Hope. Hope is something we all have, at different times its up and down, sometimes its through the roof.
I wonder about Hope. For instance, my husband has been out of a job for about 3 months (he works in oil/gas) and it was a very long and educating 3 months for our family. We learned to live off of nearly nothing, and how to keep our kids happy and family fed on just the bare necessities. I really think we got an education we needed, that we just weren't expecting. Not that losing your job and being out of work for 3 months is a good thing. But now when those checks are coming in every 3 weeks, they will mean so much more. It will almost be overwhelming, and hopefully our starving savings account will finally get what it deserves as well.
My daughter starts middle school in August, and I was really hoping we wouldn't have to worry about what the kids would have for lunch or dinner day by day. Also makes me think of donations I'l like to make in the future when we actually have money.
I think I need to search for valid non profits that specifically benefit local families who just need a few months of help.
Hope sometimes is for unrealistic things, out of this world things, things that wouldn't ever really happen. Today I have a new hope, my husband has been offered a new job, and after the hiring process and once he begins hopefully next week our live will start a new chapter. ..... So many chapters in life aren't there? ...
In other news my 4.5 year old son has the most beautiful curly blonde hair in the world, and it looks adorable on him (like boy adorable not girl adorable) ... He wants to cut his hair like captain America... That would be so dramatic! I literally think I might cry. I need to post a picture of his magical adorable blonde locks. He should be in magazines.
When do you hope? What do you hope for? Why do you hope? Hope is good, hope is bad. Today I have finally had Hope as a vision of the future and what it can be, and I'm so delighted and hopeful for my family and what we will become!
I usually write these in the middle of the night when thoughts and passions are burning through my head keeping me away. But this one has weighed heavy on my mind for a long time, and even heavier since I received a specific comment yesterday.
I know I'm sick. I know it is affecting my business, and so far, 99% of MMB fans and shoppers have been supportive. That means so much to me, if makes me feel loved, and cared for. I stay at home everyday all day, I have no human interaction 85% of the time (besides my kids and sometimes my husband - he works alot). That does something to you. And when I have people far and wide who CHOOSE to continue to shop with me, knowing it may be weeks until they receive their product, and they support me - It really keeps me going.
There are days it is hard to get out of bed. There are days I wake up and can feel that a good portion of my brain just isn't active today. And I know I will be dealing with this until the specialists come together and figure out what all of my problems are. So far I've got a diagnosis of mild lupus and fibromyalgia. I need to see a Neuromuscular specialist to rule out possible SPS (stiff person syndrome) - based on my symptoms and current treatment, this most likely matches what my issues are. Now I have other issues with my body not accepting iron, causing me to be anemic, and so far all options the doctors have tried aren't working - I go in for a pelvic sonogram soon, I'm sure they'll do even more blood tests, and hopefully they'll figure it out and fix it.
Do I sound like an 103 year old woman yet? You should see my prescriptions, the pharmacy probably has no idea I'm about to be 33 instead of 103 as often as I'm picking up there, well, someone else is picking up for me.
The MMB is my window to the world. It is named after my daughter who is my heart and soul, when someone is turned off by the service they receive, or how long it takes to receive their item, it hurts me. I know its not personal, and it doesn't hurt me in a boohoo way, it hurts me in a way that I feel terrible that person feels that way. I want them to understand I care. I'm not every boutique out there on Facebook trying to get into your pocket book. Infact, the MMB doesn't even make a profit. Maybe the fact that Soldsie isn't working right now is good, because then I won't have to give them 4% of all sales, when I'm already giving 2-3% to the paypal or stripe who processes your payment. One less bill?
Anyway. This is my way to get my feelings out. To get my thoughts out, this is my diary. Of course there have been days I've thought... I can't do this anymore, or I don't want to. Those days are few and far between. There are so many days I think "I want to! I want to pack orders! I want to get online and talk to these ladies!" I just physically can't most of the time. The other day I was all pumped and ready to go on packing orders, I took a shower, and then I was like a corpse, I felt like Bella in Breaking Dawn when she's all pregnant and looking dead (I'm not pregnant).
Yesterday my mom was here helping me pack orders, I'd pull the product, put the order on top of it, she writes the order # and name on the bag and puts the product inside and puts it in a tub, then later I ship all the packages, printing labels for them so USPS can pick it up, or we can drop it off - depending on the time.
While my mom was here, (she can be quite the negative Nancy about 3000% of the time) she mentioned I look yellow, well, that sucks, because that would mean lupus may be affecting my liver, that starts some new worries. The comment that affected me most was "you need to get rid of this business, close it or sell it or something, you can't do this anymore."
My heart almost broke.
