Why am I still awake?

So, it's 5:10 am and I have been awake all day and all night.  Not for work since I've been put on short term disability to rest and rest and rest.

I can blame the latest weather patterns and combined with the start of my cycle the storm of the migraine - constant already - has swollen to massive proportions. 

Thus making it difficult to fall asleep.

I could use my shot which always works to put me to sleep but I only get two a week (Toradol) and I want to save it.  Why?  Because I have a therapy appointment at 9 am this morning and at this point if I fall asleep with meds I won't wake up.  So, I will hold off until after the appointment and then get some rest.

Of course, that means I likely will be up tomorrow night - or tonight I guess. 

I have caught up on some talking with other chronic babes at the forum - http://chronicbabeclub.ning.com - a great forum to share with other gals suffering chronic illnesses - most of all and importantly to lift each others' spirits and share advice - not a site for griping.  Which is good - takes my mind off wanting to gripe about my problems when I am reading and trying to help others with how they are doing.

This was about a month ago, but my son is in JROTC - Raider Team and they took first place in all except one competition at the meet and first place overall.  His team is ranked 1st in their 4 state region and when they went to nationals they took 11th place.  Very proud mama and so glad I got to go to the meet and watch them.

They start the night before driving to the meet - at an army or other military base, then sleep in their bags in a room like a gym - then up at 5 am to get ready and start with PT tests - push ups, pull ups, sit ups, all that jazz.  Then breakfast, then they start the different events - I get there around 10 am because usually first is the 10K and there's not much to see until then and I'm tired to do all day.  So, there's a 10K, a surprise event - generally team building/carrying someone on cot and overcoming an obstacle with time limits, the navigation event, the test of memory for combat medical, the Raider challenge course (oh my - at this last one at the end after 2 miles of carrying rocks in their back packs and 20 pounds of sand on a cot up and over hills and many obstacles along the way and stopping for tests of skill, etc, at the end they put the cot in the back of an army truck and then pull it 50 yards with a rope at the front then take the sand on the cot out then down and up a huge hill!; and there's the one rope bridge which is so fun to watch and another that takes so much skill - here's a video of my son's team at that - http://www.youtube.com/watch?v=67KTTJ1QT_s

They eat army meals from in the field in between competitions when they have time.  My son at the beginning of the day - after the 10K - and 2 other kids on his team gulp some water and then vomit it up and then drink more - while first sergeant says - you didn't work hard enough if you don't puke after that 10K - by the way their team beat 2nd place team in the 10K by 3 minutes and most others by 10 - 20 minutes.  It was the first time they had won the 10K in a while.

At the end there is an awards ceremony where all the teams are their army best at attention.  It is a grueling day - and some of the kids - mine too - have to get up the next day after the bus ride home and work on Sunday at their job. 

I am talking about a grueling day of pushing themselves to the limit.  Amazingly, soldiers on leave from Iraq and Afghanistan take their personal vacation days to be there and judge the events - love our soldiers and love to our soldiers and so much thanks!  These are high school kids going through this.  You know, my same son who when it isn't a meet weekend manage to sleep 15 hours straight and seems like the lazy teen we all know or remember. :)

So, why bring it up in relation to my not being able to sleep due not to insomnia, but due to horrible constant migraine pain - a disability? 

Because it is a marathon and then some.  Because we do go through obstacle after obstacle and then find we have to pick ourselves up and carry the load of our friends/family/stress/work/etc.  And then after that more obstacles and we are pushing and fighting to make our way through.

I am so proud of my son and of all the JROTC Raider teams - they are amazing kids (of course I mean young adults) -

But I am also proud of myself and all I go through and even when I fall and end up on short term disability again (as I have) or feel like I can't go on but know I must keep pushing on because the team - me, my family, my friends - all my loved ones - need me to, I keep going.  I get up and brush myself off and do my yoga and do my meditation and take my medication and root, root, root for my fellow sufferers.

Because I am proud of all of you out there with me fighting the fight - the invisible illness, the pain and the fight with so few spoons left in the pocket for the day, if any at all.

