Half-inated...

Recipe for a Sonja Zombie:

3/4 cup Brain Fog, 2 tablespoons Distract-ability, 1 Spouse, 1 Daughter, 2 Dogs, 1 Bucket of Cats, 35 gallons of gurgling fish tank, TV whoosh noise, crickets chirping in my brain, 4 cups Forgot What I Was Doing, 3 tsp. What's That Word, and 1 Sonja. Mix well. If you forgot, set oven to 325 degrees. Now, sift in- oh shiny pretty thing! I think I have to pee. Looks like it's my turn on Words with Friends again! Oh a FaceBook notification! Yes dogs, I will let you in, out, in, out, in, out, and back in. Does anyone know why the oven is on? I'm definitely not caffeinated, I'm half-inated. 

Yes, the joys of sleep deprivation are upon me. School started and my world is upside down. I've been trying to write for the last several days. I really shouldn't ever 'promise' to write. Ever. Not only do I draw a blank, but life things seem to pop up more. When I've actually tried to sit and write this week it has been indescribably infuriating. I want to lash out at the world "SHUT UP FOR ONE DAMN SECOND!" Sleep deprived and trying to focus long enough to write have only equaled a really pissy Sonja this week.

I cannot pinpoint one thing that's bothersome. It is nothing less than everything in the universe. The noise, the questions, the texts, the email, the tasks others want me to do... It is so hard to focus as it is. This week I have settled in to the Christopher Reeves (my computer desk chair is nicknamed The Christopher Reeves- if you saw it you'd understand) countless times, the blogger program open, the tabula rasa in between my ears refusing to create anything other than puffs of smoke within the confines of my skull. Bah. So I've become agitated.

I am going to generalize here. I believe that when a person is diagnosed with some form of ailment, illness, disease, or  try to perform a daunting task, they go through the Kubler-Ross 5 stages of grief. Bargaining, Denial, Anger, Depression, Acceptance. Trying to write lately has landed me square in the Anger stage. I'm not angry about the MS, I'm more angry about how people (myself included) react to the half-inated, foggy Sonja, and the sometimes unrealistic expectations I've placed on myself. For example, thinking I could write a simple blog. 

First Anger decides to visit. Anger comes when other people get upset with me for my halfination brain fog because they just don't understand, or haven't redefined what my new normal is. They still have me as my old normal. When I am in the angry stage here is what I'm thinking "Yes, I'm purposely taking my time responding to you. Yes, I'm ignoring you on purpose. I simply cannot multitask any longer just to tick you off. Yes, I purposely forgot to do that menial task you asked me to do. Yes, I forgot that word because I knew you'd get annoyed waiting for me to spit it out. I'm sorry that you've asked me to do favors for you, again, and I forgot to actually do them- or I've finally gotten so tired that I said no...  I am glad that you're so selfish you don't realize the strain it's putting on me. I know, it's entirely my fault." Add a few colorful words in there and it's a bit more realistic.

Then comes my pal Denial "You know what Sonja, if you just sit here and type you can get it done. Sure, you can drive everywhere, pick up everyone's kids, watch the dogs and cats and fish and birds of the world, write a blog, take care of the house, market myself, work, research things that people have asked favors about... It's mind over matter. I'm totally fine. Just peachy"

When I'm hanging out with Denial my friend Depression gets sad (see what I did there) and pushes her way in. So Depression comes in and says "Sonja, I'm going to make you hit a really huge wall right about now. There there... you go ahead and cry. Why you? Well, why not you? Karma? Bad karma? What did you do that was so awful to deserve this Sonja? You know you aren't an angel. Really should've made some different choices... You know you can't do all that stuff anymore. Who are you kidding?"

Then Bargaining comes to town, beats down Depression, and takes me out for a night on the town. First we hit club "I promise to exercise more if XYZ", soon after we head over for some coffee at "I'll do anything if XYZ", which starts to feel a bit desperate and empty so we end the evening with "Please, I just want to be normal."

Good ole Acceptance finally decides to make an appearance. Acceptance changes: "I just want to be normal" to "MS is a part of me and I have a new normal now." Finally... I can breathe and move on. Until the next daunting task, or flare up is at hand. Then it's time to visit my friends all over again.

So where am I now? Who knows. These stages are fluid. I'd like to think I'm self-actualized and living nicely in Acceptance, but I'd be lying. Since school started I have to admit I've been in Anger and Bargaining a lot. Last night I could not sleep. 2 1/2 hours of sleep is all I could muster. I expected the MS fatigue train to hit me at Mach 7 today. Nope. Not once. So my new normal seems to be as spontaneous as me. It's hard to accept something that's not in stasis. Or is it?

This is a learning process for all of us. I'm not the same person I was. My character, humor, appearance, and whatnot are all the same, but what I am capable of doing has changed. And the time it takes me to do it has also changed. So I have a favor to ask... go into your brain and locate the Sonja file. Once you get there please delete the following files: multi-tasking, sentence completion, correct word usage, short-term memory, and whatever else I forgot. Here, read this excerpt from Staying Sharp with MS. It explains what I'm talking about.