I mean its my mom, and regardless of how rocky our relationship is, you still take to heart every word she says. It holds more weight than the comment of a stranger, or an acquaintance. All I could think about is, I don't want to lose this. I don't want to lose the MMB. I don't want to lose those connections I've made, I don't want to lose those MMB fans, I don't want to lose those occasional emails I get that really motivate me and make me feel good about what I'm doing. I remember one email, after I restarted the boutique as the "Comeback" I had one woman email me and say "Can I just ask, why did you ever leave us?" That meant a lot to me. That still means a lot to me today, I think about it often, I don't want to leave you. I will find a way to make this work.
I also get emails like the one I received a couple of days ago:
"Ashley I have been around since you first started this business, and watched it grow. I did a flash sale with you a few month ago my order was wrong I gave you all the information you asked and needed and no response. I let it go ya know people get busy and I'm sure you get a lot of emails. But now I've been waiting for the other flash sale you did for my dresses. One was for a wedding last weekend. But you know I didn't say anything cause I get it your busy. I go and another dress and called it a day.
It is Valentine's Day, 2016. Just another ordinary day for me. I've had the past week off work because I'm trying to adjust to my medical issues & medication. Hopefully I will be back next week. But that is getting ahead of myself here....
The store I really want to tell, is the story of how the MMB rose, and fell.
You've probably heard this story before, so I'll sum it up. April 2013 my BFF and I filed legalzoom paperwork and created what we needed to start the "Marlie Madison Boutique" a vision of mine that had been in my head as long as I can remember, named after my daughter.
Things started off slow, we didn't have alot of capital or a loan to start off with, so it was just going with the flow.
Well, in September 2013 my BFF meets girl online, and within 6 weeks disappears from my life, after 8 years of solid friendship. More than friendship, Family.
2 things happened at this point. (I spent the next 2 years working on getting him removed from the MMB legally, as he wanted, footing the expense and doing the work to get it all done)
1. Christmas 2013 - The MMB exploded. With nearly half a million dollars in revenue in 2014 - it was insane. I ran the business from my home, my computer was chained to my hip. No I have no college or previous experience in owning/running a business like this on my own! It was scary. It was exciting and scary.
Here is one thing to remember - Businesses can grow TOO fast. And if you don't have the right people, place, and things, it can be a very bad thing, not to exclude the death of your business.
This didn't kill the MMB, but it opened many other very tempting doors..... Storefront? or no? Partnership, or no? Investors for Capital & loans, or no? It was all up to me. I had no idea what the hell I was doing. All I knew is - I loved the MMB. My passion for it, for the people I was finding clothing for, for the MMB fans, for the style the MMB represented, I was proud of it - and I wanted more of that.
2. Auto-Immune diseases strikes. Is it lupus? Connective tissue disease? Mixed Connective Tissue Disease? Now they're saying maybe a Neuro-muscular syndrome and need further testing. Who knows what condition I really have, but I feel it. It is definitely there. It affects me in so many ways that make me feel trapped inside my own mind.
My theory to how this autoimmune or neuro-muscular syndrome could have been triggered, is when my best friend, my family, walked out on me and turned things so ugly so fast, for someone he didn't even know, for someone who didn't know me. Because she was scared and threatened.
And we skip to December 2014.
December 2014 we signed contracts and made down payments to build a new home! Our dream home. A month later my husband got some bad news because he works in the Natural Gas industry. Even if you have been living under a rock for the past year, I'm sure your rock was affected by this in some way, or you've atleast heard of it.
His pay was cut... and a couple months later, cut again.
Here we are - struggling to keep 2 stores open for the MMB, online, our new home, 2 cars, and keep our kids in the private school they've been attending.
Knowing that even to this date - the MMB has not made profit, because all $ made was put back into the company in one way or another (Facebook ads, Inventory, labor, rent, online fees) my husband and I decided, maybe I should start looking into getting a job.
Well, I knew if there was any 1 place in the world I wanted to work - it was for Magnolia. There are 79 Magnolia Design Centers in the United States, they are located inside Best Buy stores (not to be confused with "Magnolia Home Theater" - Trust me! There is a huge difference).
I called up a friend who still worked there and happened to be the manager of the area, and we met for lunch.... Things had changed alot, most of them for the better. I was so excited, and about November 1st I started back at the Magnolia Design Center in Grapevine Tx!
Now after not having worked in 4 years, you can imagine that struggle. But my excitement helped with that alot. You see, I'm not a normal girl. I love audio video equipment and electronics.
I love to learn about it, build it, sell it, hook it up, play with it, watch it, control it - you name it, I'm excited.
