Chronic Migraine Warrior

Chronic Migraine Warrior

Friday, July 29, 2011

To Medicate, or Not to Medicate

To medicate, or not to medicate, that is the question.

I HATE the medicine "game." It's not fun trying to figure out (especially in my migraine-fogged brain) things like... If I can take my abortive medicine up to 3 days a week: what is a "week," and when can I take my next dose? Is a week Sunday through Saturday? A rolling 7-day period of time?

It's so aggravating to have to think about this stuff, and extremely saddening to look at your health calendar and realize that either "spin" you put on it (Sun thru Sat, or rolling 7 days), you've already maxed out for the week and have to just try to survive without it.

After such an intense migraine attack last night, I woke up feeling on the edge of another one. I've tried to push through today, but I can feel it worsening pretty quickly. I don't know how much more of the intense, mind-melting, blinding pain I can handle. I looked at my migraine diary / health calendar, and whether or not I've maxed out on my meds is in the gray-area... so, I took the meds anyway. I've also tried a few different programs on my neurostimulator to try to stop the migraine attack progress, but it doesn't seem to be helping (I'll have to remember to mention that to my doctor on Monday, when I go in).

So, it looks like another evening of taking it easy / Netflix. I'm so glad that we have Netflix, even if it's sometimes only for some kind of white noise... since my stupid migraines can actually worsen in complete silence... or darkness...

Here's hoping for some relief...

Monday, July 18, 2011

Finding Strength & Preoccupation

Patients For A Moment (PFAM) is a patient-centered blog carnival to build connections within the community of people who blog about illness, disease, and disability. Tonja, at Pink Doberman, is hosting this edition of the PFAM blog carnival. The topic is two-fold:
Part 1: Outside of your disability, illness, condition, or situation, what do you focus on, where do you find the strength to keep going and nourish your soul?
Part 2: What do you occupy your mind, your hands, and your time doing outside of dealing with your disability, illness, condition, or situation?
Part 1: Finding Strength

Since my car accident, I have tried very hard to keep my focus on my health - physical, emotional, spiritual.

"Strength does not come from physical capacity. It comes from an indomitable will" (Mahatma Gandhi
Finding the strength to keep going began as an up and down battle (and it still can be, at times). But, I find my strength in the Lord. I know that He will provide and care for me. 
"I can do all things through Christ who strengthens me" (Philippians 4:13)  

"The Lord is my strength and my shield; my heart trusts in Him, and he helps me. My heart leaps for joy, and with my song I praise Him" (Psalm 28:7)
I also find strength and nourishment for my soul through writing. I know I haven't been able to journal and/or blog as much as I'd like to, but it still helps. My family has provided a great deal of support and strength through my trials.  And, my online friends have become a much bigger part of my life than I ever expected - they are there for me during the good times and the bad. 

Part 2: Occupying My Mind (Preoccupation)

As far as occupying myself with things other than my chronic pain... I've had trouble with this. I enjoy spending time with my husband - talking, walking, watching movies, playing games, cooking, etc... Also, I really enjoy visiting with my family; which I'll be able to do more now, since we're back in Texas.

I love reading and writing, but I've had difficulty doing a lot of either because of the chronic migraines and cognitive/processing difficulties. I also enjoy scrapbooking, but I haven't really been able to do a whole lot of that (it can be very difficult to concentrate, and the creative side of my mind doesn't always work well).

I've been watching a lot of things on Netflix (well, sometimes it's really only on in the background); which has been a nice distraction, especially when I'm trying to get through a migraine attack. It's nice to be able to watch things that I normally may never have even known about, and extra-great to have it commercial-free.

I'm currently helping my sister plan her wedding. I enjoy being able to help her with such a special start to her married life. It can be stressful, but I love designing her invitations/stationary, helping with flowers, etc... and it's so great being able to spend time with her!


More Scripture ~ Strength

"The Lord is my strength and song, and He has become my salvation; He is my God, and I will praise Him; my father's God, and I will exalt Him" (Exodus 15:2)

"God is my strength and power: and He maketh my way perfect" (2 Samuel 22:33)

"If anyone speaks, they should do so as one who speaks the very words of God. If anyone serves, they should do so with the strength God provides, so that in all things God may be praised through Jesus Christ. To Him be the glory and the power for ever and ever. Amen" (1 Peter 4:11)

"Let the words of my mouth and the meditation of my heart be acceptable in Your sight, O Lord, my strength and my Redeemer" (Psalm 19:14)

"The Lord is my light and my salvation -- whom shall I fear? The Lord is the stronghold of my life -- of whom shall I be afraid?" (Psalm 27:1) 

"The salvation of the righteous comes from the Lord; He is their stronghold in time of trouble" (Psalm 37:39) 

www.worshipphotos.com
"God is our refuge and stregth, an ever-present help in trouble" (Psalm 46:1 

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever" (Psalm 73:26)

Saturday, July 16, 2011

An Update for a Rough Week

I've had a very rough week. I started having some new, strange symptoms, after I ate dinner Monday night. I started having severe pain in my right shoulder, chest, and back... the pain was so severe that I had trouble moving, breathing, coughing, etc...

