Thursday, September 26, 2013

The way our country is headed...

So today at work, I had to tell one of our patients that the medication that she's been on for 10 years is no longer covered via her "government-funded insurance" company. Earlier this week, her pharmacy called to notify me that her insurance company had denied her refill request.  I contacted the company to see the problem and was told that the patients doctor would need to submit proof that a "less expensive" medication couldn't be used.
So after consulting with the doctor, I submitted documentation and the patients records over the last 10 years showing that different medications have been tried with poor results and that a dramatic improvement was seen when the patient started on this, more expensive, medication.
But it didn't matter that this medication has worked for her all this time... It didn't matter that I provided the company with PROOF and a SIGNED statement from her DOCTOR. All that mattered is that the medication is expensive and someone with NO medical degree just decided she no longer needs it. Again, the claim was denied and this insurance company refused to cover this prescription. Can you tell how upset I am???
It makes me feel awfully uneasy to know that our health is in the hands of people with no medical background or expertise. It makes me uneasy to wonder if I'll start being denied from medications prescribed to me by my doctors...

Sunday, September 15, 2013

Unless you've lived it, then shut up.

Aaahhhhh... Headaches have waken me up the past 3 nights. I've had to take Fiorcet at work this week to keep on going, and I've maxed out on the Relpax for the week. (I can only take it 3 days out of the week.) BUT I can honestly say that I've pushed through. I worked, I took my daughter on a 'date' to the movies, and I went shopping with my family. However, just because I've not been passed out on the couch like I wanted to be, does not mean that I haven't hurt. I can honestly say that I'm sick and tired of being sick and tired.
And no one understands. I'm constantly being pushed to do more. CONSTANTLY. I can only imagine how frustrating it must be for me to "always feel bad" for my family,  and yet hearing that only adds to my frustration. I'm sorry I "always feel bad". But I do. Not sleeping for 3 nights straight because of PAIN sucks. And I didn't ask for it.
But unless you've actually been there, you just don't understand. My husband is fit as a fiddle. He's a marathon runner and honestly feels like my cure will be if I run and get healthier. He's anti-medicine. He's tired of physicians and hospitals. He just wants me to cure myself by "getting those endorphins pumping". Oh if only that was the answer! Unfortunately, unless God miraculously heals me, I just don't feel that there IS a cure. (Of course I'm not allowed to say that either because I'm just being too negative. As if living with feeling this way for 6 years wouldn't make me feel a little negative.)
If I get upset and cry, I just hear "Oh God..." Don't get me wrong, I know that living with me, with someone with a chronic illness, must be very hard. But it's also VERY hard for me, the person with the chronic illness.
And one another note, the constant pushing does not make me want to do more. Honestly, it makes me want to give up. I'd like to find a rock, climb under it, and just sleep forever.
So the moral to this story, unless you've been there, unless you've lived it, then shut up. The end.

Thursday, September 12, 2013

Link found in obesity and chronic migraines

Well, had "the headache" yesterday. Even had to take a Fiorecet at work, which I rarely EVER do. Normally the codeine in it makes me a little sleepy, but yesterday it just seemed to take the edge off. By the time I made it home, my head hurt so back that I was dizzy and opening my eyes hurt. Ended up taking a Relpax and climbing in bed. Wondering if it was just time for a headache, or if it was the exercise from the day before??? But surely not (the exercise)... If that was a trigger, wouldn't I have felt bad while, or shortly after, the run?
Anyway, I got through the day. This morning I still have a mild headache. It's like a caution light warning me that it wouldn't take much to set me into another full fledged migraine. The funny thing is, once I get to work, somehow I'm able to get through the day. Being busy probably distracts me. My head doesn't stop hurting, but as long as I keep busy and don't settle down, I can make it. The MD that I work for even had to run me out of there yesterday. I had enough work that I could have easily stayed another hour!
Huh. The news just said that "obese people are 81% more likely to suffer from chronic migraines, but more research is needed to see if weight loss decreases symptoms". Just more reason for me to keep running! :)

