So Far So Good

At the doc a week or so ago I was reminded that I have a homeopathic remedy for my migraines, Gelsemium. Historically, it's always been easiest to reach for the allopathic meds than the alternatives. Well, I've been giving it a try... and my use of other drugs especially the narcotics has gone way down. Usually within 5-15 minutes the headache has subsided.

I also incurred a minor head injury in the past week which caused a nasty headache. To make sure it was not a migraine I took the homeopathic remedy and sure enough it did not work for that. However, Arnica Montana both the pellets and gel have been helping tremendously with the major bruising. I was attacked by a patient at work. Word came from the DA that they are charging her with battery, due to the extent of the injuries.

All in all, I seem to be doing pretty well both with the headaches and memory.

9.24.9 Other ponderings

Last week I had my lap-band filled as well as a gall bladder ultrasound. The restriction has not changed and I can eat most anything, but the abdominal pain I'm experiencing is increasing. The ultrasound came back that there is nothing wrong with my gall bladder. This issue came up when I went on a couple of Z-packs for an ear infection & later bronchitis and seems to be increasing.

Tomorrow I go in for an "unfill" where the saline that keeps the band around my stomach tight is removed. This will only be the 2nd time I will have had this done in the nearly 4 years 10 months I've had the Band.

Saturday, I have a date, someone from work who has found me "cute." We will be going to a group session with Susan Anderson while she and her daughter, Christine are here for their Introduction to Bridging Two Worlds.

9/23/9 Why on days off

I've been fine for a week and a half, and I seem to be maintaining part of my 3rd shift sleep schedule, falling asleep late afternoon or early evening. I woke up about 1:30 with what I thought was a headache related to not taking my sleep meds, since I've had these before. So, I took a 1/2 dose. I woke up this morning with a full-blown migraine. I know that these single days off do cause me to sleep much more. I do tend to do what the body requests especially regarding sleep. The better quality sleep, the less fibro flairs I will have. The weather probably didn't help yesterday with all the rain, though "they" say there wasn't that much, it was downright torrential. I will see how today goes before 3 to see if I will need to call in using FMLA time.

9/12/9 Lost time

Thursday night I woke up late for work, totally exhausted. I believed I had a hard time sleeping, tossing & turning, at least that's what I remembered. However, Friday morning when I got home, clothes were put away, the ironing board and iron were out & things had been ironed and beads had been messed with. No, I don't think the cats got into things or there was an intruded. On checking my phone, it appears I had called my doctor & spoke to someone. I did call & it was confirmed that I called the night before complaining that I hadn't slept for a couple of nights. I explained I was, in fact asleep, had no recollection, and under no circumstances should I ever be advised to take another Ambien. It seemed I had similar trouble sleeping on Friday, however, had put the meds out of reach and tossed until I had to get up for work. Shait was sleeping with me, and perhaps I am grateful she was. She kept getting up and swatting at me, shortly after I would rouse, she would settle down.

Invisible Chronic Illness Week

Borrowed from the keyboard of Migraine Maven Teri Robert:

"Anyone who has Migraine disease or another headache disorder knows what it's like to live with an invisible illness. People can't see our illness. There are no outward signs. No physical scars, canes, wheel chairs, or any of the other outward signs that can alert people that a person is living with an illness.

Invisible illnesses are easy for 'healthy' people to ignore. Unfortunately, so are the difficulties of those who live with these diseases. This adds to the burden of disease and makes lives even more difficult.

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a 'meme,' 30 Things About My Invisible Illness You May Not Know. So, here's my meme..."

1. The illness I live with is: Familial Hemiplegic and Intractable Chronic Migraine disease

2. I was diagnosed with it in the year: 1980-1981

3. But I had symptoms since: I treated for my first headache at age 16 with a B12 shot but I remember complaining about my brain hurting as a little kid.

4. The biggest adjustment I’ve had to make is: the need to change careers. Other lifestyle changes have been necessary. No Chinese restaurants, avoid free-glutamates including MSG, high fructose corn syrup, artificial sweeteners.

5. Most people assume: That Migraines are "just headaches" that can be "cured" with a little Excedrin Migraine or Tylenol, and I should be able to just "get over it" because it "isn't that big a deal."

