10 year CFS/ME Anniversary

Some time this month, 10 years ago, I'm not exactly sure of the day, I was rushed to the hospital with what Doctors assumed was a heart attack. I had been really weak for a couple of months, and just thought it was the flu. I finally had enough energy to go grocery shopping with my husband and made it part way through the store when it became almost impossible to move. I was exhausted! My chest hurt and that scared me. My husband got me into the car and rushed me over to the Urgent Care across the street. Its funny when you walk into those places you are normally checked in, give them your info and then go sit and wait. I walked in and the nurse took one look at me and said "Honey what hurts" I said something along the lines of "my chest, everything... so tired" I dont think I filled out any paperwork that day, they whisked me into a room and hooked me up to every machine they had, there were at least 4 doctors in the room and one was calling 911.



Before I knew it I was rushed into an ambulance and on the way to the hospital, I was coherent enough to laugh when they asked me if I wanted them to turn on the lights and go fast. It seemed funny at the time but I know now they were trying to judge how strong I was. They turned on the lights. I was rushed into the cardiac wing of the ER. Cardiac ICUs and ERs have a very unique smell to them. One I grew to hate while my dad was sick.
It didnt hit me until I smelled that how serious my predicament was. I had 3 small children, surely this couldn't be happening to me! You see, my dad was sick for a really long time. He was on the heart transplant list and passed away before a heart became available. He was only 56. I began trying to remember all the terms I learned then and listened for the doctors around me to say anything I recognized to try to gauge how bad this really was.




But I was only 30 and a woman and was relatively healthy, albeit not quite at my goal weight but not obese either. A nurse came in and asked if I was crying because of the pain or crying because I was scared. Scared I answered, really scared. She assured me I did the right thing and was in the very best place I could be and she really kind eyes, nurses should always have kind eyes. I know I drifted in and out while I was there, the pain was starting to ease but it had drained what little energy I had left.

They started running more tests, blood work, IVs, a CT... you name it. The good news? My heart was fine! In fact I have a "juvenile heart" (which I use as my excuse when I act immature). The bad news? They couldn't tell me what was wrong. It might yet be very serious they said. "Not out of the woods yet" I heard the Dr say. They reluctantly let me go several hours later after I promised to see a cardiologist the next week. With my family history I was monitored very carefully for more than a year, they were never able to explain why I presented with those symptoms though.



So began my journey, I was a pin cushion every time I went to a Dr. They took more blood and tried to pinpoint what was happening with my body I had numerous EKGs more CT scans and anything else they think of. I was told it was anything from a virus to a disease to sudden depression No one had any answers and it was incredibly frustrating. Finally I changed doctors and she went through my history with me. Then started poking at me "Does your elbow hurt? Does your neck hurt right here? How about your knee?" Yes, they all hurt sometimes badly, sometimes just sort of vaguely hurting but always there was pain, I had been living with it so long I just sort of assumed that was my normal. Hopeful I might finally have an answer I asked what she thought was going on. She handed me a map like this one http://www.fibromyalgia-store.com/assets/18pointstenderness-xlg.jpg and said "You have Fibromyalgia"



Well then, I didn't see that one coming. She handed me another brochure and said "Start taking these pills" Now Im not really a fan of medication. I take it when I need it but I could never be a drug addict. I'm a bit of a control freak (those of you who know me are thinking "NO! Really??) and I don't like the feeling of not being in control of my body. I took the pills and went home to process all of this information. The kids were at a friends house and when my husband came home I was just sitting on the stairs staring at the door. I just wasn't all there, you know? It scared my husband enough that he called the doctor and told them this wasn't going to work. I threw that first drug in the trash and called my Dr the next day. Since that first day I have been through more medications, more treatments and a few Doctors that didn't believe in fibromyalgia at all. Trust me, its real. They tacked on Chronic Fatigue a couple of years later. Chronic fatigue is funny, it sounds like you would sleep a lot, when in fact its the opposite, you rarely sleep. Insomnia has become a constant companion. I am so grateful for the internet because late night TV really sucks, I spend a lot of time here at my desk typing away on twitter or facebook when I should be sleeping.



I'm actually very lucky, I still function pretty normally. I get tired faster than I used to. I get restless though and have a hard time sitting still which can be a real problem when you're at a concert or a movie or just out with friends. I often make excuses about going to the bathroom, I'm not really sure which is worse, explaining that I have this and cant sit still or people who don't know me thinking I have a bladder infection or something. Its easier to go with the bathroom defense. I am hyper sensitive to touch, sound and even smells... all of which seem strange to me. I think the dreaded "Fibro Fog" is the worst though, I am an intelligent person, some days though you wouldn't know it. I lose my train of thought or go off on a "bunny trail" that doesn't make sense to anyone else but me. I often completely lose what I was thinking and cant remember the most basic of things. Often in my posts there will be a missing word or I will put the same word twice and not catch it. Post Its and my note apps on my phone have become my saving grace.



