Well Then Let Them Eat Toast

Tuesday was a horrible, terrible, no good, very bad day. Or as one of my friend calls them, a "drink heavily or take a long walk off a short pier" kinda day. I was up until 3AM the night before and slept till noon. So I woke up already behind the eight ball. I forced myself to run and do some sun salutations but could not muster up the motivation for a full yoga practice. I knew I was doomed the moment I walked into the living room and saw the mess I have promised Fibro-me will not bother me. But not on Tuesday! No, I started nitpicking everything apart and getting very bent out of shape. At this point I really should have gone back to bed for the day. Wouldn't it be so nice if we could just do that? Then I burnt my toast for the 559th time (my toaster oven really sucks) and was on the phone with my husband when I realized this. I screamed, "I burnt my toast I am hanging up!" into the phone and flung the charred remnants of a slice of bread across my kitchen towards the trash. I made a new piece while my egg got cold and flipped on the TV. Then I proceeded to cry at the end of a documentary about Hugh Hefner. Well clearly something had taken over my body and it was not me!

At that point I decided a shot of horse tranquilizer might be a preemptive step in avoiding a full on meltdown. Okay maybe not that dramatic but I have learned, I don't know it its Fibro or the strokes or just my wiring, that once I get going I will usually escalate my dark cloud into a full-on tantrum if I don't get control of it, and for heavens sakes I just didn't have time for that! Then I piled Yorkie & Porkie in the car and headed out to mom's house for dinner with relatives that have just arrived for the winter. Well I leave my house at 6PM and of course hit traffic. Poor Porkie quickly pukes everywhere because the jolting from the stop and go made her carsick. I look at my cell phone and the battery has about twelve seconds of life left. And then the whopper happens. I am forced out of the lane I needed to merge onto the connector for another freeway. I got so mad at this mean person who would not let me over! So I got off at the next exit. Once I got back on the freeway I realized I had already passed the connector coming from that direction. So I go two exits back in the direction of home and give it another try. And I wish I was kidding here when I tell you the exact same thing happens to me again! Except this time I cannot get in the lane. Once again another very mean person will not let me over. Clearly I have forgotten how to drive in traffic.

I am furious. Waving my hands out the window to please let me over you very very big SUV! But no, they too are incapable of humanity. It seemed intentional, driving the same speed as me in my blind spot for 3/4 of a mile, no matter how fast or slow I went. So I got off the freeway again, turn around and switch my almost dead cell phone on. Crying, I told my mom what happened and I sure wish I could make it but at this point don't have it in me and am going home. I felt robbed. Of my day, my family, my opportunities, my warm egg on a nicely toasted piece of bread. I felt sorry for myself and pouted. But when my husband came home he asked me why I threw burnt toast into the living room. "I didn't!" I said. When I hucked it across the kitchen towards the trash I missed. I guess Porkie, being quite the hunter and gatherer she is, sussed it out. But only a small rounded over corner was gone. My husband starts cracking up as he waves the rock hard petrified piece of wheat in front of my face and tells me I burnt the toast so bad not even the dogs would eat it. Pretty soon I was holding my side and laughing too, because the whole day was just so incredibly...preposterous. 

Thanks for joining,

Leah

Sex And The Fibro Girl

Sorry Helen Gurley Brown, I could not resist. This is a topic I've been getting requests to talk about from day one of penning this blog. I have over 500 published blogs and finally, I'm going to address it. I'm not here to talk about why we need it, who's doing it, or who they should be doing it with. That's either something you already know or none of my business. I'm simply here to say in my experience, sex and fibromyalgia are vicious enemies. Or more directly, fibromyalgia is a heat-seeking missile out to destroy both the physical ability and chemical desire to participate in activities that require contorted muscles and repetitive motion. No matter the endorphin rush it may provide.

When my body was wracked with pain so great that wearing clothing or jewelry hurt, close, intimate contact with another human being was the last thing on my mind. If it's a flu or cold, surgery or procedure a person will heal from, a temporary hiatus is not the end of the world. But when that illness is chronic, and it does not go away, that can indeed become the end of a sex life.