6. The hardest part about mornings is: when I would wake up with a migraine or prodrome symptoms because at that point there's nothing I can do except grit down and bare it, even if that still means having to go to work. If I did make it to work, I was usually home by 10 am. Haven't had this issue so much since working 3rd shift.

7. My favorite medical TV show is: generally anything on PBS. Otherwise I just love House.

8. A gadget I couldn’t live without is: A heating pad. Not that it's a real gadget.

9. The hardest part about nights is: Working. It's very difficult adjusting to 3rd shift. Otherwise, I do have a stage IV sleep disorder and do not go into deep sleep.

10. Each day I take: 11 prescriptions not including my inhalers, two scrips are PRNs so I don't take them every day.

11. Regarding alternative treatments: I believe in them wholeheartedly. I use homeopathy, relaxation, ice, heat.

12. If I had to choose between an invisible illness or visible I would choose: I'm not sure, most people just don't want to deal with others' issues. Visible is a lot easier to get disability for.

13. Regarding working and career: I am fortunate to have had skills to fall back on when I had to change careers in January. If I hadn't had those, I don't know where I would be.

14. People would be surprised to know: That my migraines caused brain damage.

15. The hardest thing to accept about my new reality has been: Limitations, even 9 months on my new job, it's difficult having given up a career I enjoyed. Finding the right medication combination to treat and manage the disease.

16. Something I never thought I could do with my illness that I did was: Start a blog, connect with and meet so many other amazing migraineurs.

17. The commercials about my illness: Certainly minimize the disease and lead to the misinformation that is out there. Some of the prescription commercials make it seem that the drug is for everyone. Not all of us can take these meds. In particular, I cannot take any of the Triptans due to the vascular risk.

18. Something I really miss doing since I was diagnosed is: Hmmm, it's been so long ago, but within the past 18 months being a social worker and going for Chinese

19. It was really hard to have to give up: My career, though the place I worked was easy to give up.

20.A new hobby I have taken up since my diagnosis is: beading

21. If I could have one day of feeling normal again I would: Normal? Is there any such thing? If you ask anybody, I don't think anyone truly feels what they would identify as "normal."

22. My illness has taught me: Perseverance, and I am not alone.

23.Want to know a secret? My disease truly is genetic. I have two lousy genes, and two mutations on the same gene. Most likely from my mother's mother's side. That's where the stroke history is from.

24. But I love it when: I connect other people with migraines who really understand and validate all the things that used to make me feel "crazy" and alone. AND when I find research that confirms some of the things we have all been saying just from the experience.

25. My favorite motto, scripture, quote that gets me through tough times is: "Is there any remover of difficulties, save God, say praised be God, He is God, all are His servants and all abide by His bidding." The Bab

26. When someone is diagnosed I’d like to tell them: You are not alone. Let's go on the journey together.

27. Something that has surprised me about living with an illness is: How often people can be insensitive about Migraines, especially with noise. It is very difficult to have to listen to someone else's music when the head is pounding; and they believe it is a right to have it blasting in the workplace.

28. The nicest thing someone did for me when I wasn’t feeling well was: My kitties are awesome, they always know when to snuggle when I don't feel well.

29. I’m involved with Invisible Illness Week because: Invisible Illnesses are very, very common. Everyone knows someone with an invisible illness, and it's important to bring the special issues related to living with these illnesses to light.

30. The fact that you read this list makes me feel: Honored.

You can find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Thanks Teri!

9/9/09

I've been taking Metoprolol now for a month. My neuro is happy the blood pressure is lower, my primary is concerned that it's going too low. The best benefit so far is that my migraines have been reduced even further. In the past week, I've had a minor one. By minor, I mean one that I could still function semi-normally.

8/24 And it's over in a flash...

... yesterday all I had was a twinge, and today, it seems my reprieve may be over. So far I may have caught it early enough, to keep it at just a nagging irritation. A check of my blood pressure did show an unusual high 160/109. Subsequent checks have been much lower and more within the normal range. I will try to get as much sleep as I can.