I am not by any means comparing us to our troops overseas, I mean only to compare to the JROTC Raider Challenge Meets these kids do together and all of the other team sports - be it basketball, football, baseball, wrestling or other team sport - or single person sport where these kids pull all their strength to reach a goal.

And that's what we do everyday.

So, without any sleep and it now 6:03am, I will do some yoga, stretch, meditate, go to my therapy appointment and then I will rest.  It takes rest too.  To take care of yourself, to "run the marathon," to fight the fight and keep on keeping on.

So, my fellow pain sufferers - migraineurs or other invisible illnesses or not so invisible - here's to you - we are going to make it and we should applaud ourselves for what seem like small victories because they are victories none the less and keep us going and keep us a beautiful part of this world.

And here's to my son of whom I am so proud!  And also to my other son who is older and out living on his own, learning to work, budget, pay bills, and be a useful and productive member of society as he pursues his dreams.

Love all!
Elizabeth

Been Gone So Long - The Migraine Story Continues

Well, I apologize for being gone so long.  I am a CPA and it was tax season.  Per doctor's orders I was only to work 40-45 hours/week but then I got some reprimand that made me fairly sure that my job was at stake if I didn't "step it up" so I ended up working 75 hour weeks and my migraine is very angry about that.

This week my doctor put me on short term disability to try to get the rest I need to try to get back under control.  So far, the pain hasn't let up and I am not doing well.

I know logically and truly that things will work out and I will get better and find my way.  However, I am pretty depressed and angry at myself for not being able to overcome this obstacle - this migraine.

I have had SO MANY obstacles in life so far, and I have overcome them all or hurdled them and become successful.  I have had this migraine since January 2008! and I have worked SO hard to overcome, to live with it, to be able to manage it, to hurdle it.  I've had migraines almost my whole life and was having them up to 5 times a month - 3-4 days in a row, and I hurdled that.  In 2008 I realized that I was going to have to adjust my definition of success and back down for my health now that my migraines had become a disability.

Without having worked, I took a shower and couldn't even get to shaving my legs before it was too painful, I got out and laid down and then got up and then fainted - my NCS - and then laid there for 1/2 an hour, and then got up and it hit me again - took me over an hour to recover from a short shower.  It was the same while working so I guess I'm not rested enough yet.  This is a true disability and this is just one example of how my disability has disrupted my life.  When it takes more than 5 spoons just to shower!

It has gotten worse and worse and now I am finding I can't overcome this and I can't hurdle this.  The migraine disability is winning and I am SO mad at myself for this.  I feel like a failure.  I know I am not and my doctors have told me that they are so proud of me and how hard I have fought.  But, that I need to rest and let go and stop fighting so hard.  I know that things will work out but for a little while I need to be depressed.

I need to be able to mourn the loss of my dreams, even my watered down dreams.  I will make new ones and I will survive and be successful in another way, a new definition.  I will be okay.  But, please give me time to mourn.

To everyone out there in my situation and those in similar situations or facing trials of your own.  Be strong, know that "This Too Shall Pass" and keep dreaming.  But, also give yourself time to mourn and to feel your feelings - just don't let it go too long so you can pick yourself back up.

I'll pick myself up and will be strong, after my mourning period.

Love and good luck to all - more later and not as long this time!

Getting older

Doesn't it just bug you when little things remind you that you are getting older?  Me too!  I am happy thinking of my age as a hypothetical - not something I want to think about and I can just go with what age I feel like.  But, when something reminds me of my age and that I'm getting older, then I start thinking about money and if my health problems will get worse, and what other health issues may arise, etc.  As well as thinking, I don't want to get older.

Reminder the first recently - my 21 (YES 21) year old son just moved out to his own apartment where I co-signed the lease.  Move out?  I can't pretend he's younger and so am I if he moves out on his own.  Plus I miss him and miss having my baby boy - so long ago that he was 6 and dressed as Batman or 10 in Tai Kwon Do lessons on my old home videos.  He's grown up means I'm grown up even more!