Types of Cognitive Impairment Problems
 
MS symptoms involving cognitive impairment may include:

• Short-term memory loss. This is the most common form of cognitive impairment. You draw a blank on a familiar phone number, forget whether you took your medication, or can’t recall why you left the living room to go into the kitchen.
• Mental fatigue. Cognitive impairment can cause “brain fog” or slow thinking. “In psychological tests, MS patients have been found to tire more quickly," says Dr. Sheremata, leading them to perform less well on tests of cognitive performance.
• Distractibility. You may have a hard time focusing on what you’re doing. Some MS patients with cognitive impairment issues are easily distracted by noise, such as the television or music. It’s also difficult for them to multi-task.
• Verbal fluency problems. You may have difficulty finding the right words in conversations or get lost in a middle of a sentence. However, people with MS are able to understand words they hear and read just as well as people without MS, says Sheremata.
• Impaired planning. People with this MS symptom can have trouble planning and organizing their day. Some research shows that up 40 percent of people with MS are less able to plan than people without MS.
• Complex problems. Mental MS symptoms can impact a patient’s ability to figure out a difficult problem. “You may feel overwhelmed if a problem is too complex and may not be able to come up with alternate solutions,” explains Sheremata. This can lead to poor judgment.

Maybe that will clear some things up. So no, I'm not a moron... Yes, I understand what you're saying to me, but please be considerate and turn off the TV, the radio, quiet the dogs, silence the bucket of cats, turn off the cell phone doodle dangs, blips, beeps, and bells, remember one person at a time can talk, oh- and keep it short and sweet. If that's too much to do would you please refrain from getting pissy with me when I get overwhelmed, overstimulated, and hang out with my buddy Angry? Otherwise, deal with the half-inated sentence stumbling forgetful Sonja who had good intentions of writing, but found the fog to be rather thick this week.

And as always, if you'd like to help me out so that my old normal is more normal than my new normal please donate to my surgery fund.

Killing curls and smearing lipstick

A huge source of my stress lately has been school. I know, I know, I've already gone to school, and beyond... but the kiddo has some massive changes to her schooling and it's got me in a tizzy. However, the child and I could not be any more dissimilar if we tried which might be a blessing.

I was in Mrs. Buchholtz's 5th grade class. She had bouncy reddish curls, wore red lipstick, dressed like she had money, and had the attitude that she wanted to be there...Naturally, I did my best to change all that. I was, in the nicest terms possible, an asshole. My poor mom was 'blessed' with 2 gifted kids. No one ever talks about the behavioral components of gifted kids. Let's just say that she had early onset of gray hair with all the challenges she endured from those 'gifts'. Since my daughter, though gifted, is in no way, shape, or form like me- I have NO clue what to expect! Fear of the unknown- Cue the gray hair.

Ah fifth grade... chosen to tell a boy that a girl didn't want to go out with him anymore. I ran as fast as I could up to him and yelled "YOU'RE DUMPED!" Or the time I wasn't paying attention and stuck my hand through a glass door... the year of home perms, taper rolled pants, jelly bracelets, begged my parents for Madonna 'Like a Virgin' and was never allowed to have it, on a new campus ready to make my mark, turn on that spotlight because I'm a star! I was no longer in elementary, I was a hot shot middle school kid. On top of the world... Student counsel, choir, gymnastics, you name it. Academics were easy for me... I was in the cool kids club- dress code= jean jackets. I was sharp minded and quick tongued. And I was always in trouble.

Now it's Chloe's turn... My daughter has had a crush on the same boy forever. She is far from athletic. She always seems to be paying attention. She wouldn't change her hair if her life depended on it. She wears a uniform (thank god) because she has no rhyme or reason to her outfits. She would tell me all the reasons why an album with the word 'virgin' in it is inappropriate for her age group. She has very few friends, would rather not be in groups or clubs, especially ones that would shine a spotlight on her, and math and spelling are HARD! Chloe's giftedness is in language. Her vocabulary is out of this world. Chloe in trouble will happen when the earth is flat and the sky is brown. Chloe hates change. The only similarity is that she is going from one campus to another.

Change is good for you. Living in stasis can literally lead to death. It matters not... Chloe hates that her whole schooling world is now upside down. This is the first year she will have a lunchroom. Hot lunch. Oh yes. School starts earlier in the morning now too. There will no longer be assemblies every Friday. Expectations are different. Playground is different. The secretaries are different. The principal is different. Drop off and pick up are different. It's like Michael Keaton in Mr. Mom going the wrong way at drop off time. And there are big kids there too! I'm getting sympathy acne and an urge to taper roll my pants and wear my hair in a side ponytail. 

Since we've been at the same school for all of my daughters schooling career you'd think that we'd have a lovely group of friends to bounce our fears off, to hold our hands, and to reassure us that it will all be fine. Sadly, last summer I had a falling out with my circle of friends. I honestly don't know what happened, and I really don't care. My point is that since I lost the grown-ups, Chloe lost the kids. We are entering the big, scary unknown alone. Or are we?  I have one amazing pal, and she has been there with me through it all. We've laughed and cried, gone on random outings, and shared some great moments. We spent every Friday together and had snowball fights, decided to wear mustaches just because, or just hung out while the kids did whatever. She has 3 kids. They are Chloe's best friends, confidants, and kindred spirits. I am forever grateful to have such an amazing woman and family in my life. She knows just how to talk to me, set me straight, point out my flaws, and my moments of triumph as only a friend can.

Wouldn't you know it- she just moved across the ocean. My best friend... and my daughter's best buddies gone *sigh*. It's been very lonely since they've left. I miss my friend enormously. I hate not having her around to mock and make snide comments, and to call my bluffs. She was my partner in crime to take the bounce out of the teachers curls and to smear that lipstick.

