MS Update: I'm Getting Better!

I KNOW your prayers are working! I feel such a relief that I've had so many people praying for me when I couldn't find the strength to pray for myself! And, now I'm at a place where I'm confident enough to say that while I'm still climbing that uphill battle, I'm gaining so much ground and getting a lot stronger everyday. I'm almost a completely different person than I was this time last year. And I thank you for praying for that! So... what's changed for the better?

The pain in my neck is manageable on a daily basis, so I'm not holding my head crooked anymore. I still have issues with aches and weakness if I ride in a car or have to stand for an extended amount of time, but I have a neck pillow that helps if I rest my head on it from time to time.

The daily chronic migraines have shifted to regular daily headaches. Sometimes the headaches come every other day if I'm lucky! Now you may cringe at the thought of having a headache pretty much every day, but if you had a migraine almost everyday for over a year, you would feel SO blessed that the pain was reduced to a simple headache. The same kind of stress headache that every normal person gets from time to time. I don't even have to take migraine medication anymore! I take ONE goody powder either every day or every other day. I have to be careful taking Goody powders, because I'll get bleeding stomach ulcers and horrible heartburn if I take more than one each day.

Hmmmm.... What else has changed?

The pain in my joints still aches, pops, cracks, and wiggles around everyday, but one tiny muscle relaxer, Flexeril, helps me keep the pain manageable (such a blessing!). I feel stiff a lot of the time, but I could also contribute SOME of that to sitting a lot. I sit in the floor when I make jewelry, paint, upcycle my jewelry boxes, watch movies, write blog entries, etc... Pretty much just about everything I do is done sitting on top of a pillow in my living room floor, propped up on a huge lounging pillow. This isn't new, and I've been a "Floor Person" for months, since around November 2011 when I started having really REALLY bad upper back pain and dizziness. I wasn't nearly as nauseous when I was closer to the floor, and the room didn't spin as bad if I was "grounded." And the pain in my upper back could only be relieved if I was sitting in the floor, propped up on something.

The pain in my upper back was almost unbearable. It felt like someone was squeezing me as hard as they could right around my bra strap. It was hard to do much of anything without a lot of extra effort, even breathing.

• Good news, it was just the MS Hug, (also referred as Girdle Band pain) and it is something that comes for a few weeks and then GOES away. 
• Bad news is it will most likely come back in the future. 

I guess after the Girdle Band pain left, it just felt normal to do everything sitting in the floor. After all, having the Girdle Band pain force me to do everything in the floor MADE me learn how to adapt to doing a LOT of things sitting down. And I guess I'm just a lot more comfortable there now! Whatever works right?

Moving on...

Most of you know that I cut off all my hair last summer. And when I say "all my hair," I'm not kidding. The hair on the back of my head was shorter than an inch long. Maybe at one point it was half an inch, if that. I was having so much sensitivity on the back of my head and neck that I couldn't even stand my hair brushing against my neck. Finally, I just went in my bathroom one day and cut off all of my beautiful curls. I know I did what I had to do, and last year I wasn't in any position to keep my long hair fixed, washed, dried, curled, etc. In saying that, I am now growing my hair back out again! It's a long process, but I'm enjoying each inch I get back! About a year and a half, and I'll be back to normal "hair-wise."

My hair length as of March 2012

A BIG issue: My Weight has gone up quite a bit. When I got married in March 2011, I weighed about 93 pounds. Now I weigh about 125, give or take a few pounds. I struggle with accepting this weight, because I am making a conscious decision to maintain this weight instead of losing back to where I'm comfortable, which is about 105-110 pounds.

I'm really fortunate weight-wise, and Scott doesn't fail to let me know this (although I contribute it more to will-power than genes). Basically all it boils down to is if I wanted to lose 15 pounds, I have enough self-control not to eat sweets, drink only water, eat healthy, etc until I lose down to my goal weight. It's hard work, but it's doable and I've done it before many times.

Well, Scott and I still want to have a kid or two in the future. Not right now, obviously because our home is so small, the kid would have to sleep in a carseat on the porch. Maybe in a year or two (or three), not quite sure. What most of you don't know is before we got married, we planned on trying to have a baby as soon as we said "I do." Like 5 days after we returned from our honeymoon, I started to go downhill healthwise. Instead of thinking how hard it would be to take care of a baby AND me, we were thinking more like, "What if I only get worse from here and I can't ever have a baby because my body is so weak?" So, we just decided to keep trying. And month after month... nothing. I've had several female surgeries, so there is always the chance that it could take longer than normal to get pregnant. (It took Scott and his ex-wife about 18 months to get pregnant with Izzy, so he really wasn't as stressed about it as I was.)