Reminder the second recently - my youngest son, my baby, is turning 17 (YES 17) on Monday.  Starting college a year and a half from now!  I miss my young children.  Yes, I know the purpose is for them to grow up and realize their dreams and be independent and I want that for them.  But, how did it happen so quickly?  It was just yesterday he was 4 and convinced that St. Patrick's day (his name is Patrick) was a holiday that was created just for him and wouldn't be swayed (I folded and bought him a present, I kept explaining that St. Patrick Day was named for a saint, but he responded "yes, I am really good" - gotta give in to that).  So, I work on finances for his college tuition coming up and worry if he'll be happy and make good decisions.

Funny story - my 21 year old said when he came back after having been moved out a week that he thought my migraines would improve after he moved out?  I never knew he thought he was a factor in that?

So, I am getting older and am budgeting savings, retirement, debt, etc.  As a CPA, I am great with a spreadsheet and budgets and actually enjoy working with them - better with someone else's numbers - so not all that bad and I'm in bad shape due to health costs on me but not as bad off as others are so I have to be thankful.

How much longer till I cannot work?  Well, last week, my neurologist said that if we don't see improvement then sooner or later they will require I go on disability and reduce my work to half time or less or none.  So, that's a worry. 

Then, I think maybe age will improve my conditions?  Some women after menopause see an improvement in their migraines?  But, I know too many who don't.  And then, my neuro talks about the white matter building in my brain from constant pain and increased risk of stroke as it continues.  Perhaps that means I need to save quicker and be more efficient to retire sooner to lower the risk?  Since I can't seem to stop the pain and it's primarily caused by stress.

Then, there's the fact that due to my disability, my career growth has been stunted.  I do well where I am but the company won't promote me or grow my career so my income is going to flatten.  Change jobs?  Change their minds?  Possibilities, but I'll worry about that later - just not too much later because the clock is ticking.

One thing I do know, every woman in my life close to me - friends and family - say the 40s are/were the best years of their life.  So, I am not going to be afraid of the number.  I adore my friends and family and my incredible husband who takes such good care of me - and me of him financially (for now) since he's an artist and I'm the breadwinner.

I hate my pain but I am happy with my life and I want to remember my life and events not being taken over by the pain.  That's the task, changing that - since right now the pain is in control. 

I still have good times.  A great memory from recent is last November seeing 75 year old Leonard Cohen in concert just after our wedding anniversary (one of his songs was our first dance song).  Seeing one of the greatest poets and writers of our time perform flawlessly and incredibly and skip off stage for 4 (YES 4) encores.  so, I have to say, age doesn't stop everyone.  Love you, Leonard Cohen - You are The Man.

I do want to talk more about my IV therapy and other things that I think are going to help, but want to see how they play out first.

Love and hope for pain free days for you as always,

Elizabeth

Awards Season

So, it's awards season for the movies of 2009.  And I am way behind in seeing movies and being ready.

Backup - I love awards season and the awards shows.  I know a lot of people don't care for them or think they don't make good picks, etc., but I think they are fun.  Especially the Oscars.  I don't always agree with their nominations or the choice for winners either, but still love to watch and discuss.

Every year since 2004, my friend and I have hosted an Oscar Party.  It is so much fun to get ready for it as well as the party itself.  We are both accountants and it's a time to be creative.  We make a poster of the nominations in major categories including pictures of actors, directors both in character/job and as normal - it's neat sometimes to see the difference in character pictures vs their actual appearance - and give descriptions, how many times nominated and for what films, etc.  We also make a poster board of every movie nominated in every category and give people stickers to mark what movies they've seen - we give a prize to the guest who has seen the most nominated films - some people come thinking they haven't seen many and then realize they've seen a lot more when they count other categories like song, sound, and other technical categories.

