if today was a battle, i'm a winner

If today was a battle, I'm a winner. Typically, this would be a migraine day for me but wahoo, I was perfect all day. (Only 2 hrs. left in it!)

I have had half the migraines in this cycle so far that I would normally have and half the pain. This smells like success to me.

Today I went to church, took my earplugs and WORE THEM!! I even sold @ least 6 calendars. That was great. Then we went to my brother-in-law's for my nephew Vinh's 6th birthday. My sister-in-law, who is Vietnamese, is a fabulous cook. My BIL BBQ'd pork loin steaks, we had rice and a wonderful salad. Her parents were there and brothers, and a cousin. Lots of kids and Vietnamese talk. It's great to be the minority sometimes and have the feeling of being an outsider as you have no idea what the heck anyone is talking about. More people should have that experience in their lives. We English speaking American's are not the only ones on the planet you know!!!

Then we came home for an hour and let the dog out before going to a Thailand meeting @ a local restaraunt. I can't believe we only have 6 weeks or so left. That is just amazing to me. And, I am not as fearful about going since I have a few decent weeks under my belt and no uncontrolable pain as of present. I talked with a woman whose husband is leading out trip. She lives over there and has health problems. She goes to a very reputable doctor and I've decided that if I were to get miserable there, I would seek healthcare. Thailand has wonderful healthcare @ an extremely cheap price, so that shouldn't be a problem.

It's amazing that a month ago it seemed unfathomable for me to go and enjoy myself and now, it definitely seems in reach.

can i have a little help please?

Right now as I sit here eating my scrambled egg dinner (I couldn't bring myself to eat Chinese Food @ our Thailand meeting for fear of pain) I think I may have had my question answered that I threw across the sky this morning. Perhaps it didn't fall on deaf ears.... "can I have a little help please?" *I was actually hopeful when I said that.

It was a beautiful morning for walking. It had just gotten light out and the fog was just hanging low across the fields near where I walk and onto the tops of the trees. lovely! Even the ducks greeted me this morning and walked along with me for a while. They were my buddies!

And as I walked I was thinking about my worsening headaches of course, because it seems that lately it's about all I think about. It occured to me that my Lamictal was increased from 100mg. to 15omg. in early October (turns out Oct. 4th actually). That's about the time my "month from hell" started.

Then, I realized that the next dosage increase came Sept. 25th, and immediately, the next day in fact, I ended up getting IV medications and the next night landed in the E.R. The rest you are familiary with from the previous posts in the last week. This dosage increase was from 150mg. to 200mg.

Could there be a link between my worsening headaches and the Lamictal? It would be terrible if there was. It has helped me such a great deal with my moods (not counting the anxiety during menstruation and high pain levels). But overall, my husband admits I seem more loving, as in caring and nicer to be around.

But HARK! The headaches most definitely have gotten worse after each increase....

I braved church today. I took earplugs and did alright because I was feeling great before I left. We sold a few calendars this morning, about 5, and that is better than nothing.

After church my friend came and talked to me. She recently went on Lamictal and said her dose was 200mg. The interesting thing though, is she's had daily headaches since starting the medication. The other day she even had a migraine and she says she's never had one before.

I FREAKED! I had just made this correlation a few hours ago, and here she was confirming it w/out me even bringing it up!

When I got home I called the pharmacy and asked them about side effects. He said that yes, headache could be a side effect. So, although I don't know for sure, I e-mailed my PA and told him about my concern and what I've been noticing. Fortunately, all my trips to the doctor for IV meds are in my chart so it will be easy for him to substantiate that. Also, if he has more questions or needs more information, I can direct him to this blog.

It sounds crazy, but I'm so excited even though I was quite fearful at first. There are other mood stabilizer/migraine meds I can go on and this means that the increased frequency isn't a permanent thing, just due to a reaction with the medication.

The other day I asked myself the question: What kind of twisted life lesson am I supposed to learn from all this?

I think I've learned a few things in the last month.