While it improved some, the following day was still very painful. It has slowly gotten better, but it's still painful.

I'm also having pain just below the sternum, and often have severe abdominal pain. I found out in January 2009 that I have a small hiatal hernia and gastritis. So, I called my GI doctor, but he can't see me until the end of August.

I set up an appointment with my primary care physician for Thursday, but the pain was still so bad that I moved the appointment up, so I saw him on Wednesday. We did an EKG to make sure my heart is okay (with acute chest pain, pain and numbness in my arm, etc...). It came back fine... thank God!

We also took some blood to check my kidneys, liver, etc... Everything came back normal (kidneys, liver, electrolytes, and all of the stuff checked in the comprehensive metabolic panel). By the way, I have to brag on myself a little. Even though I'm still losing weight, my calcium and protein (I mention these because I was deficient in them both, when I was in the ER last September) are both very good. :-) 

I had a gall bladder ultrasound yesterday. My doctor called late that afternoon and said that the results are normal. So, I'm supposed to continue taking the daily Omeprazole that he started me on the other day, and monitor the pain.

I think what jump-started all of this mess (we believe it's a combination of the hiatal hernia and gastritis) is all of the stress lately (moving, husband getting a job, temporarily living with his parents, getting used to everything here, etc...), as well as my continuing weight-loss.
I was 120lbs at the time of my accident (October 2008), and have been up and down (mostly down) since then. I was steady at 110 lbs (the end of January through mid-March), then I was down to 105.5lbs by the end of April, we stopped the Topamax beginning/middle of May, but I just keep losing weight... At the end of June, I was 104.5 lbs, and the first symptoms of the hernia pain were the day after that weighing. The horrible hernia pain started July 11, and I weighed 102.5lbs on the 13th.
I've been taking so many medications over the past few years, that it's just tearing my body up (and NOT helping the things they were meant to treat!). I really wish I didn't have to deal with ANOTHER source of PAIN. I just don't have the strength right now. 

I think that once we get moved and everything starts to level off, that things will begin improving a bit. I really need to figure out how to gain some weight because I think that's contributing to A LOT of the new symptoms, as well as worsening old ones. I just don't know how to eat more / gain the weight... it seems an impossible task with all of the chest/shoulder pain + migraine pain + nausea...

On a POSITIVE note, I went to my neurostimulator doctor this week. I got my stimulator rebalanced/reprogrammed (and added a few more programs), which should help. My doctor wants to see me every 2-3 weeks (now that I'm living closer), in order to try to get the stimulator helping me more. He hasn't given up yet. :-) I really hope we figure out a way to better manage the migraines.

Friday, July 15, 2011

Expectations and Relationships

I'm sorry that I haven't posted in a while. I've had some really rough migraines, and we're trying to get adjusted to Jeremy's new job (and everything that comes with starting a job... like enrolling in insurance and retirement programs, moving, etc...).

We're staying with Jeremy's parents, until we move into our apartment in a few weeks. So, it really doesn't feel like we've moved... it still feels like a visit (a long visit, but still a visit). I don't think living in Texas again is going to really hit, until we get settled into our own apartment.

I know I've written about expectations before (Expectations and Recovery), but they continually come up... especially in light of us moving back home. I am BEYOND thrilled that we're going to be living closer to family. BUT, I don't think that they (this is mainly an extended family issue) all understand that just because we live close, doesn't mean that we're suddenly going to make it to ALL the family get-togethers. I'm learning how to say, "NO" to things that I either am UNABLE to go to OR that I don't really want to go to (it's a balancing thing).

Most people don't seem to understand how DIFFICULT it is to have to really pick and choose what to spend your energy on. It's not like I used to be... "however much I can fit into the day... plus some." I have a very limited amount of energy (some days it might be higher / lower), and I have to choose to do things that I really NEED to do... some days, I'm happy to have the energy to be able to brush my teeth, eat, and sleep. I know that sounds pitiful... but, some days, that's all I have in me.

I talked with a friend the other day, who said to me, "Keep in touch, okay? You have a really bad habit of not." It really struck a nerve with me. I said, "I know" (then there was an awkward pause, like I was supposed to apologize). It's not even worth it to try to explain stuff to most people. It's NOT a habit, it's just how things are right now. And, I'm NOT going to apologize! It's taken me a LONG time to BEGIN to accept the limitations I now have, and I'm determined to try my best to NOT let others make me feel guilty for stuff like this (or for having to cancel plans, etc...). Some days, it's SUPER-hard to be firm about it, but I have to... for ME.

Also, relationships work BOTH ways. I don't have a whole lot going on, most of the time... "yep, I'm still constantly in pain." Plus, I simply DON'T have the energy to do a whole lot of "keeping in touch." My family is the most important, and I try to make sure they know what's going on. Other than that, it's gotta just be sporadic, especially if you refuse to converse with me online through email (this allows me to respond whenever I feel up to it, and to be able to think through what I'm saying) or come to me where I am (I don't drive much now... and I can't, if I have to take my migraine meds).

I'm sorry for the rant... but, it just bothers me sometimes, when people can be so... I don't even know the word... insensitive?
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