Multiple Monday

My friend does a similar thing on Mondays, so I figured it would be fun to try it on this blog.

Multiple Question Monday

What did you do last night?
I went to an amazing restaurant to celebrate my brother's last night in Portland. It's downtown, the food and atmosphere are excellent and they even created some dishes for my kids (seasoned popcorn to tide them over until dinner, pasta, bread and salad). It's called Clyde Common. It's an upscale European Tavern. Here is the website in case you want to check it out. http://www.clydecommon.com/

What’s your favorite time of day?

It's a toss up. Either the mornings (from 7-11:45) when the two older kids are in school and it's just me and Ash. Often we meet my hubby for lunch or I do fun stuff with friends. Or, at night once the kids go to bed and my husband and I have alone time, or he goes to bed and I get to read, watch senseless TV or play around on the computer.


What was your New Year’s resolution this year? How long did it take you to break it?

I actually just made a monthly goal for January which was to not eat sugar the whole month. I did it and lost 14 lbs. Obviously I eat WAY too much sugar :) I have kept the weight off, but am back to eating sugar. LOL!

What is your biggest regret?

This one is easy. I wish I would have dated in high school instead of having steady boyfriends. From the time I was 15 until 22 I always had a boyfriend. I would break-up with one and have another immediately. The first time I was alone was when I was 22. I went nine months not dating anyone and then I met my husband. It was good for me to reflect on my values, goals and what I wanted in a partner without being tied down to someone. I am going to encourage both my daughters to hold off on having a steady boyfriend-if that's possible :)

What’s the last thing you ate?

A Thin Mint Girl Scout Cookie. Darn you Michelle for making me buy them!


What’s the last impulse buy you made?

Three novels at Costco. I have been devouring books lately! The one I am currently starting is Jacquelyn Mitchard's A Theory of Relativity.


What was the last thing that made you feel like an idiot?

I have been looking at wood floors lately and went to a place called Lumber Liquidators. The problem is, for some reason that day my words were getting jumbled and I said to a salesman at another store that we had got a quote from Liquid Lumbergators. It was so embarrassing!

Have you ever been in a car accident?

No. I have been in two fender benders, but nothing major.

When and where was your best vacation?

My best vacation was a few years ago (our tenth anniversary) when we finally left our kids over night for the first time and went to the coast. We stayed at the Stephanie Inn. http://stephanie-inn.com/ 

I LOVE that place and we plan on returning each year. We walk around the beach, nap, relax and dine. It made me realize how important it is to get away from the kids and spend alone time with your spouse. I felt so refreshed after. I would highly recommend it to anyone who visits the Oregon Coast. It is pricey, but well worth the money. -S

Reality Check

Hopefully as you read and view this, the reality and daily struggles of my disease will not shock you. In the past, I have called these fissures. Today, I am feeling more like they should be called massive fault lines, ravines, lacerations or a barbaric episiotomy by a blind doctor who used dull scissors. Regardless, they suck!

I'm going out on a limb showing you this...however, out of all the pictures I have seen on the internet about LS..none of them represent me-so I will show you this once, so you know what LS does to me. I always have at least one of these and it is not common to have five at one time. The skin is white from scar tissue.

This is what I am currently dealing with. Think of a paper cut, but on your private and as wide as a pencil. There are two and they are huge, covering the length of the Perineum. On a scale of 1-10, my pain level is an 8. It's not the most painful ones I've had, but close. It hurts when I sit, walk, use the bathroom, stings and itches all day. I am in chronic pay All.Day.Long.

Combined with my cold/sinus infection, I am very uncomfortable this week. It's taking all my energy to meet the basic needs of the kids and function as a human being. Once again, this is a pain day (weeks) for me until they heal. It's in the raw stage right now, which is always the worst part. Keep me in your thoughts, on days like this, it is hard to even get out of bed :)  -S

Interesting & Embarrassing Facts

When I was little I...was jealous my little brother had an eye infection, so I stuck my finger in the goop and rubbed it in my eye (gross, I know).