8/23/9 All I had was a twinge earlier in a flash

That's all it was a flashing twinge and was gone. So, perhaps we have come across the right combination of meds to keep this all under control. Since the blood pressure med most of the headaches have completely gone, but the side effect is just being a little more loopy than normal... so what's new? I just think there are times that the pressure drops just a little too low and I get light-headed. It would be good if we are on to something!

8/21/9 It's been about a week?

Wow, it's been about a week since really any significant headache has happened. I've been icky because of the weather, and the fibro flaired for a moment, but all in all it's been a good week on the headache front. Now if only this ear infection will go away. I am feeling that the antibiotic is taking some effect, but actually feel best when I'm laying down. The inhalers have worked. Blood pressure last night was pretty low so did not take my med. 100/69.

I saw my plastic surgeon today, and my healing continues to go well. She suggested that I make my appointment for the tummy tuck consultation before leaving the office, so I'm set for mid October, then we should know if there will be a new insurance or not and I should be closer to my goal, if not there. Monday I was 183.

8/17/9 Good news blood levels GREAT

There is a reason for my pity pot... ear infection and it seems to be trying to work into the sinuses. But the good news is I got my blood work info. B12 1004, Potassium 4.1, Creatinine 1.03 & HOMOCYSTEINE 9.6. Ideally my primary would like to see it right around 7, but for someone who was +26, this is pretty darned good. The benefit is that for now I am able to stave off adding a cardiologist to my list of physicians yet.

8/16/9 Pity pot

Yesterday was my day for the pity pot. Once in a while is ok. So now I'm off it. Seem to have gotten adequate rest and am a little more rested. Have more energy and more brain power. Actually if any day should be a pity pot day, today should be. The barometric pressure is whacked the weather indecisive and fibro appears to be flairing. I just won't let it take me over.

8/15/9 Just tired

Work, sleep, work, sleep, work, sleep, eat oh, did I do that today, no I forgot, oops. Is it any wonder I don't feel good? Then a co-worker keeps asking am I losing more weight, probably, I don't know that's the goal... but is it worth it? Another co-worker teases the crap out of me every day and after a long night, I just go off on him, is it me or my messed up brain? I have no tolerance. My world feels like it is closing in and getting smaller, so is this what it feels like as the light of knowledge gets dimmer? My head is just a constant ache at this point.

8/11/9 To Topamax or not

I don't believe Topamax ever did anything really for my headaches, maybe just dulled them a wee bit. It wasn't until the Folgard RX and now CardioB from OrthoMolecular Products that there was any decrease in the pain levels. The addition of Namenda in December literally turned my life around and I am probably as close to normal as I will ever be.

8/11/9 Periventricular White Matter???

Yesterday was not a good day for the head. Although a day off, it proved to be a royal pain. I did an experiment, I monitored BP when pain at peak... so was BP... diastolic in 130s-140s & systolic going into 90s. Otherwise hung around the teens and 70s, which is where I am today. The Metoprolol appears to have had an immediate effect, it seems to calm me down too. So, what are all these long words in the subject? Last year, it was what my neurologist called brain death. Today I find a link that maybe with the supplement combo (Folic Acid, B6, & B12) has done the most to prevent any further damage. It's true that I've had a heck of a time with my balance, stumbling over my own feet.

http://www.dizziness-and-balance.com/disorders/central/pvm.htm

8/9/9 Visual Disturbances

Not sure if this is just tiredness or an occular migraine. Not much pain, just really distorted vision. The weather is quite changeable with high heat index and now torrential rains. My FMLA has been approved the next year. Yeah. Now monitoring blood pressure and taking metroprolol's lowest dose.

8/4/9 Just because you can...

Just because you can doesn't mean you should! How true a statement that is! I knew I knew I knew that something I was making to eat has historically been a trigger several years ago, but I have avoided it for many years. Sure enough within an hour, it hit! Fortunately it's starting to go away

Had a good session with Pam today, she's excited to be the person I give my presentation to for my class. She has the syllabus and my personal learning plan. It's been a long time since we met for 1:1 session. I started reading the next assignment. Though was having some trouble concentrating and comprehending with the music in the background. I'm starting with the reading from Equal Circles "Religion and the Myth of Male Superiority." What I'm understanding is quite interesting.

