A Nudge for the New Era

I got a little nudge reminding me that I renamed my blog and had some promised changes coming. Even though it's nearing the end of March it still feels like the new year and that's probably because so much is going on around me at once I feel like I can't catch up. I still can't promise to get completely up to date in this post but at least I can get a little further in explaining why the changes and where I am now. In future posts there will need to be time devoted to more details as I speed through a lot of information in this one.

When I posted last I was giving my job one last real good All American try. It didn't work and I walked out with the last of my things at the beginning of February after resigning less than two weeks after my return. I still find it hard to believe and do my share of grieving still just trying to figure out where I fit in now. There's been a lot of pain since then and my I can't begin to explain all the different things I've felt.

It's been a roller coaster ride and I've allowed myself to feel emotional pain like I haven't in a long time. I said the blog would be moving in a different direction definitely because the chronic illness had taken a lead role in my life and was leading it on a whole new path in. It's also because I knew that I needed to blog in a more upfront and personal way. A few years back I remember I'd write in a journal but for a while I refused to write in it at all because I didn't feel safe enough to write what I truly wanted to and decided I wouldn't write fluff. Then one day I opened the journal, wrote all the stuff I had wanted to write only to go back a few months later and tear it all out. I don't feel like I can help others understand what it's like to live the way I do and not be completely open. Most of all, I can't help me. This doesn't mean I would say or do things that would jeopardize my future or that I might regret saying, it just means having a little less pride and being a whole lot more honest. One important piece of information that I was leaving out of my blogging was the dysfunction of my childhood family and its affects on me today. I love my parents and would not want to hurt them, just like I don't think they mean to hurt me. Unfortunately, they failed to protect me as a child and still do today. I haven't given up hope that I might soon get somewhere with them but I do not have a relationship with my brother or sister.

I grew up in the "scapegoat" role and had nearly overcome it (I thought) until I became sick and became once again, easy prey. I had many traits that deep down I knew were the result of my upbringing, for instance working tirelessly to prove to my boss that I was a great employee even though she'd never give me the benefit of the doubt. In fact, on my last day at work the HR Manager finally admitted to me that my boss had a policy changed partially because of something she had wrongly believed about me, this after I had confronted them both on several occasions about how I knew this was the case. It will take me a long time to get over hanging on to a job for so long knowing my boss believed something about me that she wouldn't admit or allow me to disprove. It hits too close to home. Someday I hope to let my former boss know what I think of her but for now Eric is making me promise to wait until my SSDI is all set. Yes, she could be evil enough to lie, lying is one thing she does best.

Even more painful is the fact that as a result of my childhood, I have held so many people at arms length because I feared how they might hurt me if I let them in. Believe it or not, this changed only because of a bad thing. If you don't believe I'm really opening myself up, here it comes. I truly allowed myself to openly trust and love my friends when I found out Pam had cancer and was secretly realizing there had to be something wrong with my health too. That was when I realized I had made friends that I truly would do anything for and even though I knew Pam would be okay in the end, the pain I felt at knowing what she would have to go through to get better was heart wrenching. I knew that I could barely get my own work done but would do anything to help Pam that I knew how so I offered to do as much of her work as I could. That's when I started to open up and started really allowing myself to trust these friends more than I've trusted a friend since I was in junior high.

So, if you know me well you know my pride is one thing I hold onto dearly. I don't walk out of the house without makeup on(which at least 1 doctor has told me doesn't help my case) and I find it difficult to admit I might need a little help. I've made friends over the years because they wouldn't give up on me, even when I made it damn near impossible (Susi, that's you). No matter how we came to be friends, those of you who are reading this most likely have some personal connection to me. Thank you for your help, it means more than I can say. I have a lot of work to do on myself, on letting down my guard, my pride and sometimes asking for help but I swear I am getting better. Many of you have reminded me that I have shoulders to cry on and have no doubt, I'll be a shoulder or a call away anytime for any of you too.

