life is hard. I hurt. I am overcome with an overwhelming exhaustion again. I am not a good wife any more, was I ever? I wonder about my parenting abilities. I am tired.

I had a lovely weekend with my husband. The one my brother told me I am lucky to have since I am not that great of a woman, I am nice and all, but not attractive, “you know what I mean”.

I am working again, but it doesn’t count because it is only 8 hours a week. It should bring in about $600 a month, but it is only 8 hours a week so it doesn’t count much.

I am doing my best,,,that is all I can say. Doing my best to try to make my home homey, my yard soothing, my kids healthy, my husband happy, and work as much as I can. all I can…..

Holding on tight…

Busy weekend
Helped at the Roller Derby bout
Will begin training as a ref this week!
work is still draining me
My daughter went to her first prom, was sooooooo beautiful, and had her first romantic encounter ever!
(Yes she told us all about it!)
The same daughter is now my chauffer, as she has her drivers permit now. Once we get past the jitters, she is going to be quite good.
finished finals with A’s..
Started Radiography class, physics anyone?
Planted a low water succulent garden on the side of my house.

oh yeah..and.
Intervened when neighbor was verbally assaulting his pregnant girlfriend for over 10 minutes on the sidewalk in front of their house.
(just suggesting they take their business inside, the kids were freaking out and it was out of control)
He threatened to kick my a**, told me to mind my own business and stay the h*** away from him and his property.
Said my family was in trouble now, because he doesn’t take any s*** from anyone.
The entire time his girlfriend is crying behind him, mouthing “I’m sorry, I’m sorry” over and over again”
My brother came out to intervene and then it escalated.
I spent quite a few minutes between them, crying “it doesn’t have to be like this…” and stop,,,stop stop.
The neighbor is calling in the “Mongols”, the motorcycle gang he rides with, to show us who rules this neighborhood.

whatever…he is so full of bs that I can’t believe a single lie he weaves.

Freak.

But now I worry about my children, him yelling at them…they like him. He seems to be a bit of a super hero, lots of ink, piercings, high energy, built cardboard forts with my kids in the driveway when he got new appliances.

so strange, we have been so welcoming and hospitable to them. They have borrowed things, come by to chat, gone on bike ride tours of the neighborhood with us…he and I had been looking at his pack yard, finding the landscaping under the overgrowth, just a couple of hours ago before he threatened to kill me.

He drinks constantly, and is apparently a diabetic. I suspect he is partially insane with a dash of blood glucose level irregularities thrown in.

I won’t have it. I will do what it takes,,calling the cops, being a bitch, building a wall….whatever it takes to keep my children safe, to not feel like I have to lock the windows in the summer nights for fear of the neighbor.

My husbands bike was found somewhat damaged this morning, flat tire and a broken rim…it was in the shed, with the lawnmower the offered the use of to the neighbor.

I mowed his lawn last week, while they were gone for the day, just being neighborly.

Freaking Insane people…

Holding on tight…

Busy weekend
Helped at the Roller Derby bout
Will begin training as a ref this week!
work is still draining me
My daughter went to her first prom, was sooooooo beautiful, and had her first romantic encounter ever!
(Yes she told us all about it!)
The same daughter is now my chauffer, as she has her drivers permit now. Once we get past the jitters, she is going to be quite good.
finished finals with A’s..
Started Radiography class, physics anyone?
Planted a low water succulent garden on the side of my house.

oh yeah..and.
Intervened when neighbor was verbally assaulting his pregnant girlfriend for over 10 minutes on the sidewalk in front of their house.
(just suggesting they take their business inside, the kids were freaking out and it was out of control)
He threatened to kick my a**, told me to mind my own business and stay the h*** away from him and his property.
Said my family was in trouble now, because he doesn’t take any s*** from anyone.
The entire time his girlfriend is crying behind him, mouthing “I’m sorry, I’m sorry” over and over again”
My brother came out to intervene and then it escalated.
I spent quite a few minutes between them, crying “it doesn’t have to be like this…” and stop,,,stop stop.
The neighbor is calling in the “Mongols”, the motorcycle gang he rides with, to show us who rules this neighborhood.

whatever…he is so full of bs that I can’t believe a single lie he weaves.

Freak.

But now I worry about my children, him yelling at them…they like him. He seems to be a bit of a super hero, lots of ink, piercings, high energy, built cardboard forts with my kids in the driveway when he got new appliances.

so strange, we have been so welcoming and hospitable to them. They have borrowed things, come by to chat, gone on bike ride tours of the neighborhood with us…he and I had been looking at his pack yard, finding the landscaping under the overgrowth, just a couple of hours ago before he threatened to kill me.