Work will be work I don't want to get into it with anyone, just do my job and leave it there. I don't need this one to affect my health either. I already have enough anxiety and stress to go around, and with 3rd shift I don't need any more to deal with.

Spoke to a friend, and she seems to be having others who are rallying around as well. Either donating beads or time to recoup her product.

I am volunteering for Thursday after work to help recoup some o her creations. While they are not they way I make them, she will have things for her hewelry show this coming weekend.

I was not aware, but I did have a new script for Clnazepam, which will help me sleep and then get through work. All I need to do is get a few hours sleep tonight.

8/1/9 No wonder the BP is higher

I am so glad I have the weekend off. Sometimes people just like to cut you to the core. I need to stop being so sensitive and taking everything personal. I've not had 2 days off since my little incident. It should be really "relaxing."

Is it any wonder my blood pressure is elevated?

I have been coming home and collapsing the last couple of days. I have not normally been doing this, but I think the rest is so greatly needed.

So far today is bright and clear, no new headache, while yesterday was pretty foggy.

7/30/9 Listen to Body

It pays to listen to the body, it knows. The results of my MRI... TIA (trans-ischemic Attack), but no new permanent damage. It is critical to follow the treatment plan. Right now, no overtime, no significant travel before Labor Day weekend and that MUST be via ferry. I see him in a month, but he does not like my blood pressure. It's been too consistently borderline for the past couple of weeks.

7/28/9 Out of desperation a crown

...of creativity. I've been trying to figure out just how to create some sort of heating pad or bed buddy for the head. I wanted the rice thing so it could be nuked and a snuggable stretchy fabric so it would stay where put yet be comfy yet breathable. Where to find such a thing... how tacky... a rummage with childrens clothes little kids tights. Well for me anyway. This is my prototype. I am currently wearing it, and it is helping. The heat encircles the entire head. The compression of the tight gives adequate pressure as well. And if necessary, it could be brought down over the eyes providing ample darkness. So this is my "migraine crown." Well, time to reheat and lay down and try to get some sleep. For the photo I stuffed it inside of a sock.

7/28/9 Vice Grip/Kitties in snuggle mode

The vice grip is back and kitties have been in snuggle mode all day. This headache started in the temple but moved to the center. It was an incredibly busy night at work so when I got home I laid down and managed to go to sleep, but woke up to my heartbeat pounding in my head. None of my meds have been working today for more than about an hour. I think something is coming in the weather, because my fibro is also flairing. Concentration sucks, tried to read emails, one of which was the beginning discussion for class, I could read the words, but I couldn't comprehend.

Setting up meds takes only a few moments

Choose the type and size of container... lots of options here.

... one general container where everything just gets dumped in.

... the prescription bottles all lined up

... 1 oz dixie/medicine cups

... tin/tupperware

... partitioned container, may be specific to number of meds rather than days of week

... partitioned containers for days of week or times of day

... individual envelopes... paper/plastic/ziploc

Sometimes craft containers can work really well too. Some of them stack or snap together and may be clear with lids that are easy to screw off.

If you or your loved one is no longer able to remember times of day for taking the meds there are some really fancy contraptions that will call family when doses are missed, they dispense meds at certain times, having them available for a certain period, then once missed the machine starts calling. The individual does not have access to the pills inside of the machine. It's pretty awesome. It does help maintain some level of independence.

Very important, be mindful of temperature changes. Combining capsules and pills can cause degrading.

7/27/9 Setting Up Meds Isn't Just for Old Folks

I think I just learned a very important lesson. Setting up medications is very important. Some people can do it on a daily basis, and that's wonderful. I need to do it at least weekly. I was really good on most, but on others, not so hot. The proof is looking at my bruising, and how they have increased since the Plavix is now being taken daily as prescribed. So, did this contribute to my incident two weeks ago, maybe. Am I going to beat myself up over it, no. I'm taking it as a lesson learned. One of the nurses on days asked how I was doing. She said, "the last time I saw you, you didn't look so hot." I appreciate the concern. I explained that I will get the results on Thursday, then they went into shift change.