1) that I am capable of going to the doctor or hospital when miserable, asking for help, and getting it

2) that I can e-mail my doctor and he will e-mail back and even order pain control for me

3) that I have lots of friends who love me and care about me and want to help me, especially with the children

4) that my husband wants to help me, hurts when I hurt and would do anything to help me get better

5) that IV magnesium DOES NOT work for me and even makes me feel worse

6) that sometimes I need extra aleve with DHE injections of IV's, and that if you inject yourself too close to a nerve your muscles will spaz out

7) that the throbbing pain pulsing through my neck was from borderline high blood pressure

8) that when I'm menstruating, along with super high pain, I tend to get very anxious and agitated. by asking for help, I can get medication that will keep me safe during this time

9) that there usually is a cause, explanation or a reason for what's happening to me, even if the answers are a long time in coming

10) that once pushed to the limit, I will do anything and give up anything (in this case a variety of foods) in order to be proactive in feeling better.

So, all in all, the help hasn't come yet. I'm hoping to hear a response back tomorrow, and if I haven't by late afternoon I will call my PA's advice line or leave a message for him on his voicemail. However, he seems to be exceptionally speedy and helpful with his responses, he may just have a backlog of messages from being out of the office for a week.

Tomorrow is a new day, and I will take it as it comes and deal with it the best I can.

Satisfied

Today was not a perfect day, but I'm so satisfied with it. I woke up with my symptoms being irritability (not terrible but there) and sensitivity to noise. Is this an aura? Have to find out about that.

Sent the kids off to school and went walking. Gosh, it was really raining but I better get used to it. As Winter is 1/4 of the way here, it's always warmer when it rains. And here, it rains a lot. So I have a plan, I bought an obnoxius looking rain slicker and a dorky hat but it will work. Even so, today my pant legs got wet. But the fresh air felt good on my face. When I am feeling this way I don't do well when it's stuffy and always want cold air on my face, so it was perfect.

My pain didn't get any worse so I went to the grocery store. It's dangerous to go when I'm not perfect because sometimes I'll get worse. But at the same time, I can't wait around because I'll never go. Besides, I was waiting for payday and we were out of so many things. As soon as the money hit the account I was walking down the grocery aisles.

I could have saved the shopping for the hubs, but I've decided to go on a massive elimination diet. It is so worth any sacrifice to even 1/2 my pain days and try to avoid I.V. treatment. Don't get me wrong, it's helpful but not easy. It's not the needle or the I.V. itself, it's how the drugs make you feel. Besides, pain @ the level it takes to get me there is no picnic. So, I wanted to get some things to help me feel like I have something to eat. I even found some cookies that have just a trace of soy which is one of my biggo offenders. (don't ask me how I'll avoid this in Thailand....)

Got home from the grocery store and felt great. Think it took me a little too long to eat lunch though. Although I did have an unripe banana and Koala rice bar for a snack @ 11:30. Had to make my Vietnamese rice paper rolls for lunch though. Maybe I'll post the recipe if anyone comments or e-mails and is interested. Pretty dang tastey and quite different from things we normally eat here....us caucasin americans.

I felt a bit more pressure after lunch and the pain went to a 2. But the weird thing was how much my thinking shut down. I just thought it did when it got to a 3 or a 4 but I think it's one of the symptoms in general. I just took it easy the rest of the day, used tiger balm a couple of times, iced once, stayed in a dark room but did watch television. Just kicked back.

It is so totally rare that when I start off like this that I stay @ this level. Makes me wonder if it was just decreasing the sugar, wheat, yeast, etc. that I was sort of withdrawling from. It's not just a piece of cake going off those things. Anyway, I am SO SATISFIED. I have been waiting for a day like this for at least a year. Maybe longer. Sometimes my pain will just stay @ a 3 all day, but this is even an improvement on that.

I am determined to follow through on this elimination plan and I won't even call it a diet. More of a life change. I've done it before but added stuff back. And it was hard to tell what was bothering me. Within a couple of months I'll know if it helps and then I will KEEP DOING IT. It's worth the sacrifice to be different because I'm different anyway....