He drinks constantly, and is apparently a diabetic. I suspect he is partially insane with a dash of blood glucose level irregularities thrown in.

I won’t have it. I will do what it takes,,calling the cops, being a bitch, building a wall….whatever it takes to keep my children safe, to not feel like I have to lock the windows in the summer nights for fear of the neighbor.

My husbands bike was found somewhat damaged this morning, flat tire and a broken rim…it was in the shed, with the lawnmower the offered the use of to the neighbor.

I mowed his lawn last week, while they were gone for the day, just being neighborly.

Freaking Insane people…

life has a way of slipping into a higher gear when you really didn’t want it to.

The great news is I am working. I have not felt able to work for a while due to my unpredictable pain levels and days of such fatigue, but really I notice a marked improvement in my energy (I really think I have more energy than I have in years), and a small reduction in my pain levels.

So, I was lead to what seems to be a perfect work situation. I have met a lovely family with a young adult son who suffers from a Chromosomal disease called Angelman Syndrome

They are part of a wonderful sounding program for families who have had frustration with traditional home health care agencies. It is called “Consumer Directed*something*”. Basically they get to hire whom they want, and act as supervisors under a state funded program that pays me directly. I help with their enchanting son M-Th evenings, though I had a chance to work through this previous weekend and did.

Their son *P* is 19 I believe, and has captured my heart already. He is non-verbal, very affectionate and curious, with sparkles in his eyes like I have never seen. I would compare his behavior and communication skills to that of an 18 month old? hmm, will have to find a better way to describe him.

P has his way of getting you to know what he wants, and pretty much leads the show. I help him bathe, eat, move about the home (either in his wheelchair or via the much preferred crawling due to a tragic error in a spinal surgery a few years ago), play a bit, get in water fights in the shower…:)

He was genuinely happy to see me yesterday morning, standing up at his mothers desk in her office on the front of the house, smile so big I could see it from the street. He loves to hug, give kisses on cheeks, take your hand to point at things that catch his fancy..

When his eyes lock with mine, I feel a spark in my spirit, like I get a glimpse at the real P inside there for a second, and he is just pure joy..

But, the job is somewhat physical, he is the size of a young man. He is strong and will sometimes want to pull you in closer at inappropriate times. If he gets his mind set on something, he will persist! I am weary..

weary enough to just end this entry here~!

Just a quick hop on, so much to do. I just wanted to share more about my new baby. I need a name, suggestions are welcome. I will post pictures soon, after a quick wash after my adventure through a crazy springtime rain/hail storm on Monday…

My bike. My sweet adorable friend…I needed to spend time with her today..I missed yesterday. I am still trying to get a good grasp of how long it takes me to ride somewhere, because my “biking” world is growing quickly. Last summer we rode down to Old Town a few times, to concerts and such. Dan rode to CSU for work, we rode on the bike trail nearby. It felt like a significant journey, just a couple of miles.

Last weekend I was guessing that I put in about 20 miles in 3 days! I really need an odometer for my bike, so I can figure out my distances. Last Friday Aaron and I rode all the way to Rebecca’s school, on the far East side of Ft Collins. I think it is about 4.5 miles…just guessing. (and Dan will probably send me google maps to figure it out,,you do it for me ) Not long ago I would never have guessed I would be able to ride that far. I know it isn’t FAR, but to me it seems so far to push my aching body.

Yes, I did feel every bit of that ride once I sat still, but it was worth it. I just feel so alive, so strong, so happy when I ride.

Before it was time to pick up Joshua at school I had about 35 minutes to ride. I headed west to Lee Martinez park, caught the Poudre River trail there, back to Shields and back towards the school, in about 15 minutes! I thought it would take twice that. So I rode the now very familiar streets of our quirky old neighborhood and killed 10 more minutes or so.

Just such a happy little refuge…music of the day was Depeche Mode followed by Fiona Apple.

Just wait until you see pictures…

I feel like a neglectful pet owner. My hoards of fans have been begging me to continue pouring myself into this lonely little journal. (OK, Dan mentions it once a week or so) So here I am, refilling the water dish and checking on the litterbox..

I suddenly felt like my life, my own real life that happens in front of me, was needing as much attention and focus and I could give it. At the same time I sort of felt an aversion to sitting in front of a computer screen, though that manifested around the time my laptop became painfully unreliable. Yes, I see a correlation.

So I am here to admit that I easily have a months worth of email, ignored. Online communities I use to touch base with daily, I have spent approximately 10 minutes in the past few weeks there for a moment. And of course,,a blog sits. It sits apparently abandoned just after a rather boring post, just left life hanging.

