This might be working?

Something might actually be working (that's me sounding hopeful)! I complete the Medrol dose pack today and I've been diligent at running. I've been drinking more water, and other than continuously waking up at 4:00AM each day, I am feeling better. Also, I am now completely off of Topamax now. My head's more clear and the headaches aren't nearly as intense. Maybe this is it?!?

 

Yesterday we ran/walked 3 miles again like we did Monday. I could tell a difference in my breathing (no more strider here!) and I didn't throw up even once. LOL My husband said that he could tell a huge difference. However, now my knees are killing me. I propped them up last night and put ice on them, but when I rolled over in my sleep their ache would wake me.

Let's see if this road to improvement keeps it up!

PRICELESS

The number of times I puked up lactic acid in the middle of the road? 5
The number of times my breathing was so bad that I had stridor? 2
The number of people that came out of the house because they could hear me panting/gasping? 2
The number of times I cried? That entire last half mile
The pain scale of my head? 5
Knowing that I ran/walked 3 miles yesterday... Priceless :)

Is there no grace? Is there no mercy?

I've started taking my 9th grader to school each morning. She likes to call it "mommy/daughter" time. I am just thrilled that she not only wants me to, but that I've finally found SOME kind of mothering that I can do.

 

In any event, I was asking her why she doesn't spend time with the youth group at church. When we make it to church, which unfortunately is rare lately, she never wants to go to Sunday School with the other teens. She never goes, almost crying if I try pushing her into going to 'Friday Night Extremes', etc. Her answers just broke my heart.

 

It's one thing for me, a 30 year old adult, to have thoughts and feelings of negativity about/toward people that my health (or lack thereof) conditions have brought on, but it was quite another to drive along listening to my little girl poor her heart out about church people. While I have known that my family has been (and is currently) affected by my daily struggles, I guess I just sometimes forget.

 

Some of the examples that poured out of her where the comments that she hears about the church she misses.  She said she hears things like, "Oh wow! You've finally decided to grace us with your presence?" or "You know as Christians, it's good and godly to gather together frequently, not once a blue moon." Her telling me this angered me. For starters, she's 14 years old, so it's not as if she has any control over where she goes and when. And then the funniest thing to me is that no one has offered to pick my children up for us when we have made it no secret how we are struggling.  Early on, we did reach out to people asking them every week for rides for my children so they didn't miss church, but then having to always ask left me feeling a bit like a nuisance. Never has anyone in the youth department ever offered to assist my daughter with transportation. Ever. And yet somehow, they think it's okay to condemn her?

 

There are other times, when I'm really sick or hospitalized (and it seems like some may have forgotten that I've spent 2 weeks in the hospital in the last 9 months), that she won't leave my side. You must remember, she was 8 years old one day when I put her on the bus and then she didn't see me again for weeks and weeks. All she was told was that I was very sick. Now I know after talking to her, that she'd overheard adults whispered talks and heard that I could even die. For a couple years of her life, it was just the two of us. We are buddy's and she feels a responsibility to me. If she feels that not coming to church on Sunday, but laying next to me while I sleep or cry, and reading Psalm 23 to me is important, then so be it.

 

I tried reminding her what I always try to remind myself: Church and God are NOT the same.  I told Lexi that Jesus would have encouraged our church to help people like us with things that can be difficult at times, like getting my kids back and forth to church, or cleaning the house, or helping with meals. But one thing I know for sure, Jesus would never fuss at us when we did make it to church for not being there the Sunday before because I was laying in bed crying and writhing in pain.

 

God is so full of mercy and grace that we cannot even fathom it all... And yet I think that many, if not most, CHURCH people, are totally lacking.

Whirlwind of a weekend

Well, it's certainly been one whirlwind of a weekend!

 

Friday morning I saw my 'new' neurologist since last being in the hospital back in July. Used to, anytime that I had a neuro appointment to go to I would feel hopeful, like maybe THIS time we'd find a way to bring my life back to some normalcy. However, this time I was just annoyed. The appointment had been rescheduled by the doctor's office twice. Originally when I scheduled it, I made sure that my doctor would not be working in the office at the time of the appointment so that no other nurse in our office would have to cover for me. But because they kept rescheduling me, I ended up with an appointment time when my doctor was in so another co-worker did have to work with him. I also have reached a point where I just feel defeated.  I feel like this is my life and I just have to learn how to deal with having a migraine, a strong to severe migraine, 4-6 days a week.

 

But when I finally saw my "head" doc, she actually LISTENED to me and asked me all sorts of questions and then fully examined me (something my old neuro doc NEVER did).  This resulted in me breaking down and crying and carrying on.  I totally made a fool out of myself and embarrassed myself, but instantly she asked if I'd ever thought my sudden mood swings could me a result of medication. Back in July, they had raised my Topamax dose. I've been on Topamax for over 5 years, but apparently a rare, yet severe, side effect is mood swings. Thinking about it now, I can see where I have become more withdrawn and depressed, but I thought it was just feelings of defeat over yet again finding no answers to curing or at least improving my quality of life. So, the plan in that I'm being weaned totally off the Topamax and started on Depakote. Since obviously the Midrin and migrainal spray aren't doing anything for me, she's given me Relpax to replace them. And I have to do a stupid steroid dose pack. Ugh.