Today I do in fact take some medications, mostly just at night to at least give a chance at sleeping and pain medication because it has gotten a little worse through the years. I do Yoga when I can and am learning to rest more often and listen to my body. I have never "done still" very well. I have always been the first one for a road trip or a concert or hiking or whatever. I still do a lot of that stuff, just at a different pace. I still tend to go until I collapse because that's my personality but I'm learning. I have always said that God doesn't whisper to me, he thwacks me on the knuckles with a ruler to get my attention. This is sort of the same thing. If I don't listen, I get the ruler treatment and I am down for the count. I am learning, it just takes me awhile.

10 years is a long time, but I'm ok. I have Hope, I have Faith, and I have my family and friends who love me through any attack I have and are incredibly understanding when I have to say "I just cant today". I know that I am so fortunate to have the support that I do and I dont ever take them for granted! They are truly amazing and I am blessed to have each of them, each of you, in my life. I love you all and appreciate you more than you will ever know. Thank you.

I'm a special needs parent

Karissa was born in 1999, so I've had that title for awhile now. Some days it makes me strong and some days I cry but most of the time I'm just tired. Tired of all of the emotions that tumble through me on a daily basis. The utter joy that I feel when she "gets it" whatever "it" happens to be that day. Tired of the look of pity on other parents' faces when she doesn't act like their perfect child. Tired of the giggles from audiences when she is in a school play and does something that others don't understand so they laugh, again with pity, but more because they don't know what other reaction to have. Tired of the guilt that I feel sometimes because, while she has issues, she sits in a class with kids whose issues are more severe than hers, and I know that some of the other parents resent that.

A friend said something to me that I have thought about for a long time but could really never figure out how to answer it. It was a friend from High School and I hadn't seen him in a long time. We were catching up, talking about kids and family and how great it all is. I told him about all 3 of my kids, my eldest was playing hockey at the time, my middle child was involved in anything that revolved around acting or singing and then Karissa. Well Karissa... she loves to play but she doesn't have a lot of time for that right now as 9 hours a week of therapy and multiple Dr. visits don't allow for a lot of free time... I'll never forget what happened then. My friend took my hand, squeezed it and said "That must be really hard" I just kind of nodded my head, not knowing what to say next.

I've thought about that moment a lot over the years. "That must be really hard" I couldn't begin to tell him how hard it can be. The Doctor visits... SO many Doctors! You see, they don't know whats "wrong" with Karissa. For years different Doctors have sworn they had the answer but none of them were ever right. They would say "Its this! Its so clearly this!" but then a week or a month would go by and she would do something to totally prove them wrong. She has been to specialists that have degrees lining the walls of their offices like wallpaper from prestigious schools all over the world. All of them sure about one thing or the other, then they order a test and it wouldn't be the right diagnosis after all. We have been to neurologists, pediatric cardiac specialists (who made her wear a heart monitor for a month), we even drove 400 miles to get a second opinion. One Doctor gave her hours of tests over several days and shook her head sadly and said "we need to an MRI, I think she is missing part of her brain and we need to know right now" You can imagine what that would do to a parents heart. We worried and prayed and prayed some more and asked everyone we knew to pray. Well after a very traumatic time of getting her to the hospital and into the test the answer we heard was "hmmmm I was so sure that was it but its all there AND its all working. I just dont understand"

Why did we go through all of that? Any parent of a special needs child will tell you its so important to have an answer. Parents of peer kids hate labels, parents of special needs kids crave them. If they could tell me tomorrow "This is what it is" I could look it up, I could find answers, I could find other people who have been through what I am going through and they could tell me that its going to be ok! Because no one tells you that! NO ONE says that. When you don't know whats wrong with your child, you are left to wonder "What does life hold for her?! Will she be able to live on her own? Will she find someone to love? Will she be ok?!" You don't know how to treat a new symptom, you don't know if this IS a new symptom or if its something you should call the Dr. about. You don't know what normal is anymore. Your normal is a whole new normal and NO ONE tells you that!! We were told that she may never walk normally, she probably wouldn't talk or socialize and she certainly wouldn't be able to function on her own. We were even told at one point that she might never be able to be independent. Its enough to drive you insane, certainly enough to exhaust you.

But there is hope, there is hope in those darkest of times. The last neurologist that we went to, in 2004, observed her for a long time, he asked questions here and there but mostly he just watched her. She brought him a book to read and sat down on his lap and she sounded out some words for him, a miracle in itself as she is terrified of anyone wearing a lab coat. When she went off to play he looked me in the eye and said "She has Karissa syndrome. She doesn't fit neatly into any of our little boxes. I'm not sure we will ever know what happened or what is really wrong, but the facts are she is a bright, joyful, happy child and in the end, what more can you hope for?" I left that office and for the first time in a long time, I felt hope. And I knew, it IS ok. It may not be what I thought it was going to be but its ok, she is ok. In fact, she is better than ok. She is one of the most loving, caring, joyful people you would ever want to meet.