Here's to a new era for Amy's blog. And for those of you unsure of what my chronic illness is here's an abridged overview so if you have actually run out of interesting things to do you can google away! I have a problem with my autonomic system, which controls many of the subconscious activities a human body does. I was first diagnosed with Irritable Bowel Syndrome, then Vasomotor Rhinitis, then simultaneously the big ones, POTS- Postural Orthostatic Tachycardia and RSD- Reflexive Sympathetic Dystrophy. Those last two are the ha ha's that tied everything together. A few months later it was discovered I have adrenal insufficiency. I take a bunch of meds and unfortunately one is prednisone. Adrenal Insufficiency is the supposed easiest of my 3 major illnesses to treat but not treating it could result in death. 3 years ago I weighed 127 lbs. When I left my job in Feb I had gained a few lbs from my settled non-dieting weight of around 135lbs to about 143ish. Today, just about 6 weeks later I weigh around 163 lbs! This is setting off a new slew of testing and advocating for a different med, which so far isn't going well. This is part of what having a chronic illness is all about. I'm told I can't stop the med or I'll die. If I don't stop the med how long before I can't walk from the pain on my RSD riddled right hip, leg and foot? This is the reality I am willing to share with you all now (actually, I had to or you'd have thought I was pregnant). Just kidding, I want to share and hopefully someone else out there new to chronic illness will happen upon this site and find some shared experiences comforting. Who knows?

And so, tomorrow begins the next step.

A new era for blogging...

The picture is the same but the title and theme of my blog has changed. The details which may already be obvious to some will be coming soon. So much has changed in the 2 years since I started the blog and I plan to write about that much more in depth in the upcoming months. I feel like each day is and will be a new journey, starting with tomorrow. Tomorrow I will get up and go to work for the first time since the end of October. I don't know if I'll be able to work even part time but I need to give it another try before giving up for good. I fear I know what the answer will be and that I'll know within a couple of days but I feel strongly I need to try anyway. I am deeply appreciative of FMLA and that my job has been there for me since August when I have either not worked at all or barely worked enough to consider myself part time. Unfortunately, time is up and I either need to be able to do it or hand the reigns over to someone else who can. It has been an extremely difficult journey and the thought of leaving after a decade makes my stomach turn, but I know the choice really isn't mine. My job has been a source not only of income for me but a major part of how I've defined myself and where some deep friendships have been made. If it were my choice, I'd work. Whatever happens I'll know that I fought to the end and that I didn't give up before I had to. Now I'll go to bed and prepare myself for the next leg of this journey knowing that no matter what, good things will happen for me as long as I believe they will, work or no work.

Johnny didn't make an appearance today

Fun Fun Fun. That's my sarcastic response to this week's bout of testing. On Tuesday I went to have adrenal testing that involved having an IV put in so that they could draw blood, inject some sort of hormone and then draw blood two more times a half hour apart to see if there is any reaction to the hormone. I also had blood drawn for another test but I can't even tell you what that was for. The good news was I didn't have to wear my ol' pal Johnny and they allowed me to drink water during the testing. Even so, by the time the vampires were done my eyes were glazed over and I felt like I had been drugged, likely because I can hardly spare a thimble's worth of blood before the POTS sets in. The nurse said it looked like they take a lot more blood than they really do but I did the math- 66ml which equals around 13 teaspoons. I was surprised though that as the day went on I returned to normal and even had quite a bit of energy. That is until I woke up Wednesday morning. After deciding early Wednesday morning that sleeping in was my best bet I finally dragged myself and the 3 kids out of bed around 7 to head for work. Once I got to work I realized that I wasn't sure how or why I had gotten there and could barely carry on a conversation. It didn't take long to figure out that staying wasn't a good idea especially if I was expected to make a decision about something. That and I had plenty of people looking at me and telling me I looked pretty bad. That's only helpful when you feel crappy. I decided to cut my losses and head back for home and a nap with my pooch.

You can only imagine my glee when after sleeping for two and a half hours I was woken by a phone call from the nurse at the Doctor's office. Seems the blood was all bad and I needed a complete do over. Did I mention that the RN doing the test was new to it and had to dig around for a vein and then I had to move my arm around like an antenna reaching a signal to get the blood to come out? Well apparently that "breaks" the blood and doesn't work. Whatever, so I told them I'd come back today for round two. As luck would have it, the nurse decided that she'd make sure this time it worked by forgoing the IV and just sticking me each time in a new place. Yay! She's the first nurse I've ever met that didn't use a butterfly needle and there was more of the of "oh I can't find it"than I like to hear so by the time we were done I had 4 fresh holes and very little sense of humor left. Now the trick is holding it together tomorrow. I packed my lunch bag this morning with lots of water and Gatorade and I'm still pumping the fluids. That and keeping a positive attitude will hopefully make tomorrow go better than yesterday did.