In mid fall 2011, I was so weak, we were having a rough time dealing with the effects MS was taking on our new marriage, we weren't any closer to having a baby, Izzy and Evan had a lot going on, and the toll of my missing paycheck was REALLY starting to hit hard, and it all just built up and up. We had to deal with each issue one at a time. We decided to move to Valley to be closer to the kiddo's and their activities and save money on rent and gas each month, and we decided now was NOT when we needed to bring a kid into the chaos we were drifting through. I needed to focus on myself, my health, my marriage, and getting control over my own life back. I was disappointed the first couple of months, but I had an instant relief from the pressure off my shoulder each month.

Good news is my doctor said that when we do want to try in the future, I need to come see him about taking Clomid or a mild fertility drug to boost the "process." So how does this have anything to do with my weight? Well, I was really malnourished when I was so skinny, and my low weight made all of my female issues really "irregular" and "inconsistent," making conceiving a baby really difficult, if not almost impossible. That could have had a HUGE effect on why we didn't get pregnant (although I think it's nothing more than the fact that God knew that I would never have been able to take care of a baby the way I've always dreamed about. I was way too sick and far too depressed to have been able to be a good mom... I believe God will send me a munchkin when HE knows it's time!)

 So, the way I see it is I'm at my ideal weight. I am not going to work so hard to get down to a comfortable weight only to have to gain it all back in a year or two when we start to try again... I'll just stay where I am to make it easier in the future, so if we encounter fertility issues no one will be able to blame it on my low weight. I can do this... (A LOT of books I've read talk about how the first year after a MS diagnosis is one of the worst you will ever have, if not the worst. Not only because of the pain and adjustments you have to learn to deal with, but because of the horrible depression a lot of people deal with as they grieve about their diagnosis. So true! I'm in my second year and I'm almost a completely different person, a lot of which I contribute to me overcoming a year of deep depression!)

Well, I've told you about the struggles I've overcome, the pain I've fought, the prescriptions I've chunked out, and how I'm getting stronger every day. I haven't told you about my most debilitating symptom that I will always have, due to where my brain lesions are located: Cognitive Dysfunction and Sensory Processing Disorder. This is the main symptom that keeps my "working shoes" still sitting on the shelf, because I haven't learned how to control it. I'll explain it in my next entry, so don't forget to check back for Part 2! It's pretty interesting. Well.. I'll try to make it interesting for you. You never know who you will meet in the future that has MS, and you would like to know a little something about it wouldn't you? I wish I had known about it.

UPDATE: Since I posted the information above, it has come to my attention that I may have been too vague or misleading in some of my words. Just to make it clear to everyone, we are NOT trying to have a baby right now! We are still trying to make sure my health is stable, we're still organizing and settling into our home, we're enjoying our special time with Izzy and Evan and focusing all on them, we're still enjoying our quiet times and loud crazy movie nights with each other, all of which cannot be done with a new baby. While we DO want 1-2 more kids in the DISTANT FUTURE, we are NOT trying to make that happen now. I'm sorry for those who I mislead or stressed out! I'll try to be more clear in my future entries.

NEW SYMPTOMS!

I'm being a whiny-baby in this entry... and we're going to go through to together with pictures and videos that acknowledge and represent that... Here we go:

Crybaby Video

You know you love watching Steve Urkle still, and MAN, can he dance or what?

So, want to know what my latest MS symptoms is? The MS HUG. Also known as the Girdle-Band Sensation. And... it stinks.

Yes, that's the little boy peeing... the same little boy that used to grace the back or 4x4's all over town. Just when you thought he was gone, I brought him back! Little Whizzer.

You know the "F*rget You" by Cee Lo Green? (And yes, I know there's another version but I'm NOT posting that on my blog, just in case the preacher reads it or something. Use your imagination if you must.)

Anyhoo... That song reminds me in a strange way about how I feel about Multiple Sclerosis. I can't tell you how many times I've wanted to be like, "Forget you, MS!" and I think I actually said it out loud a few times. So, here you go with that, too!