Since their move it has been a big growing up period for us as mother/daughter. She looks to me and follows my example. Good or bad, it's what she sees and copies that. I am so very sad about my friend and her family moving but Chloe needs to see that life goes on. More importantly she needs to see that it doesn't mean that we've forgotten them. So we started a care package and add to it until it's ready mail; we made a goal to save enough to go visit them (yes, a vacation that isn't in the bathroom!); Chloe is learning that about living in another country and what the culture is like from her friends perspective. Thank God for Facebook Messenger and FaceTime too!

Chloe also sees that I ask questions. Lots of questions. I went to the school and asked how lunch works, how Friday's work, how drop off and pick up work, the curriculum, and whatnot. I got all the answers I needed so now I am in a much calmer place. The creepy dark abyss of the unknown seems much more reasonable now that we've turned the light on. Chloe too is in a better place. Fear of the unknown is a very real, very stressful thing. Since the middle school beast has been tamed, all I have left to fear is Dayton, Ohio.

15 days. Surgery is scheduled in 15 days. I still cannot believe that I have to fly across the country to get surgery that my insurance won't cover. The closer I get the weirder my dreams get. My brain is screaming. I can read all I want, ask as many questions as I can, talk to the Doctor doing the surgery every day, and it's still unknown. I've never had this done and therefore, it is unknown. I honestly don't know what I'm afraid of at this point. I'm just afraid. I guess that's not 100% true. I'm afraid it will hurt, I'm afraid it will launch other problems, I'm afraid it won't work, I'm afraid I'll need it done again, I'm afraid to fly afterwards, I'm afraid of all the normal things...

I'm glad my mom is joining me. She is a voracious fighter and will be the most amazing advocate and care taker known to all mankind. She has already started doing things here to make sure that I can rest and relax there. She's incredible. My friend that moved overseas has also been an enormous help. Not only was her donation incredible (absolutely floored me) but the thing that really got me was when she said she's not ready to lose me. She's thousands of miles away yet very much here, holding my hand, listening to my fears, reassuring me that it will all be okay.

The incredible outpouring of support from friends, family, and perfect strangers has bolstered up the confidence and let me know that I am in no way alone. While I might have lost people I thought were my friends, the one that really mattered was there. While I thought I was alone, you've all reached out and said 'we love you and we want to help you'.  While I will travel out there with what-if's and fears, I will have the most amazing person by my side, holding my hand and helping me through those what-if's and fears.

15 days. Who else can pinpoint exactly when their life will drastically change for the better? Regaining my life in 15 days.

Sh*t bucket incoming!

Six years ago my dad was on a ladder. The ladder broke. He had a massive brain injury. He wasn't supposed to live. He wasn't supposed to breathe on his own. He wasn't supposed to eat. He wasn't supposed to talk. He wasn't supposed to walk. Yet he does all those things. He took his sweet time, but he did them all, one by one.

During that so called 'sweet' time the rest of us had a different idea of what to call it. It was my mom who came up with our term. Exhausted, scared, no control of the situation, fighting to help save her husbands life, she spat out "I have a shit bucket looming over my house" and it has been a staple ever since. A very dear friend of mine actually designed shit bucket shirts for all of us. I wear mine with pride to this day (love you Sue!).

My friends know I swear like a sailor. My mom, a tiny ball of energy, always seeking deeper understanding and meaning, always looking for the positive, continuously seeing the good in others, and a fierce advocate for her friends, family, and for those in need, is not a sailor. So for her to say 'shit' makes me do two things. One- I take notice and two- I giggle.

Today the shit bucket is hanging out over my house. Fortunately, it's not a stationary bucket. It travels around from house to house, spends time there making a mess of things, then leaves once you're covered in, well, shit. Here is how I ended up the lucky recipient:

I went to my doctor yesterday because I've been feeling like (you guessed it) shit. When I walked in he was on the phone with the doctor that will be doing the surgery that will give me my life back. My primary doc is totally on board, got me set up with what I need, reassured me that he thinks that I am in good hands. Then he told me I have walking pneumonia. Ahhhhh.... there's the edge of the bucket making it's way over my house... I can feel it's cold metal presence, suddenly there seems to be more flies buzzing around, can anyone else smell that or is it just me?

I'm allergic to pretty much any and all medicine that can kill bacteria and kill pain. I have both going on right now. I can take Vicodin, but thanks to some jackass in Florida that stole a prescription pad and wrote thousands of scripts for Vicodin, there is now a national shortage...  boy that bucket sure is getting bigger isn't it?

The antibiotic I'm on is about the size of a watermelon. Take 1 pill 374 times a day for the next 83 days and I'll be cured! Remember I'm weird with medicine (assuming you read that blog.) Antibiotics are no different. I need multiple doses to actually get rid of the crap I catch. The side effects of this stuff is fabulous! One of which is, if you are catching on you can guess, giving you the shits! Is that the handle of the bucket coming in to view?

There are feral cats in my neighborhood and we feed them. My neighbor is a colony manager with the city. I love these little guys! Breaks my heart. Well last night one of them showed us that he is really quite the lover and was just a bit shy. So we brought him in, and we will socialize him, and give him love, and the chance for a long and happy life. Awwww, isn't that cute. 3:30 am-7:30 am- MEOW MEOW MEOW MEOW MEOW MEOW MEOW MEOW MEOW MEOW MEOW, repeat. This at 739 billion decibels. Have I mentioned I have a terribly hard time sleeping as it is? Yep, there's the handle, looks like the shit bucket might be taking up shop for a bit...

What finally solidified the bucket taking up camp over our house was a phone call I got from my positive, good in everyone, silver lining finding, ball of energy mom. She said "Help the Needy cannot designate funds to you. People can't claim a tax deduction to a charity when the money was going to a private individual." Drop F-bomb here---------> "They have to send all of your donations back." Another F-Bomb here-------> The great thing about Help the Needy was the tax deduction and the anonymity. Now they would have to out themselves and wouldn't get the deduction. And I'm out $1,000 of much needed funding.