Then there's the display, for each movie nominated for best picture we do a food dish that relates to that movie in some way, a picture of the poster for the movie and also other displays/props that relate to the movie.  To do this, you have to have seen the movie!  This year they will have 10 rather than 5 best picture nominees which will be a huge jump and a lot more work - we've thought about giving certain guests the chance to bring their own food/display for 5 of the nominees so we only have to continue with 5 ourselves.  We also do the ballot game, having everyone fill out ballots and then give prizes for most picks right and sometimes a prize for least picks right.  I think we are eliminating that one this year because we found some guests were trying to lose and that's a waste of the money we spend on the prizes.

Anyway, my point is that by this time I have already in the fall made a list of movies I think have a chance of nominations and seen as many on the list as they come out and then when the other awards shows nominations come out, adjust my list as necessary and the movies I need to see and have some ideas for props/food/display for what I think may be a best picture nomination.

Due to my migraine disability being so bad lately, I am nowhere - not even step one, nor have I seen very many movies.  I love this time of year partly because of what I do to get ready for it and because it causes me to see movies I may have passed up seeing otherwise and then end up being a movie I love so I am so happy that the awards season got me to see the movie - even if it didn't end up with a nomination.

I have seen a few movies that are being talked about, and I need to feel grateful for that.  I can't help that going to the movies is more painful than it used to be or causes me to be worse off for a while painwise.  I need to be patting myself on the back for what I can do and not beating myself up for what I can't do.  Sure, I usually am at the top of the list, if not top, of having seen the most movies (not that I get the award, it goes to a guest) but that just won't be this year and I have to get over it. 

I am thankful my son and I saw Avatar on Christmas Eve.  It's nominated for a Golden Globe as well as Inglorious Bastards which I saw in September.  And Hurt Locker is on InDemand so I can watch here at home.  So, I am on my way a little. 

I am going to look forward to the awards shows and our Oscar Party and not feel down about my situation being different than other years.

One thing though - we switch every year whose house we have it at and this is my year - have to enlist hubby's help in getting the house ready and really cleaned up for it.  Don't have the energy I used to and have to take lots of breaks.  But, I know this so I will start earlier than usual and take breaks and ask for help.

Good luck to all the nominees at the Golden Globes tomorrow night (or tonight now - its 2:20 in the am).

I have trouble sleeping with the pain and so my sleep schedule is a bit awry.

I will not let my migraine disability control me and my ability to have this enjoyment!

Best Wishes for a New Year

Well, it's been a long, long time since my last post - September 2009 - and it is now January 2010.  No, I didn't get bored of this or tired of it - I was and still am in a bad way, in a huge slump.  I didn't want to post and haven't been using Twitter much either lately because my health, my migraines - the constant, unrelenting pain - has gotten to me. 

I try to be upbeat and project positivity, but was unable to for awhile, and maybe still. 

I did not want to post depressing or hopeless feeling posts where people would feel sorry for me or feel the need to comfort me.  That's not why I started this.  I do appreciate all the well wishes and all the comfort that has been offered to me and won't turn it away.  But, I started this to write about my feelings about my illness, how it's going and to be upbeat.  Sometimes just writing about it helps me to think more positively and that wasn't possible for me for awhile. 

Like I said, maybe not yet - but let's see.

The pain has gotten worse - or more correctly - I'm feeling it more and less able to separate myself from it.  It's been constant for two years now along with ringing ears and feeling faint and all the other drama.  I was able to still see myself through it - like point to "that's me" and "that's the migraine" - but when I look for me lately, I can't see through the pain to me. 

Even in looking for words it's like my brain synapses fire off to find the word I want to use and they get stopped by the pain and have to reroute and reroute and reroute to find a way to the other connection - the word.  So far, for the most part, eventually I find the word - the synapses connect.  But it takes longer and I can feel it's the pain stopping a faster connection.

That's hard, I miss me, my husband misses me, my children somewhat miss me (21 and 17 yr old boys have a lot of other things on their plate), my friends miss me, my family misses me.  Even when I'm right there, they can tell I'm not - that it's pain me, no separation. 

I hate that so much because before even though the pain was the same and constant I could see me and so could others.  I know I'm in here!  Now, the pain has increased and my doctors have increased some meds in December to combat that - some medications, adding a magnesium oil to soak through my skin, some straight up IV fluid just to hydrate me, some electrolytes to help hydrate me.

