Resolutions

One of my 2011 resolutions is to blog more. As much as I want to be a good, consistent blogger, I'm having trouble figuring out what to talk about. What could possibly be going on in my life that is so interesting that the rest of the world (or even just the handful of people that read my blog) would want to hear about it? Here is where another 2011 resolution comes in: to think better of myself and in general be more positive. With that thought in mind, why wouldn't the world want to know about my life? How is whatever I may be doing any less important or "blog-worthy" than what anyone else is doing?

I've spent the last 7 days in Carlinville at my mom's house. Since our basement in St. Louis is being re-tuckpointed, which is a very loud and dirty process, I decided that the cat and I would take a mini-vacation. Each day this week I engaged in at least one wedding planning activity from arranging tables and chairs at the reception hall to timing steps down the aisle at the courthouse. It has become quite clear just how much there is to do! It has also become quite clear how excited I am not just to get married, but to get married to Jason.

Friday night was dinner out with my mom and brothers followed by drinks uptown. I went to the Anchor where I had a chance to congratulate the new owners on their business adventure. From there, I met up with my youngest brother at another bar. There I had the opportunity to catch up with an old friend and try cherry UV Vodka--both were enjoyable. However, I had another revelation: I can no longer keep up with 26-year-olds nor do I want to! Saturday, while paying dearly for Friday night's activities with a horrible headache, I had my first Skype experience. I attended my cousin-in-law's baby shower which was held via computer since she was snowed in in Massachusetts. Thank goodness for technology!

As I get ready to post this entry to my blog, I have some reservations as I know it is not my best work. Far from it, in fact. But I keep pointing out to myself two things. 1.) that I wrote something which is better than writing nothing even if it's not perfect and 2.) that it is not another depressing account of how bleak my medical situation is. Those types of posts are not to be the norm anymore--another 2011 resolution.

I Think, I Feel, I Am

It was suggested to me by a close friend that I am losing myself in my illness. That is to say that I have begun to let it define me. I believe her statement is accurate. One of the reasons for the extended time lapse between blog posts is that it seems the only things I have to write about, while honest and very true, are also very depressing. So, I spent the last several weeks thinking about who I am besides "sick Jess." Here is some of what I came up with:


I think...

I have the best parents ever;

happiness is mostly self-induced;

it's possible to fall in love many times throughout one's life and that doing so prepares one for the ultimate "love" commitment;

all people should be treated equal, in every sense of the word;

ice cream is an excellent source of comfort;

pets increase the quality of one's life immeasurably and that my cat is the best cat ever (but Mr. Wilson is a close second);

all the decisions I've made over the last 31 years, right or wrong, good or bad, have made me who I am today and I would not change 99% of them;

too much.



I feel...

great love for my friends and family;

blessed to have food to eat, clothes (and shoes!) to wear, and a roof over my head;

like a diva when I wear high heels;

that laughing to the point of tears can be very healthy and a lot of fun;

guilty when I catch myself in a state of self-pity about my situation;

often overwhelmed.



I am...

thankful for the unconditional love and support I receive from my friends and family;

eager, but not necessarily easy, to please;

a big fan of post-it notes;

a Christian who happens to be struggling with my faith and with the ability to let God work in my life;

madly in love with my fiance and greatly looking forward to not only our wedding day but life as a married couple;

a good listener;

working on being a better communicator;

still mourning the loss of my grandparents--all four of the six that have gone to be with God;

obsessed with 311;

determined to be the best wife and mother I can be.

Fear and Loathing in St. Louis

Things are tough right now. This "illness," if you want to call it that, has taken over every aspect of my life. It has turned me into someone I don't like very much, someone I never was before. It's one thing to hate what is happening to you, but a much worse thing to hate, to loathe, who you are.

What started as a headache that wouldn't go away has turned in to so much more. The pain is no longer limited to my head but grips my entire body and mind with a force like no other. I believe it is this pain that has changed me.