So it looks like I'm eyeball deep in the bucket. I have flies buzzing around, walking pneumonia, a headache that won't quit, and I lost 1K of my funds. I am not even half way to what I need and I'm scheduled for surgery in 3 weeks. If anyone has a giant crane I can borrow to move this shit bucket please send it over. Otherwise, I'm accepting any and all miracles, and donations.

Nothing wrong with Sweats, UGGS, and a Tank Top

Man am I lucky! With some things that is.  Most people with MS do not fare well in the heat. MOST. I'm from a long line of weirdos. We do EVERYTHING differently. Take me for example. When I had my wisdom teeth taken out (16 or 17 years old I think, still in high school anyway) not only was the doctor shocked when I started saying "OW!" - his response was "YOU CAN FEEL THAT?! HOLY COW!" he was doubly shocked that I NEVER FELL ASLEEP. (These cap locks certainly make a point don't they.)

Lesson learned, I have an unusually high tolerance to medications. That's not necessarily a good thing. Fortunately for me I've had the same primary care doctor for the last 14 years. When I do need pain medicine I can ask for the super whammy, high powered, locked up in a vault guarded by SWAT types and he won't bat an eye. They hardly take the edge off. Give me an Advil and I'll die though. Severely allergic to it. Weird see?

So back to the heat... Colorado is famous for having 2 seasons- Summer and Winter. Since we practically scrape the surface of the sun living on top of mountains and all, it gets really hot in the summer, rotate us 180 degree for the winter, and it gets really cold.

When I was first diagnosed my car at the time did not have working AC. My doctor insisted that I get it fixed. I didn't... for 2 years. I did get central air installed in my house though (thank you mom)... I kept hearing horror stories about how terrible the hot Colorado summers are for people with MS so I absolutely MUST get my AC fixed in my car... It was June by the time I had any actual diagnosis. I didn't understand what all the hullabaloo was about. I felt fine-ish for the most part. Maybe a smidge weird, but nothing to write home about. But whatever, I needed a new furnace and got the air along with, and it ended up being an easy fix with my car. So I turned on the AC and Holy Crap did it hurt!

Yep, I am one of the MS weirdos that does fine in the heat but doesn't tolerate the cold. Thank God that winter here lasts about 11 3/4 months. Imagine for a moment that someone is slowly and steadily ripping your skin off from the inside. That's about how it feels to me when I get cold. It's super. My torso and my legs are the absolute worst. It hurts to move. It hurts to walk. It just plain hurts. If I cover up with a blanket the pain gets worse before it gets better. It's the only logical way to warm up thus far.

Here's what happens: I break out in a massive upper body sweat, my hair ends up soaked, literally dripping as if I'd been in a sauna while exercising and having a hose spraying me sort of dripping sweat. If that wasn't entertaining enough- my lower half starts screaming as if wildebeests are goring their way out, slipping in the pools of water that are pouring out of me thereby re-goring me, then PRESTO! All better! It's a long and painful process that frankly requires too many changes of clothing.

So today I was thrilled to take my kiddo and her gal pal to the pool. I sat in the sun, I waded in the pool, and I loved every minute of it! Cue the weather report- Cold front moving in on Thursday. Crap. It's not a massive cold front, but it's enough to turn my person into a sopping wet, gored by a wildebeest, pain riddled, freak for a day or two. So if you happen to see me hobbling around on those days in sweat pants, UGGS, and a tank top, just smile and wave because now you know.

Click here to donate to Sonja's surgery fund

Living in perfect Irony...

"I Don't Want To!" "You Can't Make Me!" Bangs feet and fists on bed while sleepily thrashing about. Yep, that's me in the morning. Every morning. Now that school is starting up again my 'morning' is going to become MUCH earlier. I have until the 22nd to get used to waking up long enough to get myself +1 together, be able to hold it together long enough for the 20 minute drive to school... Then the obligatory morning greetings to the other parents (while trying not to look like a serial killer with sloppy makeup and mismatched shoes) then the 20 minute drive home.

Once home I face the overwhelming wall of fatigue even though I've already gotten 57 hours of sleep the night before. Then the guilt hits. I really should do the dishes, clean this or that, play with my dogs, make dinner but WOW I'll just sit down for just a minute. 3 hours or so later I wake up with enough time to get the sleep out of my eyes and pick up my kiddo, 20 minute drive there, go into class, obligatory chat with parents, 20 minute drive home then the epic homework battle of the century begins.

Homework doesn't get done at my house unless I sit next to my child and ask her each question, one by one, remind her to write it all down, box in the answers, blah blah blah. I swear I went to elementary school already. I guess I get to go twice. Enter husband after long stressful day of work. Tufts of my hair are scattered around the table from me pulling at it, tear stained cheeks are the featured characteristic on my daughter from aforementioned homework battle, house still in shambles, no food is cooked, guilt and stress soaring at all time highs. Rinse and repeat this scenario Monday-Friday, and weekends too if there is homework to be done or if spouse has to work on the weekend.