In other news I have been working on my backyard oasis. Eric finished building a patio a few weeks ago so I've moved my swing there and have started some planting. Eventually he'll enclose the hot tub so I'll be able to use it this winter. I wanted to plant a garden around my pussy willow so this weekend I did it! Yes it looks kind of sparse right now but the roses will each get to be 3 ft around and tall and I wanted to keep it simple, unlike my other gardens. I was ecstatic when I found a light purple rose bush, the first I've found in all the places I've searched. I'm hoping to do lots more roses everywhere I can. I'm most excited about my wisteria, which isn't yet planted but is the one thing I have wanted for years. It needs something to grow on so it'll be planted right outside the hot tub wall so it can grow up the side of the screened windows and onto the roof, which will be clear plastic. I can't wait to sit under that next year!

Flying Purple People Eater

Who says you can't teach an old bike new tricks? I love my old bike but with my disability I can't peddle it for any distance. I was bummed that it meant missing out on family bike trips and had to come up with a way to be with the family, especially with Moxie Day looming. A few months ago I saw a man riding a bike with a motor attached and was fascinated. I clocked him going over 30 mph next to my car! I figured there had to be a way to rig my bike up too so Eric started the research. In less than 2 weeks my old bike went from a worn looking blue bike to a flashy purple with flames and best of all, A MOTOR! With a gas powered kit, spray paint and decals it has been totally transformed. Once again I am riding with my family but the funny thing is I have to idle it in order to stay with them. Sometimes I just take off and do circles because that is so much more fun! It is supposed to go 40 mph although I haven't dared tack it out. I just go fast enough to feel wild and regardless of how I'm feeling I can't help but smile.

Frankie and I in 2006


My bike as Eric started to take it apart for painting


Some flames, pinstriping and a "Happy" border for good measure

Almost done, it just needs the gas tank and the clutch!


Frankie likes this ride so much better! Now when I go without him he carries on in a jealous fit.

And since I like purple so much, I am currently knitting a beautiful lace top in purple cotton. It may not look like much yet but I love stopping every once in a while to look at the lace as it knits up.

WOW!

Holy Cow, where did I go? I haven't been blogging and I don't have a lot to show for knitting either. I can attribute my silence and lack of knitting progress to several factors but I guess the biggest is that work has been kicking my butt lately. It seems that for a while when I haven't been getting home late from work, I've been making up for it by working at night when I should be knitting! In between I managed to spend a few days in DC with Eric. I also had to finally give in and buy a new (used) car even though I fancied myself growing my yarn stash bigger and bigger every month I went without a car payment. My car finally started to cost more than it was worth and when it wouldn't pass an inspection without a large chunk of change, I gave in. I love my new car, but I do sorta miss the excuse that no car payment could justify my lavish yarn addiction. At least I've been so busy lately that I can't seem to go through yarn as quickly as usual.

My biggest knitting accomplishment has been finishing a sweater that has been hibernating for nearly a year. It was so close to being done too. I considered frogging it but now I am deliriously happy that I didn't go down that road.

I have a few other projects that have been started but languish in various stages of completion. I am slowly working on those while I search for the next big project. I used to be so rigid about finishing one project before starting another but these days I just seem to flit from one to another. I just need to find the sweater or top that I must have so I'll get it done. I'm also working on some baby stuff, which is so much fun! While I was in DC I worked on a baby hat because it was easy to carry on the subway and around the city. Next will be a baby sweater in a soft baby bamboo. Baby things are not only wicked cute but go so fast they are a great way to feel a sense of accomplishment.

The DC trip was fun although the weather didn't cooperate at all. We decided to haul our camper to a place just outside the city. In the evenings we were holed up in the camper listening to the rain beat down. We had to yell over the thunderous rain to hear each other inside that thing. The best time of all was when we decided to drive into the city late one night in our jammies to visit the white house and Washington Memorial. Even the rain couldn't stop us from enjoying that escapade and it seemed much more fun than trudging around in the rain during the day.