 

My neuro doc also talked to me about the possibility of starting Botox treatments. Apparently they are shown to be very effective for the treatment of migraines because they relax the muscles in the head that are inflamed causing the migraines in the first place. Downsides are that these treatments are every 3 months and the obvious fact that it's injecting a foreign substance in your head... A lot to think about.

 

So Saturday morning, my husband's attempt of a cure commenced.  Together, we went to our first 3 mile run\walk with a group in our community. He's an avid runner, runs marathons even, and is convinced that exercise is going to "cure" me. We'll see. I struggled during the run, but he stayed by my side and somehow I got through it.

 

Saturday afternoon I went to a jewelry party at the home of an old nursing school friend. It was great to see some old friends, especially since I rarely ever leave my house anymore.

 

But by the time I got home, a severe migraine hit me. Can't tell if it's the withdrawal from the Topamax, or the running, or the fatigue\dehydration from the run. Until next time...

Still trying to find a remedy!

Of course there's prayer, and I've tried many different medicines (still on some), I've tried doctors - even changing doctors, I've been hospitalized, I've tried lumbar taps and drains, I've tried special diets, I've tried losing 40 pounds, I've tried massages, but now I'm trying exercise. I'm pretty hesitant because I not only don't feel well but I'm also afraid that it will be a trigger. But my husband is a marathon runner and has convinced me to join a team of run/walkers that is beginning to slowly train for a marathon/half marathon that will be in March 2014. Yesterday was my second 2 mile WALK with him. I must admit, although our brisk pace left me very out of breath and sweaty, I didn't die and my head was okay - no worse than when I started. We'll see.

 

Tomorrow I have my first appointment since I got out of the hospital with my new neurologist. Ho-hum. What a life! (; Speaking of, my mom saw my old neurologist earlier this week. The one that came in my hospital room this last time acting all nutty and yelling at me. He was singing a new tune and telling her to let me know that I could come back to him anytime... :/ Uhm...

 

In any event, school for my kids has just started and my 9th grader had to write an introductory paper in her drama class to present in front of the class. She read it to me and it just made my heart break. The theme of her paper was how she was a sensitive person and why she felt that she was that way. Because of me... Because she lived with a brain tumor surviving mom and a mom with chronic migraines that was in\out of the hospital. She didn't get detailed but mentioned learning how to sacrifice so her mom could get medicine or pay for medical treatment. When she read it to me, it took everything I could not to cry. I know all the things she's talking about. Last fall, she was supposed to get braces, but in September, the week we had booked a condo for the beach by the way, I was put in the hospital because my intracranial pressure was extremely high. Her braces money went to my head. And instead of her mom and dad taking her and her brother to the beach, she went with her grandma and a friend. Then this year her youth group was going on a big trip, but I was paying the expensive co-pay for medicines and ended up hospitalized again ruining her chance of getting to go. 

 

This is how my children know me. Sickly. I HATE THAT! And when I feel well, I will do everything I can to make good memories with them to replace these bad ones. I will play silly games on the computer with my 8 yr old and I will talk boys with my 14 yr old. We'll spontaneously go to the beach and laugh to loud when I'm up to it.

 

There is one thing having a stupid illness has taught me and that's how to appreciate life!

Choices, choices

Today is Sunday. In my previous life, I would be getting ready to go to church and yelling out frantic orders to my family to ensure that they were all ready in time to leave. Unfortunately, I've had to learn all my migraine "triggers" and knowing them, I've had to make some hard choices.

 

Last Sunday I woke up feeling great. I didn't have a headache at all, but the longer I sat through church, the worse it felt until suddenly I felt it come crushing down on me and I finally had to just run outside and sit outside in the car in the air conditioning wide open all alone in the silence. Of course then I just felt a big pity party for myself, and I couldn't tell you what church was about.

 

The triggers present at church are all my top three migraine triggers and since I'm still so unstable, it's just as dangerous of a place for me as a theme park.  For starters it's bright in there.  My home is dark, I wear sunglasses in stores. In fact, the only time I don't wear my sunglasses is at work, and some times that's rather tough. I've thought about wearing my sunglasses at church, and my church family would understand, but visitors would think it was strange. Secondly is ODORS. I just can't handle scents anymore, and church is certainly the wrong place for that! It seems that everyone thinks that Sunday's are the time to bathe in their perfume/cologne, and then I go to a very 'huggy' church so I am constantly bombarded by everyone's different scents intertwining. Lastly, my church is very loud. Everything is loud. The music is loud. The speakers are loud. The announcements are loud. The preaching is loud. Everyone claps. It's just loud. I used to love it... But now... Well, now those claps, or the drum beats just stay in my head and I can't hear anything else. And all I can do is smell all those smells and the world starts to spin and get black but bright at the same time. And my stomach starts to turn. And I just want to lay my head down and hide... And what I used to love, I now hate.

 

Ugh.