Forget You Video!!

Another thing that's really creating a damper on packing and moving is that my sleep medication isn't strong enough! I have another medicine I could take, Nuvigil, but my insurance has delightfully declined to back me up (or cover it, if you have no idea what I'm talking about). I want to call them and be like, "Listen, just because my tests aren't turning out just perfect according to your stupid little list, I NEED to stay awake!" In other words, "FORGET" your stupid list!

When about 6 p.m. hits, you can hang it up on me being in the "Normal Functioning Department." That's about the time that my second dose of the day wears off, and I start to go downhill. All I know is, I am so incredibly sleepy, even right now. I go back to the doctor in March (yes, I have to last until then), and hopefully he can switch me to Adderall on a higher dose... although I have to learn how to control the "edgy" feeling it will give me. It's worth it if I will actually stay awake!

Enough whining... I need to go pack. Sleepy packing... this will be interesting!

Race to ERASE MS Event FUNDRAISER

Hello Everyone! I am trying to raise $1000 to attend the Race to Erase MS Event in May of this year.  Each ticket is a minimum of $1000, and it is submitted in the form of a donation to help fund research to find a cure for Multiple Sclerosis, which most of you know that I have.  This is a "Once In a LIFETIME Opportunity," and I really an trying so hard to collect the money for two reasons:

1.  I have MS, and I personally REALLY need someone to find a cure, so why not try to help them fund it?!
2.  I think it would be awesome to spend an evening eating dinner and mingling with celebrities who are also there to support Multiple Sclerosis.

I usually don't use this word, but I will now... Having Multiple Sclerosis Sucks BIG time. Meeting the stars would actually bring me a small positive in this awful situation!

The link to the website with information for you (to make sure this is LEGIT) is below.

Race to Erase MS Website Link

Some of the stars who have attended the gala in the past are below... (But SO many more actually go!)

So, $1000... That's quite a chunk of change, huh? I just know we can raise this money! To help, ALL of my jewelry profits are going toward this effort, so please go "LIKE"  and "SHARE" my facebook shop so you can check out all of my jewelry and albums. Please pass this on to friends! And if you buy ANY jewelry from now until the end of January, I will throw in a free pair of surprise earrings, so YAY!  

To put it into prospective: If I sell 100 pairs of earrings at "around" $10 each, that will be $1000! Come on guys... 100 pairs can fly off the shelf ( I'm trying to be OPTIMISTIC... can you tell?)

The more people who "like" my shop, the more people who have the opportunity to support my efforts, so please share it for me! And Share this blog entry as well, so they will know what they're looking into, please! 

The link to my shop is:

Make Up and Mud Facebook Shop

All you have to do is comment on the item you would like to buy, and I will respond to you! Please help me in this effort to raise this money, and know that you will he helping SO many people! Please message me if you have any questions! And remember... pass pass pass this on! 

The Real TRUTH About How I Feel

You want the truth about how I really feel about this awful disease? Well here is the honest truth:

One thing I struggle with is accepting this fate: Multiple Sclerosis. For the most part, it appears to be going well, but I have nights, like last night that come out of no where where I fall apart. I lost everything in less than a year, my job, my friends, my Multiple sclerosis mentor and dear friend that died unexpectedly, my future, and all of my plans... they were all taken within a year. So, without even realizing it, I pushed away everything that I REALLY wanted, because it was like I unconsciously thought that if I didn't really want it anymore, then it wouldn't be taken from me, but if I wanted it, like I wanted my job, then it would be taken. 

But you don't have these thought processes and realize it, until that night when you put two and two together, OR when your husband does. He's right... When Bonnie died, it absolutely killed me, because she was not only one of my best friends, but she was the only person I confided in, because she had MS. If I told her about something that happened or something I felt, she had been through it too. So we formed a bond that couldn't be shaken... unless one of us died. There's not a day that goes by that I don't think of her, and I can still cry at the drop of a hat. They say over time that it gets easier, but it hasn't yet. I can't even really think about her without falling apart.