Its the perfect thing for me to do, building whole home automation for people, media rooms, lighting control, surround sound, outdoor audio, etc. ITS SO MUCH FUN!
But the atmosphere was a beatdown. Here I am working with 8 other System Designers who are all male, and have a male-work-envioroment mentality.
What I mean by that is, they don't understand when you say your husband works out of town 300 days a year so you're basically a single mom and your 4 year old has a fever and can't go to preschool. Or when your undiscovered auto-immune/neuro-muscular disease flares up and you REALLY need the day off. Why it affects them? I have no idea - because we are paid 100% commission, me not being there should only enhance their paycheck, not take away from it.
They choose to deal with their frustrations by cruelty instead of civilized conversation that just may lead to understanding on either part.
Tit for Tat. Or whatever they say. I'm working through it. I must say though, I find that as I get older (I am 32 now) once you get beat down so much, it is much harder to pull yourself back up naturally. I use to bounce back from negativity and ugly comments immediately. Its been weeks now and I'm still having a hard time overcoming it.
So a couple of weeks ago I was at Walgreens getting a prescription for my little man, and of course some girl scout cookies cause they were selling outside. I noticed a man who looked like the was probably homeless sitting on their bench outside. He had a backpack with him for his belongings etc. I thought to myself, "I have some cash in my pocket from those girl scout cookies".... Maybe I'll give it to him?
I walked over to the man and started talking to him, asking him questions like "where do you stay?" "but isn't it so cold outside?" "do you have children?" ... While he answered them I was reminded of 1 thing.
When I grew up my dad was an alcoholic. I don't mean like oh every day I have a few drinks. I mean like oh every day I drink a handle of Windsor Canadian over ice. His best friend Rambo did the same thing but with a cheap version of scotch. My daddy died 7 years ago, how Rambo is still going is absolutely a miracle. But I knew the smell. I knew the haze and movement in the eyes, from 5 feet away, I could smell it. So many feelings rushed back to me. I decided not to give the man any money, because if he has enough money to get wasted, he has enough money to eat. If he wasn't drunk, he might have the skill set to find himself a place to stay indoors.
Back to reality.
So I've had the week off work, I saw a new rheumatologist - nothing new or special happened. He thinks I have a neuro-muscular syndrome or disease of some sort, so I've been referred to a new specialist, with ideas of what kind of testing they may do on me. yay. You know really, I don't care, as long as they find out whats going on and can help manage me. So I can live, and be productive and do what I want to do. Some of the medication I'm on right now affects my memory negatively, mainly short term or just words or names that leave my grasp nearly forever, how am I suppose to do my job like that? I mean I know it could be done. But with the "support" from my team, being "on my side" while I get use to all of this, it either isn't going to happen, or it is going to be a really really difficult task. I'm already balancing work-motherhood/life.
I've had alot of time to think this week about the MMB. Where I want it to go, what I want to do with it, etc. People have asked if I've shut it down, customers have been pissed (rightfully so) because I didn't ship their package out nearly as soon as I should have (sorry, no excuse is a good excuse, but as you can see I've got alot of shit going on... and obviously some decisions to make, right?) Inventory is mainly winter which just ended. I'm pulling out of my store locations, and trying to focus online. Hopefully people will still believe in me, or the MMB.
The MMB has bills. There is about $30k in debt that I'd like to see the MMB pay itself (rather than my family) so it would be nice, for one more year, to keep it running - don't see any income, and just pay MMB bills off with it. Monthly expenses, and loans.
So far thats my plan.
1. Get organized, clean up, clear out all current orders or issues.
2. Take small batches of inventory at a time and sell them in the new Facebook Group or on Instagram, until everything necessary is gone.
3. Sell all fixtures necessary for the retail locations.
4 Use any capital made from this to a) stay caught up on bills but more excitingly b) start getting new inventory for the MMB!
Like I said, sales would start off slow. Probably about once a week. Me and my sitter (she doesn't babysit me, she watches my kids, shes awesome) can work together immediately after the sales and have all orders shipped within 72 hours.
What are we losing by doing this?
The pretty MMB packaging, eventually the magnets that were included in all packages, the pretty tissue paper and bow wrapped packing for every single order.
Wow, if you've made it through this whole thing, you've just read my brain online. What has been going through it over and over for about a week.
I appreciate your interest, especially in the Marlie Madison Boutique.
A comeback is more than possible! It is necessary. It is going to happen. We can and will. I look forward to it.
But most importantly, I hope YOU look forward to it.
In any business you're in, whether its owning the MMB or being a System Designer for Magnolia in Grapevine Tx, the best possible thing you could hope for, is a referral. Word of mouth business.