We all know that none of my faithful fans (Dan) need a full recap of the blank time in this award winning blog, and I don’t wanna do it. So if you don’t know it happened, well then we can pretend it didn’t and just keep catching up simple.

I have good days and bad with my fibromyalgia. I had a period of really feeling stronger, pain not reducing but energy was great. Then I sort of crashed…and am trying to work myself back up from that.

I did learn something key to my life, something key to my future health, happiness and functionality. I realized that even though every single signal I receive from my body is telling me that something is wrong, sleep, rest, don’t move because it hurts, my symptoms do not improve by following those signals. I slept for the first 4 months or so after my diagnosis, but admittedly I was probably trying to sleep away from some emotional pain as well. (Loosing both of my grandparents and the horrible things we went through helping my grandfather go). I hurt so much I didn’t want to move. Was so tired I just longed to sleep. Every moment I could, I would curl up to rest, curl up to sleep.

But as I continued trying to nurse myself into healing, I noticed myself feeling weaker. Reading online you hear stories of those completely debilitated by this disease, and I desperately don’t want that. Not yet, but not ever if I can help it. When I started noticing that some days it was so hard to go up the stairs, I knew something had to change. One day that was particularly bad I needed to go to the store, and truly did not feel like I could make it inside the grocery store from my car, and back out again. Just the act of getting out of my car was too much. Dan suggested I use the cart available for people just like me. It was tempting, so tempting. But I was horrified, to realize how close I am to becoming that person…and I am not ready, I won’t give myself up without a fight.

So despite the pain of it, when I was alone in the house I would make extra trips up and down the stairs. It truly felt like exercise, not just living. It made my joints hurt, I just wanted to stop….but I suddenly understood that if I stopped, then I wouldn’t be able to. I must keep moving. So I started walking more..(Dan got me a small cheap MP3 player to use while walking,,best thing ever!) Well that was relative. Some days that “more” was around the block. or just up to Joshua’s school to pick him up. But I was driven to keep moving every day.

I have found new bike trails in other parts of town, lakes to walk around, new parks. I have watched winter ease into spring, and breathed to my toes. I have never felt such a need to breathe deeply.

The secret that I want to tell everyone with this disease is that it does not hurt more if you move! Now sometimes I am more limited, but I have done my best to push myself every day. I find refuge in it. Maybe because for the first time in years I have this time, often alone, consistently. I have finally realized that it is a matter of life and death, because if my quality of life continues to decline more, if my daily suffering increases, I won’t be living. That is not life.

I struggle with the intricate dance of pain management. I take narcotic pain medication daily, at regularly scheduled times. I also have a second pain medication that I take between the regularly scheduled doses if the pain “Breaks through” (hence the term break through pain).

**This portion has been edited in an attempt to reduce the amount of drug ad “comments” to my blog…that sucks**

Anyhoo, I was taking a round about route to the point of telling you that I have found that sometimes, when I am dealing with break through pain and am considering reaching for that second medication, I will instead try to go for a walk, or a bike ride. Even if it is just around the block a few times, that movement,, the wind on my face, the breathing deep to my toes….sometimes it is just enough to get me through that little pain battle. Endorphins would be the official medical explanation. But I think it is something bigger than that. It is feeling the sun, and feeling the solid earth under your feet, hearing a bird sing in the distance. I think it is sharing life force with the planet, or something entirely cheesy like that. I don’t know what it is, but it is being alive, and it feels so wonderful.

So Dan and I made an entirely stupid (in hindsight, now that we know our transmission on the van would unexpectedly crash 2 weeks after this) decision, and purchased new bikes for him and I with part of our income tax returns. We also got new bike helmets for everyone in the family. (the rest of our taxes was carefully budgeted out for things like DDS visits for the kids, stocking the pantry, car tune ups, so on..all very sensible things. Of course in the end most of that ended up being a transmission…drat)

I just have to say, I have the very best cool cute adorable lovely bike on the planet! and that is where I am ending this blog….stay tuned for more on that topic, my new love, my new obsession, my ticket to ride. My physical therapy, psychologist appointment, meditation, and so much more,,,all on two white walled tires! Oh just you wait and see, you will understand my passion!

I don’t think I have shared enough how wonderful my husband is. He has had endless patience for my up and downs, he has shouldered so much more than he should hoping to keep me from doing much. He loves me in a way that truly makes me feel beautiful all the time. I am so blessed to have been sent him in my life, and how lucky I am to have him for my life partner…

The symposium on Saturday was so soothing and therapeutic. While I am in school, it is a trade school. I work and learn, but have not really had my brain fed in the way it craves for a while. Saturday was such a wonderful academic thinking infusion, it was fabulous! Speakers, all addressing Hurricane Katrina, ranged from a “Mold specialist” who creates protocol for mold abatement and then certifies that the building is safe for humans again; a geologist who has studied for years the impact of the Mississippi river, the wetlands, and changes by man on the entire state of Louisiana; A professor from CSU who specializes in the sociology of disasters. She has been doing research with the families evacuated to Colorado.