Things with Scott and I are good, but I've selfishly kept him at an arms length away. It's like dying... for almost a year, I've been ok with it. If I were to have not woke up the next morning, I've told myself over and over that I would be ok with it, almost to convince myself. But the truth is, I WANT to be ok. I want to beat this. But what if I really try to fight it as hard as I can and then I find out that there's nothing that I can do and it's going to kill me? Something is a lot easier to take if you convince yourself that it's what you wanted in the first place. It's confusing, but you may understand. 

The worst symptom about this is my inability to manage my moods and my emotions. My doctor said that it is an effect of my lesions, but the depression has been awful over the past year. And I never hid it from my family or Scott or my best friends... I was taking an anti-depressant that I had a really bad reaction to that almost made me hallucinate, and I took it for months. I would cry all day every day and just almost watch myself from somewhere else. It was the worst thing I have ever been through in my life. I was diagnosed as being bipolar, but I wouldn't accept it, so I ignored the doctor and quit the meds cold turkey. After the effects wore off, I allowed my body to go back to normal for a few weeks. I wasn't bipolar anymore... it was the other meds! So, I started a different anti-depressant, and it works pretty well for the most part! If I had accepted the bipolar meds and taken them, I would be on another medicine that I don't need, and my doctor agreed. It's just trial and error. 

I think that once I accept this fate, then I will work on rebuilding. But I can't accept it overnight, or even in one year. I'm still in denial about it, and I hate it everyday and I want to go back in time. I used to be so responsible  in control, and I feel like I lost my entire identity and now I'm trying to find the other me. And I don't want to. As soon as I'm able to get out of this funk and start rebuilding my life, I will start my new chapter. Until then... it's day by day.

BEST book ever!

Multiple Sclerosis Update (With VIDEO)

I wanted to catch everyone up on how things have been going in my life, but I couldn't narrow it down to one video... This time, I made it into three. Thanks for watching!

Update Video #1

Update Video #2

Update Video #3

New Stamped Metal Jewelry Line!

Hey everyone! I am so excited about the new jewelry items that I will be offering very soon!! The new items are part of my new STAMPED METAL JEWELRY! I am so excited, and this is something I've been waiting quite a while to be able to offer. Thanks to my sweet Daddy's wonderful Christmas gifts, I have now started my metal stamp collection and I have three fonts available already!

My fascination with metal stamping started when I was trying to find a medical alert bracelet for Multiple Sclerosis. Then I realized that most of the ones I found were big, bulky, or rubber, not exactly matching my other jewelry. Even if I didn't want a medical alert bracelet, I still would like to be able to raise awareness for different diseases like Multiple Sclerosis or Breast Cancer without just wearing the awareness color.

So, I ran across the art of metal stamping, and I decided that was the route that I wanted to travel. THEN, I realized how expensive the hobby was to start, so I put the idea on hold until I opened my first three sets of metal stamps and my anvil this past Sunday! I was squealing with excitement, and I am still so anxious to get started!

Wearing ribbons and pins is a wonderful way to raise awareness, but I also like the idea of actually stampong and spelling out what I'm representing, which as you know is Multiple Sclerosis. The color for breast cancer is pink and the color for multiple sclerosis is orange, but that doesn't always match what I'm wearing that day. By spelling out the awareness, I'm still able to represent a huge fight for awareness for a fight I'm making everyday.

As I continue to grow my jewelry sales, I'm still saving money to be able to buy new supplies to offer a bigger variety and more unique jewelry styles. In the future, I hope to be able to offer a certain portion of each sale to actual organizations responsible for trying to find a cure for any disease without a cure. Until then, I'll keep working and stamping to build my tools and supplies. I have a goal, and luckily I already have a few orders of people who also want to help raise awareness and one boutique that has offered to carry medical alert/awareness bracelets and necklaces. I love it!

Even if you aren't interested in wearing medical related jewelry, I will still be able to offer many other stamped styles, which are swiftly becoming more popular. So, please message me on facebook if you are interested in placing an order or for prices! Thanks!!

Here is the link to my facebook page...
https://www.facebook.com/#!/makeupandmudboutique

My Plan for the New Year... Or Plan(s)

Well the new year is rapidly approaching... Act Surprised.  I'm sorry, haha, but I just had to write that last sarcastic line, because the sentence before it is one of those "Duh! No, Really?" lines. 

