30 Things About My Invisible Illness You May Not Know

National Invisible Chronic Illness Awareness week is September 14-20, 2009. Below are 30 Things About My Invisible Illness You May Not Know. This is one of the fun activities for this year for Invisible Illness Awareness Week.

1. The illness I live with is: Migraine Disease

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: 1970

4. The biggest adjustment I've had to make is: Not being able to finish a prescription and have my disease go away.

5. Most people assume: I like to sit in the dark and I have an occasional stutter or speech impediment

6. The hardest part about mornings are: getting up after a rough night

7. My favorite medical TV show is: House

8. A gadget I couldn't live without is: my laptop

9. The hardest part about nights are: staying awake when trying to learn more about my disease

10. Each day I take _15+_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: am open to different options, but like a warm shower on the back of my neck or top of my head.

12. If I had to choose between an invisible illness or visible I would choose: invisible. It has made me stronger and taught me to better stand up for myself.

13. Regarding working and career: I am grateful my employer makes accommodations for me without issue

14. People would be surprised to know: how often I am in pain, feel dizzy and nauseous while mostly keeping up with life and work or at least so far keeping up this appearance.

15. The hardest thing to accept about my new reality has been: that I may not be able to keep up this appearance much longer.

16. Something I never thought I could do with my illness that I did was: learn as much about it as I can so I could tell if a doctor really wasn't an expert in this medical area.

17. The commercials about my illness: are not adequate enough.

18. Something I really miss doing since I was diagnosed is: whatever I want; whenever I want; where ever I want. I have to think about everything before I do it; before I eat it; where I am; where the lights are, etc. Things aren't as spontaneous as they used to be.

19. It was really hard to have to give up: chocolate, coffee and other foods; unconditional sports (I can do some sports, but I have to wear a hat, sunglasses, limit running, exertion, etc)

20. A new hobby I have taken up since my diagnosis is: reading, journaling, researching, teaching

21. If I could have one day of feeling normal again I would: want to get out and visit with people I haven't seen in a while.

22. My illness has taught me: patience, determination and to trust my instincts

23. Want to know a secret? One thing people say that gets under my skin is: it's only a headache

24. But I love it when people: ask questions and want to learn especially if it is to help themselves or someone they know

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.

26. When someone is diagnosed I’d like to tell them: to learn as much as you can and ask questions until you understand so you can be a good partner with your doctor. If your doctor won't partner with you, find one who will.

27. Something that has surprised me about living with an illness is: how many doctors I have gone to, who were supposed to be specialists, really don't understand my disease or want to understand it. Some doctors seem to want to use a one size fits all resolution when it clearly is not the right solution for me.

28. The nicest thing someone did for me when I wasn’t feeling well was: bring me some safe food to eat and spend some quiet time with me without even being asked.

29. I’m involved with Invisible Illness Week because: I want to share my experiences and hope to show others they are not alone.

30. The fact that you read this list makes me feel: that maybe I've been able to make a difference for someone else.

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.

If you Ignore Them, They will Still Come

Last weekend, I finally said those words out loud that I didn't think I would ever say and wouldn't normally let pass through my lips. I said that I thought my preventatives were finally working. This was after I was asked how I made out with the last Tropical Storm which came through our state.

I had really fared pretty well with the recent storms. Just mild Migraines and my cognitive function was kept pretty much in tact too. However, I think I knew something was up even as I was answering this question. I just wasn't myself yet I feel I was subconsciously trying to convince myself that I was fine.

It didn't matter that my cheek was already numb and I was being the biggest chatterbox around. You see, I don't normally like to talk even though I force myself to normal talk when I have to. Being the super talker I was is usually one of my signs that a bigger Migraine is coming on which I know I was trying to ignore as well as the tingling cheek and other symptoms.

It has been a bad week too. I feel like I jinxed myself with the comment. I actually ended up missing two days from work this week because of the Migraine which is something I haven't done before and was still not up to par the rest of the week. I know I shouldn't just ignore my symptoms, but I don't feel like I always think straight at that point either.