I see my acupuncturist who is incredible.  He told me last session as he walked out afterward, "don't worry, I'll never give up on you."  So I cried because it was just what I needed to hear - from a medical person.  I've heard the same from my neuro but not lately.

Had a suggestion from my narcolepsy sleep doctor and then my neuro that perhaps I try some medication that I refused.  It would take the last bit of control away from me.  They argued that don't I feel out of control now and I said yes, but not like that would make me feel out of control.  Upon telling my neuro some personal info she backed off and completely understood.  I'm not mentioning the medication here for two reasons.  One, I don't want anyone to suggest I try it anyway and two, I don't want to start a controversial conversation on the subject. 

It did make me think more about control.  What I've given up and how much I have left and how to hold on to it and make it grow.  I still don't know the answers to these questions yet, but it's a good and healthy project.  I'll let you know how it goes. 

My husband misses me so much he told me he's lonely even though we spend time together - he wants me.  He wasn't trying to hurt me even more although I did cry which angered the migraine monster so I did hurt more.  He was just needing to express his frustration at my disability.

I do not want to go on disability.  I have been allowed a reduced (for my profession as a CPA that's 40-45 hrs a week) work schedule and work almost exclusively from home.  I'm a great worker and great at my job but it takes longer, more thought, more patience with me and by me to get it done, then it's still a great product.  I work mostly on highly technical research and international tax issues.  I am able to do that so much easier from home because I am dealing with being a consultant to the consultants rather than dealing directly with clients for the most part.  I work with the clients but am not the client manager so that relieves a lot of burden.

I have to keep working and keep providing for my family.  That's the fight my pain and I are having.  That's the fight my disability and I are having.  I am going to win.  As long as I set boundaries, keep the boundaries, respect my disability, continue to get support from work and home, and find myself again.

One quick note on the magnesium oil, it does seem to be helping.  I take so many meds for so many conditions and not as many meds as I do supplements and vitamins and the pain is making it hard for my body to absorb it all digestively - the magnesium oil combined with water and sprayed on like a lotion and rubbed in helps get the magnesium and more hydration in through my skin.  I will say my mood has improved since starting it and a thank you to my acupuncturist for sending me to buy it.

So, Best Wishes to You All for a Happy New Year and for me to find me again.  If you see me let me know.

30 Things About My Invisible Illness You May Not Know

I suffer from more than one chronic invisible illness - and more than two - but I will focus here on just two: Chronic Intractable Migraines and Hypothyroidism


I'm torn because I also suffer from NCS - vasovagal syncope, a form of Dysautonomia, that also greatly affects my life, but I will leave that to my post on my most embarrassing public fainting episodes, see earlier post on this subject.



