9/6 - You don't realize what you have ....

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until it's gone. It's so true. You don't truly see things as blessings until it is yanked away from you and only then can you see it from a different perspective. I used to get bored if I didn't have enough things to do during the day. I used to run around like crazy and then wonder why I packed my day so full. Those were the days. Then I had kids. Everything changed. Not because of the kids per say, but because my body flipped out during my first pregnancy. I got mono at 9 weeks and then followed by a virus that caused havoc on my body (and kept me near the potty). I was either pregnant or breast feeding for a little over 3 yrs. I was chasing around 2 very small kids (one with colic) who had lots of ear infections (read doctor appointments) and Brad was usually gone. I was working 2 part-time jobs at the beginning but couldn't handle all the traveling and time away so just started doing teaching (I was the Wellness Specialist before). I was tired. Very tired.

Time went on and I just figured life with his was just extremely exhausting. It wasn't until a little over a year ago that I really got the feeling that I shouldn't be this tired. When we got to Alabama last year things continued to get worse. I was completely worn out. I wanted to do part-time daycare with the boys but quickly realized that wasn't an option because I was too tired to care for them the way I wanted to. I started seeing doctors and trying to figure out what was wrong. I had to take at least one nap, sometimes 2 naps a day because I was so tired. My constant workout schedule was reduced to lucky if I have the energy to do anything. A workout no longer gave me energy and made me feel good. It completely drained me and I was useless for the rest of the day. I even drove 3 hrs away to see a Naturopath doctor to get input about things
My symptoms:

• EXTREME fatigue
• always being cold
• tons of hair falling out
• my concentration and memory were getting bad
• unexplained weight gain
• lowered blood pressure

At first they thought it was my thyroid which really seemed to fit. Blood work revealed things to be within normal limits (but barely). There was one time when the test indicated hypothyroidism but they did a repeat test and it squeaked back up barely. My primary care then ordered an MRI of my brain to check my pituitary for a tumor. It came back clear. I suddenly got pretty severe ulcerative colitis and I was being treated for that. An endocrinologist wanted to check my adrenal glands and did a cortisol test which I had a horrible reaction to and passed out. I was being treated for adrenal insufficiency without having confirmation of it but it was worth trying. It brought up my energy slightly but not to a point where I could function normally. I was sent to a kidney doctor for having protein in my urine and while it came back ok that day and she couldn't find anything wrong. she definitely thought there was something wrong. She asked me a bunch of questions and then said I should get a sleep study.

Armed with this information, my primary care sent me to neurologist who agreed. I did a first sleep study and that test revealed I was borderline hypersomnia. After some discussion with the nurse at the neurology office, she realized I did my first study while on two medications than can greatly alter the test results. I went off the medications and waited 3 weeks and did another study. This time the study came back and they classified me as hypersomnia. The first sleep test I feel asleep in my daytime naps in about 8min 30 sec and in the second one it was about 3 min and 30 sec. I was diagnosed with idiopathic hypersomnia and prescribe a traditional medication to help. The medicine definitely helped with keeping me awake for the first few weeks but I was also still very fatigued. I was on the medication for about a month and then moved back to Florida. Another week or two passed and I was completely exhausted again. I mean I could nap all day exhausted (although I can't really nap because the medicine I take keeps me awake, but I'm still exhausted which is actually painful. I'm so tired but can't sleep during the day). I go through a bunch of referrals and doctors here and finally come to a doctor that says something is wrong with my body and we need to figure it out. About 2 weeks ago I had a spinal tap and the fluid was send to Stanford University for analysis which will take a while. I also had tons of bloodwork done. A few days later I had another sleep study (night and day) and this time I fell asleep in an average 2 min 30 seconds and hit REM sleep on all of naps. In my night study I also hit REM sleep in about 40min (it should be about 90 min) as well. The combination of these things along with my extreme tiredness has given the doctor a different diagnosis: Narcolepsy without cataplexy. Narcolepsy!! No I don't fall asleep while anyone is talking to me but if you stop talking and I know it's okay to fall asleep I certainly will. He changed my medication dosage and it hasn't done anything. I am still completely exhausted. I can barely take care of the boys at this point. I feel like it takes all the energy I have to just get them fed and off to school. The afternoon is even worse and I feel so lucky if I have actually given them a dinner that would be considered a meal.

This week, my doctor decided to put me on a medication which could significantly change things. It is a medication that has changed many lives and has allowed people to live a normal life again. This medication will also alter things for me and the boys. You can have no alcohol with this medication which doesn't matter for me since I don't drink. You also cannot have any food 2 hr prior to taking it which means no more food after 8pm. This will be a challenge because I like my 8:30/9:00 little snack to keep my belly full during the night. This medication is only made and distributed through one company the program is tightly controlled because of the potentness of it. I start the medication tomorrow and I am hopeful but nervous. Part of me still thinks it is something about my thyroid that is wrong but another part of me is so desperate for the ability to stay awake that I will do/try anything. It seems so much safer for me to try a small dose of synthroid or something rather than this crazy black listed drug but then again I'm not a doctor ... well I am but not the medical kind :) It just seems like I got pregnant and then my body started fighting against itself and hasn't stopped.

5 yrs ago I would never thought that I would be someone who is so exhausted I can barely function (and sometimes not function). I feel like I can't even keep up with life. I can't dream of doing anything past 7pm because I'm crawling to bed myself at that time. My mind is so foggy that it takes me twice as long to do anything. At least those days that I used to run around like crazy, I had the energy for it. I was worn out at the end but that was it. These days I couldn't physically do it; my body wouldn't let me "go" for that long.

I'm posting this so it will be in the blog. Yes the pictures I take often make things appear so great and fun but .... I am struggling to be the mom I want to be. I'm so exhausted by the time Aiden gets home that I just want to curl up on the bed or couch. I don't (usually) but I'm so exhausted that my brain isn't working and the simplest tasks seem so hard. I have barely enough energy to get Eli and once I get him home I'm so exhausted. They have been gone all day so they just want to play and spend time with me. I've missed interacting with them all day but my body just can't function at the level needed to keep up with them. There are many times I'm so exhausted after making dinner that I just sit at the table with my dinner in front of me because it requires too much energy to have to eat. I know it sounds crazy. The tv and i-pad babysitters are showing up more and more because I'm too tired. The disappointed faces of little boys who just want to play with me but I am just too tired are devastating to me. So I am praying for a treatment that works; something that can let me be an active part of my boys lives, be a wife, and just feel human again. Your prayers are appreciated. This past 1.5 yrs have been the most difficult I have experienced. I have such a small amount of energy and to-do lists that are huge and I still haven't figured out a way to let go of all the things that I didn't do. With all the exercise I have done and healthy eating (for the most part), I would never have thought my health would be in this condition. Today I am thankful for legs that work and get me around, arms to hugs my boys, eyes to see God's beautiful creations, a heart that works and loves.