The ice pick in my eye

I have had migraines since I was little.  I remember having "sick headaches" in grade school.  Looking back, I realize now they were migraines.  My mom and brother have them but no where near the degree I do.  My cousin on my mother's side has them pretty severe and I pretty much take after her.  I have a headache every single day now.



This is what I feel like is stabbing me through my right eye. It's always my right eye.  I am sensitive to sound, light, I will throw up, I will feel my eye lid start to droop.  I don't get auras but I do get flashes if I let it go too long.  All I want to do when one hits me is lay down in a dark room, take a vicodin and sleep.

A few years ago I finally saw a neurologist, he told me I was having "rebound" headaches on top of migraines.  He took me off of all my meds and put me on Topamax.  A few things happened, 1) I lost 40lbs in about three months 2)  I couldn't drink anything with carbonation immediately, the following day, and haven't since {6 years!} 3) I suffered all the side effects but they finally dissipated  after about 6 months, except for the carbonation issue and weight loss.  BUT the best part was my headaches decreased greatly and stayed away.....till last year. 

I started to have headaches again, I lived in denial again, thought it was the weather, thought it was stress, thought, thought, thought.  Finally my dr said "enough" and doubled my dose of Topamax.  It worked for one week....but the difference is I am on generic where before I took name brand.  I am going to try and go back to name brand and see what happens.  I wouldn't wish these on anyone. 

Bulldogs make me laugh

Today on the Detroit Bulldog Rescue facebook there was an adorable white/deaf bulldog who is looking for a foster home.  My older boy is deaf so I'm used to dealing with this now, even if we do still talk to him and yell at him (Mugsy, come upstairs!) old habits are hard to break.  But since we already have 3, he won't be coming home to us.

I did want to share one of my favorite Tumblr sites though http://textfromdog.tumblr.com/   I follow him on Twitter, and he has this blog now, hilarious, especially if you love bulldogs and have experience with them.  May I just say, I am glad I don't have curtains in my house!

Froggy

Meet Froggy.  Also known as a Milwaukee Brace.   These are worn for Scheurermann's Disease, something I was diagnosed with when I was about 12.  I wore a brace similar to this every day for 23 hours a day for 2.5 years.  My friends and I nicknamed him Froggy because when it was sitting on the floor, the two pads that fit at the base of my skull and the one under my chin, looked like a frogs eyes and tongue.

This was traumatic to wear.  Growing up with a skin disease wasn't.  This had grown men and woman staring at me.  This had people calling me cripple.  I couldn't sit in a bucket seat car, my body would slide down, but the brace would slide up and strangle me (slightly funny but painful). 

BUT wearing this brace was the best thing to ever happen in my life and I wouldn't trade it for anything.  I learned how to be compassionate to others.  I learned to laugh at myself, how to help people be comfortable with uncomfortable things and how to get out of class, a lot!

I wore this all through my Jr High life.  Every single hour, I would say I needed to adjust my brace and I needed my friend to help me.  So I had an open pass for +1 for the whole year, and I would just go to the class room of one or the other of my friends and we would take off for the hour.  Mind you, I could get in and out of the brace all by myself in 2 seconds!  As a matter of fact.....I got my brace for the first time right after my birthday in July.  My mother worked part-time and was gone all day from about 9am to 4pm.   As soon as she would leave, I would tell my brother I was going to my friend Sandy's house.  As soon as I got to Sandy's, that brace was OFF!  Then, around 4pm, brace would go back on, I would go home, Mom would get home and I would say to Mom brace was on all day, can I take it off and go swimming?  Well, the first check up at the dr comes up and I have my Xrays....the curve in my spine is 4 degrees WORSE!  BUSTED!  I honestly thought my Mom was going to kill me that day.   She said "when you're dad hears about this...."   One of the other things that happens at the check ups at the dr is they adjust the brace, so you would get a prescription and have to go to rehab office and they would either fit you for a new mold or adjust the pads on the back or move the bars, or whatever.  Well THIS time, they added a new bar, for a padlock, yes, a padlock.  My parents padlocked me into the brace.  They figured if I couldn't be trusted, then they would make sure I couldn't get out it.  