Support National Invisible Chronic Illness Week - September 13 - 20


30 Things About My Invisible Illness You May Not Know - Chronic Intractable Migraine
1. The illness I live with is: Chronic Intractable Migraines - constant
2. I was diagnosed with it in the year: migraines technically diagnosed 10 years ago, Chronic Intractable Migraine about a year and a half ago
3. But I had symptoms since: I was in my early teens
4. The biggest adjustment I’ve had to make is: adjusting work environment - I now work from home, lighting, learning to say no and learn and live with my limits - I may have to say no at the last minute.
5. Most people assume: I have a headache or wearing sunglasses because I overdid it
6. The hardest part about mornings are: Waking up and realizing the pain is still there
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My computer
9. The hardest part about nights are: Trying to fall asleep when the pain wants me keep me awake and then taking meds and falling asleep too soon and missing time with my husband.  Not getting a good nights rest even when I sleep.
10. Each day I take 23 pills & vitamins. (No comments, please) - plus monthly B12 shots and 2X a week Toradol shots
11. Regarding alternative treatments I: have tried almost everything, acupuncture, migraine massage therapy, homeopathy, physical therapy (multiple), chiropractors (multiple), essential oils and herbs, diet restriction, toxic cleansing, other strange things people suggest to me, sleep doctor and sleep study, therapy
12. If I had to choose between an invisible illness or visible I would choose: invisible so I can act fine and not be asked too many questions if I want to remain unnoticed - although then there is less awareness and more misinformation that floats around
13. Regarding working and career: I have had to cut back my hours, change my environment to suit my illness and abilities - things I can do - work has been supportive with me - I'm a CPA and now do mostly technical research and consulting and international tax planning without the daily grind of deadlines.  I have kept some of my deadline clients that are less stressful and mean a lot to me and international clients.
14. People would be surprised to know: That I am in pain 24 hours a day 7 days a week - I don't get a migraine every day - the pain never stops.  But, I am able to hide it and excel when I need to for work or family and then crawl back in my cave and huddle up and cry afterwards.
15. The hardest thing to accept about my new reality has been: That I can't do everything I had planned to do and that I can't plan to do things without knowing I may have to back out.
16. Something I never thought I could do with my illness that I did was: Transform my job duties - career - into something I enjoy so much more than what I was doing before - technical research and international consulting and helping others by being a consultant to the consultants.
17. The commercials about my illness: Are Grossly inadequate and make it seem Way to easy to just take a pill and get over it - hence others think I should be able to do that.  Way underestimate the debilitating nature of my illness.
18. Something I really miss doing since I was diagnosed is: Going out with friends anytime at the drop of a hat and dancing long into the night!
19. It was really hard to have to give up: My desire to be everything to all people at work and home and mourn the loss and learn to live with my limitations.
20. A new hobby I have taken up since my diagnosis is: Blogging - which has been such a great release for me!
21. If I could have one day of feeling normal again I would: First, beg for more time, then spend the entire day doing things with my husband outside, zoo, museums, parks, shopping, then going out and having a meal and a few drinks and spend time - quality time - together! - If I had more time, we would do these things in London instead of here in KC.
22. My illness has taught me: That I am more than just my illness, and to live life to it's fullest and not waste time feeling down (although I succumb at times but for a short time) about it - look to what I can do and how I can still be a great benefit to my family, job and society.  And that insurance is something everyone should have access to and going into debt for illness sucks!
23. Want to know a secret? One thing people say that gets under my skin is: When people say I saw this commercial or ad that says if you try this product it will cure you - have you tried that?  Or anything where someone talks about a "cure" because it isn't there.
24. But I love it when people: Tell me they are thinking about me, praying for me or just listen to me and ask if I need anything.
25. My favorite motto, scripture, quote that gets me through tough times is: from my Grandma (although she got it elsewhere) THIS TOO SHALL PASS
26. When someone is diagnosed I’d like to tell them: Find a doctor or better yet group of doctors who will continue to work with you and never give up on you - find support and don't believe it when people say it's just stress and you could get over it if you tried harder.
27. Something that has surprised me about living with an illness is: There are so many stories just like mine - I'm not alone!  And I have great doctors who won't give up on me.
28. The nicest thing someone did for me when I wasn’t feeling well was: My husband cooks me dinner and calls me to remind me to eat.
29. I’m involved with Invisible Illness Week because: We need more awareness and to get more information for myself and how to deal with my life like this.
30. The fact that you read this list makes me feel: Happy and relieved because you know how I feel.