Tuesday, September 10, 2013

Running, running, running

Ran 3 miles again today with my husband. My running is really improving and I can see where I might actually enjoy it. No strider today, nor did I throw up! YIPPEE!!! My average time was 16:15 a mile and my heart rate average was 166. Headache is only now about a 4!
Since being off of the Topamax, my mind seems clearer. For as long as I can remember, I've felt like I was thinking through a fog. Sometimes I would stutter or even say incorrect words. I've always described it as feeling "dumb". Those things seem to be happening less often, which is certainly a confidence booster! I've also been actually missing things I used to enjoy like reading and crafts. I haven't had any interest in either of these things in what feels like years! So maybe the depression is better too? Doc might have been right about the Topamax causing it! And to think... I just thought I was nuts.
Before switching from Topamax to Depakote, I would average a strong/severe migraine at least 5 days out of 7. I also would wake up at least 3 nights a week from the pain. I have noticed that I'm sleeping more often through the night, and my headaches might have become less frequent. It is a little tough to tell though because I've had so much nausea lately. One new thing is that I seem to dream a lot more than before. Last night I dreamt about snakes under the hood of the car. Strange, huh? Tornados, snakes... I read something about dream interpretation that said those 2 things were signs of feeling out of control or overwhelmed. If that's the case, I should have been dreaming those dreams ages ago!
So the moral to today's story is that I once again see a light at the end of the tunnel. Maybe running and Depakote is gonna be the tricks to give me some quality of life?!?

Sunday, September 8, 2013

Grace and Tornadoes

Sometimes I have wondered if I stay sick because of something I have, or have not, done. At this point, I am too weary to have faith. I guess I feel that if I haven't been healed at this point, I never will be. The money I owe to doctors and hospitals is overwhelming, never mind what I pay each month for medicines. I am mentally, emotionally, spiritually, and physically exhausted and the 'fight' that I once had left a long time ago.
But today I thought about God's grace. I thought of how it is not contingent on me. He is good no matter how weary I am. He is good if I'm a 'fighter' and when I feel overwhelmed. He is good just because that is who He is. I don't have to earn His grace and I don't have to worry about losing it.
God created me and knew just what I could tolerate. He knows that I am only a human and He knew ages ago that after 6 years of pain and no relief in sight, I would be weak, weary, and faithless.  Another thing that I remembered is that even though I can't hear Him... even though I feel as if I've been walking in the wilderness forever... my prayers are NOT bouncing off the sky. I believe with everything I have left that He is a tear collector.
On another note, last night I dreamt about tornadoes. I have once heard that dreaming of tornadoes means that you feel you have lost control. How fitting is that! I have no control over my health and how I feel. I am terrified to commit to anything because I don't know how I'll feel hour to hour, much less days in advance. I feel as if I have no control over any of my dreams, or goals, or plans. Shoot, I don't even have a personality anymore!

Friday, September 6, 2013

My Latest (Pretty Boring Actually)

The work week has come to an end. My knees are still pretty painful from running last week and I felt certain that by now they would be better. I read where painful joints is a side effect from the Depakote that I now take... But then, maybe I'm just fat and out of shape? Hummm...
My headaches are less intense and seem to be less frequent.  However, I was supposed to increase my Depakote 100 MG from daily to twice a day. I have had problems with pretty bad nausea/vomiting and think that I may be having a tough time adjusting??? In any event, the nausea has resulted in some noncompliance on my part.
Anyway, that's the latest here. Sometimes I wish I still had someone to talk to that's been where I'm at. All of the brain tumor websites I find seem to be dedicated to children... Amazing how something that happened nearly 6 years ago still has such a grip on me.

Monday, September 2, 2013

Mourning the loss of me

We just got home from spending Labor Day weekend at the beach. Used to, I loved nothing more than the beach... The feeling of the sun warming my skin, the sound of the waves crashing on the beach, the soft powdery sand between my toes, sounds of children screaking in delight, etc. However, like I said, that was used to...
Now... well, now as much as I try to enjoy what used to be my paradise, it just leaves me sick and miserable. It doesn't take long for the bright sunlight to be blinding, my skin burns and I feel so hot that I think I'm going to hurl any second, the sounds that I once loved ring in my head, and instead of enjoying myself I'm just miserable.
I try as hard as I can to have fun, to BE fun for my family, but I must accept that the place that was once my paradise is no longer my favorite spot on earth.
Perhaps I should try a mountain trip???