Then I get into the 'if-only's' If only I could stay awake I could get some shit done during the day. If only my kiddo could work more independently, if only I didn't if only all over myself. So what do I do? I stay up after kiddo goes to sleep, I do chores then, I try to wind down some before bed, end up waking up 90 million times a night (except when kiddo calls for me- that's the only time I actually don't wake up). I think it goes without saying that I really am not looking forward to school starting. Yes, I love having my kiddo home, it's awesome! I'm also selfish. I can sleep in, I don't have to put on a fake face and mingle with parents (yes, I think it's important so that's why I do it.) I have an only child in a neighborhood with zero kids. Talk about bad planning. If-only I lived in a neighborhood that had kids! Maybe mine would know how to ride a bike! If-only the magic house fairy would fly in and give me a new house in a good neighborhood with lots of kids! It's not that I don't think I should have to work for things, believe me, I do. I live in perfect irony. I bet innocent people in prison think that too. The actual innocent ones.

When do you decide to accept your reality and give up on your dreams then? I have a shitty disease that makes it impossible for me to work. I worked in a field that makes it impossible for me to collect disability income. I could go back to work for 5 years and be eligible MAYBE. Back to the shitty disease that makes it impossible for me to work comment. That leaves my husband. He has a chronic disease and has spent the last 2 summers recovering from surgery. He makes 1/2 the income I made when I could work. If-only.

There are no easy answers here. The system in place is crap and one voice won't change it. Our family faces foreclosure, utility turn off, no food, etc. every single month. A stress free life is one of the major recommendations for persons with MS. You tell me. Is that stress free? I try to work from home, so I am doing something. The wall of fatigue stops me in my tracks. I can't market myself if I can't stay awake. It's super. If-only.

My brother travels and has medical issues, as does my sister-in-law. My father had a traumatic brain injury years ago that has left him like a guy that looks like my dad, but not much else. My mom is getting older and can't do everything in the world. So I get the call to please help with this or that because I'm the only person available. I live 45 minutes away. I load up the dogs and the kiddo and make the trek up there. I like it. It's tiring. If-only. 

I am sharing this because I think people need to know what it's like. I don't want pity. I want this surgery! I want to work! I want to know that I can buy food AND pay the utilities AND pay for mortgage... If-only.

People my age are supposed to be at the top of their game. Made that climb up the corporate ladder and enjoying their families, taking vacations, going to school events, having BBQ's with their circle of friends, laughing! I fell off my corporate ladder in a fiercely competitive field that will now be impossible to re-enter. I enjoy my family, I do. We seem to all have a little something something with our health tho. Vacation? HA HA HA HA HA right. I have to figure out what not to pay this month so I can pay something else. Vacation for us is when we overdose on fiber and spend extra time in the bathroom. I go to school events. I struggle through them- trying to stay up. We have one BBQ a year. I love being social, I love having people over, I love it all. It's tiring tho. The husband isn't fond of crowds (he's cool if he knows everyone), they aren't free even if people bring something to share, and I've gone through a friend transformation. I laugh at everything. That will never change. If-only. 

Today I haven't taken a shower yet. I will. I just haven't yet. Too tired. It's 2:33pm. I'll get there. Guess what kind of a role model that is for my kiddo. Guess who is also still in her pajamas? Yep. If-only.

I know you can see the irony in all of this. Incongruity if you will. Trust me, I have enough character, I really don't need more.




Click here to donate to Sonja's surgery fees

But... You look so NORMAL

I guess it's probably a good thing we don't live like The Scarlet Letter... What's that Lady Gaga song? Born this Way? Have you seen the episode of Glee where they are all sporting tee-shirts stating personal things about each character? I swear tho, sometimes I need a damn shirt.

I don't think that people are just THAT self absorbed that they forget that I have new quirks. I think if you can't see it, it's not there. Like playing peek-a-boo with a baby. If they can't see you, then you aren't there. I'd love it if diseases worked like that too. I'll find the fountain of youth and plant a tree that grows money while I'm at it. Do I really need to advertise my private life on a shirt tho to help the population of the world stop behaving like clueless idiots? I simply cannot give in to 'it is what it is'. That's a load of crap. I seem to recall my parents teaching me these things called manners. Perhaps it's time that we revisited those and had a little lesson.

Lesson one: Your 'funny' comments really aren't that funny. If someone tells you that they have MS (or anything else) avoid telling them that you're surprised because they look so normal. Really? I cannot believe I have to spell that out. MS does not come with a rash, a forehead stamp, no limbs will fall off, no visible cooties, nothing. Some people use a cane, or are in a wheelchair. For those that use those try to avoid saying they don't need it or can use the cane as a sword, or the chair as a battering ram... It really isn't funny. I would stay away from any kind of 'you get the sweet parking spot' comments too. Just tacky.

Lesson two: Accommodations are necessary, and protected by ADA. So when an employer says to shake off the sleep with some more coffee, or don't think you really need that handicap stall in the restroom, they're 100% wrong. If you are a co-worker of someone with a disability and they have shortened hours, less responsibilities, and more pay, keep in mind that you can climb stairs, go outside, you can see, you can feel your limbs, you can stay awake all day, you don't have elimination issues, you are healthy. Money can't buy that.

Lesson three: if you're a friend, family or a spouse, or other supporter, remember how important you are! I have bad days too. I'm human. And I know that my friends, family, and husband have days that are less than delightful. Stress seems to be a common trigger for MS symptoms. Families and friends are safe to vent to, or blow up around. It might be wise to ask first. We all handle stress differently. For me, I want to be there, I want to help, I want to hear, I want to help heal, but the stress of other people's problems sends me into a tailspin. I'm not a counselor any longer so please don't expect me to provide free therapy. It's STRESSFUL!

Lesson four: No, you really don't know exactly how I feel so stop saying that you do. Need I go any farther?