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

30 Things About My Invisible Illness You May Not Know - Hypothyroidism
1. The illness I live with is: Hypothyroidism
2. I was diagnosed with it in the year: I was 23 - so 1994
3. But I had symptoms since: I was a teenager - I was misdiagnosed as depressed for many years because I was thin and didn't fit the profile - took being put into a psych ward where the test was routine and came out so drastic they moved me to another ward to take care of me and it was a teaching hospital so many students came by to look at me - normal TSH level is 1-5 - mine was 450, they said they didn't know how I wasn't in a coma.
4. The biggest adjustment I’ve had to make is: taking a pill everyday, having routine blood screenings and watching out for symptoms that my thyroid has gone haywire again.  And that effect on my other illnesses and effectiveness of medications.  And my hair thinning and shedding and whispies that look like bangs - like a receding hair line.
5. Most people assume: I'm not hypothyroid because I'm thin.
6. The hardest part about mornings are: Being overly tired and hard to wake up
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: Computer
9. The hardest part about nights are: falling asleep when I don't mean to and being cold all the time
10. Each day I take 2 pills & vitamins. (No comments, please) for this illness - see above for items taken for Chronic Intractable Migraines - this is just synthroid and Dulse Liquid
11. Regarding alternative treatments I: have gone to different endocronologists and found many to be arrogant and rude - my GP takes care of my thyroid and has done research and stays up to date to help me and he is very kind.
12. If I had to choose between an invisible illness or visible I would choose: Again, see above, invisible b/c you can hide it when suits your needs for career purposes or family needs
13. Regarding working and career: See above
14. People would be surprised to know: How drastic my hypothyroidism is - most people are diagnosed with TSH levels of around 20 but mine when in trouble never stays that low is from 150 to 280 - except my first diagnosis which was 450.  I could die if I wasn't treated.
15. The hardest thing to accept about my new reality has been: dealing with ups and downs of my thyroid and how it affects my other illnesses and medications.
16. Something I never thought I could do with my illness that I did was: Have the career I do
17. The commercials about my illness: are nonexistent
18. Something I really miss doing since I was diagnosed is: I don't know before I was diagnosed, I was really sick and depressed, so I'm happier now.
19. It was really hard to have to give up: Nothing
20. A new hobby I have taken up since my diagnosis is: Nothing other than above
21. If I could have one day of feeling normal again I would: See above
22. My illness has taught me: Our bodies are very fragile and a good doctor is an incredible key to life and happiness - one who understands and listens and is patient.
23. Want to know a secret? One thing people say that gets under my skin is: Why is your hair so thin and Do you have bangs? Most notably - Hair Dressers!  No, I have thin hair b/c I can't help it and it all falls out and those are whispies, not bangs.
24. But I love it when people: Compliment me on my hair even though I know it looks bad
25. My favorite motto, scripture, quote that gets me through tough times is: Again, same as above, This Too Shall Pass
26. When someone is diagnosed I’d like to tell them: Research your illness from many sources don't just rely on one or just your doctor, be a part of the discussion on your illness
27. Something that has surprised me about living with an illness is: See above - finding out you aren't alone.
28. The nicest thing someone did for me when I wasn’t feeling well was: See above - just a hug is nice sometimes.
29. I’m involved with Invisible Illness Week because:  See above, spread awareness
30. The fact that you read this list makes me feel: Happy and relieved you know more about me.

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

I miss my life

I remember dancing, parties, staying up late.  I remember having a life. 
I remember a career where there were no barriers to what I could accomplish.
I remember being outside for hours and hours enjoying the day.
I remember concerts and loud bars.

But, my illnesses have always gotten in the way -
I remember migraines on my honeymoon.
I remember sleeping all the time and not being able to stay awake to play enough with my kids when they were little.
I remember fainting at concerts, plays, out with friends.

I miss being able to spend quality time with my husband.  We still do but my illnesses get in the way and he worries about how I am or if he is pushing me to far.
I miss traveling - mostly reduced now because of medical bills putting me in debt rather than the illnesses themselves.
I miss having conversations with my friends about love, life, and the world where it doesn't come around to them wanting me to update them on my latest progress or unprogress with my migraines.
I miss having something to say that didn't end up being related to one of my illnesses.

But, I am grateful -
I am grateful for my body forcing me to slow down and start putting myself first.
I am grateful for my doctors who won't give up on me no matter what.
I am grateful, immensely, for my husband who takes such excellent care of me and loves me so much.
I am grateful for my acupuncturist and migraine massage therapist that give me a few hours of relief.
I am grateful that my family is so caring and understanding.
I am grateful that my children, now almost grown, are such incredible and caring people.
I am grateful that my work allows me to work from home and continue my career.
I am grateful for all the friends I have made that have conditions of their own that help me not feel alone.
I am grateful that my friends care enough to ask how I am doing and that they never judge me.