I used to be silly and while I was very intelligent, I sometimes fit the dumb blonde stereotype. I used to be hopelessly romantic, fantasizing about the perfect marriage and family I would one day have. I used to be productive. In college I earned a degree in Biology and Chemistry while working three jobs, playing soccer, volunteering and having the time of my life.

Now the laugh-til-you-cry-and-wheeze sessions are few and far between. Instead of feeling passion and excitement, I have feelings of overwhelming rage and despair. It took me all week to find a videographer for our wedding and today, everything fell apart because I couldn't decide what kind of dishes I want to register for.

What I hate even more about this new me is how others are affected. My poor but amazing fiance walks on egg shells because he never knows what mood I'm going to be in, or when it's going to change. My body hurts so bad that is almost impossible to snuggle or get a hug. The fact that I am so physically and emotionally unavailable, to anyone, makes me cry. I'm also very critical and unaccepting of change. The ability to sit back, relax, and let things happen is lost on me.

Then there is the fear. The fear that I won't get better, that I will always be crabby and sad, and that I will end up alone...or worse. I'm actually afraid to go to bed because I never know how I'm going to feel the next day. I'm afraid to make any sort of commitment because there are pretty good odds that I won't be able to keep it. And I'm afraid to share my feelings with my loved ones because I don't want to overwhelm or scare them. I'm a closed book and I hate it.

I know I'm relatively young and still have several baby-making years ahead of me but I'm afraid that I'll never be well enough to take care of a child. That I'll never be able to be a mother, to carry a child, something I so desperately want. If I can't be a mom, I don't want to be here.

Ironically, I'm also very afraid of getting better. And I'm scared that this fear is holding me back. What if all of...this...is all in my head? Even though I go to more doctor's appointments in a week than some people do in a lifetime, what if I'm psychologically causing the pain? Getting better means re-entering the real world, finding a job, keeping a job, and giving up my disability. What happens if I declare that I'm cured, start over, and end up with a never-ending headache again? What other employer is going to pay me two thirds of my salary until age 67 if I become unable to work?

So, yes, I'm scared. I currently live in a sad world and am desperately afraid it will never change. The only thing keeping me going is the small hope that it will.

Just What the Doctor Ordered

Actually, what the doctor ordered is sleep. And I'm not getting any! I know there are plenty of you mom's out there not getting any either, but at least you have a cute bundle of joy to cuddle. My cat won't even get up and hang out with me!

I participated in a sleep study about a month ago which gave, I thought, promising results. It showed that even though I'm asleep (that's back when I could sleep, obviously), my brain isn't. I'm not getting any deep sleep (stage 3 and 4) which are the stages when the brain rejuvenates itself, when all the fuel (hormones, neurotransmitters like serotonin and noradrenaline, and a lot of other really important stuff) is produced. This lack of deep sleep partially explains why I'm so tired ALL the time, why I am in so much pain, and why I have so much mental fog.

The short of it is that all day and all night, my brain runs on high. Literally. Almost all my brain activity is beta and high beta frequencies. That means my brain is constantly trying to process...everything. What has happened as a result of this constant processing is my brain has functionally lost the ability to relax. Because it never runs on the low wave frequencies, alpha and delta, it's always working.

This constant "work" by my brain is a result of over-stimulation which, in this case, equals pain. My brain has been so overwhelmed with pain signals (which turn those high waves on) that that's all it knows. If all the pain was gone tomorrow, my brain would not know what do to or how to function. It would not believe that the pain was not there. Weird, I know.

So, in order to help get better, more productive (or less productive, depending on how you look at it) sleep, I went to a sleep specialist. His first approach was medicine with the idea being that if we can get some serotonin and noradrenaline in my brain, it will figure out how to make more while I'm asleep. Kinda of like seeding the reaction, for you chemistry buffs out there. But now I can't even fall asleep! I've got all this medicine that's supposed to cause drowsiness, ease pain and slow me down. It doesn't even phase me. I've tried other things, too, like a glass of red wine before bed or a bowl of cereal (Honey Nut Cheerios used to put me right to sleep!), a hot shower and still, no sleep.