...would sneak a jar of Tang out of the kitchen pantry at night (with my little brother) and we would lay belly down on the stairs (while my parents were watching a movie) and secretly watch TV and dip our fingers in the Tang.

...would sneak out at night at my grandmother's house (with my little brother) on our hands and knees once everyone was asleep and quietly crawl to her glass candy dish in the dining room and take candy back to our beds. 

As a kid I always wanted to be...a doctor that would discover the cure for Parkinson's disease, a teacher, a singer (I would lay in bed singing at the top of my lungs all the primary songs from church), a dermatologist and a writer. I had big ambitions :)

My favorite shows when I was little were...The Polka Dot Door, Today's Special, Little House on the Prairie and later, the Wonder Years and Growing Pains. Yes, I had a crush on Fred Savage and Kirk Cameron.

 Do you remember this show? The Mannequin would come alive? LOL.



One of the coolest things my parents ever did was...Let my friends and I take permanent marker to my walls in my bedroom and draw and write messages. My mom was in the process of transitioning my room from a little girls to a teenagers, so before she repainted, she let me have some fun with it for a couple of months :)


The most fun I ever had as a kid with a friend was...with JoAnn. Memories include: her making cake and us eating it plain with no frosting, swimming at Alta Canyon Pool, riding our bikes, the book mobile, jumping on the trampoline, her mom french braiding my hair, falling asleep to music in a comfy bed in the basement, bottles of pickles and doing pull-ups on her dad's exercise bar in the basement, eating candy in her dad's huge car in the garage, going on a vacation, playing cards and her wearing her Georgia Peach jammy shirt, talking about falling in love, school and our dreams for the future :)

The first time I was French kissed was...either at Park City from a guy much older than me, who was not aware that I had braces (Shannon you will remember this) or a boy named Fred at Lagoon Amusement Park (behind a food stand) and he gave me the most horrid canker sore infection. Is that bad that I can't remember?

My first kiss on the lips was with a boy named Jeremy Johnson after school one day in junior high in front of the LDS seminary building. I remember I was with my friend Deanne and I was so elated that he had kissed me :)   My friend Deanne died years ago from brain cancer..but I am so grateful to have such meaningful memories with her. -S

Valentines Day

Why I Love my Husband:

• He cooks more than I do (I always tell him he should have been a chef!)
• He spray painted games on our sub floor (after we ripped out the carpet to prep for wood floors) and cut wood blocks for the kids to play games
• He cleans and helps out with the kids without asking
• He supported me through six years of school
• He works hard (he is working from 4am-6pm today..poor guy)
• He is furthering his education which makes me very proud of him
• He is a playful dad-my favorite activity is our lantern walks with the kids
• He makes me laugh and has a great sense of humor
• He tells me often that I am beautiful
• He sees me and not my disease
• He surprises me with gifts often
• He is sensitive, kind and thoughtful
• He makes me want to be a better person
• He is romantic, passionate and loving
• He puts up with how high strung and anal I can be
• He worked hard so I could stay home and raise our kids the last nine years
• ....the list goes on and on :)

As of this July, we will be married 12 years. I am so blessed to have found such a wonderful husband and I cannot imagine my life without him. I am so grateful that almost twelve years ago I walked into a grocery store, handed him a piece of paper with my phone number and took a risk :) Although my husband cannot spend Valentines with me because he has work, overtime and school...I am excited to see him when he gets home and make the most of the rest of our night.

I hope you all reflect today on the loved ones in your life whether it be friends, family or lovers. I am grateful for each of you. -S

The Definition Of Love by Andrew Marvell

My love is of a birth as rare
As 'tis for object strange and high:
It was begotten by Despair
Upon Impossibility.

Magnanimous Despair alone
Could show me so divine a thing,
Where feeble Hope could ne'er have flown
But vainly flapped its tinsel wing.