So, yes, it can be hard but its also beautiful. She is fiercely loyal, she has the strongest moral compass of anyone I know and fights for what is fair. She stands up for people who cant stand up for themselves and she has friends, so many friends. They love her for who she is and isn't that a great gift? She is so much more than I could have hoped for and she has made all of us better people and for her, that is easy. That is just who she is and part of the "Karissa syndrome".

More cheap art

So, as you know, I really like to figure out ways to make things unique and functional while still staying on a budget.

This is more "art" from my collection. I found this fabric at Ikea last year and fell in love with it. I bought it thinking I would make pillows out of it or something. Well I had another one of those walls in my house (see previous post) that I had to fill. Instead of going to the hardware this time I decided to try to frame it. I went to Bed Bath and Beyond and with 3 different coupons (see I told you I was cheap) I bought 3 poster frames. I placed the fabric around the backer board and after figuring out a pattern that I loved, cut it and stretched it around the back. I laid it in the frame, tightened the back and Voila, easy art!

Thankfully these fit into my new house just right.

Cheap, I mean, inexpensive, art work for the house

So in the last house that we rented I had massive 2 story walls that needed something on them. They were all contractor white paint and boring. Lets be honest here, no one wants to spend a ton of money on a house you know you aren't going to be in for very long. So I got creative. I looked all over for something, anything, to cover that space! I could find large art pieces but they were hundreds of dollars or well, just plain ugly.

So, it was up to me! I was already thinking I was going to have to bite the bullet and buy a canvas and do my own art work. Then I went to Ross one day and found a vinyl tablecloth that I loved. hmmmm that could work. So after weighing all of options I decided it was durable enough to hang if I built a strong enough frame. Now I have watched enough Trading Spaces in my life to know that light weight wood= MDF so off to the lumber store I go. *side note, have you ever notice how nice men are to women in lumber stores? Its like they think we're lost little sheep or something but I digress... Picked up the MDF and talked said nice man into cutting them to size for me and went merry way. I showed my then 15 year old son who looked at me with a rather puzzled look on his face but knows better than to question me when I've done something like this. He and I sat down in the living room with the staple gun, some wood glue and a couple of nails and a hammer. We quickly discarded the hammer and nails and resorted to a drill and some screws. It wasn't pretty but we managed to build a frame. Then we laid it on the back of the table cloth, stapled the cloth as best we could and this was our final result. Total cost of project? Under $15 all included. Not bad for a space that was roughly 10 X 19

To the soldier I met last week

I have been struggling with how to write this all week. I returned to Denver last week from an amazing girls weekend full of fun and laughter and great music. I was still processing all of that and coming down from that emotional high when I was dropped back into my real life feet first and at full speed. Only this time I had a new perspective. I sat down today and finally wrote out what I had been coming to terms with since my trip. This is what changed my view.


As I was flying out of Dulles airport in Washington DC last week, I noticed several military members boarding the flight with me. Not unusual given the area that we were leaving. The plane was almost empty and the flight attendent went through the cabin offering the rest of first class seats to those in uniform. I struck up a friendly but brief conversation with the soldier in the aisle next to me. He declined the upgrade and let his fellow soldiers go in front of him. I encouraged him to go too but he stayed back. Soon we were in the air and I started mentally going through my list of things that must be done when I got home. I had been away with my girlfriends that weekend and I had a long ways to go before I got home. I knew I had a lot to do so I plugged in my Ipod and started making notes of what needed to happen and when. My mum was visiting, my daughter had a play that night and I was concerned I may not make it in time, my other daughter had a science fair that night and how was I going to juggle all of that.... my list was long and yet every so often I would look up at the soldier in the next aisle and he would smile at me. We talked very little, with me being consumed with all I had to do, but he was very nice and he had a peace about him that I couldnt place until much later.

Soon we landed and I offerred to let him go in front of me to catch up with his friends. He declined and said "ladies first ma'am". As we walked off the plane together I said "that was an easy flight, but my next one is a long one. How about you?" He just smiled and said "I'm heading to Iraq tonight Ma'am." I stopped in my tracks, all of a sudden ashamed by selfishness. I had missed a golden opportunity to talk with this young man, to learn about him, to thank him. I hugged him and said "go with God" he just smiled and walked away. I wondered what his to do list must have looked like in the last few weeks. What plans he had made and friends he wanted to see before he left. Then I thought about all the things he would be missing while he was gone, the Birthdays, the visits, the projects around the house. My list seemed pretty small compared to all of that.

So, to the soldier that I wish I had gotten to know, I am sorry. I want you to know that I have prayed for you every day since we met. I have thought about you many times in the last week, when my life seemed crazy and out of control. I thought about you and I remembered that all things considered, my life is pretty quiet and not nearly as stressful as I used to think it was.

I owe a lot of that to you and those with whom you serve. Thank you.