My life has changed, but wouldn't it have anyway as I grew older.  Less parties, concerts, etc are bound to happen.  Changing relationships with your children are bound to happen.  Everyone makes mistakes and wishes something was different about their past or about their lives. 

I have been able to do more of the work that I have wanted to do because of my illness changing my career path and gave me the gumption to ask for the job description I have now - with less stress and more research and consulting - more international tax consulting and less day to day the same returns.  I love constant learning and becoming better and now a lot of the other monotonous work is out of the way - thanks to my illness and thanks to my doctors who insisted this was the only way I could work - that or disability.

I cherish times when I feel better and am able to do more, go shopping, hang out with friends, etc.

I go through ups and downs where I feel my life is over to where I am grateful for what I have and see benefits to my problems.  But, doesn't everyone have their ups and downs?

Three things I want to focus on changing to make my life better -
1) Getting my friends to think of me as more than my migraine and talk to me openly about their problems and talk like we used to.  Solution?  I've tried to tell them, but they care and want to know and it takes so long to update them, it turns into our entire time.  I've tried to not update them and they are hurt by that.  Maybe a good solution is a weekly email to all saying this is where I stand right now with my condition, now, you have the info, so when we talk, let's talk about other things.  Sounds like a good idea, I'll put it in motion.  I still will complain on twitter to my #spoonies to get support there but will also try to be positive and upbeat until I hit a major downspell and even then my friends will get to listen to me complain.
2) Spending more quality time with my husband.  Make more of an effort.  I have let things slip in our marriage that it's more about taking care of me then a two way street.  Now, I am the breadwinner, so I do my share bringing in the $ and that is taking care of him in a way.  He's an artist and I'm a CPA so he brings in wonderful things and interesting things and I bring in $.  I need to be there for him in other ways.  Don't get me wrong I try very hard right now but I can't get him to open up a lot of the time because he worries that we should be focusing on my pain and not his needs - that he'll be fine and doesn't need to talk, etc.  Enough of that - I have to be more forceful and despite my pain make efforts to do things with him even if it increases my pain for a time.  He has opened up that he sees I can pretend, very well, to clients, work colleagues and friends that my pain is not as bad as it is, but with him I open up.  Part of that is that he is my comfort.  But, and I don't want to lie, I need to give some of that to him.  I'm in pain but we are spending time doing some of the things you want to do and ignoring the pain for a little while.  I need to do this daily.  I love him and he deserves a wife.
3) Learn to say  no and get in control over the stress factors in my life.  I seem to like the part of work where things have to get done and done now and it's really important and all that stress.  But, I don't like the increase in symptoms or the let down from stress migraines - I have to have control first.  I can work on challenging projects and have reduced stress if I take control rather than letting the work take control.  I can't take on the stress of my colleagues and let my guilt and wanting to help them and ease them get in the way of my health.  I have to put me first.  I need to set boundaries and protect them better than I have.  I have to feel accomplishment for what I do and be proud of that rather than searching to please everyone more.  I do a great job and that's good, great enough.  I don't have to be perfect or solve everyone's problems.  Every morning I will say to myself "I am in charge of my schedule and I won't take on the stress of my colleagues.  I will accept the projects that fit in my schedule reduced as it is by my illness and will not feel like a failure or like I am letting people down.  That will only in the end let myself down.  I will put myself first - and remember the job I do is not life or death." 

I will continually have to come back to my thoughts and re-commit to my plan over and over.  I have to accept I will backslide and cannot blame myself for that.  I am ill.  I will cherish and pat myself on the back for the accomplishments I do make.

I will continue to grieve my old life in some ways and sometimes but I will not let that grieving continue to take a front seat.  I will focus on what my life is and will be and the joys and wonders that are to come.

Here's to all of you out there dealing with your own illnesses and problems.  We are stronger than we think we are.

Much love,

Elizabeth