I think I want to find some preventative that works once and for all that I will try to convince myself that everything is getting better although I do know that I have been handling the storms better. Luckily the Migraine has been winding down and hopefully I'll be back to normal tomorrow as this is going to be a big weekend that I need to be ready for.

Is it normal to not want to get Migraines that you don't notice obvious symptoms?

Science Experiment

Sometimes I feel like a big self inflicted science experiment. If it's not with foods then it's with medications. These experiments have been going on for years. I still have too many Migraines a month even though I'm taking a fist full of pills morning and night.

I found a lot of food triggers while performing the tests on the elimination diet. I had stalled in searching for new food triggers for a long time now and decided to stick with the foods I believe are safe. There are a couple of reasons for this decision since I wanted to try to stabilize as much as I could and I have been trying to limit the number of Migraines I get.

After a while, I felt like when I added back foods during the elimination diet, it was more or less a way to make Migraines. I know that's not exactly true, many people don't even have any food triggers and I'm sure there are still foods out there I can have which I haven't added back in yet. I feel comfortable with the food triggers I found although I would probably approach the whole diet differently if I ever did it again. I got tired of creating Migraines when trying a new food although I did end up cutting my Migraines in half by the time I stopped the diet.

Lately, the weather has been so crazy here, there has been so much going on and I've been going through a few medication changes at once. I don't like to deal with so many variables at a time. I like to be able to definitively account for the different side effects and what they can be attributed to. For the most part, that has worked out ok because over the last few months, my medication changes have included increasing verapamil a few times, decreasing topiramate while having it change to a generic brand and also switching my abortive.

I haven't really noticed any additional side effects with the topiramate especially since this has been decreasing and I've been on varying doses of topiramate over the years. The only other variable here was the switch to generic that I don't believe had any significant side effects. Although I believe it has been helping, the increase in verapamil is a different story. There are a few new effects that I have been concerned about and watching. Not uneasy enough to call my doctor now, but I will have discussions with her about them during my next visit.

Just recently, I'm getting confused as to whether one new side effect was due to an increase in the verapamil or the abortive change. I originally thought my swollen ankles were because of an increase in verapamil and it had gone away as I adjusted to it, but the last time I took my abortive, I noticed the swollen ankles were back again. This had never been an issue before these medication changes.

Now I need to be a new science experiment the next time I take my abortive. On top of everything head related I'm sure if I remember, I'm going to be checking my ankles like every hour. Everything I've read says to contact your doctor if you have swelling of your legs or feet with either medication, but I need to know what and if the drug I am taking is causing my ankles to swell so I need to take the medication, observe and write my findings - a science experiment.

I just find that I want this to be over. I'm tired of trying to figure out the whole puzzle. I know I'm not going to find a cure, but a truce would be real nice about now.

Computer and Office Dilemmas

I like to observe and analyze different things all of the time. There have been a couple of things going on at work lately. Unfortunately, this is the place I can observe the most since I spend more time here then anywhere else. Some things have led to changes; others I still need to figure out what to do about especially since it affects me at work.

I have my computer on the lowest brightness setting I can stand; even to the point where there are times when I want to see a picture or graphic, I actually have to turn up the brightness in order to to see it more clearly. However, I still have problems with some application software, Internet sites and other areas I view on my screen.

Email was the first application I started to notice. The funny thing is that it was a constant flow of emails that came from one person that started keying me into these problems. Her emails always came through with huge lettering in a bold font.

I'm not really the type of person to take offense to someone who uses all caps (not what she was doing), where the typing is seen as yelling, but that is sort of how I felt with these emails no matter what the content was in them. It made me start to look closer at these until I realized what the true problem was. The huge, bold, black letters were too much of a contrast for me against the white background!