She and I really clicked. She has a grad student who is also working on a thesis regarding single mother families and their recovery. We promised to chat again soon, and I may sit in on the Sociology of Disasters class next fall if it fits with my schedule, just because I can’t imagine a more interesting class!

It was a good day, so good for me, soothing for my soul, fed my brain, reassured me that the entire world has not forgotten about those trying to eek out a life after that disaster. So many lives are still not “normal”..

But the wonderful day must have just totally wiped me out. Yesterday I was so tired I could barely keep my eyes open. Rebecca sent me to bed early afternoon because I kept dozing off in my chair, and I slept for 4 hours! Then I slept all night..phew. I am extra sore as well..

but it feels as if spring might truly be in our future. It was relatively warm when I walked Joshua to school, and the walking felt so good I took a longer route home. I think we are looking for 50’s today. Maybe we can melt more of the big piles out front before we get more snow.

That is what it feels like. I can take a deep breath. I am in significant pain today, because I drove Dan’s car to Greeley and back last night. Sounds silly, and it is frustrating to me, and an indication that I have to find a way to start walking in spite of the weather. But his car is a stick shift, has no power steering or power breaks. It is difficult for me to turn corners in his car, it always leaves my shoulders aching, my leg aching. How pitiful my body has become. I need to not allow this to happen…

But, my brain is clear, my spirit is awake again, I can see the sunshine and take a deep breath and feel it all. I am back…..and am slowly reevaluating each and every medication I am on. I want my life back, and don’t want to be under the horrific influence of something that powerful in a misguided attempt to retrieve myself.

My psychologist wondered if I didn’t have more of an allergic reaction to the medication rather than just having a lot of side effects. It really was extreme and severe.

Anyway, my brain is back, I have some energy, and after all of that, I don’t mind the pain so much. I mean I do, at times, but would rather hurt with a clear head than the other option. so pain meds it is. I know for many being on pain meds would not go along with a clear head, but my body has become so accustomed to narcotics throught the many years of health struggles, surgeries, etc, that the side effects of drowsiness and such are really limited for me. That fact disgusts me, but alas, it is what it is, and I will do what I need to in order to live the best life I can, be the best mom, wife, etc.

I am nostalgic about Louisiana today. My time there after Hurricane Katrina is something that still effects me every single day. I was changed, and part of my heart is still there. If you are new to my universe (I like to have the delusion that I have crowds of secret readers who pop in occasionally,,lol!) then you have not heard the story of my journey to Louisiana. My husband did a fabulous job recording the news from each of my phone calls on my trip webpage. A year and a half later I still have not added any pictures. If you are new to my life and are interested, let me know via a comment and I will try to get some pictures up here of people and such. Here is a link to that story…

Dan sent me an announcement he had just gotten via CSU email yesterday of a Katrina Symposium tomorrow. Researchers (primarily from the anthropology department) have been studying the impact of the Hurricane, the lives of survivors who have relocated, those left behind. I called and got two seats for myself and Kristi. (she went with me on the trip. I worked with midwives, she did animal rescue. We were both changed) It will probably be a wonderful and emotional day, but I am looking forward to it. It is still such a part of my daily life, my experience there, my worry for those still there.

my sweet miss Maisy..the sister of my soul, home in New Orleans. I think I will call her today…she is my love, truly. Our souls touched the first time we met, and our souls have been linked since then. We only talk every few months, but the connection is reestablished immediately. There is something so special about our connection, I don’t know how to explain it..you will read in my story that I met her in the shelter in Baton Rouge, and took her back to see her home and gather some treasured belongings. She was pregnant,and I was blessed to provide some of her prenatal care. She called me from the hospital the day her baby Ky Kunta was born, a post Katrina miracle and burst of joy for that extended family. I spent hours on the phone listening to her keening grief after Ky died of SIDS when he was 7 weeks old. I don’t know how two women could be more different. She is from the south, I am from the west. She is black, I am white. is more and more ways, we are like two sides of a coin. but there was just something, like we knew each other in another place and time and were just waiting to meet again, or something. I don’t know, but she feels it to. I was telling her one day how I don’t know why I love her so much, there is just this thing. I said that the first time I saw her I felt our souls touch, and she told me the exact moment it happened. She felt it too, when we were walking towards each other down the long aisle in the Red Cross shelter, surrounded by 5000 people. God just pulled us toward each other…