Now I'm tired mentally and physically and wound up like a very tight spring about to snap. My muscles are so tight they spasm. Sometimes uncontrollably. It's only been two weeks since I saw the sleep doctor so I'm not giving up yet. But can't a girl get a break?!? I could really use one. And some sleep.

The Patient Patient

As someone seeking extensive medical treatment, I do a lot of waiting. I wait for test results, I wait on insurance authorizations and reimbursements, I wait to see new doctors, I wait for treatments and therapies to work and I'm waiting to get better. Because I believe that God has a plan that requires all this waiting, I try to sit back and let things happen in their own time. But I'm ready already!!

This morning I waited (very patiently I must say since I had a level 4 (out of 5) migraine) on my primary care physician who I see about every 4-6 weeks. While he is a good doctor, he could use a refresher course in professionalism. A regular follow-up appointment can take 3 hours and that's only counting 30 minutes of doctor-patient time, at most! Today I was in the exam room by 8:02 for my 8:00 appointment which was the first appointment of the day. And then I waited. And waited. I finally heard the doctor ARRIVE at 8:25. Once he came in to the room, I had to wait a good ten minutes for him to review my file before any conversation took place. I understand that doctors are very busy and often get off-schedule and I actually appreciate a doctor that sticks around to answer all my questions. But what is the point of scheduling an 8 o'clock appointment if the actual start time is 8:30? Why should I be on time and organized if the doctor is not (and he never is!)? Why do I give him (and others) my time and money, only to wait for them to get around to treating me?

Being sick (or I guess "not well" in my case) is expensive to say the least. I'm blessed to have worked for a company that provides me with long term disability for as long as I need it and offers great medical coverage. However, keeping up with insurance--who owes who and how much--is a full time job. It seems logical that a procedure or appointment that is 100% "eligible" when asking ahead of time should be easily billed and payed in a timely manner afterward. What I have learned is that NOTHING is logical when it comes to insurance. I'm literally waiting on several thousand dollars of reimbursement. Just last week I got an explanation of benefits that was not paid because the doctor (a different one this time) did not put the patient ID number on any of the bills. So, while I wait for the bills to get corrected, resubmitted and paid, that part of my treatment is on hold. I'm worried that this break will not only delay my recovery but actually cause me to regress. All I can do is wait and see.

They say that patience is a virtue and I would like to think that it's one I possess. I've literally watched years go by while I "wait" to get better. I schedule my entire life around when I can see the right doctor or get that one test that may have the answer. My patience is dwindling, that's obvious, but what choice do I have...except to wait?

My Cup Runneth Over

Lately I've been very caught up in how horrible I feel physically and how mentally and emotionally draining it is. I hurt on the outside which makes me hurt on the inside (or possibly vice versa) and that seems to be all I can focus on. However, a number of things happened yesterday that allowed me to take a step back from my drama and notice the good things in my life.

My cousin is overseas lending a hand in the war on terror. As far as being involved in a war goes, he has it pretty good. His living situation is comfortable (no sleeping in the sand), he is getting paid well and he's climbing the military ladder for the benefit of his wife and their future children. There is a rather large drawback to this new position, though, and that is that his wife of three and a half years could not move there with him. She can visit, but only for a limited amount of time. Yesterday his wife made a comment on facebook saying she would be able to see her husband in exactly two months. Two months! That's a very long time to be away from the one you love the most. I know they are handling it very well--they are an experienced military couple--but I was sad for her. Sad that she has to wait another two months just to get a hug from her husband. It made me realize how lucky I am. I get to see the man I love everyday and tell him so--in person. I will no longer take that for granted.

There is what I guess is a reality show called "Too Fat For 15." Somehow I managed to catch bits and pieces of two episodes yesterday. Boy, did it humble me. My heart went out to the children and their struggle, not only with their weight but with the shame, humiliation and guilt they have. At 31, I'm 10 pounds heavier than I was when I was 15 and many days that really bothers me. However, I will never again label myself as fat when my jeans are a little too tight because to do so would be an insult to these children who are literally close to death due to their obesity. Despite what I'm going through with my headaches, I'm pretty far away from them actually killing me. I am thankful for what good health I do have.