I knew some people had this fancy stationary setup as their email background, but that would really not be something I was interested in using. As my first step in trying to resolve this issue, I created my own stationary. I didn't put any designs on it; all I did was create an ivory or off white background. This was working out really well. The only problem was that if I replied to an incoming email, it didn't use my stationary or when I read an email from my inbox, it still had the bright white background and I still had the same issue with the big, bold lettered email on the bright background from the one lady.

Finally, the resolution to this email problem ended up resolving other computer application issues too. I changed the display on my computer. The active window background on my computer is no longer white. It is an ivory or off white color now. It is this way in email, my windows office applications, my Internet windows and really most windows that had this white background.

It was strange going into excel in the beginning and not seeing the white cells, but it is so much easier on my head now. Plus I am the only one who sees the off while color. Anyone I send an email to or a copy of my spreadsheets will see the bright white backgrounds on their side since this is how it displays on my computer only. Even the big, bold lettered email is not as attacking for me any longer.

The other work dilemma I need to sort through is a little trickier than the computer issue. I don't have a solution for it yet and it took me some time to identify the problem.

I have a light accommodation in my office. I would not be able to survive at work without it. The problem? I have found that I avoid going into other offices because of the piercing pain their lights cause me. Sometimes I may stick my head in their office to talk, but I don't like to go in there, sit down or do a conference call with them in their office. However, there are times I will force myself to go into some of these other offices. For example, when my email lady has a conference call, I make sure I go into her office for those calls even though I would prefer to call from my own office. I have found that she is more likely to partner with me when we are face-to-face on the phone rather then in different rooms.

I know it would be unreasonable to have my company do something about the lighting all over the building or even just on my floor so that is something I would never ask for. Most of the conference rooms have a different light fixture than the offices which deflects the light up so these rooms aren't too bad when we have meetings in there. I find that no matter what room I go into, the first thing I do is check out the lighting and pick the darkest area in the room to sit. Does anyone else do that?

I still don't know what to do long term about going into the other offices, but eventually I'll figure out something or become the biggest my office homebody at work.

Medication Side Effects

I haven't been myself lately. In typical fashion, I have blamed it on whatever seemed logical to me at the time. There have been so many changes and things going on lately that it's been easy to pick a pseudo reasonable excuse.

One huge change was my son left for school. I've also been going through a medication change, the stresses of a Migraineur in the workplace (that covers a lot of ground), my dog acting up since my son has gone and a small sports foot injury.

I had my blood pressure taken at work this past week right after a very stressful conference call. I try to get it taken every week as they come into our building specifically for this purpose. I originally started getting this done because I have white coat hypertension until I am more comfortable with my doctor and because of the medication changes I go through. This time my BP result had turned my recent theories and thinking around in regard to what I have been feeling.

I have always had textbook BP and don't know anything about hypotension. Yes, hypotension even with all of these changes and stresses. Granted I am taking a Calcium Channel Blocker for my Migraines, but almost every time I get my BP taken, I get a 'Very Good' comment. I am not on a high dose and I took an even higher amount of a Beta Blocker when I used that as a preventative. My BP has never been this low. The other weird thing about it was that it happened all of a sudden and was not a gradual drop in pressure.

My last medication increase was about three weeks ago, was a very superficial increase and added at night to hopefully stop some of the morning Migraines from occurring. It was so small the pharmacy didn't even have this dosage in stock and someone there asked if they even made the medication in this small of a dosage.

Since the medication change, the weather has turned around where it has gotten real hot and muggy. This had made it tough to do anything with the slightest exertion including the outdoor sport I've been doing for years without very easily losing my breath along with quickly getting an accelerated heart rate. I also hurt my foot slightly around the time of the medication change as well.

As you can see, it was simple to mostly convince myself that I was easily out of breath and had an increased heart rate because of the weather mixed with a little bit of exertion. It was also very plausible that my ankle would swell because of the injury I received. Although this wouldn't explain why my other ankle was swollen, I could explain that because I've been stuck behind my desk where I've been bending forward in a funny way too much lately. I was probably just cutting off the circulation where my legs weren't draining well. That must be the reason.