That being said, it was a difficult trip too. I wanted to go because Eric had never been and I wanted to do something for him. I occasionally wondered if it might not even be possible for me to do all of the walking I'd need to do, but I ignored those thoughts. I figured I could call it quits when I needed to, not really acknowledging that I still haven't accepted what my limits need to be. I ended up pushing myself and ending up in some difficult situations. Perhaps it was what I needed to do in order to realize that I have a disability that is real, even when I like to pretend it isn't. Eric and I both came to better understand that we need to adjust our thinking. I need to accept and ask for accommodations and he needs to remind me to do it. For the first time, I realized that even with a cane there are just some things that I can't do the way I used to. It was heartbreaking when Eric would talk about going back with the kids and I'd think to myself that I can't do this ever again. I finally told Eric that if we went back, I wouldn't be able to go to places with them. I was devastated at the idea that I would become an outsider to the family outings, hearing about them but missing firsthand the laughter and joy of the actual moments. Eric was instrumental in explaining to me that it is time to be proactive in how we approach situations and do it differently but that it isn't the end of my participating in outings with my family. It just means that I may need to do some things in a wheelchair, or do less at a time. I'm no where near ready to be in a wheelchair, even if its just for a short trip but I am ready to accept some changes. The first major adjustment was getting a handicap placard for the car. Now its just a matter of continuing to adjust my expectations and be willing to accept help. This is a road that I never thought to travel but none the less, here I am. I'm still trying to figure it all out and still learning about what comes next. The biggest challenge now is to allow myself and others to see the disability that I have worked so hard to hide.

Please pass the salt

This weekend I managed to get to SPA for about an hour which also means I managed to snag some fabulous new yarn. I was hoping to hang out for the day but I was in more pain than usual to start my day. I have gotten better at accepting changes to my plans and realizing that just to do part of it is something to celebrate. Still, it will take some time to really get used to being fully okay with having a disability and all that it brings. There are times when I still feel like I'm in complete shock.

I've already started work on a sport weight shawl in a soft wool I bought from a local spinner at SPA. pictured below I was the most excited to get some more "bunny", actually a blend of angora and wool and it was enough for an entire sweater!

A while ago I wrote about my breakdown at a yarn store when I went only to buy one skein of yarn for a scarf but ended up buying a lot more. I finished the scarf and have worn it to comfort myself at work when only something soft and squishy will do. I took a pic of it modeled by my Valentine Teddy Bear. He came in the mail from the Vermont Teddy Bear Co, a gift from Eric. He has the cutest shirt, which says "Knit Happens". He's also wearing his own little scarf that I made in the same pattern as mine from stash yarn.

My biggest knitting accomplishment of late is my Lett-Lopi vest. When I started it I wasn't sure which yarn I was going to use in the fair isle. The only thing I was sure of was that I was going to use stash yarn, since I have been challenging myself to use stash yarn whenever possible. I LOVE this vest!

Since my last post I have opened the Pandora's box on my illness. I can't honestly say whether I'm glad to know what it is or not. Unfortunately, I got two illnesses for the price of one, both with the potential to leave me disabled. My fierce determination to beat one illness faltered a bit when I realized that I could beat one only to be brought down by the other. I was quite sure I would be diagnosed with RSD/CRPS even though I hoped beyond hope that it would be something treatable instead. I was diagnosed with that and also with a rare disease called Postural Orthostatic Tachycardia Syndrome- POTS. It sounds completely ridiculous to say actually. Yes, I have the POTS. Right now I am trying to treat the POTS with fluid and salt. Lots and lots of salt! I can't help but acknowledge the irony of trying to be healthy only to find out it can make things worse. The POTS does explain some things that the RSD didn't and I guess I am glad to know that part of things. It is the POTS that has forced me off my treadmill and has made me sick so often when RSD wouldn't have. In a nutshell, my heart rate spikes dramatically when I stand up (or sometimes even when I'm lying down) and causes dizziness, confusion, and most noticeably an inability to regulate my body temp. Even the RSD has been a little easier to hide, except for my limp. I'm keeping this quiet at work since it is clear that coming out with it could have devastating consequences. Although people can see that I limp and know that I've been undergoing testing, they don't know how much difficulty I'm having. As long as I can do my job, it shouldn't matter to anyone anyway. I'm continuing to take things one day a at a time while I do my best to control the effects this has on my daily life.

Most days, I'm just glad that I accomplish as much as I do with the additional challenges. Even today when I went out to snow blow not only my driveway, but my neighbor's as well, I was grateful that I was doing it. Last week the whole time I was snow blowing I had this stupid grin on my face because I was actually DOING IT! There were times I believed I'd never snow blow again. Some of my neighbors looked ready to suffocate themselves in a snow bank while I blissfully buzzed around with the snow blower. It was plain to see how easily we take those things for granted. I always pay for those efforts with extra pain but I try to keep doing everything that I can. The pain is inevitable either way, but it's a whole lot easier to handle the pain when I feel like I earned it with hard work.

