on my computer, so the link will change the page directly to their site, instead of this post, so please remember to come back for the rest. 🙂

There is also an interesting study here that was done a few years ago in two countries, and then another country later, with a control population, chronic low back pain, and Fibro sufferers, that studied the rates of ideation and risk, with Fibro being sadly very high.

So, if you have a friend or loved one who suffers, hopefully these will help you understand what they’re going through and trying to hide from the world. I hope it not only raises awareness, but also more compassion. One of the most hurtful conversations that are surely meant to be helpful is that “my friend’s sister’s cousin had that and got better by…”. Sometimes, if you’re lucky, the illness and symptoms go into remission. Other times you relapse and that might become your new normal. That seemingly uplifting comment undermines their work of having a healthy mindset for coping and increases that ideation risk, because they feel so alone and misunderstood. If you feel like reading a bit more about awareness, I have a section dedicated to that on my Pinterest Fibromyalgia board (the side bar link takes you to my profile and I keep things pretty organized, so it’ll be easy to find a lot of pins to help others understand Spoonies better).

Thank you for helping me be strong enough to remove my “I’m okay” mask sometimes and helping me raise awareness. It is truly empowering and that’s one of my key habits to develop for this year. Y’all are awesome! 😀

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Better Days Ahead

Posted on September 27, 2016 by Georgia's Pampering

Hi there!  First, I want to apologize for being away for so long.  I had to take a break from blogging because when I first started this blog I meant for it to always be a fun, uplifting little blog that gave a look behind the scenes of the sometimes crazy bath and body product creative process.  I was in a dark place though and knew that anything I wrote would reflect that, and I didn’t want to spread that.  So I just slipped away for a while.

 

Things got really bad for a few months.  As in, I even considered committing suicide when all of the medical stuff got overwhelming and some personal emotions caused it all to topple over.  Thankfully I was cognizant enough to call my mom and when I said I needed her she was here within minutes and I took some clonazepam to help tame the emotional side.  Between a mother’s love and hugs, and a great sedative, I was able to get through the night and we made some plans for dealing with everything.

 

I was able to track down my former psychiatrist at her new business and was able to get an appointment really quickly.  Within the first few minutes she saw that my medical team had really let me down and took over until I could find some new doctors.  It turns out that I had been diagnosed with hypothyroidism over a year ago and not a single doctor had treated it or even notified me of it.  I actually found it by reviewing my records so that I could provide her with any records that might help her.  She was shocked that no one had treated the condition and immediately prescribed something to help, and it turns out that my Fibro had supposedly gotten so debilitating because I actually had a whole other condition attacking my body!  Basically hypothyroidism means that the thyroid isn’t working right, so it’s not handling the metabolism, hormones, etc., correctly.  Untreated I was gaining weight even when I was unable to eat and was unable to function, since I had no nourishment and my body was in such turmoil.

 

Unfortunately I found a great doctor to add to my team, but he was unable to treat me due to bureaucratic red tape, but confirmed all of my conditions including the IBSD and Hypothyroidism on top of my Fibro, CFS, GERD, and a few others, which is ironic because officially no doctor had told me they diagnosed the IBSD or Hypothyroidism.  Thankfully he sent his recommendation to remain on my pain management system to the upcoming new PCP (primary care) and sent these confirmed diagnoses to them.  So when I went to the new PCP she agreed to prescribe my pain medications, which I was having trouble with my regular medical team refilling and was about to land into the hospital in withdrawals, and that took a huge fear and weight off of my shoulders.  She added a few other medications and agreed with the psychiatrist’s course of treatment.  In a month we will run labs to see how my levels are now doing and will even see about finally getting a referral to an ENT.  I’m actually in a good place with my medical treatment and am doing much better.  Since the thyroid has started to be treated I have actually had energy to do some restorative yoga and household chores that I haven’t gotten done in years!  I had forgotten what it felt like to have energy.  It’s so easy for people to take that for granted, but I’m able to recognize the blessing.  Instead of having one or two good days a month I now have about a week of bad days with the rest of the month being good days!  I still have a lot of problems eating and sleeping, and at times I get wildly hyper.  *laugh*  Thankfully I have also had time to come up with some great business ideas that I’m excited about and will actually have the energy to make some of the ideas!