I recently was at a spinal clinic for my arthritis and had told the dr this, find the story amusing myself, the dr was thoroughly offended.  "How could your parents lock you in a brace!" and I thought "don't you get it? I was being a little brat! I deserved it."  

I was only locked in it for 3 months.  The next dr visit my back was improving and they actually had to change the mold so I had to get new bars, they didn't add the padlock back.  I learned my lesson.

There were some things I hated about the brace. I always had to wear a t-shirt under it or else you would develop horrible rashes, and sometimes even that didn't help.  The part under the chin would cause rashes in the summer, we would line it with mole skin, but that didn't help and I would always walk around with a handkerchief folding up and hanging under there.  The rashes were miserable.   I couldn't bend at the waist, ever.  So you learn how to compensate but picking things up off the ground was always an adventure.

One time we were playing basketball in the gym at lunch, myself and another guy were running to get the ball, another guy from another court was running and didn't see me, we collided and I ended up on the ground flat on my back, he started yelling "I KILLED HER, I KILLED HER" freaking out.  That just made me laugh harder and I looked like a turtle trying to get up.  Finally a friend came over and grabbed the front bar of my brace and yanked me up, again, sending me into laughter. 

Oh and that was the funniest part, people treated me like I was piece of porcelain when in truth, all you had to do was grab a bar and yank and I was coming with you anywhere.  One other girl in my school ended up getting a brace after I did, we became brace buddies, she and I would walk up to each other, grab our front bars and just shake each other.  Talk about whip lash!   My friends know I am ticklish, so they would take a pen and run it down my spine between the bars and watch me scream and jump.   Oh god, and don't remind me about getting an itch under all that plastic mold.  UGH the worst.  I would start hitting myself in an effort to make the brace move so the itch would get some relief. 

One night, I fell out of bed, the space between my desk and bed was just the right size for my garbage can, and garbage can, just the right size for my head.  My shoulder went under the bed and the other was against the corner of the desk, and because of the brace, I couldn't slide down, roll over, or sit up.  I ended up dozing off again.  My brother found me that way when he came to check on me and why I didn't get up for school.

As my back got better, the hours I wore my brace decreased.  From 23 hrs a day, to 20 hrs, to 18 hrs, to 15 hrs, and so on.  When I was just about to enter HS it was down to 8 hrs, so all I was doing was sleeping in it.  The duckling was about to become a swan.  I went to the dr for my check up and he said "no more brace for you" and I said "what? I thought you were gonna say every other night?" and he said "No, you are done, I don't need to see you again."

That night, I slept with the brace on one more night.  I didn't know how to sleep without it.  To this day, my Mom still laughs at me for that.  But I did sleep without it the next night.  That brace stayed in my room for week before I put it away, but I wouldn't let my mom throw it away for 8 years.  She didn't understand why I couldn't part with it.  The funny thing is there are only 2 pictures that I know of of me in that brace.  For all those days and nights in Froggy, and only 2 pictures.  Such an impact, never to be forgotten.

Growing up with Psoriasis

I often get asked, what was it like growing up with P(soriasis)?  To be honest, I have always had it, I don't remember life without it.  When I was 5 years old I fell off my bike and cut my elbow, it never healed right, that was my first patch of P.  My pediatrician always treated me till I was in my teens.  Back in those days, there wasn't much treatment available, I used steroid creams on my spots.  I had HUGE spots on my legs, arms, back, torso, stomach, butt.  The few areas clear were my hands, feet, and face.  I had most plaque P, it looked this is but it would get white scales on it.  (note: This is not me, but pretty characteristic of the size and redness of my knee and leg spots.)



Guttate P is smaller patches of P, more of a tear drop shape, more wide spread and it tends to cover a wider area.  I had this on my upper arms, across my back and sometimes my upper legs. 