My name is Amy and I'm an addict

It's been a while since I've had one of my extreme yarn buying moments. I've been stash busting and trying to decrease my yarn consumption since the beginning of January. I'd call it a New Year's Resolution except I resolved to never resolve again so let's just consider the timing coincidental. It seemed like a good idea to detox a bit since my stash closet has met it's capacity and ultimately I would like a new car someday. I was doing well and even made a few things purely from stash.

Then last week I slipped a little when I bought some yarn to make a vest. Even then I planned to use some stash yarn in the vest too. I thought about it in advance and knew what I was going to buy for the vest, fully justifying my impending purchase. However, I saw some lavender Malabrigo when I got to my LYS and HAD TO HAVE IT! It was new and it was meant to be. I bought it along with the yarn for my vest and figured even though I spent over $100, I had a $50 gift card to make it seem less lavish. I managed to get through that experience with only a twinge of guilt which was almost impossible to feel when my fingers rubbed over that new Malabrigo. Yummmm.

Then came today. Never should I even enter the general vicinity of a yarn store when I'm pissed at my boss. Never! When will I ever learn. I just happened to be in Waterville about a half a mile from a fabulously stocked yarn store today. I told myself when I got out of my meeting there that I would just slip on over for a minute and buy 1 skein. I justified it by telling myself I deserved it for working hard for my money and putting up with the Queen of Lies and Back Stabbing for a boss. I was thinking about how soothing a soft, beautiful scarf that I could fondle (and possibly choke myself with) would be whenever my boss comes near me. So after all kinds of self talk and justification, I went. What I didn't expect was to walk into the store and immediately see those magic words written on the whiteboard "All hand knit yarns 20-50% off". Oh my. I immediately started to shake and get that sick nervous feeling inside while my thoughts ran into overdrive. I must buy, I mustn't let this sale die in vain while simultaneously the other part of my brain said "run, get out now, don't even look, JUST SAY NO!" I kept walking as if I was on autopilot, all the while feeling tingles all through my body and a small bit of nausea. I felt out of control and almost rabid as I began to touch the vast array of heartbreakingly gorgeous yarns. I made myself move slowly in a controlled way even though inside I could feel my heartbeat speeding up and my breathing becoming erratic. I couldn't stop. I have a problem. I need yarn, especially yarn on sale.

When I left I was slightly less shaky but now feeling like a closet yarn freak with a problem. I was carrying my bag wondering how I was going to sneak "that" into the house. My original plan had been to put the 1 skein I was going to buy into my work bag, heck maybe even my purse. I figured it would be days before Eric even knew about it. Usually he teases me about my incessant yarn buying but I wasn't sure how he'd react to another binge so soon after last week. When I got home I tried to smoosh the over sized bag into my work bag, after I took out a bunch of other things to make room. I casually walked in the house and set my stuff down. He's not stupid. He probably knew I'd go to that yarn store before I did. Maybe he knew I had a problem and didn't tell me, who knows. I didn't get into the house 15 seconds before he asked me if I went to the yarn store. I just hung my head in shame. I've never been addicted to anything before I got into yarn. First I started experimenting with the cheap stuff from Walmart and JoAnn's but after a while it just wasn't doing it for me anymore. I started going to dedicated yarn stores and picking out more expensive and luxuriant fibers. They just looked and felt so good! Before I knew it I was buying yarn just to have it, with no particular project in mind for it. How can something that feels so good be bad?!

In my defense though, it could be worse. At least its safe to drive after I've gone on a binge in the yarn store. That's a good thing too, since I'll probably never get a new car and can't afford to bust mine up!

I tried to deny I truly have a problem. I looked up the diagnosis of addiction thinking I may only really like (LOVE times infinity) yarn and if I saw the symptoms I might see that I don't really have a problem. Yeah right. I included the diagnosis here from freedictionary.com for anyone else out there in serious denial of their yarn/fiber addiction. You know who you are! Even though I have a problem I don't plan on stopping. Whenever I think of a car payment vs. buying yarn, the yarn always wins. If there ever comes a time when I get anywhere I'll just hang out in my closet and sniff the yarn.

Diagnosis (from freedictionary.com)
In addition to a preoccupation with using and acquiring the abused substance, the diagnosis of addiction is based on five criteria:
loss of willpower
harmful consequences
unmanageable lifestyle
tolerance or escalation of use
withdrawal symptoms upon quitting