Telling someone you loved this service, this experience, this media room built for you by YOUR system designer, whether its telling someone how quickly you received your amazing apparel, how when it didn't fit it was taken care of very quickly and fairly, per the terms and conditions on the store - no horsing around, etc, That is what we all hope for. Every Sole proprietor, LLC, sales person, business person.
I ask you think about that, not just for me. But in your every day life. Give credit where credit is due! Your opinion matters more than you think, it matters even more the way you bring it across someone.
Getting back to work!
I'm in this space of time where life has slowed itself to a manageable level. Like I feel like I can look around me again, and not see things just flying by faster than I can even see what they are. As if I can actually reach out and touch them, or "manage" them. Feeling like you can manage things happening in your life, is a great feeling. I hope this sticks around for a while, but I have a feeling the end of the month is going to get pretty hairy :)
I've prepped for this in advance this time with the MMB though. I've got my staff training this week to print, pull, pack, and ship online orders, we're dabbling a bit in returns/exchanges (those can be complicated so we're taking it slow). This is going to be a major stress reliever for me, because I know that my customers will be happy, and not wondering what fraudulent ho on the internet just ripped off their card.
In 15 days we sell our house. Don't get me wrong on this whole slow down thing, I've still got a ton to do well before that 15 days rolls around, and Joe won't be home for 13 more days. So it will all be nice and done by the time he gets here. Yay for him ;)
In 21 days we buy our new house. Then the whole move in move out as quickly as you can thing happens.
So looking forward to all of this being done with! The stress of all of this, 2 kids, 4 dogs, 2 cats, an online business with 2 stores, selling a house and building a new one, should not be managed by ONE person. In other words, I don't recommend it. Unless you have a good plan in place with your doctor for stimulants or steroids when your body breaks down. Then again not everyone has lupus (or connective tissue disease).
Things I'm looking forward to this summer... Of course the new house!! The most stressful thing I've ever been through was the past 7 months, decided to and going through with building this house. It has been long awaited now, and I feel like I should have paid for it with stress by now!!
I'm looking forward to giving some of the responsibility of the store to the girls, seeing what they can do with it, freeing me up to be a mom. I remember so many fun times with Marlie. I took that kid everywhere, we did everything...together. And with Brady, and Marlie too now, I'm not anywhere near as involved as I was. That is a guilt that weighs on me.
I'm not made to be 100% "SAHM" (Stay at home mom) but it is definitely something I respect, and something I look forward to doing a little bit more of in the future - being at home, and being "mom"!
Before you know it, we'll be settled in the new house and July will almost be over. August in retail means "Back to School!" and right after that starts the Holidays! Oh geez, I was born for this stuff, I must have been because I LOVE IT SO MUCH! One of my favorite parts of being in the store now, is getting to meet people. Asking them if they've heard of my boutique on FB before, and introducing them, and chatting with them. I love it when I can connect with someone and help them find what they want. And this fall I'm partnering up with another powerhouse mind like mine to work on all the Holiday trade shows across the DFW metroplex together! We've got big plans. This is so much fun. This business is alot of work, a ton, but it truly makes my soul happy.
Recently I've upset a few customers because their order wasn't shipped as quickly as it should have been. And I'm first to admit, yeah, it should have been shipped sooner. but this transition period didn't give me alot of option when it came to doing anything differently, so hopefully those who were burned by either the lack of response in "where is my order" x3 or just tiffed because their order didn't arrive as fast as their amazon prime free shipping over night its under your pillow before your wake up kinda thing, hopefully those people will give the MMB another shot. Because the way I've got it setup now, is fail proof. The girls are packing and shipping orders immediately as they come in. We still have some of the super last chance clearance orders to ship out, but other than that we're rockin and rolling. And soon I'll be sending out their email info as well, so you can get in touch with all of us about your issue or question. We've got several different body types working for us to give you a well rounded opinion of fit, style, etc :)
I'm so tired. Was just excited to get that off my chest. Thank you for reading this. And thank you for being a part of the MMB :)
This blog is for me. Think of it as my teenage diary I scribble in when I have too many feelings inside that need somewhere to go.
How, and when I got brave enough to not only type them up, but to let them be here for anyone to see, I don't know.
So if you decide to read this, no judging. We're all people with our own spirits, feelings, conflictions, battles, and thoughts. And that is ok.
Last Friday I had a neurology appointment. I started into a "lupus flare" probably a week before that, so I was kind of out of it on the way there. When I'm in "flare" I get confused easily, or forget things, maybe you'd say I have "cognitive difficulties" I don't know, I'm not a dictionary. But when I drive, I know to stop at red, and I know green means go, but I always worry that I'm missing something.