Work was a bear last night. I don't recommend getting only 2-1/2 hrs of sleep then pulling an 8 hour shift with a co-worker that does absolutely nothing and decides to leave an hour early as work starts coming in. (stayed overtime for 4 hours), then as things got really crazy the 2nd OT person didn't show up until 1st shift started. From 2am on, it was non-stop. I knew due to the lack of sleep I might have problems staying awake so grabed a "Java Monster" energy drink. It was pretty aweful but I noticed how it hyped me up. Hyping wasn't what I needed because then I simply couldn't focus. I tried to stay as calm as possible. Then as I looked at the calendar, tomorrow is supposed to be my night off.....wrong! I signed up for overtime. I'll see if anyone wants to split the shift with me. Planning on going to sleep early.

7/26/9 It's good to feel good

Needless to say I feel good. I've been pretty preoccupied with getting stuff ready for my class and calling a cousin for a potential trip to Michigan Labor Day weekend. Maybe more will come up once I wake up at work tonight.

7/26/09 Challenge ahead

A post to my fellow learners:

I am reading through some of the course material and see that I do have quite a challenge ahead. For the first time I am able to recognize some of what it is that has been taken away. Sit back and give up, not a chance! Some of the material literally goes right over my head. What to do about it? Remain calm, steadfast, and pray. I am ready for this task. Gird up those loins, and pray that I am able to open up new pathways in the brain for learning. Let's see if this lowly broken winged bird can heal enough and will once again take flight and soar through the heavens of celestial knowledge!

Headache update: 3 days completely headache free!

Enrolled in Wilmette Institute - Women in the Baha'i Faith

My therapist recommended that I enroll in a class to encourage brain stimulation through reading and writing, then I thought a verbal presentation. I remembered my Faith offers courses through the Wilmette Institute they were at one time part of Lawrence University in Evanston, IL. I don't remember if they continue to be affiliated. Many of the courses are history or literature based. When I looked it up I had "technically" passed the start date, but enrollment doesn't close for 2 weeks. When I called to see if there was a possibility, the class only started the day before AND yes I could get in. I sent my payment this morning, set up my account, profile, completed my personal learning plan and downloaded the first two units to complete. I'm excited. The only thing I haven't committed to yet is a creative project, but if I do all three projects it will stimulate all areas of my brain.

7/24/09 MRI went well

Oh well, I skipped a day. I just had to sleep. My MRI went without a hitch. I took a silk eye covering with flax seed & lavender. It put me into complete darkness. It was a whole lot better than just covering my eyes with a towel. The MRI took less than 30 minutes, no where near as close as the 3 hours it took last year when the looked at they carotids. I am now 2 days without a headache. I'm still dizzy & stumbling over my own feet, but I believe this is still remnants. When I got home after work this morning, I went online only briefly, then promptly fell asleep. It was a good sleep, and it feels like I will be doing it again shortly.

On another side, I am causing trouble at work. I had emailed my supervisor the other day requesting Labor Day off (I work 24-hour service), his response was that we only get 1 major holiday off per year. I responded that per union contract, that is not correct, vacations and holidays are given according to seniority. There is no such thing as fairness in this case when you work for government. If those with highest seniority request off, they get it. Should be interesting.

7/22/9 I think I can describe it

The pain in my brain that I experienced last week definitely was NOT the same that is part of a "normal" migraine. There really are no words to describe it. The closest I can come is the image of such a complex lightning strike pictured. This is what I visualize. It was a constant pulsing pain especially in the left temple. This is also the pain that I experienced for the better part of last year. Although when the "attack" was in the acute phase (first 72 hours {my definition}) anything taken or administered as an abortive either did nothing, knocked me out or increased symptoms. As reported previously, there was the numbness, aphasia, and later issues with word finding.

The "normal" migraine (not that there is any such thing as normal) for me tends to be tolerable and can be treated. The longest & most relief is gained with hydrocodone/apap. Tramadol works in a pinch, but is not quite as effective.

Took ads out! Much better!

Hopefully anyone who reads this including me will find it easier since I have removed the ads. I must have been out of my mind when I added them.

7/22/9 It was different!