Oh, and it must be emphasized that I didn't take any medicine today. I sure hope I can get to @ least Monday before I need frovatriptan because the goal is that I only treat 2 migraines/headaches a week.

Some Interesting Quote and Food For Thought...

My grade school/high school/migraine/ chronic pain friend Steph sent me http://www.nwcn.com/sharedcontent/health/stories/101706cckkHEALTHfibromyalgia.4aaae4d9.htmltonight. It's a story about a woman with Fibromyalgia, but there's a quote in the story that I really could relate to.

It's a short, interesting story. One of the things it touches on is people not understanding, the mood disorders it causes or is related to, and most importantly, the realness of the condition regardless of whether or not people understand the suffering of those that are afflicted with chronic pain.

"Almost everything in medicine can be measured or tested or read from an x-ray. But pain remains elusive. There's nothing to go on but the word of the sufferer that something hurts. No dial or readout can tell how much." (Bill Marevl/The Dallas Morning News)

*If you are praying for me, 1) pray for my kids and my husband that they won't be angry and resent what's happening 2) pray for my trip to Thailand Jan. 8-18 that my doctors will let me go and that I will have plenty of pain management techniques in place so that I don't end up in the hospital over there 3)pray for endurance when things get bad that I will remember the good things to live for and to remember that "this too shall pass..."

*If you are in chronic pain I pray that you are encouraged to know that you are not alone, for peace in the midst of trials, for hope that things will get better and patience to keep you going until they do.

Last Night There Was a Freakin' Baby Kicking Around in my Leg....

Geesh! It was a great day yesterday, but in the evening, around 7:30, my left temple started to hurt. It wasn't but 30 min. and it was ramping up. Since it's still technically a menstrual migraine I decided to do the DHE injection and not let it get very far out of control...to the point where it wouldn't subside w/out a lot of drugs!

Like last time, first I took the compazine and waited 20 min. I got the syringe ready before my thinking diminished anymore and i wouldn't screw it up like last Thursday.

This time I put it in my right thigh and made sure I was extremely relaxed in that muscle, hoping that my leg wouldn't hurt so bad and for so long like it did on Monday.

It didn't hurt when the medicine was going in, but as soon as I pulled the syringe out my leg started to hurt. Man, that's the weirdest thing. Last night I could have used a pair of crutches, it would have been easier to get around.

I layed down and iced the site and pretty soon the muscle started twitching. Then, it started twitching all up and down the top part of my thigh. It felt like there was a baby inside kicking around in my leg.

I was a little nervous about it because I have started the beta blocker and all, and I can't see what's going on in there. I took 2 aleve to help with the migraine, the pain in my leg, and was hoping that it would help the jumpiness in my muscle. But, just to make sure, we called the Advice Nurse and she said it would be gone by the morning and that I had probably nicked or gotten closer to nicking a nerve. That made sense to me so I didn't worry about it. Within 2 -2 1/2 hours after the injection my migraine pain was gone, and within another hour my leg stopped hurting so I could walk on it. Also, this time I had no pain in my back and chest which had concerned me on Monday. So, all in all, pretty successful.

I did, however, wake up @ 2 a.m. and was still up @ 3. And, I felt wide awake, like it was morning or something. I decided that with just getting over the migraine that losing sleep would probably not help things any. I took 1 Ativan (anti-anxiety) to see if it would help me sleep and probably within a 1/2 hr. I was back in dreamy land.

My concern now, is that my menstrual cycle doesn't seem to be over yet. My DHE perscription says that the injections are for 2-3 x a month. I'm not counting the first one I did since I am positive I didn't have any medicine in it. So that makes 2x so far. But, since I just went off the Levlen (oral b.c. pill for menstrual migraine) it could take a while to get back on my regular cycle. All I'm supposed to be treating myself w/ is Aleve w/ either DHE or Frovatriptan, and those are to be used 2x week. I'm not worried about the 2x week so much right now because he said there'd be bad weeks and with the menstrual action going on, I'm definitely in that week. It's just that if the bleeding continues and I have to do one more injection in the next couple of days, I will pretty much be out of options of how I can help myself here and stay w/in my doctor's orders.