And yet I quickly might arrive
Where my extended soul is fixed
But Fate does iron wedges drive,
And always crowds itself betwixt.

For Fate with jealous eye does see
Two perfect loves, nor lets them close:
Their union would her ruin be,
And her tyrranic power depose.

And therefore her decrees of steel
Us as the distant Poles have placed
(Though Love's whole world on us doth wheel)
Not by themselves to be embraced,

Unless the giddy heaven fall,
And earth some new convulsion tear;
And, us to join, the world should all
Be cramped into a planisphere.

As lines (so loves) oblique may well
Themselves in every angle greet:
But ours so truly parallel,
Though infinite, can never meet.

Therefore the love which us doth bind,
But Fate so enviously debars,
Is the conjunction of the mind,
And opposition of the stars.

Thank You!

I have been thinking about doing this blog for many years now, but was always afraid of what people would think, act and say. However, after the realization that my husband alone could not give me the support I need, I reached out and took a chance on all of you. Let me say that I am so touched by all the emails and personal stories of struggle that you have all shared. I am so blessed to have you all in my life and am touched by your support and compassion. Thank You. -S

Hope

My father is an amazing man. I cannot remember a time in my life that I was not aware my dad was sick. However, he is a great example of a person that accepts his fate and pushes forward. My father was diagnosed with Parkinson's in his thirties and over the years I have watched his health decline. He's has three brain surgeries and numerous struggles with his disease. Yet he has always been an example of a person who would do anything for a friend, complete stranger or loved one-he would literally give you the shirt off his back.

He's always been a hard-worker, can be stubborn at times (okay, most of the time), is quiet but has a great sense of humor and has always believed in and supported me. He has never given in to his disease. He is always fighting and trying to do things that most people take for granted because he wants to be independent. I will never know completely the heartache he has gone through, but I am aware of all the things he's had to give up-driving, a good nights sleep, working, fishing, hobbies and even the ability to get around without falling. Although my dad has never broken down in front of me about his struggles, I'm sure he's had moments of despair and fear. But like my dad, I will not sit and bemoan my disease.

In my darkest hours I sit and think about how I have suffered and will continue to suffer. How at best I will have remissions followed by flare-ups, but it will never be completely cured. However, I have been raised with a dad that taught me how to gracefully go through life with a disease and a mother who despite hearing voices and having a mental disease still endures each and every day. You see, I come from a family of survivors who endure and continue to have hope. I am my father's daughter.

Wallowing in despair drains me from all that is vibrant and joyful in my life. It kills my ambition, pollutes my soul and breaks my heart.  Hope inspires me to trust that I am strong enough to handle my disease and not let it dictate my life. Instead OF having hope for a cure, I have hope IN the faith that despite the pain I am currently in, I know that deep inside no matter how unbearable the pain might be, there are beautiful things all around me (my children, family, friends, nature) and I must endure till the end.

 For me, hope and charity go hand-in-hand. I love doing things for other people-it distracts me from thinking only of myself and my chronic pain and urges me to care for other people without expectation of constant reward. I have been devoted to charity and good works since I was a child-it is weaved into the fabric of my being-it is who. I. am.

If you are suffering with a trial or sickness in your life remember to never give in, never surrender and never allow despair to overcome you.  Press forward, stand on your own and know that tomorrow is a new day. -S

Comments

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Naturopathic Physician

I have been treated by more than a handful of physicians familiar with LS in the Kaiser Network as well as gone to the Vulvar Pain Clinic in Portland for three years with no change or relief in my disease. All doctors seem to want to do is write me a prescription for steroid creme (I do not respond to these and my skin has thinned too much from them over-prescribing). I heard that a naturopathic clinic called A Woman's Time might be worth looking at so I am in the process of finding out if they have a doctor familiar with LS and if my insurance will cover it. I will keep you posted. This is what I have tried in the last 6 years (since my disease advanced to fissures):