So some of my FAVORITE treatments:

Occlusion therapy: This consisted of Mom putting on my ointments (it was always ointments, ewww) and then wrapping me in plastic wrap and taping it on.  I would then sleep in this for the night.  The thought behind this was the medicine wouldn't rub off in the night on my PJs or sheets and the meds would soak into my skin.  The result, I would wake up with plastic wrap bunched up around my waist like a belt, talk about uncomfortable!!!  And for the areas that didn't bunch up, I would have that wet band-aid white skin, moist feeling and have to cut off the plastic wrap.  Sometimes, the wrap would be stuck on like a second skin, and I would miss a piece, usually around my calf, so I would get to school and be changing for gym and find a piece of plastic around my ankle.  Yep, that lead to some interesting conversations.

Tape:  At some point, a drug company came up with the idea of putting the medicine in a tape and every night, Mom would again, cut up pieces of the medicated tape and apply them to my spots.  And this crap was expensive!  My mom was the champion of making that tape last, she would cut some wild shapes to get it to fit my spots.  As before, I would be in school and find pieces I missed to pull off before I go into class.

Air pressure shots:  A device of pure torture!! Imagine a doctor who looked at you like target practice, every other week!



My doctor would sit back and see how far he could shoot me from.  I am not kidding.  I would then have the medication puffing up my plaques, bleeding, and feeling like a bruise and him saying "that wasn't bad was it?"  That lasted about a year.


The UVB Light Box:  This was probably the easy and most entertaining.  I would put on coal tar the night before (it heightens light sensitivity) and then stand in the box for about 5 minutes or so the next morning.  BUT being a kid, those cute little goggles you are supposed to wear?? Yep, I would take them off and screw around in the box.  Now, I have trouble with extremely bright lights, I basically damaged the rods in my eyes.  Thankfully I didn't go blind (don't know if I really could have) but I did do permanent damage, I have prescription sunglasses that are black black black, I have to wear sunglasses on cloudy days because even those those have a glare that cause problems for me. 

So which treatment worked best???  I couldn't tell you.  I think all of them worked to some extent.  Everyone reacts differently to different therapies, what works for one may not work for another.

What do I do now?  Nothing.  I use tropicals sometimes, I am basically in remission.  I break out when I am ill or stressed out so those are the two things I work hard to avoid.  I am not a germaphobe by any means, but in the winter, I use a wet wipe to clean the shopping cart, especially right after school starts, kids are little germ factories.  I take time for myself, I love to read, make jewelry, play with the dogs, etc.  so I try very hard to keep relaxed.  I also keep moisturized.  I can't stress that enough.  I keep 3 types at my office.  Moisturizing prevents me from scratching, and I will scratch until I bleed if I itch.  In the winter, I will take a bath with bath oil in it, than after I get out, I will apply the oil to my skin to stay moisturized.  I never shower in the winter, only baths, and only 2 a week tops.  Summer is a different story, your skin doesn't need the same moisturizers.

Bulldogs and other things

I have 3 bulldogs.  They are all rescues.  First came Mugsy. 

He was adopted at about 4 years of age.  He was found on the streets of Detroit, had a bad skin condition, was about 20lbs under weight, and just all around neglected.   My husband loved him on sight and we adopted him. 

We had him for about a year, then I said "he is lonely, lets get another dog" and we adopted Layla.

She was also about 5 and she was my girl from day 1.  She slept in the bed with me, is the best girl in the world and I love her dearly. 

We were a happy house of 2 dogs, 4 ferrets, me and hubby. 

In Septemeber of 2009 I lost my job.  To put it mildly, I got depressed.  Hubby is on disablity, we were surviving but it was hard.   The rest of the country was in the same situation that I was so I wasn't feeling sorry for myself, but I was depressed.   After a few months, I decided I needed to do something to knock myself out of the this funk, so I started to help out more with The Detroit Bulldog Rescue, where we had adopted Layla from.  I had already set up their website for them (http://www.detroitbulldogrescue.org/) and one day they posted on facebook they needed someone to pick up a dog in a city that I was close to.  I drove out there, not know what to expect but thinking that almost all the dogs that come into rescue are older dogs, mellow dogs.....

NOPE! Not this time.