• I'm not sure if you have noticed before now, but I try to write to you like I would if I were actually talking to you. Therefore, I really try hard not to erase the stupid lines or sentences that I might not have thought through all the way. Why? Because if I was actually talking to you in person, I would have actually said the sentence without thinking. Does this make sense to anyone? Bottom Line: This is me. These words are mine. I admit that I can speak before I think, or in this case, write before I think. And I'm not erasing it just to make myself look like I'm totally together all the time. Cause I'm not. Hardly ever.  

On to our BIG topic today: Do you have any great new years resolutions? Yes, I'm sure there are the usual resolutions like:

• I'm going to lose 50 pounds this year.
• I'm going to join a gym and go 5 days a week. (DON'T sign a contract!)
• I'm going to pay off my credit card debt.
• I'm going to floss twice a day

Ok, well maybe that last one has never crossed your "Resolution List," but hey, you never know. For some anti-flossers, that may be a BIG commitment.

Anyway, I've a confession... (bahaha... that made me laugh out loud, because while I meant to write "I Have" a confession, the way I wrote it sounds kind of Foreign 1920's with an accent if you say it out loud... I've a confession... lol.)

Let's try that again: I HAVE a mildly shocking confession...

Ive NEVER had a New Years Resolution before.

I say "mildly shocking," because I'm only 24, so what serious thing could I have resolved to do in my life before now... make good grades? That would be a... sometimes.

This year, I'm going to be making my first New Years Resolution, and it's a little tricky to say the least. Remember my past ADD blog entry? (If you don't, click Past ADD Blog Entry. )
Well, I haven't yet mastered the art of narrowing down my lists yet, so my New Years Resolution is actually a Master List with many other Major Resolution List topics that also have Mini Resolutions below them. Remember this:

New Years Resolution
      1.Major Topic
              1a. Mini Topic
              1b. Mini Topic
      2. Major Topic
              2a. Mini Topic
              2b. Mini Topic

Get my drift? I think the main problem stems from one main issue: I want 2012 to be SO different from what 2011 was for me. This past 2011 year was full of ups and downs, with MANY more down days than up days, and I want 2012 to be the complete opposite. I desperately want 2012 to be a wonderful year, full of so many ups that I can't even remember what it feels like to be down.

If you have followed any of my past posts, you know that I have struggled with gaining control over my Multiple Sclerosis this past year, and I was largely unsuccessful most of the time. Thankfully, God has allowed me to kind of wrap up the 2011 year with a little more closure and control than I've had all year. As a result of such a crazy rollercoaster of a year and the effects of the placement of my brain lesions, I've also struggled with depression almost consistenly for the entire year.

Many people who have never been exposed or dealt with depression don't realize how difficult it is to find the perfect medication for depression or what happens if you have a bout with a medication that seems to do more harm than good.

Now imagine this:

Imagine trying to make all of these medications work successfully together EVERY DAY, all the while trying not to lose your mind:

• Anti-Depressant
• Muscle Relaxer
• Migraine Medication
• Interstitial Cystitis Medication
• Hypersomnia Medication (to stay awake)
• Brain/Nerve Conduct Medication (like anti-seizure)
• ADD Medication (to channel the Hypersomnia medication effects)
• Medication for random pain management
• Heat/cooling therapy
• The list goes on

See what I mean? Try making all of those work together every single day. It takes time, and for me that time was most of 2011. And the thing about MS is that the symptoms are constantly changing, so what medication works this month may not work next month if anything changes. What does that mean? It means II better pray long and hard that there are no side effects from the new introduction of new medicine or withdrawal from the ceasing to take the old medicine.

The #1 KEY to taking all of this every day is MANAGEMENT, MANAGEMENT, MANAGEMENT. Strictly documenting everything, so that if I have some adverse effect, I can help to narrow down which one is causing it. And by adverse effect I mean nausea, fatique, grogginess, dizziness... I have to be able to function as well as possible, and I've had to build up a decent tolerance to each drug. And I have to responsibly monitor each medication to ensure that the tolerance stays at the right place, making TIME MANAGEMENT crucial.

Needless to say, I've spent the better part of 2011 being poked, prodded, tested, watched, and monitored. And thankfully, God is making everything come together just in time for the New Year... now do you soo why it's so important for me to get off on the right foot?

First things first: When you're struggling to climb out of a hole of depression, you can easily sink back further down before you realize it. I REFUSE to do that, so I am starting a crazy little thing for myself called: The Good Day Project. See, I am so scheduled in my own weird way that I can almost trick myself into following my own rules (yes, I know it's strange). In 2011, 15 out of 20 days were just low low low and I honestly had a hard time finding reasons to make them any higher.

