Thursday, July 30, 2009

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.


Tuesday, July 28, 2009

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.

Monday, July 27, 2009

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.

Sunday, July 26, 2009

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!

Friday, July 24, 2009

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.

Wednesday, July 22, 2009

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.

Tuesday, July 21, 2009

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.


Monday, July 20, 2009

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.

Sunday, July 19, 2009

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.

Saturday, July 18, 2009

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