So anyway..the point is that I am really looking forward to the Symposium tomorrow. To be gathered with others who have not forgotten…it will be therapy.

alrightly, I have a to do list today, and was sidetracked by having coffee at a neighbor/friends/parent of Joshua’s classmate house. We just got chatty at drop off and walked to her house and visited for a couple hours. It was lovely! but, I really have a few essentials to get done today..:)

That was one of the most bizarre and terrifying interludes of my life. I don’t have the energy to write a lot, but I just wanted to tell the universe that yesterday, between 12:30 and 1:00 in the afternoon, I could feel that medication leaving my system. Really, in that half hour, it felt like I had come up from underwater for the first time in days. My head started to clear, my stomach settled, I felt less frantic, less tingly and disoriented..

I find that I still have no control over my emotions, I cry at everything. I had to leave a class today because I burst into tears. That was embarrassing, but I have the grace to cut myself some slack.

That was the most nightmarish reaction to medication I have ever had. I can only imagine what it actually was doing chemically to my brain. I mean I know what it is created to do, has been proven to do, but it felt so toxic to my body, to my being.

I feel like this may be a turning point of some sort. I can’t imagine being willing to “try” another medication like that. And it makes me feel less comfortable with the medications I am still on, though I have a good understanding of why we have chosen each, how it is working, why it is a good idea.

I don’t know what this means for the future with my disease..I do know that the topamax was reducing my pain, I didn’t realize how much it was until I came up for air. So do I choose to live with pain, do I just accept pain medication for the rest of my life? Right now those feel like the only options…

some choice, eh?

I am in the middle of a nightmare. Truly. If I were to spill out all that is festering inside of me right now I fear I would scare those who know me. I am so hopeful that my emotional/mental state is the result of a bad medication choice, and not indicative of what is really going on within my soul, because if not, I am defeated. I am not strong enough to endure the life ahead of me.

Standard protocol at the specialist I have entrusted with my care is to first get a handle on the crisis with pain management and sleep aids, second step is to begin addressing the underlying imbalances that lead to symptoms, then long term life quality including long term realistic pain management, ideally with less actual pain medication.

So we started me on an old school medication called topamax. It is listed as anti-seizure/anti-migraine, but off label use includes fibromyalgia because of the way it alters the Calcium uptake in neurotransmission, changing the pain message. Sounds good to me, it is proven pretty safe because it has been used forever and ever..has good promise to help really reduce my need for pain medication to manage the constant pain.

Protocol is 4-7 days at initial dose, increase every 4-7 days until therapeutic dose reached. Our goal for me was 100 mg, in my research I have seen up to 500mg in severe seizure disorders. staring one (25 mg) pill at bedtime, adding one in the morning, working up to 2 in the morning, 2 at night.

The first week seemed just fine, though about the time I would have established a constant blood level after starting the med was the day I thought the massage had pushed toxins out of my muscles. I increased to 2 a day, morning and night, this weekend.

Saturday I felt a bit worse than my last blog entry, Sunday I started vomiting, so dizzy. Incredible sinus drainage (um, yeap, that too can be a side effect of this drug it seems) I feel like I am halfway passed out, that tingly all over detached going down feeling, I have kept nothing down since Saturday. I have been drinking so much water it is insane, but excessive thirst too is a possible side effect.

I have to tell you that in the past few days, I wish I was dying. I am so hopeless feeling, cry constantly. All, listed side effects.

I have not had any of the medication for over 24 hours now, but I know that if it takes 4 days to get a constant blood level after starting the medication, it is only logical to think it will take a number of days for it to be out of my system. I have had such an intense reaction to this medication I am absolutely terrified to try anything similar, but then what options for my life?

Ironically, I was finding I needed less pain medication because the constant achiness was decreasing.

Life is unfair isn’t it? Like that seems to be the understatement of my lifetime. Life is unfair.

I just deleted a lot of words I am not able to set free to the universe. I also fear it would change how some of you out there see me. Because I am very weak right now, and I have zero faith. I have an anger I have never felt, despair that nobody should feel, and so much pain…

I came home and sobbed to Dan earlier that I hurt everywhere..and I do. My body hurts, my heart hurts, my soul hurts, my dreams have been stomped on and destroyed….in every way a person can hurt, I hurt that way right now.

No mortal can endure this for very long…we just can’t.

I suspect that in cases of long term chronic pain, when there is nothing that will physically end the life, a persons spirit will let them go from their body instead of the body releasing the spirit. Because I think there will come a point where no more pain can be endured….