2012 Solution: The Good Day Project
I have one of those little mini planner/calenders and I have already filled it up with so much inspiration! There are certain days each month that are designated to be GOOD DAYS, no matter WHAT HHAPPENS that day. So what does this mean? One of my problems stems from feeling overwhelmed a LOT of the time. I never used to get overwhelmed, but that's one of the biggest personality changes for me now, because the slightest change in plans can make me panic. On the designated GOOD DAYS, when I feel overwhelmed all I have to do is remind myself that I promised myself that I would have a good day that day, and if I let me down, what will all of the rest of the GOOD DAYS in the year mean?

Sounds simple, but to someone who's actively trying to make a normal life again, this is a BIG deal. The point is to start out with a few good days a month and gradually, as the year passes, I want to start to have more GOOD DAYS than bad until, at the end of the year, I have almost nothing but AWESOME DAYS. I know no one has good days every single say, so I'm planning for that. But the 2012 year will be a year of "Finding the new me, figuring out who I really am now, being normal again. I will never be the old Chelsea, and I can't go back in time. But I want to learn who I am now. And yes, brain lesions are brain trauma, which do cause personality changes. While I still have the same values and love, my interests, talents, needs, and wants have changed drastically.

  Now, I obviously don't want to be too optimistic so I'm starting out in January for one designated GOOD DAY each week. All of the other good days that run my way are bonus days. February, I start with two GOOD DAYS a week, and March goes to three and so on. The weird thing is, I found myself making little "rules" about which days could be designated as GOOD DAYS...

For example, Holidays don't count, because those are already good days in my book, because I get to spend time with people I love. Close friends and family member's birthdays don't count, because they're a given that they're going to be good, because I'm going to be trying to make that day special for them. Weekends don't count, because I'm also with people I love. Do you see the trend I made for myself, even though I didn't realize it at the time. My designated GOOD DAYS were only the days that I would be spending alone. And there lies my problem. Solution?

On the GOOD DAYS, I plan to do more than just make it "good." I plan to spend about an hour or two doing something that makes me happy that day, something that relaxes me that has nothing to do with stress. For me, it may be making a scrapbook page, painting, making jewelry, or even writing in my blog. I promise to keep you updated! When I realized that the GOOD DAYS were days that I was alone, I realized that I was starting something a little more important than just having a good day... I was starting a little project to spend some time on myself. I was starting an actual project for one year that I really want to finish. To me, it's more than just having a GOOD DAY... it's finding out what makes me happy again. I can't wait for the new year to begin! 
 

I am Chelsea, and I am a Procrastinator with ADD

Merry Christmas Everyone! Do you like the title of this blog entry? I hope you do, because it is SO TRUE! I have serious ADD, otherwise known as Attention Deficit Disorder, and it severely hampers my ability to do just about anything in a reasonable manner and on time. Getting distracted is the very least of my problems, because my crazy condition goes much further than that. MUCH deeper.

Usually people with ADD or ADHD get distracted from their initial task very easily. It's not the fact that I get distracted from what I'm doing that is so crazy... it's what distracts me. Normally, people with ADD will be walking through the bedroom to go fold clothes and see a book or video game that catches their attention and distracts them and off they go to play. Not me. I'll be walking through the house to go fold clothes and see a James Patterson commercial about his new book and then randomly decide that very moment is the PERFECT opportunity to grab a stack of paper and start writing that book I've never planned to write. You know, the book that I don't have in my head that would most definitely become a best seller? Seriously? What is my deal?

In the middle of cooking dinner, I'll be measuring flour and suddenly, BAM! That seems like the perfect time to cut out some vinyl letters and label my measuring cups. Or I'll be washing clothes, and I'll start computing the cost of laundry detergent which sparks a google witch hunt for homemade laundry detergent recipes that will never get made. (Although, I must add that I DID actually make 5 gallons of homemade laundry detergent ONE time, and it was VERY wonderful and it worked like a charm! I got to trip over the 5 gallon bucket for 4 months as I hobbled over the mountain of clothes to do laundry.)
 