I would just e-mail him about this but he won't be back in the office for 5 more days. I will definitely need to contact him then. I could leave a message with one of his partners, but when I did that last week I never got a call back.

I don't want to annoy the people who are trying to help me (i.e. shoot my help in the foot) but at the same time I need to stay within the parameters that the PA gave me. I have a lot of questions because I have more than 2x a week, so what am I supposed to do on the other days I get one? If it's just pressure @ a 3-4 I can pretty much get by w/ staying home, using ice and heat, not doing any housework and using tiger balm and/or salonpas, peppermint oil. But, if it's the menstrual type, the ones that start up fast and feel more burning, then I can't not treat these. I know he knows that too and doesn't want to leave me hanging, I just didn't take the time to get clarification on how to attack these.

I think he was thinking that I would get IV magnesium sulfate in these in between circumstances. But, we didn't know that 1: I would have to go 40 min. to over an hour away 2. each time I get a treatment the doctor has to call it in and o.k. it first 3. the first time I tried it it didn't help.

I think I can make it until monday though. I really hope. Including today, it's just 5 days away. I cannot predict what will happen in 5 days but I'm sure even though it could be difficult that I can make it until then.

Thank God I'm feeling better today though. Shelley picked me up this morning in her new Honda Element and I went to Starbucks w/ my other friend Susan and their friend Cindy. It's a small thing, but was so nice to have a little girl time. When I got home I started a fire in my woodstove so it's nice and toasty down there. I got 2 new books yesterday that the PA wanted me to read, so think I will take my TAZO Green Tea down there, curl up and start reading "50 Ways to Control Migraines" by Ceabert J. Griffith, N.D., P.A.-C.

2 great day, wahoo!

Thanks to all of you who have been praying for me. I had a fabulous day on Halloween and was able to go to tse and max-ay's chaotic classrooms for their parties, get in a short walk and make all the rounds for the kids' trick-or-treating.

I am so thankful and greatful that I got to do so. I know the kids feel ripped off a lot of the time....and they are.

It broke my heart when Shelley told me what max-ay said to her in her car the other day:

max-ay: where are you guys going trick-or-treating at? (their dad was sick and i told them if i couldn't take them out that Shelley would.)

shelley: we're going to the street of screams at the mall. that's where we always go. it's really fun.

max-ay: can i go trick-or-treating with you guys? my mom doesn't have any energy. she never has any energy. she doesn't get to do stuff with us.

shelley: well max-ay, your mom gets a lot of migraines doesn't she. she always wants to do things with you. let's hope she can go, but if she can't then i will take you with me, ok?

*I think what max-ay meant by energy is that when I am hurting my thinking shuts down and in order to take care of myself, I lay around, I mean, who wouldn't. Usually it's 3x a week that I get one, but the last month has been brutal, almost daily. And my kids know that.

About a week and a half ago on a Sunday when I was feeling good, the boys had P and C over as well as Super Star's little brothers. Then, when Super Star's parents came by, we invited them to stay for dinner because I had cooked up a prime rib, so we had plenty of food.

*tse made a comment to his dad @ bed time: I didn't know mom was feeling so good today.

(I don't remember the last time we had people over for dinner. The hubs really misses that and it's one of the things that he feels ripped off about. We have the gift of hospitality and we love to have people over. But seriously, no friends have come to dinner for at least 6 months, at least..)

Anyway, off of my pity party. Yesterday was fabulous, today was fabulous. Besides getting the Halloween pics all edited I even got a little housework done. wahoo!

Also, tonight I increased my lamictal (mood stabilizer and anti-migraine med) and Monday I started the MigraLief 2x a day. Like I said a few days ago, MigraLief is a combination of magnesium, B2, and feverfew. My "lady cycle" is almost over and I've been really lucky not to have migraines all the way through it. Just 5 days instead of the 7 i sometimes have. Also, I think the beta-blocker propanolol is really kicking in as today I've felt really tired, a little light headed and even took a nap which I never do unless I'm sick.