It's a very frustrating position to be in. The last thing in the world my husband wanted to do was add to my physical pain. The last thing I wanted was a repressed and miserable husband who wasn't getting his needs met. The guilt of being sick in the first place was already torturing me! After a few tizzies of hurt feelings and mangled communication erupted into outbursts of frustration, we finally got real and talked about it.

Turns out we were both suffering from a similar emotion, for entirely different reasons. His position: my sex drive was nonexistent. We didn't know it at the time, but my testosterone was in the eighty-year-old woman range. But before that medical information became known to us, he mistook my lack of initiation as a lack of attraction. Additionally, the last thing he wanted to do was add to my physical pain, so he was ambivalent to approach me.

My position: I was in agony. Sex was a painful endeavor I had no physical drive to engage in. Plus I'd gained so much weight, I didn't think there was any possible way he found me attractive. I looked puffy under the eyes and grew a generous double chin. My middle, the most popular spot on my body to balloon up, thickened noticeably. I don't know how he saw sexy, for the mirror undoubtedly told me I was anything but. 

Luckily it didn't take long for us to discover the power of intimacy. Being who we are, we set out to make it a game. It was called "20 Minute Time." When either one of us shouted those words, we had to hightail it to the bedroom. We would lay on the bed and get caught up, holding each other in a reverse pillow talk, if you will. No TV or computers, no expectation or pressure. Just twenty uninterrupted minutes of each other's company. And if it led to something more, hey, that worked too!

Either way we bonded and strengthened the love and passion so hard to keep alive in a long-term relationship, even between healthy people. Eventually we figured out ways to modify sex itself so it didn't hurt, or my pain was very minimal and entirely worth it. Creativity in this arena is critical. And like everything else in my life, energy had to be stored up in advance. And rest was required after.

Ultimately I discovered my fibromyalgia diagnosis did not come with a sex-life death sentence. It was hindered, hampered, and complex to figure out. It changed, like everything else in my life. It required flexibility (ha ha) and an openness to new ideas. But there are ways, if determined, to accomplish pretty much anything. For many of us, this is a pretty important anything.

Thanks for joining,

Leah

The New York Football Giants

I started dating my husband one month before I graduated from college. Right after graduation I moved and we spent six long months falling in love long distance. Sick of being apart he threw away nearly everything he owned, jumped on an airplane and moved into my 350 square foot "junior one bedroom" apartment. Luckily it had skylights or we would have turned into over sized trolls maneuvering around a hamster cage. That first Superbowl came shortly after he moved and he had no local friends. So I bought chips and dip and Bud Light in the cube and we had our own Superbowl party. It took me a good three years to realize football was so much more than the Superbowl (I was raised by basketball fanatics). And another two to fully accept "football season" as a period of reverence in our home.

Once my boyfriend was my husband of many years I finally understood it was not so much about football as it was about a particular team, the New York Giants. I believe my slow realization was lengthened by the team's lagging performance in the first decade of the new millennium. Starting with losing the Superbowl in 2000 I proceeded to watch my husband meltdown like clockwork every time they lost a game. I started to hate the Giants. They were making my life very complicated. A perfectly good Sunday would be ruined in a matter of minutes as the score flipped and the Giants seemed to forget they were playing football and started playing track and field. After gracing the playoffs with one game in 2002, 2005 and 2006, they went on to break one team's very impressive record breaking record and bring home the grand poobah in 2007. Since then they have been mounting and building, making the playoffs for one game in 2008 and just won our first playoff game for the 2011 season yesterday. 