Lesson five: I don't need a wheelchair, I can walk just fine. If I needed one I would have one.

Lesson six: I will not use MS so that I can skip to the front of lines, so please don't ask me to 1. share my disease with strangers, and 2. lie about my symptoms.

Lesson seven: My symptoms might not sound bad to you, but they are hell for me. So unless you live in my skin, don't patronize me. It's rude.

Lesson eight: If you don't want to know the real answer then don't ask me how I am doing.

Lesson nine: MS for me is like psychological torture, please refrain from making comments like "At least it's not a death sentence."

Lesson ten: One simply does not 'get over' MS. It's not mind over matter here folks.

I still don't want to wear a shirt in order to educate the masses. I really don't. I am sharing this because it's true. I know I look normal. In fact I'm glad I look normal! Don't let that fool you tho. Behind that 'normal' facade is a hot mess of crap I wouldn't wish on anyone.


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Who needs a face anyway?

When I'm feeling under the weather my body just doesn't know what to do. I imagine 50 million little SpongeBobs, or the Three Stooges in operation central trying to run the show only end up pressing all the wrong buttons and spilling milk in the 'no spill' zone.

I can never be certain if I am getting sick or having a flare up anyway. I'm allergic to pretty much all pills ever, so it's not like I can pop in some penicillin and be fine. Which means I have to go to my doctor and say "I'm not sure if I'm sick or if it's MS." He's wonderful. He doesn't say "How can you not tell the difference?" like most people do. He just knows me. There was a period when EVERYTHING was blamed on the MS tho. Sometimes it's easy to do that. It's a crutch. Oh, your face hurts, it's the MS. Oh, you're going into anaphalaxis, it's the MS. Oh, you have a migraine? It's the MS. Even great doctors can be shitty sometimes. So I put my foot down, demanding I be checked out for other things, and please stop seeing me as MS Sonja. I'm Sonja, with MS.

First thing I did when I was diagnosed with MS was I signed up for the annual MS 5K walk. I don't do 5K's. Ever. I was still partially numb, but dammit, I was going to walk while I still could! I posted about it, raised about $500 or so, and my husband and daughter (7 at the time) came along. I did it again the next year, and the next year, raising money and walking in the 5K. Rain or shine, I'm there. This has reminded me that there are things that are much bigger than I having a major impact on their lives. I remember sobbing while I tried to hold a brush, and my daughter asking me "Mom, I want you to brush my hair. I want you to do your best. I don't care if it hurts, I want you to do it. I love you" She was 7. She understood that little ritual of hair brushing meant the world to me, and that I (while completely numb then) was still important and capable. She's pretty cool eh?

So today I have a weird headache and my face cannot decide if it wants to be numb or not. I prefer not of course. I'm also SUPER sleepy. And my legs feel like they are wrapped in plastic. What's different tho is that my throat hurts. Anyone ever been happy over a sore throat? I'm telling you this, I could scream for joy off the top of Pikes Peak about it! That means that I'm under the weather. So I can go to the doctor and say "I'm sick. I know this. Isn't that AWESOME!" It's like finding out you're pregnant- you wait for the test to give you a positive or negative result... Well, I just got a little plus sign and I am thrilled that I know what it is!

This surgery I am so desperately trying to raise funds for will have an impact on every portion of my life. If you recall I talked about that cognitive fog, extreme fatigue, the numbness, and so forth? The theory is this- people with MS have build up in their veins. A vein in their chest, and 2 jugular veins. All people with MS reportedly do. All is a lot if you think about it. Some non-MS people also have this build up. When they do, they go to the doctor, get a venogram, get angioplasty, bill their insurance, and life is good. When you have MS, you go to the doctor, they say "that's experimental" you're left to suffer and silently scream, and pray. However, the clinical trials started popping up. Mostly overseas. Then FINALLY the FDA approved ONE site in the states. It's in Dayton, Ohio. It's where I am trying to go.

I spoke with the doctor for an hour yesterday about the procedure, the success rate, the process, the risks, the benefits, the cost, all of it. Let me tell you I cannot get there fast enough! 70% of his patients have seen significant improvement, and the other 30% had (at a minimum) at least some improvement. So 100% of his patients improved. HOLY SHIT THAT'S AWESOME!

Here is what he said the patients had improve- cognitive fog, numbness, tingling, severe fatigue, urination frequency (yes I have that thank you), constipation (yes I have that too thank you), unexplained pain in the neck (I've been trying to get mine diagnosed for almost a year), headaches, fine motor, balance, and so on. WHO DOES THIS SOUND LIKE TO YOU!?!?!?!?!

That is why I want this surgery so badly! I can regain all my Sonja bits! I can stay awake! I can feel things! I can be the word-smithing Sonja! I could feel like I have to go to the bathroom and actually have to go! I could feel my FACE!!! I can brush my daughters hair, I can work, I can hold a pencil, I can know when I'm sick, I can leave the pain meds in the dust, I can be me again! That is why this is so important. If I don't get the surgery the likelihood that I have a stroke is greatly increased. If I get the surgery, I will feel, think, awake, and do more than a 5K to give back. I am a licensed counselor, I have a much needed skill, I can give to those with MS suffering from depression, I can make it to birthday parties, I can do anything! In 10 years it will probably be available for the population. 10 years. In 10 years I will be 48. In 10 years a lot can happen. I pray that the universe will take care of me and make this happen. I am a tigress, I am a fighter, I am funny, and smart, and I have MS. I need my face. That's who.