I drove all the way out to my Dr appt, a good half hour away thinking... What is this chick going to do for me anyway? How is she going to help me? I have lupus, and she is a neurologist that specializes in sleep studies.
Now here is where this story can go 1 way or the other, you see, I'm already skeptical, so either I can go in there and this doctor can knock my socks off and really impress me, and take care of my issues, or disaster can happen.
So I'm thinking to myself. Damn, my muscles hurt so bad right now, from the back of my head, down my neck, through my shoulders, into my chest, down my back, I can feel them all... When they act like this (98% of all the time) they feel like they are turning to stone, and it hurts. I'm thinking, besides that, I can feel every little tiny joint in my shoulder/collar bone, elbows, throbbing, aching, it hurts. Hurting makes me sad. All of this makes me tired. So what is this doctor going to do for me? What the heck am I even coming to this neurologist for again?
The last time I was here, about a month ago, it is because my primary care doctor wanted me to see her for something called "provigil" because maybe I have narcolepsy, or chronic fatigue syndrome (on top of other things, awesome) and this drug is suppose to give you energy throughout the day, however, you need to have a "diagnosis" before you can get prescribed medication. So I go see this neurologist with a sleep specialty.
This woman things I need a really old school anti depressant to help me "calm down" so I can sleep. So she gives me this prescription... I take it as directed for 3 weeks, still not sleeping. Ever received an email from me at 4 am? Yeah, that's me not sleeping, why waste it laying there staring at the ceiling thinking about all the crap I need to do, when I could respond to customer emails, or build onto the website, right?
3 weeks in, this drug has made me dizzy - all the time. I don't feel comfortable driving because I'm always so dizzy. Ok cool, so I have a prescription to cause dizziness! If I ever become a villain, I'll turn it into a gas form and take over a city with it by making everyone super dizzy all the time.... Yeah, I quit taking that one 3 weeks in.
Back to Friday, on my way to the appointment, all of this in my head, already skeptical of what is going to happen, thinking.. sleep is the least of my problems, what about all of this pain? My skin feels like it has the flu, it aches, it hurts when my t-shirt touches me, when the air comes out of the vent in the car and touches my arm, it hurts. (Lupus + Fibromyalgia = a partridge in a pear tree) Who knows, maybe she can help me with more than I think. I'm sure hopeful she can.
I get out of the car, make it up to the office, I'm greeted at the sign in desk by 2 medical assistants who inform me that the doctor I'm seeing had to leave early, and they need to reschedule my appointment for Monday, but they can refill any prescriptions I need, or email the doctor for me.
Do I cry now? or do I turn into ashes and blow away in the wind that unfortunately isn't in this office to blow me away somewhere else.
I let them know seeing her for sleep, is the least of my issues, that I have lupus, and I have other issues that are far worse off. My physical therapist recommended I try Lyrica or Neurotin. Mind you, I only take 1 prescription daily, and that is Ativan, it is the only thing that helps with my muscle pain and keeps it somewhat under control. They say "Yeah, you definitely need to see a dr for that, we will get you back in Monday!" I don't want to drive all the way back out here on Monday. I don't have time for that. "We can get you in to the office by your house with another doctor on Monday!" Ok, fine, lets do that.
So I made the appt for today, Monday, and I went and got in my car, and I sat there and cried.
Feeling helpless, like there are no doctors out there who actually care, they get into a room, doesn't matter what the patients name is, whats wrong with you, what do you need, done, next. Well for those of us who aren't that simple, do they think about it when they get home? Do they think about it in down time, in between patients, do they try to solve the puzzle of "Wtf is wrong with this girl"? If you know of one that does, send me their info: email@example.com
Today rolls around. I'm not hopeful for this appointment. I'm seeing a neurologist today, for what? Oh hell, I'll give you a list of problems, you pick which one you want to tackle, if any.
What came out of today's visit was "You know we're just doctors, we don't know everything, in fact, we don't really know much, we just know a little bit. You should see (the other neurologist from before) and do a sleep study with her, that is what she recommended. And you should see a rheumatologist." $40 copay for his advice to see the doctor who skipped out on our appt before after making me waste 3 weeks of my life on an anti depressant that was suppose to help me sleep but just made me dizzy. WTF happened to ambien? or one of those things? And then he recommended a new rheumatologist. "This dr is very good, but he is very busy, we'll send you to this other doctor" Whaaaat? I want the good one. haha... The good one, yeah, I'm just kidding, thats like pretending that Mighty Mouse is real. Back to the car, to bawl my face off. Again.
You see, I have a history of this. Of doctors not caring, not paying attention, not doing anything about anything. Maybe this breed of doctors has grown up and been educated to be so scared of being sued, that they don't actually do anything.