 

 


I've tried Adderall, and it made me extremely edgy and anxious, so that was a No-Go. Now, I'm on a similar drug called Focalin, and it does seem to work a lot better as far as keeping me awake and somewhat better with focusing. I guess lately I've actually been doing a lot better with the whole "Can't maintain focus" thing, luckily. If I hadn't wrangled some kind of control over my ADD I would have never wrapped the first Christmas gift, because I would have decided to hand make the wrapping paper or something crazy like that. It seems like I have the hidden mentality that if it's not extraordinary then it doesn't count. Is that realistic? Not hardly, although I DID make all of my gift tags!

My curse: I was given a vision. A vision of what "Could Be." The curse? I was also given the inability to channel that vision to one item and EXECUTE the "Making it Be" part of the equation.
 
 

One thing I credit for my recent gain of control over my ADD is a new book I bought about a week and a half ago. And I bought it out of desperation, because when you live like this, unorganized, it seems like you don't have control over one single aspect of your life. One thing I learned that made me feel better: A LOT of this inability to control my ADD is caused by my brain lesions affecting the executive functions in my brain, because of the location of the lesions. Whew! It's not ALL me... although some of it is laziness I have to admit.
 
 

The book is called Procrastination: Why You Do It, What To Do About It NOW! And it's an AMAZING book that I highly recommend to anyone who has issues with time management, procrastination, finishing projects, depression, ADD, or ADHD in general. It is written by Jane B. Burka and Lenora M. Yuen. One of the best parts about the book is that the authors are habitual procrastinators as well, so they understand what the reader feels like. They use their personal experience to help you not only understand what the problem is and medical causes, but also how to remedy this loss of control over your life and gain your self-worth back. Self help book, yes. Am I thankful for it, definitely. (There were over 150,000 copies sold, so they must be doing something right.)
 
 

Below is the link to purchase the book for $10.85 if you are interested (and it is SO worth it)! It is also available at Books-A-Million.

http://www.procrastinationisfun.com/procrastination-books/
They said that they held Procrastinator's Anonymous meetings to help gain more information while writing this book, and the meetings were from 9 a.m.-11 a.m. I thought it was hilarious that they said that was a horrible time to hold the meeting, because all of the people that were attending had issues with procrastination, and they all didn't show up until 10 a.m. anyway. (I totally understand this, because I am usually late for everything!)

Since I have been reading the book, I have been through two highlighters, and I've been on time and finished more projects that I have total in the past year. It's AMAZING, and if a book can help my butt be on time... it can help you too. (Chapter 16 is called: Tips for Procrastinators with ADD and Executive Dysfunction.)


I learned that self-monitoring is very important when you are trying to be on time, and people with either of these disorders have issues with this (I have both.. yay me!) I also learned that if you are like this, every single decision point represents a potential diversion from whatever path you are on. As Ned Hallowell said, "The devil does reside in the details in the land of ADD."
 
 

Another tip I've learned is,"Don't try to be good at what you're bad at. Get better at what you're good at." (by Ned Hallowell and coauthor John Ratey) To boost your attitude and inspiration, find what you're good at, and do it more! (Sounds good to me... even if it is funky dancing... haha)


FINAL POINT: You have a choice. You can delay, or you can act!
 
 

I choose to act. And to all you readers, if you are a procrastinator like me, BUY THIS BOOK. If you are an organizational wonder-person, please give me your ideas, tips, and strategies. All of them will not work for me, but some of them definitely will. And just knowing you care will mean the world and inspire me as well.
 
 

FYI: This is NOT my brain... Ironically, I can't figure out how to save my own brain scans from the disc, because of the system they used to download them. As soon as I can learn how to do it, you can bet that I'm going to share my BIG beautiful brain with you. It's proof... I have one! haha. Seriously, this picture shows you what a brain with MS looks like with lesions (the white spots). I have four lesions... this person has more than I do. And... because of my lesions, I have more color in my brain than just that dull gray color.. I have white polka dots! How cool is that... which means.. my brain is prettier than yours! haha... Gotta have humor in it!
 
 

Well, enough procrastinating! Off to finish my daily goals!

Accepting the Inevitable Changes

Well, lately I haven't been able to write in my blog, mail out orders, or really do much of anything. And by lately I mean almost three weeks... that may not sound like much, but imagine getting on a loopy roller coaster three times an hour everyday for three whole weeks. That's the only way to describe what it feels like to have crazy lesions in your brain that are completely unpredictable.