Meet Moo, the Demon child!  She looks sweet doesn't she?   6 months old, she has a heart conditon and the owner was getting rid of her.   On the ride back to my house, she knocked my car out of gear, while I was doing 70 mph, knocked the steering wheel out of my hands, while I was doing 70 mph, bit my face jumping at me, while I was doing 70 mph, bit my arm, while doing 70 mph, chewed on my hand, while doing 70 mph, All during a massive thunder storm.  

The next day, after her journey, I decided to take her for a walk since she was full of energy.  As we rounded the corner of my block, the dog across the street barked and she stopped dead in front of me, sadly I didn't realize this and I proceeded to trip over her and fall flat on my face, managing to sprain my hand and wrist horribly, breaking my glasses, scraping up my face, and knee.  She, of course, thought my being on the ground was just fantastic and proceeded to jump on my face with enthusiasm, kissing me all over.  Did I mention she weighed about 40lbs??   That walk cost me $150 at Urgent Care to make sure my wrist wasn't broken and I couldn't wear my wedding ring for 3 months till the swelling in my hand went down. 

Those lovely flowers you see her with there?  They didn't last 10 minutes in their planter, she ate them.  All of my flowers were killed by the demon child.  She ate a corner of my deck.  She eats anything plastic, including prescription bottles, juice bottles, milk containers, etc. etc.  I have come home from work to find she has destroyed my room....

So you say, why do you keep this demon child????

Because she is my baby girl.  She snuggles with every single night.  She is the first one to greet me at the door, the first one to see me off to work.  She follows me around all day when I am home.  I am her Mommy and I am so glad I was blessed to rescue her.    Her heart will give out one day, just like mine will, she is doing great otherwise.  No medications needed. 

Layla is now 9, she had/has cancer this past Christmas (2011).  We removed 3 tumors from her mammory glands.  The dr said it was "agressive" cancer and most likely will return in her lungs.  We are hoping for 2 more years with her.  For now, she gets to sleep with me, special bones that she loves and spoiled rotten.  

Moo is now 2, she has mellowed a bit, but not much.  She graduated from basic command school at Petco.  She is a very personable little girl, weighs about 55 pudgy pounds.  She still has the heart murmur but is doing fine.  One day she will develop congestive heart failure but not till she is older.

Mugsy is a our old sick guy.  He is also 9 years old, he has horrible allegies, his kidneys are going, he is now deaf, and his is incontient.  He wears a "wee-wrap" in our house at all times becuase otherwise he will just pee anywhere and at anytime.  The one nice thing about him being deaf now is that thunderstorms don't terrify him anymore.   He is good with hand signals, it's just getting his attention that is funny.  And of course, we still talk to him :-)

3 dogs are too much for my husband to handle some days.  Moo would like to be the Alpha dog, but that is Layla, so somedays there are squables over stuff, like treats, who gets in the door first, etc.  But most of the time its harmony. 

Bipolar, the spouses world

I have been married for almost 19 years.  After 6 months of marriage I knew something wasn't right with my husband.  He had no control of money, he was either up up up, or unhappy and down.  Everything that happened that was bad was someone else's fault, never his.  Of course I believed him, I loved him, I was a newlywed, why shouldn't I?

By our 3rd year of marriage, I had had enough.  He had lost 4 jobs, we were in dept up to our ears, we fought all the time, everything was my fault, he constantly told me that "I had changed" and it was all my fault.  I was miserable.  One fateful day, our car broke down, I remember being stressed out thinking "how am I gonna pay for this" and he said to me "don't bother getting the car fixed, just use the money to buy a gun so I can kill myself."   We got the car towed to a shop, I met him up there with our other car, as I was driving home he was rambling on and on about something and I finally screamed shut up at him.  He opened the car door and jumped out of my moving car out onto the grass bank next to us.  I had to have been driving about 30mph at the time.   The sad part is how dead I was inside by then, I pulled over to look and make sure he was ok, then I drove off.  I drove home, packed some things and left.  I was done, my marriage was over, or so I thought.