Through all this loss and success my husband remained an ever faithful fan. There were years where people laughed at him and told him to get a new team. But that is not how that man works. Once they started winning the greatness of each victory was oh so much sweeter because he had remained true, rode out the rough years and was now seeing something near and dear to his heart find success. At some point during the last thirteen years we have been together I stopped getting annoyed and started watching. I will admit it, the players can be easy on the eyes. But being the competitive lass that I am I started wanting to know what was going on. And learning the rules. I now watch the game with honest enthusiasm. I have gotten to know a little bit about those boys in red, white and blue. How they can cream a team in the first two quarters only to come back after halftime and lose miserably. How their favorite position seems to be the last two minutes of the 4th quarter down by 8, and they will pull out a victory. You can't get too uppity as a Giants fan. They seem to relish the role of the underdog, it is when they do their best, play the hardest. And achieve the most. There are a lot of ups and downs and quite frankly they are extremely unpredictable. But when they are on it is glorious. Amazing. Spectacular! As I watched an impressive game yesterday I noticed the parallel between the endless grit and strength my husband and I have tirelessly exercised to be successful in our lives is reflected in our team. No we have not always achieved the winning title, but we have not failed either. We keep showing up, day after day, season after season, year after year, and trying with all our might to get it right. One of these days we will...

Thanks for joining,

Leah

Fibromyalgia Support Group

When I first became ill in 2005 I was confused and misunderstood. No doctor could tell me what was wrong with me, I was just depressed, they kept saying. And they treated me like a mental case for even asking for medical modification to my work schedule in order to keep my job. I was sick and getting sicker and did not quite believe myself, that is how good they were at convincing me nothing was wrong, it was all in my head. Or my pathetic excuse of laziness to avoid having to be an adult and move forward in life was rearing its ugly head. So blame and question myself I did. Thank God my husband did not. He believed in me and loved me enough to stand beside me the entire time. The entire "mentally unstable bitching, moaning, complaining, lashing out at him because there was no one else to" time. I know how truly lucky I am. I also know that I would not have made it through if not for his unquestioning love and support. I hear tales of spouses leaving, sick and tired of their sick and tired they vowed to love in sickness and health. As money, work and lifestyle all flush down the rabbit-hole of normalcy replaced by chaos, they bail. Leaving a person already so raw and stripped bare completely alone. It makes me angry, and it makes me cry.

I searched for support groups, someone to tell me I was not loony, there were others that understood and had been there, were there, for crying out loud! But every attempt, every turned-over stone left me so very alone as no real network ever revealed itself. So I just gave up, and got desperate, and threw my credit card at what my research showed was my best bet. Clearly this was not something I could live with so I set out to get over it. It, the still unnamed disease that was quickly disintegrating my body into a mush of pain, exhaustion and fear. It did not hold a promise of any kind of future. I was disabled and had to return to work! I was 28 years-old and had to get better. Better from what, I still did not know. A private  and specialized Fibromyalgia and Chronic Fatigue Syndrome clinic was my high priced saving grace. They diagnosed viral infections of CMV (Cytomegavirus), EBV (Epstein-Barr Virus) and HHV-6 (Human Herpes Virus-6) as responsible for Chronic Fatigue Syndrome, along with many other bacterial and fungal infections allowed by the breakdown of my central nervous system from the viral infections. They understood and had success in treating patients with this condition. They exploited the best of holistic and modern medicine to their advantage and I did recover, strengthened my immune system so it flipped on top of the viruses and their symptoms did not rule my life. I took a drug that was a major risk, Valcyte. A cancer-causing carcinogenic, it was a powerful anti-viral and no joke. And there was no guarantee it would work, for it was still in clinical trials. I had to make a decision, was potential quality of life now worth potentially cutting my life short at the end? Hell yeah it was! And it worked, after two rounds and tons of other drugs and a bunch of other stuff. But by then Fibromyalgia had settled in, my nerves damaged from such a long journey of untreated infection, and went wild in an epic battle. I emerged as victor and got it under control. That is where I sit today. In remission from CFS and managing my Fibromyalgia. My life is not what it was before, but is so much better than where it had been.

If I can offer any words of encouragement to my fellow Fibro friends it is to keep searching. Search for the support of those you know and love, search for the friendship of others that understand and are in the trenches with you. Search for doctors and medicine to heal and manage your daily life, work and responsibilities. Search for a way to laugh a little bit every day and find a way so this illness does not control you. Oh so much easier said than done, I know, but as long as you are living a life, it mine as well be a life worth living.