I cannot describe the difference. The headache I am having today is, I think, "normal." What I experienced Tuesday absolutely was not the same thing! I had second thoughts about taking a class & writing papers or verbal reports, but last night I had a lot of difficulty with word finding not only verbally, but with writing as well. So whatever I choose to do needs to encompass both aspects.

7/21/9 Suggestions from Therapist

My therapist had several good suggestions, the first is to stimulate my brain with those brain-type games. I have books as well as those at the lumosity website.

One thing that was suggested was to take an online course, perhaps a writing course. Something that requires accountability and creativity. This would be good since I'm currently having difficulty with language. I think my upstairs neighbor teaches Lit at Carroll College, or there's the Baha'i school that's all correspondence/online. That could be fun!

Brain Games to Stay Active

Great website for games to stimulate brain activity and memory. 7 day free trial. I'll end up subscribing to the full site: www.lumosity.com

Facebook also has a link: http://www.facebook.com/home.php?ref=home#/pages/Lumosity/12490127388?ref=ts

7/21/9 If only..

We sort of had a time crunch not knowing what part of the computer was supposed to go down @ 5 am, so tried to get everything done by then. I kinda went into hyperdrive, started hoarding work and doing too many things at once. Problem is, I have trouble stopping myself. It was good that.... damn... where did that thought go? Oh well, if it was important it might come back. I was feeling odd part of the night, some twinges, but no real headache. Balance is a bit off, stumbling. There was a definite loss of words, where I noticed I was pointing to things because I couldn't come up with the word. It's not an obvious aphasia, because I'm not trying to sound a word.

Now, this goes back to an episode of House, & I know it's tv, but it would be great if they could do something like an ultrasound of the brain while an "event" is happening.

7/20/9 So Far so Good! Good to feel Human Again

So far everything is pretty good. Everyone at work is saying I look a whole lot better even than Saturday morning. I caught Dr. Berlin this morning. He was the doc on duty when they called 911 and checked me over. He also called Froedtert before I was transported. He said that it really looked like something was happening. My MRI is scheduled for Thursday, with a follow-up appt with Dr. Chapman on the following Thursday.

I had switched half of my OT shift with a co-worker so I would go in the later half (3:15am). She had the gall to call at 10:45pm to see if I had changed my mind and was going to go to work at 11:15. I told her I wasn't able to since we had switched. I could have "you know what!" I had just started to doze off too.

Changing Careers Pt 3... Going from Social Work to Clerical

Sometimes the anger still pops out, and I'm not always aware of it immediately as it happens, but when the realization does arise to consciousness, I am sorely ashamed because I tend to have treated my co-workers poorly. Then I feel very bad about it. At least I finally became aware of all the anger that had built up. It is now much easier to deal with. It is still difficult to not do the work I enjoyed so much. If we are not horribly busy at work, on occasion, I can put some of the SW skills to use, but not professionally. It gives some of the patients a new ear to have listen to them, whether or not they feel they receive help makes no difference, but if it calms them down, it's helpful.

I am proud that I have retained my clerical skills through the years. I tend to be relatively quick and it seems also that my errors have also reduced over time.

Changing Careers Pt 2... Specifics, Management

No matter what, some Management sucks! The DOA, needless to say, handled things extremely poorly. Their goal was complete annihilation rather than reassign or accommodation. I knew I could not be accommodated in the same department, but management was bad-mouthing me so negatively, I could not get out from where I was without QUITTING. I was too close to earning my benefits, so why would I leave before I was assured of them? Though to outright terminate me, they knew they would have a nasty fight on their hands under the ADA.

I tried to get accommodations via the ADA officer, but she was virtually worthless. Although it did not help that my original diagnosis was wrong. Some of the elements were the same, I was not able to concentrate enough to complete the paperwork. The caseloads were way too high to give the clients the attention they really needed. That part was on me. It also didn't help that I was no longer able to express myself properly.