 

First off, I can’t wait to make chocolate scented brain soaps with strawberry jam drizzled “blood” for the gore and TWD fans, and think they’ll make fun stocking stuffers come Christmas.  I also bought some luster glitters that I can’t wait to try in some soaps and go in the opposite direction to delicate, pretty soaps.  I got a Maple Bacon FO that I am so excited to make in so many molds, including the brains.  *grin*  Don’t you think that brains would smell enticing to zombies?  So why not make some that smell awesome to us too?  Mawahahaha.

 

Anyway, I just wanted to get back into the swing of blogging and wanted to beg your pardon for being away for so long.  By the way, I got an amazing pressure cooker while I was away, too, and since I’ve often posted recipes I considered including my favorite pressure cooker recipes.  If any of you are interested in my posting some of these specialty recipes, please comment so that I know there’s some interest.  In the meantime, I hope you have a wonderful day and look forward to sharing some new product info soon!

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National Fibromyalgia Awareness Day

Posted on May 12, 2015 by Georgia's Pampering
National Fibromyalgia Awareness Day

Today, May 12th, has been selected for National Fibromyalgia Awareness Day. There are several disabilities that don’t have any visible signs and a lot of sufferers tend to hide from others when the symptoms are really bad. In light of this, please take a moment to learn a little about any of the “Invisible Diseases” or take a moment to just show a sufferer that you’re there for them. Just a note to say you’re thinking of them, offer to do something that would help them (believe me the smallest thing to you can be incredibly hard for disabled people sometimes, so you don’t have to bend over backward to make their day), or even just tell them that you’re there for them if they would like to talk about what they’re going through. Illnesses can be very alienating, so every little effort means the world. 

If you’d like to learn more, I’m including a few trusted links. First is the Fibromyalgia Network, which has a lot less medical jargon, so it’s an easier starting point to learn the basics about Fibro. Second is a really awesome letter to “normals” from a Fibro sufferer’s point of view, which may give you a better insight into what we may be going through and how you can help, which is also on a post at the FM Network, here.   Third in line is a post explaining how Invisible Diseases can be a disability and be disabling, which is over at Invisible Disabilities.   Just having someone that understands the struggles a sufferer is facing can literally stop suicide ideation even, so the few minutes you spend reading is an awesome gift.  

I saved the one that I think says it best for last and wanted to put it all by itself. It explains the “Spoon Theory”, which applies to any chronic illness, and is one of the best ways to depict and explain the daily struggle of living with a chronic illness. It is absolutely amazing and eye opening. Even if you don’t do anything else, please read this brief post. I think it is a phenomenal way to raise awareness. You can read it here. 

Thank you for reading this and participating in today’s event in whatever way you do. It means so much to all of us when someone tries to understand or tries to help. It means more than I could ever express that you all show support and encouragement during my journey, and I thank you wholeheartedly. 
  

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Happy News!

Posted on March 4, 2015 by Georgia's Pampering

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.

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I’m Baaaack! :)

Posted on February 14, 2015 by Georgia's Pampering

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.  🙂

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I’m A Little Scared Honestly

Posted on January 8, 2015 by Georgia's Pampering

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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The Ice Queen

Posted on November 21, 2014 by Georgia's Pampering

I try to put a cheerful or amused spin on my illnesses, or downplay them, most of the time. In following support groups and Pinterest boards I’m starting to realize that maybe Fibromites have gotten a little too adept at these survival techniques, and maybe that’s part of why most people just don’t understand how we can be suffering so much. One of the blurbs really captured this so well and I wanted to feature it tonight, especially since I’ve been trying to be brutally honest lately about what I go through.

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I’ve been called “The Ice Queen” more times than I can count and what most don’t realize is that a lot of the time I’m barely holding on to get through the day. Breaking down makes others uncomfortable, sometimes makes me sick, and makes me feel like I’m losing control of one of the few things I can still control, so I’d rather stay The Ice Queen most days. The girl in the mirror is covered in invisible bruises and staring into the darkness that she’s afraid may fill the rest of her life; screaming in desperation to be heard by just one person, yet no sound ever carries. The people outside the window, living life out in that big world, bustling about to make the most of their day, while chronically ill sufferers are often watching, longing to be out there with the “normals” instead of trapped by the prison of their bodies.

Hopefully someday we can all learn to quit sharing those polite white lies that makes an easier conversation; avoiding the bare truth that is uncomfortable for both sides. Maybe if we try just once today to be honest about our vulnerability we will get a step closer to truly understanding one another.

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Helpful Tips for Reaching Out

Posted on November 18, 2014 by Georgia's Pampering

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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