I did happen to run across a new blog, and it has some pretty interesting info. about brain lesions, their affects, and tests conducted (just in case you're in the mood to read). The link is below:

Social Neuroscience Info Blog Link

Ok... back to my own pity party...

When I first felt a little sick, I started out with a couple million sneezes and within a few hours the symptoms were pretty much was resembling the flu virus. I had a bit of fever, but the main symptom was nausea. Let's just say that Phenergan was my best friend that first week.

One day, I laid in the bed all day with the entire room completely spinning, and when I closed my eyes or tried to talk around, the room would spin even more. That was awful. I would force myself to close my eyes, hour after hour, and think about anything soothing that could possibly help me fall asleep. My body and mind were both so exhausted, but the spinning in my head made sleeping virtually impossible. I would fall asleep for 20 minutes, wake up for an hour. Fall asleep for 20 minutes, wake up for an hour. All. Night. Long. for several days days.

Then Scott suggested I try Phenergan for the nausea, and under normal circumstances I would refuse this medicine (I think you know why), which explains why I had a whole prescription from an old doctor's visit still sitting in the refrigerator.  The only thing I could remember was that is was supposed to be used for was nausea, and it would make me really sleepy. PERFECT! About 15 minutes later, I was so sleepy that when Scott was fighting me to wake up and take my medicine, and I was completely out of it. The relief was wonderful. For a little while, anyway.

Then, just when it seemed that the sneezes were going away at the end of that week, and I was clearing up, BAM... I got a fever. When I'm about to have some serious MS issues, I unconsciously tend to favor my left arm and hold my hand a weird way without even realizing it. Which is exactly what came next.

When I did notice that I was favoring my left arm, I knew that I was about to go downhill in the next day or so. Being exhausted from the week-long flu-like symptoms was hard, but I received a new sleep "stay awake" medicine on Thursday, so I figured it would give me the energy to help ward the symptoms off... wrong.

What I didn't realize is fever, even a 1 degree change, aggravates any existing brain lesions, even the ones that don't usually cause major trouble. In other words, the brain lesions are haywire for a while, until the fever is gone at least. And the funny thing about brain lesions is that they are completely unpredictable, and they cause the weirdest symptoms, many dealing with personality and cognitive functions.

See, I have the ability to see this from two angles of understanding:  I lived 23 years just like you, and my main objective was to wake up, make it to work on time, wash the clothes, hang out with friends and family etc, just everyday ins and outs. Sure I got a cold or the flu once a year and whined for a week or so, but then I was back to normal.  I understand "life" from this position, and I know how fast the train of life whizzes by. I have to admit that if I had never had this experience and one of my friends was going through this mess, I probably wouldn't have been patient enough to try to understand. I know this, because more often than not, I'm too impatient enough with myself to try to understand me and what is best for me.

The other angle or position that I understand is the one I'm sitting in right now. That old "Train of Life" is still whizzing by, but I'm no longer one of the passengers. But the reason I say the "Train" of Life, is because for the most part, trains always come back around sooner or later, giving everyone another opportunity to grab on and try to pull yourself up again. There may be a different train and the passengers may have changed, but that's all part of the big plan God has for us. And there is the inevitable, "Kick me when I'm down" that seems to linger everywhere. Eventually, if you keep pushing and pushing on, no matter what setbacks you have, you will eventually make it up on that train before it passes by.

(If I were to keep using the Train of Life analysis to let you know where I am right now, this is what it would be...And yes, I am completely making this up as I go. It's the only way I can explain it!):

Step One: Riding the train (normal life)
Step Two: Falling off the Train (first symptoms)
Step Three: The Train is invisible (diagnosis process)
Step Four: I can hear the Train but I can't see it (Finding peace)
Step Five: I see the train, but it's going WAY too fast to catch up to it (Regaining Strength mentally/physically)
Step Six: I catch up to the train, jump and leap up, but can't quite make it all the way up in the car before I fall back and have to start over. (Learning to Adapt with new limitations for YOU)
Step Seven: After months of persistent jumping, I make it inside the train car, but everything is confusing and unfamiliar. (Learning to make your limitations work with what society expects of you.)
Step Eight: Riding the Train, catching up with everything that is familiar from the past. (Blending into where you first began. