Oh where Oh where do I begin?

So……..where do I begin?  Things have been improving for me so much.  I feel like this big, heavy weight has lifted off of me and I feel like I can function and that I have a purpose and that I am being led in a direction that is exciting.  It all started this summer when my headaches became much less painful.  I still get them about 3 days a week, which was less than before, and the pain level is not as high so I can get rid of them much quicker.  This allowed me to be much more active this past summer and I was able to take my kids and go and do a lot of great things.

Then in August or September my dear friend Steph from Woodinville went to an Art Gallery and asked how I could get my work shown in there and one thing led to another and now I will be having my first gallery show July 1, 2011 @ 315 N.36th street Suite 201, Seattle, WA 98103 named Studio R, home of the Black Rapid Strap company.  I am so excited!!!

Next, I have been in contact with Partners Relief and Development and am hoping to go to Chiang Mai, Thailand this Winter to learn more about the work they do there to help the Karen refugees from Burma.  This has been so exciting for me!  I really have a strong desire in my heart to capture the strength and humanity of these people w/ my photography and also voice record their stories so that I can come back and share w/ whoever will listen about their terrible circumstances.

I want to use my gallery show as a platform to bring attention to the war crimes and totalitarian regime in Burma, and have all of the proceeds of my artwork go towards www.partnersworld.org .  I have sent in my application and am waiting for final authorization before I can book my flight!

Sometimes I just want to pinch myself, and I ask myself, “Is this really my life?”  I have so much joy & peace.  My suffering has greatly diminished and I walk with a bounce in my step and a smile on my face.  My friends and people around me notice a difference, so it’s not just my imagination, things are getting so much better!!!!

Stepping out in Faith that all things will be a go (for this trip) I am setting up a photobooth w/ hay bale, pumpkins and leaves @ my church’s Harvest Carnival .

Here are the details! I need to raise some money for my tickets, flights are really expensive this winter to go over there.

I give thanks to God for all he is doing in my life and all that He will continue to do and wait patiently for everything to come together with patience and understanding.

If anyone is so inclined, PRAY FOR ME!  I need it greatly!

 

 

So much has happened………

photo taken in Chiang Mai Thailand

So much has happened since my last post.  Christmas came and went marvelously.  I was able to host both sides of the family on Christmas Day, praise God for no migraine.  I had a 22 day stretch in November-December that was migraine free.  It was miraculous.  Now I am getting them 1-3x a week but I seem to be able to keep them under control with the medications I have.   Fortunately I don’t have to take as much reversal medicine as I had been in the past.

In mid January we took our middle child, Max, to Thailand.  We took his sister in 2007 and this year it was his turn.  I had my normal amount of migraines while I was on the trip but with the medication I had I didn’t miss out on anything!  I think that is so amazing and I am so greatful for it.

I took lots of pictures and am still in the process of working on them.  You can look @ my sets @ flickr.  Once I get them all done I will start blogging in detail about our trip.  God did so much in our hearts while we were there and we are thinking that we are going to embark on some radical changes in our household.  So I will stop for now, and update more later.

As for DBT, my class is now over and I have not been able to have contact with my instructor.  I feel very at peace with everything that is happening in my life and nothing is overwhelming me anymore.  Part of that is because the pain is under control, and the other part is the radical acceptance.  I feel like I can move forward in my life now and am  even excited about it!  I haven’t felt this way in years, almost a decade.  It is so refreshing.

I am excited to see what happens with our family in the next 4-5 mos, it could really be spectacular!

Unbelievable!

my brother and his family

I just can’t put into words what has been happening to me.  I don’t know how long it will stay, but I appreciate every good day I get.  I have not taken a migraine reversal medication in 15 days.  It is mind blowing to me.  I get to wake up everyday feeling great and lay my head on my pillow @ night feeling great.  I have not gotten this long of a stretch since 6 0r 7 years ago I think.

Right now the Depakote I am taking is working to stop my menstrual cycle which will impact my debilitating menstrual migraines.  I was due on the 23rd to start and no signs of it yet.  This is why my neurologist and I thought I would try taking it again, because in the past it stopped my period, but at that point I wasn’t otherwise stable w/ my Bipolar Disorder and needed my period to be stable.  I have Premenstrual Dysphoric Disorder or PMDD.  It’s a more severe form of PMS.  So in the past, my moods were not stable and the affect that the Depakote had on my hormones really aggrivated my PMDD, so I had to stop taking it.

This time around, my moods are really stable on Namenda, Prozac and Seroquel.  So we bravely thought we would try the Depakote and see what happened.  I went through many weeks and months adjusting to the heavy sedation of Depakote but have now found a great dosage that I can function on.  Also, I had just a mild level of pain everyday, and although I had received Botox before, we thought to give it a try again and see if it would take the final edge off.  I think it did!!!!!!!!!!

I’m not certain how many more days I will get like this, if it’s here to stay or if things will go back to the way they were.  All I know right now, is that I feel blessed and greatful and thankful for feeling as good as I do now.  It’s not something I take for granted.

So much to be Thankful About

Happy Thanksgiving

Today is the beginning of day 8 of no migraine.  I have not had this long of a run in probably 5 years.  I am not talking about that I have been taking no reversal medications, I mean absolutely feeling 100%.  For me, 100% means no pressure, dull pain, fogginess, etc.

It’s so important that I let the world know that I am thankful for this, that I appreciate it and don’t take it for granted.

Yesterday I found out that my DBT class would be ending abruptly.  There is a family emergency for my therapist/counselor, so we stopped it one week short.  That is o.k. though, I have learned so much and feel so much different and have a better mindset than when I started the class.  DBT (Dialectical Behavioral Therapy) is such a great program that I encourage ANYONE suffering from any type of a mental illness going through this course or at least purchasing Marsha Linehan’s workbook and going through it yourself.  Some of it is based on Zen (Buddhist) philosophy, but its concepts and practices are not religious or spiritual unless you want them to be.  I think that anyone, of any faith, can incorporate the skills she suggests such as mindfulness.

The biggest thing I think I took away from my course was radical acceptance.  Radical acceptance is when  you say, ok, this is really happening.  There are causes, this is the effect, and in that manner, it was meant to be.  Radical acceptance is not saying you like what is, just that you are not fighting against it.  It is what it is.  This concept has been life changing.  I have always felt like I had the right to be healthy and free from sickness and pain.  I’ve been angry, bitter, frustrated and confused.  It hasn’t been just a war within myself, but a war with God.  I’m not sure at what moment it happened, it was probably not one singular event, but I can now say that when I am suffering I do not judge it.  I do not say to myself that it is bad that pain is here.  I just accept it.  That doesn’t mean that I like it, want it or am resigned to its presence in my life.  It is just a calm place of being ok with what is happening inside of me.

I don’t know what the rest of today or even tomorrow may bring, but whatever it is, I know that I will accept it.

Practicing Mindfulness for Distress Tolerance

Today I really called upon my DBT skills.  I had an appointment w/ a lawyer to go over my social security disability hearing that’s coming up in December.  It gets me so anxious.  During the time frame that the SS department looks at I wasn’t actively seeking help for my migraines even though they were really bad.  So I don’t have a lot of documentation which is what they have to have.  Anyway, worrying about all of that and meeting the lawyer I was just feeling anxious so when I caught myself feeling that way I practiced on being mindful of my surroundings, which slowed my breathing.  It didn’t seem to help immediately, but after like 20 min when it was time to attend to a different activity I was able to do so, where in the past I would have just shut down.  The other skill I used was to focus on my breathing.  Today was a rough day but I’m really proud about how I got through it and am encouraged to keep trying these skills and try some new ones I haven’t tried yet.  My DBT class ends in two weeks.  I’m wondering if I’m ready to end or if I should cycle through again.  Guess I will have to talk to my counselor about that.

Feel Like I’m Functioning Again Today….FINALLY!!!!

I gave up on increasing my Depakote to the level my neuro wanted me to get to.  I was just too dang tired.  I couldn’t even function, just layed on the couch all day for day after day.  It was horrible, and that was with taking the majority of the dose @ bedtime.  Anyway, i backed off a half a pill last night and have felt like a million bucks today and have been up and moving all day long, getting things done.  It is like night and day.  I have a phone appointment coming up next week w/ the neuro and will talk to her about the side effects and such and see where she wants to go from here.  As we stand today, the good dose for me seems to be 500mg. @ a.m. & 625mg. @ p.m.

I think  my DBT counseling (Dialectical Behavioral Therapy) must be helping me, because even with how horrible I was feeling, and for so long, I had a neutral attitude toward how I was feeling (crappy).  In the past I would get angry or frustrated and wonder why this was happening to me.  But I have been calm and patient with myself during this time.  It just got to a point last night where I thought that the side effects were too strong, and waiting for my body adjust would take too long.  I can’t be non-functioning everyday, I just can’t.  Not if its preventable anway!!!

Just Plain Tired

Dominique, Sam, Max and Myah

I haven’t posted in days.  I just don’t feel good.  I increased the Depakote to 3 @ bedtime and two @ morning and I just feel exhausted.  I hope my body will eventually get used to it.  I’m supposed to eventually bet to 3@ bedtime and 3 @ morning but I just don’t know if I can handle that.

Yesterday and today so far are two pain free days, this is a good start.  I really don’t know het how much the Depakote is helping me.  All I do know is that I haven’t had to go to the hospital.  I guess I could say there’s been some progress, just not a lot.  The tiredness thing just sucks, i feel so worthless, but I try to remind myself that it’s not me, it’s the medication.  It’s still hard though.