Click here to donate to Sonja's surgery fees

Pity party, table for none

It took my 38 years, 6 months, and 27 days to get here. I don't recall everyone being there all 15,697 days (give or take) so perhaps a story is in order, which is a good thing because I LOVE telling stories... but this is less fairy tale than I'd like.

Oh a bright and shiny, cloudy and rainy, scary hurricane/tornado day (choose one because I don't recall the weather that day) in Georgia I came into this world... I was a gigantic baby- 137 pounds or so. My mother would disagree with that number. I was child number 2. I was a wild one. My mother would NOT disagree with that...

We did not stay in Georgia as the my dad had packing orders, so off we went to Germany. We stayed until I was about 7, then moved to Colorful Colorado. Just as an aside- I have no idea why they call it 'Colorful' Colorado. There is Pine Tree color and red clay color, and that's it. My parents chose to live in a small town called Woodland Park. It's about 8, 500 feet in elevation. No color, and no air. But when you're a kid growing up in a small mountain town you don't miss grass, or heat, because you've never had it! So in the mountains I stayed. I stayed for primary and secondary school. I stayed in Colorado for college (and discovered there are places in Colorado that actually have grass!) and I stayed for graduate school.

I met my future husband in Colorado, had my one and only child in Colorado, and continue to live in Colorado Springs. And I have grass.

Well who gives a shit about all that? The medical field does actually. I'll get there tho. I'm not quite up to 38 years, 6 months, and 27 days yet.

We are up to post grad school now. I studied Counseling and Human Services. I chose to take the School Counselor path and work in schools. I love the middle school aged students the best and tried to get a position in a Middle School but alas there was nothing available. I landed my first job at a 'walk-to only' elementary school. That means that there is no bus service for those kiddo's. It was a great way to get to know the parents tho, so I used it to my advantage.

During that year I was full of optimism, life, hope and encouraged that I could make a difference in the lives of these kids. Then the stress hit. I'll just say that the conditions at work jeopardized my safety, and the safety of my family. I left with one month to go in the school year, and looked for another opportunity.  It didn't take long for it to come knocking either.

There are 2 very affluent school districts where I live. My next job was at one of them. I was THRILLED! I wasn't going anywhere! This would be where I'd stay for my career! I had made it to the big leagues! And a good ole boys club as I later found out. I am not equipped correctly to belong in that club... and the stress hit.

April, 2009 my neck hurt. A lot and all the time. I got an MRI, they saw something on it. A nodule on my thyroid. Fine. Got a biopsy. Massive allergic reaction to the Chloroprep stuff they use to sterilize skin with before a procedure. They later spotted some kind of shadow near my spine, so it would be a good idea to get another MRI. Fine. Then my chest went numb. Man was that weird. I would go to work, kid about it, and go on my merry way. You see, I had my girls chopped off because they were a wee too hefty for my frame. At that time I was a buck 50. So I thought it was funny to say they were retaliating, protesting, whatever... about removing more than a pound from each. Har Har. Then my back went numb. But only in the spot where a bra would rest. So I had a numb bra area? How bizarre is that. I really didn't think much of it. I was the only person that felt that way tho.

My mother and husband got to the point of demanding I go to the ER. Fine. I'll go. Waste my time. Bah. In I went. They poked me with safety pins. It hurt, but I couldn't feel it. Talk about weird. Here's what the ER doc said to me "Numb won't kill you and there's no medication for it. I recommend you see a neurologist." Dammit. Fine. Pfft. Last thing on earth I want to do.  Shit hit the fan at work, for a variety of reasons, and then my entire body went numb. It was like my entire body was encased in thick concrete. Fine motor skills- gone, gross motor skills- going rapidly, pride- gone, fear- through the roof. Along with the awesome rash I had, I now had a lump in my throat, couldn't brush my teeth, wipe my own ass, eat, dress, brush hair, nothing... Great. Now what? Go to the neurologist!

I might as well have seen a troll, or a mechanic, maybe a cleaning lady, a flight attendant maybe? Most unhelpful man in the universe. His partner tho is one of the most sought after neurologists in the state. I didn't know that then. After much arguing I was finally able to convince the guy that I didn't want a bunch of tests without treatment, I wanted treatment and I'd go along with whatever damn test he wanted. Enter Spinal Tap.

First Spinal Tap- here is what they did not explain to me- when your body is crazy out of control like mine was that makes your nerves hypersensitive. So when that 47 foot long needle went into my back (same doctor as the thyroid by the way) I was not prepared for the amount of pain that would coincide. With a spinal tap blood is also drawn for various reasons I can't recall. Guess what the hospital forgot to get? Guess who had an invalid spinal tap result?

Since I was freaking out because I couldn't feel anything except my face, I couldn't hold anything, couldn't drive, couldn't wipe, eat, wash, etc. the 4 day at home steroid treatment was challenging. Poor Dan. He deserves a medal. I did what I could and ask for help when I needed it. Which was always. I give him kudos for not firing me. Boy was I a mess. Since shit hit the fan at work I was able to stay home for about one month. Which was nice because no one at work new what had transpired with my health anyway.

I fired the unhelpful troll and found myself a new neurologist. She was worse than he.... I had millions of questions. I had no idea what was going on with my body! No one was telling me anything, and as the owner of my body I feel I'm entitled to know. My primary care doctor was fabulous! He was all over the place getting me tests, treatment, seeing me, holding my hand, and encouraging me through this thing. He deserves a medal too. Let's just say that with any question I had for the woman neurologist I was handed a 600 page book, or CD. Bitch, I have no fine motor! How am I supposed to turn the pages! Primary Care doctor and I talk and he wants me to see the early mentioned neurologist because he is the absolute best. One problem, I saw the troll guy already. Their practice states that they won't see each others patients, and they won't allow patients to switch doctors within the practice. Enter my primary care doctor- he made it happen. I now see the best neurologist in the state. And he is fabulous.