Although I was raised in the church and continued to attend all through college, I have not been to a church service where I really felt comfortable in a long time, the exception being when I have gone to church back home. All the health “stuff” I’ve been dealing with lately has really made me question my faith. I’ve been looking for something to…lean on, I guess. Several weeks ago, as I was driving to the pharmacy, I passed a Methodist church called “The Gathering.” I noticed they offered 6 pm services and was immediately interested. After checking out the website, I decided to give the church a try. I went by myself the following Sunday and was hooked. I found myself looking forward the next service, then the next. I’ve gone every Sunday since.

They say that for every negative thought, twenty positive thoughts are needed to offset it. I think that holds true for everything; it’s easy to let life get the best of us. Counting your blessings is always a good idea. You will probably find that your list is much longer than you ever thought. I know I did.

Dire Straights

I'm frustrated. Extremely. I can't express in words the level of my frustration. Those around me can sort of get a feel for it--mostly because it gets projected towards them--however, no one but me actually knows how deep it goes. I'm frustrated for many reasons but mostly, almost exclusively, because I am not getting better. In fact, things are getting worse. Much worse! Throughout the course of this "let's fix the migraines" mission, things have spiraled out of control. My life is almost un-livable and that, my friends, is NOT an exaggeration.

During the first year and a half to two years, my "condition" made what I would consider to be a slow decline. First, my headaches began lasting longer, staying for weeks instead of days. Then I started missing more and more work because I just could not function. It was in August of '08 that I was hospitalized for a 30 day headache. At that point I decided I wasn't going to play this game anymore. I was bound and determined to find the cause of my headaches and put a stop to them.

A few months later, in October of 2008 (almost two years ago!), I took a three month leave of absence from my job and began the investigation. In March of 2009, I spent 10 days in a head pain hospital in Michigan. I left with 15 different daily prescription medications, a hefty credit card bill (thank you insurance for changing your mind 6 days in) and....(sigh)...a headache. Just 6 weeks after returning to work from my hospital stay, I had to admit to myself that I could no longer keep up with my job and my life. Hence the beginning of long term disability .

For the last 4-6 months, it seems that my "condition" has been declining at a much faster rate. I have lost the ability to remember simple things, like the names of people I've known my entire life or streets I've been driving on regularly for the last 9 years. Along with the memory loss has come the inability to focus on any one thing at a time, which makes driving very difficult (and dangerous!) as well as the inability to sit still. I literally move around in bed for a good twenty minutes adjusting the blankets and pillows until I can finally fall asleep! I've also developed a drastically different personality. One that includes constant tears, feelings of rage and thoughts of...well, you know. It's almost guaranteed that at least one day a week will be spent in bed in pain with all scheduled appointments canceled. My close friends and family have also noticed these changes--another indicator that things are not improving.

Let's see if I can recall all the diagnoses and conditions that my doctors have used to describe my current state just in the last month. Chronic daily headaches, transformed migraines, abdominal migraines, fibromyalgia, cervicalgia, irritable bowl syndrome, candida, hiatal hernia, cervical disc herniation and degeneration, oxidative stress, copper poisoning, heavy metal toxicity, alpha-asymmetry, hyper-coherence, depression, anxiety, collagen-vascular inflammatory disease, temperomandibular joint disorder, and a dislocated jaw. I may be missing one or two (or six) but that pretty much sums it up.

So, I'm frustrated. I'm frustrated because all my time, energy and money seem to be going down the drain. I'm frustrated that I can't keep commitments. I'm frustrated by the fact that no one has any answers or, more importantly, solutions. I'm frustrated at the person I have become and really don't like. I'm frustrated because I want to do things! I want to go on camping trips and other adventures with my fiance. I want to be able to keep my commitments and not have to worry about if I'm going to need a cool dark room to retreat to. I want to plan my wedding and enjoy it. I want to do the walk of life.