When I was younger, in my mid 20's (about 23) I went to several doctors to try to figure out why my back/neck hurt so bad. I had allllll kinds of tests and blood work done. Ruled some things out, never figured out what was wrong. One doctor, a spinal surgeon who did an MRI said (he looked very tired, so I'm sure thats a good excuse) "Look, your MRI showed constant muscle spasm in your neck, and I don't know why its doing that, but I could do a hundred MRI's and I still might not know why, so I'm going to refer you to a pain management doctor."
Hello, My name is Ashley and I'm 23, and I'm on my way to pain management.... forever? Without knowing what is wrong with me, or why, or how long I'll be under pain management care.
ARE YOU SERIOUS?
Ok, so I went to this doctor, yes, he gave me pills, injections in the painful muscles. I wasn't interested in that. I never went back.
I don't want to take a bunch of pills, I don't wan't to just cover something up, I don't want to become dependent, I want to know what is wrong with me, and how we can best manage it, I get that it isn't curable, but there has to be something that will help.
After that round of all those doctors with no end result, I quit. I went almost 7 years without seeing a doctor for my back pain.
About Christmas of 2013 is when I started getting lupus symptoms. Things started to get bad, I was miserable, it was horrible, it was really really hard to deal with. There were days I could hardly get out of bed. Or I'd get out of bed and 15 minutes later HAVE to lay back down. It is insane, when your mind is like "this is stupid, you just got up" and your body is like "you can lay down voluntarily, or I'm going to put you down, your choice" Well, I'd prefer to lay on my bed than my office floor, so I'll just go lay down for a bit, thank you for those options you lovely little body you.
When I presented my symptoms to my primary care doctor (who I really like, and trust.....) she said I needed to see a rheumatologist.... Eventually I finally went.
My first Rheumatology appointment was great! The doctors office was slow, in fact, I was the only patient there (it was at the end of the day) and she took her time with me!
She asked me a lot of questions, examined me, ordered x-rays and tons of blood work. Right off the bat she suggested I had fibromyalgia, but she wasn't so sure about the lupus, however the blood tests would tell.
I was excited about my follow up with her! I might finally have an answer, I might finally have a solution! I might be able to find out what is going on with me, and have a doctor who has a plan to help me! I could hardly count the days to my follow up!
Finally it was time to see her. Things are different this time. There are other patients there, they apparently JUST switched computer systems, things take a bit longer... but that is ok! Because I get to hear the results of all of my tests, and work with my doctor on a plan to get me better!
I'm in the waiting room, and the doctor comes in. She isn't sure who I am or what is going on, but she's going to look it up in the computer. Oh damn, she can't figure out how to work this new computer system. She's quite irritated about this. She can't even figure out how to pull up my xrays. She's also running behind and has another patient in the room right next to me waiting on her.
She gets the xrays up. Something is wrong with my hip (the left side, I had an 8 pound baby 3.5 years ago and he destroyed me, I had a really hard time walking for a year and a half after I had him, and I couldn't lay flat on my back on ANYTHING except my tempurpedic bed - if I tried, I would have terrible pain, and wouldn't be able to get up, and it would take a while for that pain to go away)
So there is something wrong with the hip, that shows up quite well on the xrays, the radiologist recommended other tests, and named them, but my doctor said "oh no, we'll look into that in a year or two or three, don't worry about it"... But I am worried about it, it hurts, I want to know what is wrong with it, how can we fix it? "No no, we will look into that in a few years, that is common for women who have babies, it fixes itself in about a year" well, my son is 3. Still, she insists in a few years.
"You have lupus, here is plaquenil, take it every day and get eye exams yearly, stay out of the sun, I will see you again in 4 months"
Ok, so I have questions. Lots of them. Guess how many she answered? 0
Guess how many times she looked at my face. Right around the number 0
Now had I been that computer monitor she was fighting with, I probably would have felt a lot better about myself, it was getting quite a bit of attention and she was trying to solve its problems.
I went home upset. I had a lot of questions. I wasn't going to start taking the plaquenil until my questions were answered. It is an anti malarial drug, and once you start taking it, you aren't suppose to stop, otherwise if you start again - it may not work anymore. Also, it has a high risk of doing something really bad to your eyes. I forgot what it is, but you have to get annual exams from an ophthalmologist. Plus I've heard from my Lupus group on Facebook that plaquenil can have all kids of horrible side effects, and they aren't sure if it is even effective at all.
So I google... I want to find the BEST rheumatologist around, the almighty who is guaranteed to help me, the best, the know it all. I find a fancy out of network doctor in Dallas, may as well be a celebrity rheumatologist. He's written books, collaborated with informative websites, and all kinds of crap.