After getting the low BP result, I decided to do a little research and I looked closer into my medication side effects as the swollen ankles and other things explanation had been bothering me. Even though I read through the pamphlets that came with the prescriptions before, I guess I forgot about these side effects or didn't pay much attention this time since it was such a little increase and I never experienced them earlier. Swollen ankles was a listed side effect both on-line and in the pamphlet as well as being out of breath and an increased heart rate. I know I will pay even more attention to the potential side effects in the future. At this point, my ankles are a little less swollen and I'm not exerting myself as much. It could also be that I am finally adjusting to the medication change.

I know one BP result is not enough to have low BP and my medication can be adjusted accordingly. I also know I should have picked up on the side effects and associated them to the medication sooner as opposed to stretching to the other reasons for them.

I want to resolve these Migraines that I probably ignored the medication as the culprit so I could keep taking it to see if it is 'the one'. In the past, I've been taken off of medications too soon only to go back on them and have them help for a long period of time. I guess I didn't want that to happen this time. Knowing me, I also need to know why swollen ankles would be a side effect to watch. I should have really looked into this sooner. At least I'm mostly back on track and will make sure I know my medication's potential side effects in the future. Do you know your potential side effects?

Sending Him Off

Why does it always seem to happen when you really don't want it to? I know we don't ever really want it, but it's constantly on those more important days. I knew it had been building up, but then again, how could it not?

I dropped my son off at school today. Not only do I have the gamut of emotions, you know I'm so happy for him, it's the best thing for him, it's where he should be to I'm going to miss him, he's not here anymore, my baby has left, but I also had another whole array of triggers. They always all seem to come at the same time. Why is that?? I not only woke up to the rain, but there were other extra stresses which I'll describe in a little while and of course hormones are around when you don't want them either.

The past few days have been building up. Too much time in and out of too many stores. We did do as much on-line shopping as we could, but you can't get everything on the Internet. The worst store this week was the stationary type store where there are fluorescent lights just above eye level on every single shelf.

We ended up going in many more stores that day and the days to follow. It was also the delicate balance of finishing the packing, laundry, making sure everything worked, the last last minute items and of course he's got to go out with his friends. He was the first of his group to leave so I think that added some extra pressures on both of us.

And then came today. We needed to get to the campus at nine in the morning where we had an hour to check him in and unload his stuff. His roommate got there just after we did so they were unpacking and getting setup at the same time. It was fine except for the part where they kept trying out their light by turning it on then off and on then off and then it they would turn the light sideways while it was on. I think you understand my issue with this scenario, but I stayed calm.

We had a small itinerary to follow and a barbecue for lunch with the parents last event being a freshman orientation meeting. It was really nice and just what I needed to get an idea of what he would be doing at this school. We were going to meet with our kids briefly to say our goodbyes and that would be it.

My extra stresses started when my son moved onto his next meeting without saying his goodbye! After looking around, I saw his roommate who said my son disappeared right after their meeting was done. He found him at their next stop and sent him out for me. It helped, but everything had already begun to rise.

Right after I left and was on the highway with no where to turn, I received a phone call from my son. I could tell he was very upset. The school did not have some of the paperwork we sent in. Without it, he would not be able to practice with his team tomorrow morning. I'm stuck in traffic. No where to go. I'm worried about my son although I know we will make everything better for him. He is facing his first night alone with these huge life changes going on and his one constant is threatened to be taken away from him.

Of course you know the familiar pounding by now. I'd done everything I could to keep it to a dull roar all day long. I was trying to get information from my son and from home only to end up going over the wrong bridge. I have no idea how I ended up going over this bridge. Well, yes I do, but that's why I love GPS because it gets me out of the jams I get myself into when I can't listen to her or follow her directions.

Finally, my son gave me the update that he and the school were able to take care of some of the missing information, but I will need to fax the additional materials tomorrow. At least he shouldn't miss any practices. Phew, but too late for the head.

As I asked earlier, why is it these things always happen when you need to be alert and there for someone else? Someday.