Changing Careers Pt 1... the generalities

When things took the turn in '08 who would have thought I could no longer work at a career I enjoyed? I was really struggling to complete all of my duties, but there were areas of the job that I was very good at. Actually as '09 was rounding the bend, it did not look like things were too bright about going back to work at all. It was a very difficult period of time. The sole benefit was that I did have previous clerical skills albeit 20+years old and I hadn't totally let them all go. And if I couldn't cut it at work all I needed to do was make it through 16 days to qualify for my retirement benefits. I received the MCI diagnosis in mid-November and by December 3 I was starting to take Namenda. It was making some immediate changes to the clarity of my memory. Just before Christmas I received a call from Bill, my Union Rep who wanted to get me in for testing for a position @ Behavioral Health in Psych Crisis as an Admission Rep, the job would be Clerical Assistant I... a pay cut of over $20K/year. Ahhh, but it was a job. I had already been set up for jury duty for when they wanted me to start. I managed to study especially EXCEL & pass the tests as well as get started by mid-January. It was rough, but at least I did enter a job that was still higher paying than the job I started at BHD 20 years ago. This position also provided me with some patient contact, but primarily completing clerical work.

It is a job I actually enjoy and is pretty active. There really isn't a lot of down time which is really good, but sometimes it does get overwhelming and if I am in a migraine cycle I am not able to focus, of put things in the proper order. This is a time when I really need to stop, ask questions and slow down.

Favorite Links

I am listing the following links because they have been helpful to me. Some of these offer free services and/or subscriptions both online and via subscription. My personal favorites are HealthCentral & Freemybrain... due to some of the interactions and valuable information that is provided. This is also information I have been able to share with my doctors that has been empowering for all of us.

The following are some wonderful links for resources:

http://freemybrain.com

www.mymigraineconnection.com

http://www.headaches.org/

www.neurologynow.com

www.healthmonitor.com

also check out the mayo clinic health newsletter as well as Johns Hopkins website for online info into all sorts of health issues

7/19/9 Relief It took 24 hours & plenty of sleep

It appears the IV infusion has worked. It took at least 24 hours after the treatment and a full 8 hours of sound consistent sleep and the snuggling to two loving critters. I woke up last night to no pain and again this morning to no pain. There are no remnants of any migraine hangover (postdrome) or memory difficulties of earlier in the week. If I can, I will be off to see Harry Potter shortly with a free popcorn.

Public Enemies from a Migraneur's View

I didn't go in or come out with a headache, but could feel the buttons being pushed. The movie was a good one. I'm not sure if I was sitting too close or if there were too many "close up" shots. It felt almost like there were so many close up shots that it was a strobe light going off in my head wanting to trigger a headache to start. There were a few times I just had to close my eyes to stop all of the stimulation that was happening. I know they say the director did this for effect and to keep the attention of the audience, and locally we were somewhat warned ahead of time, but I don't think it needed to be quite so much. Due to the locale of where all the shooting was done, they could have focused less on the close ups and more on some of the longer shots. The Wisconsin sites were awesome as was the Milwaukee County Historical Society and quite recognizeable if you've ever been inside.

7/18/9

As the work night went on the headache moved from the left side to the front then to the right. The vice wasn't quite as tight, but it was bad. The memory improved since the IV. Once I got home, the Namenda and Topamax helped, but not a lot. Sleeping helped a ton, felt like I had slept a full day, rather than 6-7 hours only. Perhaps the extra sleep is what I needed to have the IV treatment really take effect. Only time will tell. Right now I feel really good. Kitties have been snuggling all day, perhaps I need to feed them too oops! I picked up a date book to be used specifically for a headache diary. I've been realtively lax in keeping one, but it's so crucial now. I've been managing to get at least one Boost in daily since Tuesday. Will try to get some more sleep.

7/17-18/9 A post on FB

I made the following post on Facebook:

To my friends with health concerns of any kind, do what you can to educate yourselves to the best of your ability. You are your very best advocate. Do not take "no" from your docs. Look for good sites that answer questions specific to your health issues. Once I get a chance, I'll post some of those that have helped me a lot. Take a peek at newsletters too. Both Mayo Clinic and John Hopkins offer newsletters on a variety of health issues. They also have free online options. For neurologic/brain issues, there's NeurologyNow.com (also a free print magazine you can sign up for), healthcentral.com (variety of health concerns), basically if you can spell it, you can find it. If you can't find it, perhaps you can start it. It only takes one person to get the ball rolling. Some may think us a bit obsessive, yeah, sure, but by advocating for ourselves we are in a better place than accepting the same old same old. Last November, it was possible I wasn't going to go back to work again. Here I am! And ATTITUDE IS EVERYTHING! "A new addition, not on facebook..." I picked up a recent copy of Healthmonitor with Montel on the cover and the title of his article is "I Choose Happiness." It's encouragement like this that helps us all strive toward some level of recovery no matter what health issue we may be facing. No matter how dire the circumstances, maintaining a positive attitude can get us through anything.