I left home, but I didn't go anywhere, I went to the local library and sat and thought.  I didn't know what I was going to do yet and how I was going to do it.  About 3 hrs went by and my pager went off and the number was his parents house.  I called it, thinking they wanted to know about the car or something.  It was my husband.  He wanted to know what time he should be home for dinner.  Seriously? That was what he asked me, what time should he be home for dinner.  Not "I'm sorry I jumped out of a moving vehicle" or "I'm sorry I threatened to kill myself" but "hey, what's time is dinner?"  I knew then he wasn't right in the head.  I told him I was leaving him, I couldn't take anymore of this up and down craziness and I wanted out.  He wanted to talk and we finally agreed to meet and discuss this.  I had wonderful insurance at the time and it covered "emergency" situations like this.  I was able to get an appointment for us the next day with a therapist.  After meeting with the therapist for an hour, he said "your fine, HIM on the other hand..."  and that began our journey.  It took us about 3 years to get the right diagnosis, and 3 more after that to get the right balance of medications.  (On average it takes 10 years to get the right diagnosis for a mental illness.)

One of the things with medications is that you will always need to tweak them.  What works for one year may not work the next.  A medication might go off the market, or might go from name brand to generic.  Generic brands have the same amount of medication in them but not the same fillers, this means that the time release may not work the same.  And I don't care what anyone says, the moon does affect their moods.  Live with mine for 3 months and tell me it doesn't.  I can tell you which cycle it is in by what his mood is. 

The motto in our house is "Drugs are good, Drugs are our friends, better living through chemicals".  While he would like to be off of meds, he can't be, because of medications he is the person I feel in love with again, I'm thankful to have him back.   

Bipolar is not the end of your life, it means compromise, a lot of work to get medications balanced, and the realization that you can not have that "high" that comes with the manic moods that they love.  If they are willing to understand that and live with that, you can make it work.  But it is work, it does get hard, there are days when you think "why am I doing this" but doesn't every marriage have those days?

The World of Psoriasis

Recently I was asked to record a segment for Everyday Health about living with Psoriasis.  I was diagnosed with it when I was 5 yrs old.  I have never covered up my skin, never hid under long pants or long sleeves.  I grew up doing Irish Step dancing, so I was always on stage performing.  You can clearly see the spots on my legs in this picture.

I was never embarrassed by my skin, it was and still is, just a part of who I am.  As the years have gone by, my psoriasis  has changed, my legs have become clear, while my arms have pigment scars from the years of medication.  I have lots of spots on my hands, some on my face but that is less visible and more something that I can feel when I put on my make up. 

I rarely put on medication now.  Its not for any real reason other than I don't care what my skin looks like.  If I itch, then I will put on meds, but I find the best treatment for me is making sure I keep my skin moisturized.  In the winter, I find oil is the best, I have a few products that I love.  Vaseline Oil Gel for one.  Love the smell, and the way it soaks in, I put it on at night and it keeps me nice and soft for a day or two.  I also will take a bath with Aveeno Bath Oil and put that on my skin after I get out.  I also can't sing the praises enough for any hand lotion with oatmeal and shea butter.  I have 2 -3 different kinds of lotion on my office desk that I use through out the day.  Anything to prevent me from itching!

My other recommendation is to always wear gloves when working in water or outside.  Protect the skin!

Since I have had psoriasis for so long, I also have Psoriatic Arthritis.  I developed it around the age of 19, but wasn't officially diagnosed until my mid-20's.  Then when I was properly diagnosed, I had a horrible doctor who scared the living daylights out of me and I went into denial and didn't treat it properly for another 10 years.  I took over the counter medications and managed to give myself 4 ulcers.  Lets just say that ibuprofen is not my friend.  Now I see a specialist at U of M in Ann Arbor, get yearly checkups with X-Rays, and take proper medications.  My pain is under control and I lead a pretty full life.  My advice, if you don't like your first doctor, get a second opinion, don't run and hide from it. 

Living with psoriasis is not horrible.  I have only had 5 people in my whole life EVER say ANYTHING to me about my skin that was bad.  I wasn't made fun of for it in school, and my skin was visible.  I encourage all people "if you got it, flaunt it!"

For more information about psoriasis http://www.psoriasis.org/