Now I know I have MS, not transverse myelitis or any of the other things they thought possible. This from seeing the new guy, Dr. Fabulous, after being hospitalized for passing out while I was driving my family to Easter dinner at my parents house. Those of you who have no clue what it's like between here and there- it's a mountain pass complete with cliffs, drop offs, winding roads, the whole nine yards. So I passed out. My head felt like it was going to explode, my vision vanished, went into anaphalaxis, and I was out. I woke up with the worst migraine ever known to man. I spent 3 or 4 days in the hospital. Dr. Fabulous decided that since my first spinal tap was botched that I should get another one since I was there (oh yay me). Not nearly as bad that time. My diagnosis- ??? They had no idea why I blacked out. The result- severe anxiety for me to be alone.

My poor kid. She needs a medal too. I drilled her. I had her practice. I gave her scenarios and she had to play them out. She hates that shit. She did it tho. She had to know how to call 911 from my phone and what to say. There was no way I was going to have her feel completely helpless. So I went neurotic on her. Maybe she gets 2 medals. Primary doc put me on anti-anxiety pills. Then on mood stabilizers. I was freaking out. 2 weeks later, it happened again. This time while I was at work. I got rushed to the emergency room. This time I was covered in hives. HIVES! That was a huge clue! Turns out I'm allergic to NSAIDS- you know, Advil, Aleve, Ibuprophen, that sort... Totally unrelated to MS. Off the mood drugs and the anxiety pills I went! Hooray!

All that freaking out left me jumpy. Stress is a major contributor to flare ups. So I would flare up now and then. Any time I felt a weird sensation I'd be in to see my primary doc, because Dr. Fabulous is so booked up it matters not if you're having an emergency... So over the course of a year I was put on steroids about a dozen or so times. Not including the IV steroid drip I initially had. Over the course of my first year with MS I put on 80 pounds. That's right. From a buck 50 to 'Sonja, I didn't know you were pregnant?!" "I'm not" "Oh, quit lying, is it a boy or a girl?!" That is an actual conversation I had when picking up my kiddo from school one afternoon. People suck. She hunted me down later and kept saying "But I'm so used to you skinny! But you were so little!" gee, that's helpful.

The infamous 'they' don't know where MS comes from... One theory is it's from the radon that's emitted from the mountains. Colorado has an incredibly high rate of persons that develop MS. It's in our yard, our trees, our basements, and even in the grass. So that's why it's important for the doctors to know where I grew up. Stupid mountains.

Remember I said I have a thyroid nodule like an hour ago? Well, it's still there. My reaction to steroids is weird. Apparently it makes my body think it's going into famine. So it literally puts everything I eat into storage. Or so one theory goes. I'm seeing an endocrinologist to try and figure that all out. I'm a hot mess these days, and a doctors worst nightmare. I have so much going on...

That brings us to about now. The last 6 months have been a steady decline down symptom lane. My brain is in a constant fog. You'll be thankful you aren't listening to me talk this out... That would take FOREVER the way I search for words and try and think of what comes next. My legs are numb, my head feels like someone turned up the thermostat and the pressure, my neck is constantly in pain, and I cannot stay awake to save my life. I'm taking Adderall. Adderall is a highly addictive upper. A stimulant. It makes people bounce off the walls. Me? I can sleep all day on it. It has no effect on me.

Coffee makes me swell up. My fingers are compromised right now anyway, so no thank you. Soda makes me swell up and gives me massive night sweats. Ummmm... that's attractive. Tea makes me swell up. So I'm screwed so far. Still working on that. I haven't noticed many foods that mess me up. Too much sugar = no good, but that's anyone.

So here's a list of all the crap that is happening today:

cognitive fog
mental declination
severe fatigue
numbness in my legs, torso and face
stiff joints, primarily hands
severe fatigue
extreme night sweats (I wake up in a swimming pool)
severe fatigue
cognitive fog
slower mobility
cognitive fog
severe fatigue

Guess which ones bother me the most? I have since left working in schools. I can no longer handle the stress of the job. It has proven too much for me to handle. I do not bow out easily, so it was a huge ego blow. I have a highly specialized degree that it's hard to find work. I'm either over qualified, or not qualified in the right areas. Dan and I have made it work to have me stay at home. I'm trying to work from home and bring in some desperately needed bacon to the table. With my fuzzy, sleepy brain, the last thing I can do is market myself. So that causes stress, which causes flare ups, which makes the symptoms worsen, which causes more stress, which makes things worse... I could do this forever. I have had enough. I want my life back. I want to be a productive individual that contributes to my family and the community. I feel like a waste of space, a useless human being because I can't do anything. I'm done. That's not me! Anyone who has ever met me would know that's not me. So this pity party ended. I signed up for this surgery. I need to raise money because I certainly don't have it. My credit is in the toilet due to all the medical bills I have so I can't take out a loan. But what I do have is faith in my friends, family, and community. I have always believed that people are good. They will rally together and help out those in need. We give our money to kids in Africa for crying out loud, so I must be worthy too. I am handing my well-being over to others. I did the most difficult thing and asked for help. Now I have to let go and hope that it happens. If it does then I can have my life back. If not then I will go deeper into the rabbit hole and get a chair for my pity party table. If only life were that black and white....


Click here to donate to Sonja's surgery fees