Its a lot of money ($1200) but I schedule the appointment. He gets me in quickly, I'm excited to be there, its far far away, an hour and a half, but I'm excited and ready for this.
Looking over my blood tests from previous doctor, he isn't sure if I have lupus or not, or why she even ran some of the tests she ran. Apparently I tested positive for medically induced lupus, so he said? I wouldn't know, she didn't tell me anything.
He does plenty of his own tests, and xrays. Pokes and prods, asks a lot of questions. He gave me magnesium as a supplement to take, and a prescription for vitamin D (I'm pretty deficient in that) and I was to come back when he had the results of his tests. He talked a lot, about possibilities of this or that or something about cherry tart, something about using hydrocodone for a stimulant since it makes me super hyperactive (but uhh, I'm allergic to it, and taking that as a daily supplement probably wouldn't be good, right?). He talked and talked and talked a lot.
The follow up appointment, he says I definitely have fibromyalgia, and I definitely have something going on, it may or may not be lupus, because I'm in an "indeterminate" range.
So what do we do? What now? Wait for something to happen?
I go back to my primary care doctor eventually, and let her know... Hey, I need you to start filling my ativan again, because this guy isn't going to unless I go back up there and see him again.. and with the first visit being $1200 and the 2nd being $800 and it wasn't any more productive than anything else, I'm not going back.
So I go see primary care doctor... Tell her I would like to do something about my exhaustion, and not sleeping... So she refers me to the neurology sleep specialist... and now we're back to the top of this "blog".....
Now you know the back story.
So what is with doctors?
I honestly feel like you're in, they check you in by your assigned number (birth date and name), assess you quickly, and on to the next.
Honestly it sounds like some kind of a German camp. Except they don't beat or gas you, and you can leave any time you want to.
They're just herding people through. Do they think about anyone when they leave work? Do they care about anyone? Has it ever occurred to them to call someone and follow up? And I don't mean their nurse or medical assistant, I mean the actual doctor.
Maybe I'm asking too much. I just want a solution. I want my Dr. House. I want a doctor who is going to say, ok, that didn't work, lets try this, or this is a problem, so lets try that. Or this will knock out 2 problems at once, then we can reassess in a couple of weeks and see where we need to go from there.
Where are those doctors? Do they exist?
I'm tired. I have a life. I want to live. I want to live my life.
And I've got shit to do.
Like 109 orders awaiting shipment right now, so I'm going to go get busy until I crash.
If you made it this far, wow. I guess I'm not as boring as I thought I was ;)
Thanks for listening, it makes me feel like you care. Thats a good feeling.
The word "rare disease" makes you think it isn't very common...
When it happens next door, it doesn't feel so rare anymore.
My next door neighbors had the light of their life, a BEAUTIFUL little boy named Jackson. He will be 2 this month! (April 2015)
Devastatingly, when Jackson was about 6 months old, he was diagnosed with Krabbe disease.
Things like this are what make you question everything. Life, faith, you'll ask WHY more times than you can count.
I can't even begin to tell Jackson's story with justice. But there are hundreds of little kiddos out there just like him, fighting to live, fighting to breathe another day.
If you are thinking about starting a family, if you are pregnant, if you have a friend or loved one who is pregnant or thinking about starting a family - Please, educate yourself on this thing called Krabbe disease, leukodystrophy.
Donate to the Jackson Project through the end of April 2015, and the MMB will issue you a gift card in the amount of your donation, up to $20.
Donate $5 to The Jackson Project - Get a $5 MMB Gift Card
Donate $10 to The Jackson Project - Get a $10 MMB Gift Card
Donate $15 to The Jackson Project - Get a $15 MMB Gift Card
Donate $20 to The Jackson Project - Get a $20 MMB Gift Card
Get it? Good. When you get your email confirmation from your donation to the Jackson Project, forward it to Ashley@MarlieMadison.com and make sure you create an account on www.MarlieMadison.com I will then issue a gift card in the amount of your donation (up to $20) to your MMB account - which will apply directly at checkout. If you wish to give this gift code to someone else, please state who you'd like the gift card to go to & include their full name & email address in the email you forward to me with your donation receipt.
Thank you. A million times, thank you. Thank you for reading about Krabbe Disease. Thank you for donating. Thank you for supporting new born screening for Krabbe disease (I know you will once you read about it).
So seriously. How do you know when you're overly emotional? Is there a point to which you really should take some sort of medication to control yourself?