Friday 7/17/9

As night went on the vice grip just kept on tightening. It was so hard to work. As it tightened the memory also got worse. Pain remained on the left. It was enough to bring tears. I was having difficulty with consentration and remembering how to do my job. Not so much with the tasks, but the ordering of the tasks and/or priorities. Cannot wait until appointment with Dr. Chapman. Got home tried to rest before appt, called Wisconsin headache specialists and inquired regarding IV infusion... not pleased with results. posted to FB. Received call from TR. Good to talk to her and received encouraging words. Saw Dr. Chapman. It's so good to have healthcare professionals who listen to you and take you seriously. I asked him about IV infusion and he sent me immediately to Waukesha Memorial for an infusion of Depacon, requested the CT from Froedtert and ordered a new MRI from St. Joe's. It took the RN a while to find a vein. There was some immediate relief from the steroid, but the metallic taste in the mouth was pretty bad. When I got home I took my Ambien and slept to 9:45 then got up to go to work, I was fine for a couple of hours, then the head pain started again.

Thursday 7/16/9

Glad I was able to reschedule appt for Dr. Chapman for Friday instead of having to wait until next week. Morning went fairly well. Actually it was a pretty good day. It seems there was finally some relief, but memory really sucks. Focus of day itself was uneventful. Was pretty much fine until going to bed for work. When woke up at 10 pm for work head feeling tight, as night wore on it felt like a vice grip just tightening.

Wednesday, 7/15/9

Woke up 6:00 am. At least today is day off. Headache dull, but still there. It doesn't seem to have been significantly relieved. Decided to make pot roast w/coffee. As starting, Willie called to see how I was doing. What a shock. I did let him know I was doing better & should be in. In a fog. Must remember appt. at noon w/Dr. Sweeney. Made it to appt. Told Dr. Sweeney about day before, he recommended that I take day off work, I called Willie back. I also talked to Dr. S about what I'd learned about IV infusion and he mentioned the steroid therapy he knew about. He recommended it and also suggested that I try to move up neuro appt. He called pharmacy to see if there was a form of potassium that could be taken via "sprinkle" form that would be tasteless. No such villain. So must try to get in dietarily. Am down to 191. Dr. Sweeney gave me cortisone into right hip. It did some help immediately, but after lidocaine wore off, was painful again. Slept through night.

Tuesday 7/14/9

It actually started a couple of weeks before, my balance was off. I was starting to get foggy. But at 2:00 on 7/14/9 the numbness, tingling began as well as a new symptom, my tongue became numb. I let my co-worker know. She let the nurses know. I knew something was wrong, was this just a new migraine coming on or now a TIA? It felt like a little of both, but more than a migraine. There was also the beginning of aphasia & memory loss. Janise came by & I let her know of the symptoms I was having. At that point it was becoming more of a migraine. Around 6 the neuro symptoms got worse so I managed to get to nurses station & described what was going on. They took vitals BP 168/89 HR 101, they called 911. Ambulance would not take me to Elmbrook but only to Froedtert. BP still high 189/88 pulse O2 @ 89, HR 88, blood work. Potassium low. Froedtert did follow stroke protocol, but seemed dismissive. Gave CT scan, mini-mental and most reflex testing. Given cocktail of compazine & benadryl (put me out) & oral suspension potassium. That was vile stuff. I was released after taking potassium given no restrictions. I attempted to walk to get my car from work, but could barely make it. Called Jim to pick me up. He took me to lunch and then felt semi-conscious enough to drive home with him following me. Once I got home I went to bed by 2:00 pm. I did not wake up until 6:00 7/15/9