Thanks for joining,

Leah

This blog was originally published on 8/13/10 and is an excellent summary of my journey with Chronic Fatigue Syndrome.

Just Because I Am Having A Lilac Day Does Not Mean Fibromyalgia Has Gone Away

I have a serious problem. It is my good days. The ones I work so hard to have by getting my rest, managing my stress, eating nutritious food and all the other rules I must follow to avoid flares as best I can. In the past it was me, all me. I would have a lilac* day and jump up and run around in a frenzy trying to get caught up on everything psychotically pecking at my psyche I had been too sick to do. Then I would be sick again. I did that about 75,000 times before we met half way. My body resumed a degree of functionality and I developed an ability to look at disarray and leave it alone.

My problem now is expectation. If I am not bitching and moaning about my sacroiliac all jammed up or the pinched nerve at the top of my convex spinal cord causing my right hand to lose the ability to grip, shingles or an Epstein-Barr flare, then it is assumed I am just fine and dandy as can be. Not sick anymore. Why would I not jump up at the chance to join the land of the normals? Go shopping or to dinner, girls night out or a spontaneous movie? BECAUSE THE REASON I AM NOT IN A FLARE IS BECAUSE I DON’T DO THOSE THINGS!

Sigh. How on earth does one communicate this? How do I tell my friends and family, even at my best I cannot keep up with them at their worst? That my life is carefully managed so I don’t throb with every heartbeat in body-wracked pain and I simply don’t have room? That pretty much they have to accept me on my terms or not at all? Oh this is hard. Oh so hard. Getting Fibromyalgia managed was a nightmare. Living with managed Fibromyalgia is worlds better but still comes with it’s own complications and challenges. But ever forward we must go…pushing for progress, recognition and acceptance. We crusade because we have to, for we simply must find a way to exist on this earth without this illness eternally ripping us apart.

Thanks for joining,

Leah

*Please click here for an explanation of our Purple Pain Code.

The Precious Present

2011 was a year I was anxious to leave behind. It was certainly not the worst year of my life or anything, but it came with it’s own special turmoil and anguish and I really just needed a fresh start. I was so bogged down in the past. Past behaviors, patterns, hurts. Past reactions, responses, expectations and disappointments. Sitting in the recesses of my life, the forefront of my mind, marring my future, in a place I could not reach because they had already happened. I would get so mad about whatever offense I was obsessing over, be it a misunderstanding or slight injustice or blatant injury. A year of stale emotions I cycled through continuously, round and round like a Ferris wheel. It was exhausting.

At some point it occurred to me I was allowing the infected past to poison my precious present. And then I got mad about that. So after many cycles of anger, fighting back as best I could and ultimately getting my booty kicked, I finally conceded. I could not fight the anger monster anymore. It was much bigger and stronger than I. But I discovered what I could do, for I am far smarter than it. I could stop giving it life. I could cease to rise to it’s occasion. I could rip my brain out of whatever negative thought pattern I was caught in and ask myself what it had to do with right now. When the answer was nothing, I could force myself back to right now and change my focus the way some folks change an uncomfortable subject. Quickly. So I set out on a journey to chisel those neuropathways in my complicated and sometimes questionable brain into automatic response.

It takes years, to break a bad habit and replace it with a good one, in my opinion. I am plenty old enough by now to know practice and mindfulness are the only ways to get there. And that a new digit at the end of the calendar year did not mean I had wiped the slate clean and was starting a new year as a new me. I still had the same problems, hurts and anger. But I also had a new way to deal with it. Like many things in life that are really hard to do, it takes making a decision and refusing to give up on it, no matter how many times life hurls you off track. I got so sick and tired of watching my blessings pale in comparison to my hardships. I know my puppies will not be here forever, my youth is at that “beginning to be fleeting” stage and there are no guarantees tomorrow will come. 2012 is the year I have decided to gift myself, no longer content to allow right now to slip through my fingers. Right now is all I have, by returning again and again, to the precious present.

Thanks for joining,

Leah