But like the hubs said when I talked to him @ work today. As long as there's no pain, who cares....we'll deal with the rest.

It's my time now. It's time for these to get under control. I don't know what life lesson I was supposed to learn out of all this, but I do know I have a bucketload of compassion, and extreme understanding of chronic pain, knowledge and empathy about mental illness, a tiny mustard seed of faith (which evidentally is all that's needed to move a mountain...) and finally, the ability to not suffer in silence anymore but ask for help.

It's my time, and I want this to end A.S.A.P. No more, I think I've had enough.

the calm before the storm...

Today started off as a great day. I went to a counseling appt. that was quite helpful, and then made dinner for my neighbors: baked chicken, spanish rice, homemade creamed corn and coffee cake. I felt great and was able to make time for a walk around the lake before going to the nurse treatment station to learn how to give myself a DHE injection.

While I was walking around the lake I was thinking about the fear I have about the frequency of my headaches and the pain level. I was thinking about the scripture in the Bible that says that the faith of a mustard seed can move mountains. I thought it funny that some Christians, including myself sometimes, criticize ourselves and others for not having lots of faith, for not having the faith of a mountain.

But then some quiet voice inside me said that's the exact opposite of what we are supposed to have. The Bible says it takes the faith of a mustard seed, a tiny little seed. I thought to myself how I feel like my faith has been stripped to an absolute bare minimum, to where there's just a tiny bit left. Sort of like being stripped back to the basics. Yet I know that I have just a tiny bit of faith, a mustard seed. A feeling of satisfaction came over me as I realized that that's all I needed. I felt joy and hope and breathed in the fresh air and soaked up the beautiful colors as golden leaves were blowing out of the sky all around me like rain.

When I was about 3/4 of the way done I felt the first tiny bits of pressure in my right temple. I rubbed some tiger balm on it and continued on. I was a bit sad that another was returning so soon and interrupting my terrific afternoon. As I reached the last intersection before the end of my walk I thought of my Grandmother who passed away a year ago. I thought about how much she cared/cares for me and how sad she would be to see how much I am struggling and I could feel her love for me and compassion for my circumstance.

By the time I reached the doctor's office my pain was increasing steadily to about a 3-4. I was definitely uncomfortable and not able to ignore it. I learned how to give myself the shot and should have taken one right then, but I was hoping to get home and at least get my daughter off to her soccer game and had no idea how quickly the pain was going to progress.

I got home w/in an hour of my appointment and my pain had skyrocketed to an 8. I could only talk in a whisper and it was a burning pain, the kind associated with my menstrual cycle, so I knew that this was the time I needed a DHE shot.

I struggled to concentrate as I prepared the shot as my thinking was so slow. I thought I had done everything right and injected the shot after psyching myself up. Within a 1/2 hour my pain was not improving and I began getting extremely nauseous and vomiting. With this happening, my pain reached a 10 and I laid on the bathroom floor near the toilet wriggling on the floor trying to get some relief.

My husband left our daughter's soccer game and found me on the bathroom floor. He hurried to get our boys ready who were starting to get rambunctious (which makes me want to scream obscenities when I am just wanting to curl up and die!) and we took them to my parent's house. Then he took me to Urgent Care where they gave me an I.V. so I could get benadryl, reglan and another DHE shot. After this series my pain did not improve and I was feeling anxious and like I was going to crawl out of my skin. It was horrible. They gave me a shot of Torredol, put me in a wheelchair and sent me home. This is the quick version. The long version would include an incredibly compassionate nurse who has now I.V.'d me at least three times and is recognizing me as soon as she sees me. I like her but not enough to see her again under circumstances like that!

By the time I get home and settle in for an hour my pain diminishes to a 2 and I top myself off w/ 2 aleve to hopefully get the inflammation down in my brain. I would sleep very soundly....