Yup, today wasn’t so bad!

picture from the photo booth i set up @ the church harvest party

I had a great time at the Harvest Party @ our church last night.  I was a little nervous about the whole thing since I had never set up a photo backdrop w/ lighting in public before and had only used it @ home a few times.  I have a friend @ church with the same camera and she offered to help me and i quickly took her up on it.  I couldn’t have done it without her!!!!!!!!!  What a good team we are.

The Depakote I am taking for migraines makes my hands tremble horribly.  It is REALLY bad and REALLY noticeable, but way better than a migraine!  I didn’t have room to set up a tri-pod so Emily helped finish out the night and took some of the last pictures.  I think she took this one here.

Towards the end of the evening my stomache started hurting really bad and I had to leave early because I felt like I was going to get sick.  My husband and daughter packed up the photography gear for me and I sped home.  I did get sick, but after taking some anti-nausea medicine (Zofran) and eating some crackers I felt better, and I was fine today.  So I don’t really know what happened there……………very weird!!!

Today I worked on my Beth Moore Bible Study which we only have about 2 weeks left, and then I was so tired (my body is still adjusting to Depakote) that I went and took a nap.  I got up at noon and cleaned my bedroom and then started editing harvest party photos.  Tonight Sammy had a soccer game and then we had his award party @ Pie@Trio’s.  I got a salad so I can’t say how their pizza tastes!!

Today was a headache free day so I am documenting this one for the books!

Menstrual Migraines Suck

...gonna blast that migraine away....

It’s  Wednesday and on Monday I blogged that I was starting my menstrual migraines.  Well, I just got a baby migraine Monday night w/ spotting.  In that post I said I was really lucky, and I was.  In fact, yesterday, I had no migraine at all but what was weird is that the period never really materialized until bedtime.  Once again, I was lucky to have such a perfectly pain free day.  Today, however, was a different story.  I even dreamt in my sleep that I had given myself a DHE shot.  It was so weird, I woke up thinking I had taken care of my migraine but it was still there!  How weird is that?!!!

I had a friend ask me yesterday if the antinausea medicine (for migraine) made me sleepy.  I told her it was hardr to tell.  I just plain feel like crap for a while even after the headache has gone away sometimes, but feeling like crap is better than having a migraine!!!  Today I took DHE  and Zofran for nausea.

Where I’m at now is that my pain is gone but I am really super tired.  I will go make myself a cup of tea.  We are having a harvest party at our church tonight and yesterday I set up my backdrop which includes a black background with a hay bale, corn stalks and some pumpkins.  The kiddos can get their faces painted and/or go to a dress up station and get their pictures taken.  I am charging $8 for a 5×7.  $1 goes to printing and $7 goes to the bilingual K-12 school we are helping  to build in Chiang Mai Thailand.  I have never done anything like this before.  I am excited and nervous all at the same time.  I’ll be in great shape tonight as long as I continue to improve from where I am at now.

I Feel a Menstrual Migraine Coming On…….

i don't look this bad right now but this is me with a migraine.........

Well I’m feeling the oh so tiniest twinge of a migraine coming on.  I’m supposed to start my period today so I should have had a killer one yesterday but did not.  And today, up until now, has been great as well.  I’m going back and forth in my head over whether or not to give myself a (dihydroergotamine mesylate) DHE  shot.  Ok, in the time it takes to copy & paste my link for you to navigate the web and answer the question: What is DHE?, Its ramping right up.  No more decision making.  I’ll go stick myself when I’m done with this post.

However, this is NOTHING like what it could be.  Typically, this is what my menstrual migraines look like: day before &/or day of = very painful, very drug resistant migraine.  Then, everyday after that where I still have bleeding I will continue to have migraines.  Usually once the bleeding stops I will go back to an every 24-36 hour migraine cycle but a few times a year the migraines will continue for another week or two which is just flat out HELL.

The going back and forth in my head of how to treat my symptoms is just like someone is playing a really unfair mind game on me.  You can’t use a medication too much or it will stop working &/or there’s the re-bound effect.  And there’s the always, “maybe it really won’t surface full blown and I can get away with not taking anything” (which this is never the case but for some deranged reason my brain continues to go to that hopeful place).

Since the past 5 days have been pain free its much easier to make a decision about treating it quickly and aggressively.  If I had been having 3 or more this week like usual then there would be more pressure I would put on myself in my decision making.

I’m amazed that after 12 days of migraine that once I started the 6 day course of prednisone + Botox that I could have 5 perfect days in a row.  Like I said yesterday, it hasn’t happened in a few months.  What a relief.

So I am going to kick this baby one’s butt and hopefully nothing will emerge when I open my eyes in the morning……things have been going good, is it just luck or are we finally onto something good here?  My brain is really turning to mush now and I can’t think so I better wrap this thing up……..more tomorrow……….