•  Instant Ocean and Epson Salt Baths
• Steroid Injections (those were fun)
• Steroid Cremes & Various Topical Prescription Ointments including: Clobetasol propionate (an ultrapotent steroid),Betamethasone dipropionate and Halobetasol propionate
• All cotton underwear, no soaps that have perfume or dyes
• Flax seed oil, aloe vera gel/pills
• Calendula ointment and Neosporin 
• Peri-bottle since I tear from toilet paper
• Vicodin for pain
• Icing the area
• Antihistamines
• Prescription sedatives at night

I have pretty much exhausted the treatments they use for LS other than estrogen. It appears that more than likely I have an auto-immune disorder so estrogen probably would not help. I am hoping a Naturopathic Physician will have some more ideas including the possibility of  immunomodulatory macrolactams (immunosuppressive, immunomodulatory and anti-inflammatory agents) especially since the use of steroid cremes may cause long term toxicity, cause skin atrophy and inhibit collagen synthesis. I am hoping to eventually get in the remitting and relapsing stage of the disease instead of always being in pain. Because of my scarring, they are concerned with progression of squamous cell carcinomas and infection of fissures.

Do any of you see Naturopathic Physicians? Have your experiences been positive? -S

Pain Day

Yesterday was a Pain day for me. Meaning, all I wanted to do was pull on some yoga pants and crawl into bed. But, as most of you know, when raising kids and having other responsibilities more than likely, this is not an option.  My daughter recently broke her clavicle and has been really clumsy lately which does not aid in the healing process. She took a fall outside and landed on her shoulder and tumbled down the stairs today. Needless to say, she has not been a barrel of laughs and has been having crying fits from pain. Totally understandable, unless you have a three year old that cries whenever her big sister does.

                                                            

Yesterday my husband and I were supposed to go on a date. The first one in four months! Gasp! I know. We scheduled an early date at 3- that was before both my girls were crying off and on for hours and frankly, I was having a bad day. My husband and I had been snapping at each other for hours and so I canceled the date. I finally told him that today was a pain day for me and I really needed him to just cut me some slack and let me be grumpy. We decided to go out and I’m glad we did.

If you know me, which most of you do, you know that I am a tough cookie. I am the only daughter out of four kids, was raised to be independent and be a go-getter. I can replace and wire an electrical outlet faster than my husband, am pretty good at shooting a gun, am in charge of hanging the Christmas lights on the house each year (and take them off), go logging with my husband frequently and have painted our whole house. I am a stickler with cleanliness and when my environment is not spick-and-span, I freak out. Blame it on my mother, she ran a tight ship when I was a kid.

I’ve had a lot of responsibility in my life (especially as a young adult) with two parents that were and are ill. I've had to rely on myself a lot and have a hard time trusting and letting people in. But when I do, I am a great, devoted friend who would do just about anything for you. I can count on one hand how many naps I have taken in the last eleven years-not because I don’t like naps, but because I am too high strung. This may be a flaw to some people, but I appreciate that trait and believe it to be the main reason I was so successful in school and am able to juggle many projects in life.

My point is….it is hard for me to tell people when I am having a pain day because I don’t want to appear weak. This is especially hard with my husband. I don’t want to be the wife that constantly complains of an illness. I want to be strong and just suck it up. There is no cure, so why wallow in the pain and feel bad for myself? But about once a month I can’t take it anymore and I just lose it. When this happens, all I want to do is pull the covers over my head and just sleep for days.