I've been on lexapro since my dad passed away, its been like 6 years I think. December 29th of 2008 is when he passed. Anyhoo, I haven't been on it in almost 2 weeks (not because I'm going to quit taking it, because I'm too lazy to call Walgreen's and talk to the pharmacy staff and say "Hey! My dr ordered 3 months of this, so will you go ahead and refill it for me?" So I'm judging myself in every way now.
The other night we went to see Cinderella, my husband, my 2 kids, and myself. The trailer for the Avengers: Age of Ultron comes on (which i already have tickets over a month in advance BTW) and of course, tears come out of my face. Just like when I was a teen and I watched Spice World & they made it to the concert, tears came out of my face. Overly emotional? Crying during - not even the movie - but the trailer?! I was so excited!!!!
***Grey's Anatomy Spoiler Alert***
Well, tonight I was watching Grey's Anatomy, catching up on the past 3 episodes on my DVR, and I get to the point where Dr. Herman is finally going to have to get her surgery. And its leading up to everything, Amelia is emotional, Herman knows its about to happen, Arizona is emotional, Callie is emotional for Arizona, guess who else is emotional? This girl right here!! I'm like tearing up because I'm like OMG! Its going to happen! Seriously! Is she going to live?! I love her so much! Arizona needs her! Grey+Sloan memorial hospital NEEDS her! Oh can Amelia do it?! Can she pull it off?!
Herman lives, she's blind, so more drama there, but man, the "climax", that ride leading up through that surgery! Emotional rollercoaster. Please tell me I'm not the only one who cries during this stuff! Seriously. I love it, but I can tell that I'm far more emotional when I'm NOT on my lexapro than when I am. I think I could have contained myself during the Age of Ultron trailer if I had been on my lexapro, and I probably could have handled the whole Amelia/Arizona/Dr. Herman thing tonight also, had i been on lexparo.
I'll get that dang thing refilled! Because I hate feeling like a weenie and being the only one in the theater who cries over excitement over an action flick where a robot tries to destroy the world and some super studs (yes, I'm talking about Thor & Cap & the incredible Black Widow) fight to save us.
In some ways its a rush, and its so exciting, but I've never had anyone to share THAT much excitement with! Never had anyone to get teary eyed and cry with me when Black Widow drops out of the airplane on a motorcycle and races down the road to save the world! Or when the Spice Girls finally make it to the damn concert, or when Amelia realizes, Damn it, She does NOT need her brother! She is good enough! And she CAN handle this brain surgery all on her own!
Do you know what I'm talking about!? Ya feel me?! Is anyone else out there feeling like an emotional wreck when they watch their favorite things on TV?
If so, you aren't alone!
This is 2014 and there is no "True to Size"
I no longer believe in this thing some call "true to size." I have heard of items "running big" and "running small"
but when I think back to when I was a kid, shopping with my mom... That was normal right? Sometimes within
a designer occasionally there will be a piece that runs different from the rest of the brand, or sometimes a small
at one store will resemble a medium or a large at another start - its weird, but hasn't it always been that way?
I no longer believe in this thing some call "true to size." I have heard of items "running big" and "running small"
but when I think back to when I was a kid, shopping with my mom... That was normal right? Sometimes within
a designer occasionally there will be a piece that runs different from the rest of the brand, or sometimes a small
at one store will resemble a medium or a large at another store - its weird, but hasn't it always been that way?
I know some people are concerned about what size they wear "But I normally wear an XL and it is too small"
so get the XXL, right? Who cares what size it is. You'll look good in the XXL. Cut the tag out of it. Call it whatever
size you want. You're hot in it, wear it. We are the harshest judges on ourselves - the most critical of ourselves.
I've seen this over and over again with the MMB models "are you sure this looks again?"
"Dude, I would totally do you, are you kidding me??" They have no idea how amazing they look in that!
Bottom Line... We live in an age of online boutiques carrying randomness from designers and vendors all over who
when asked "Do you have a size chart?" They make a Scooby Doo Line sound as if you're speaking alienese and
have never heard of this nonsense before. I don't get it, but its what we have right now.
Right now the MMB is trying to make a difference, and not just carrying small-large like everyone else.
Our goal is to make a difference where it NEEDS to be made, in plus sizes. Right now, what we have to work with
is what is out there. Whitney and I will do our best to work with you on what size you need, with some things
running big, and some things running small. The best advice comes from YOU though. We process returns/exchange
and then we learn.. "So and so normally wears an XL in our maxis and this time she had to get an XXL, so obviously this one runs small."
We hear it all, we see it all, so use us. Want to know how something "runs"? Be specific.
Because each item, each designer, each brand, its all different. Just like it was when we were kids.
For anyone who is concerned about what size they wear, please don't be. Its not worth it, get what size fits, and look good!
And I leave you with a post from Brittany Gibbons....