 

My family, my CHILDREN, have begged and begged me to 'hang out' with them today. Tough choice. I could try to go to church, even though I already woke up with a headache today... Or I could 'hang out' with my family. Really, it's a no brainer, I just want to be able to do it all. Who doesn't? I'm only 30. I want to be a GOOD mom, and wife, and go to church, and work, and maybe even go back to school, and start running, and have friends, and do whatever else I want to do. I don't want to hear that I can't. I always tell my kids not to ever say that they can't. I HATE hearing that. Such a lame excuse to me. And yet... I can't. UGH!!!!!!!

Searching for that silver lining (;

So yesterday was rough at work and sadly today was no better. You spend too much time at work to be miserable, and to add insult to injury, a horrible embarrassing female problem occurred resulting in me needing to rush home to change clothes. :/ AWFUL! Nothing like that has ever happened to me before in my 30 years of living, and I WAS prepared... but it just wasn't enough, I guess. Ugh. Needless to say, I cried like a baby all the way home and called my mom.

 

But as rough as the last couple days may have been, I have to remember that I get to come home each day to kids that thrive off getting smiles out of me and fight over my attention. My hubby baby's me, and today slips and tells me of a present that will be here for me by the end of the week. I have a good marriage, we like each other, and we're friends. My kids do well in school, they are well behaved and good. My sweet Stella is such a lovely little lap dog that somehow knows exactly how I'm feeling, when.

 

My life could be a lot worse. Bad days are just that, bad days, but not a bad life. I have a good life, and one that I am grateful for. And like my Mama always said, every cloud has a silver lining.

It's lonely at the top...

I've often heard that... that it's lonely at the top. Guess it's true? I've been made 'Team Leader' at work. It doesn't mean anything really, but yesterday I held the first meeting with all our other nurses just to brainstorm on what we could do to make our office better. I thought it was a good thing. I thought it's what I was supposed to do. I was NOT prepared for the barrage of pitchforks that I was greeted with after the fact...

 

My team of nurses weren't the ones holding the pitchforks, it was more like other staff members giving us the silent treatment. Apparently our words were misconstrued to that we were pointing fingers at others stating that other departments were not doing there jobs. *sigh* I suddenly feel as if I am back in high school, literally! One of these disgruntled co-workers deleted me from her Facebook last night!

 

You know, I was just trying to do a GOOD thing. A positive thing. But I guess a little bit of change was enough to stir up an ants nest and boy have I been bit! I am about as excited to go in to work today as I would be to face a firing squad.

 

Do I keep trying to find/fix whatever is not right? Do I keep trying to offer solutions? Or do I tuck my tail between my legs and just hide in a corner? Well, if you know me... I'm sure you know the answer to that! (; In the meantime, I'm off to lick my wounds!

Recently, I've been feeling like 'World's Worst Mom'. I keep expecting a trophy or some medal or with this horrid title... Perfect example, here it is, a Friday night, kid's first day of school was today.  The house is dark, quiet, and cold. Signs that a migraine in present. I am alone on the couch, as always. The kids are gone with their dad. Like always. *sigh*

 

What a thief, these headaches. My life consists of work and then the comfort of my dark quiet home. I very rarely ever venture out. Ever. Ever. My husband knows all the neighborhood kids. He knows their parents. He plays outside with our son and his friends. Rides bikes with him. Plays ball with him. sometimes, he'll pull up from work and a group of neighborhood kids come running up to greet him wanting to play with him! Me? Well, I can be found keeping the couch comfy gritting my teeth if they ring the doorbell because that ring stays in my head forever. *sigh*

 

I miss church pretty regularly - not the best example I'd like to set for my kids. Thankfully, my husband, the perfect dad, is always there to take them. Do I sound envious? I am, a little... But only because I wish I was more like him. I wish I felt like running around outside. Jumping on the trampoline. Riding a bike.

 

When I was "well" was I a more 'involved' mom? Hummm???

 

So anyway, I've been beating myself up. A lot. Not a hard thing for me to do. I've always been hard on myself about everything anyway. But then I realized that I might not be so bad after all.

 

Last weekend, I picked my daughter up from spending a week with my grandparents out of state in their retirement community. Everyone in their little community just raved about what wonderful manners my teenager has and how kind and helpful she is. I get compliments like that about my kids all the time, and I think that says something about how they are raised. Also, whenever my daughter, who is now 14, is going through a trial or trouble, or if someone she cares about is, she'll always find Bible scriptures for them. That is also something that I am proud of, and something that I have taught her.

 

As for my son, there are computer games that the two of us play together. I've taught him how to play silly games like 'Bejeweled' and 'Family Feud' and every night we play a game or two together, in the safety of the couch. We cuddle and watch movies together when I'm having particularly bad days. I make it a point to make a big deal when action movies like 'Batman' or 'Spiderman' come out.

 

When I do feel well, I know it's rare for us all, so I make the most of it by doing spontaneous things. Once I wore a fake HUGE mustache through Wal-Mart. I thought my family was going to pee on themselves they laughed so hard. Another time I just randomly started up a Nerf gun war with them. Or I've just woke up and decided we should go to the beach.

 

So... I may not be PERFECT... But I don't think I deserve that stupid medal after all. (;