So my question to you reader is….how do you motivate yourself to face the day when all you want to do is stay in bed?  If you struggle with some sort of illness how do you express to your loved ones that you are in pain? Do you feel guilty always mentioning it?-S

Weekly Quote

“Not everything that is faced can be changed, but nothing can be changed until it is faced.” — James Baldwin

Hello. My name is Sherrie & I'm an Addict

Dear Reader,

I stand in the shower, eyes closed and arms crossed over my chest, the hot water running down and providing instant relief. I could stand in here for hours. It is the one place I find comfort, relief from the many things that cause me anguish. Rarely do I venture far from home, and when I do, I have to go prepared. A rag, soap and baby wipes. I am an addict. I shower at least three times a day, sometimes more. Once I get out, the healing power lasts less than five minutes and once again I am a prisoner to the chronic, debilitating pain that I hide. It does not matter if I am driving in a car, taking a walk, reading to my children or making dinner-it is always on my mind. It haunts me when I sleep, waking and torturing me. I cannot get out of bed fast enough, only to find myself right back in the shower. I must get clean, renewed and wash away the weight of it all.

 

When I was little, I knew something was wrong with me. I never got a good nights rest and did not understand what was happening to me. It was so commonplace that I thought for a long time that I was normal.

My mom took me to the doctor when I was three. I still remember my little frame, light brown long hair and animal printed hospital gown. After many failed attempts to diagnose me correctly, my parents took me home. As a teenager, this part of my body became my nemesis. I hated, despised and had dreams of removing my flesh with a knife. I did not tell anyone of my secret. People, especially in predominantly LDS communities do not talk of such things. Even today, it is hard to admit to friends or family that I live with constant fissures, pink skin long gone replaced with white, elephant textured, scarred skin. My female anatomy is changing and I don't like it one bit.

I kept my secret hidden for years. I did not even tell my mother. My mom was always open about such things, but since she did not understand what I was going through, I pretended everything was fine. I look back now at my actions and wonder how I had the strength to live in such agony. My life consisted of crouching in the back seat of my car, ducking in dressing rooms at malls, leaving undergarments in random garbage cans in bathrooms and wearing tampons when they were not needed. I would do anything to keep moisture at bay. Even today, I am nervous to go in public restrooms or pools because of infection.

I was disgusted at my body, depressed and alone. How do you admit at such a tender, influential age that you itch twenty-four hours a day and any moisture on your skin or underwear is unbearable? At night I wake up scratching and am not even aware of it. If I don't stop, the scar tissue will get thicker and I will be at risk for skin cancer.

I have heard many times of a woman’s sexual organs being referred to as a flower. I have never understood or thought of it in that way. My sexual organs cause me a mixture of pain and pleasure, nights crying in the shower, a depleted self-esteem, agony, misery, chronic pain and hushed secrets. So many times I have laid awake while the entire house is asleep, crying in my pillow because I have felt so alone. Intercourse usually (but not all times) consists of me pretending I am enjoying it, flinching at the stinging as a new fissure tears and retreating in my mind to a pain free place until it is done and I can roll over with tears in my eyes and hide the pain from my husband. I am not a flower, but rather a thistle. 

I am determined to speak out about my disease, demand more research, find a doctor that listens and will fight for me, learn to appreciate the beautiful, positive things in my life and hopefully document both the ups and downs of living with Lichen Sclerosus. I want to share the experiences with doctors, treatments and the advice I get from a group of women (that I found by complete chance) that suffer from similar diseases.I do not want people to look at me differently or feel bad for me. I am doing this blog to stop the silence, shame and loneliness that this disease causes me and for once be honest, open and completely exposed. In a sense, I am standing here naked for all my readers. I am an open book. I hope that by doing this, I will provide support for other women and let them know that they are not alone.

One day my daughters will understand why their mom gets grumpy, does not like hiking, camping unless there are showers or anything else that causes beads of sweat unless I have provisions. Incite as to why I sometimes gasp when I sit down from pain and disappear without notice into the shower. My toddler who has been diagnosed with LS will have something to read as she grows to a young woman and hopefully will understand why she itches all day long. I will be strong, fight for her and come out of this a better woman if not for myself, but for my precious little daughter. She will not be alone, suffer in silence and not have anyone to fight for her. -S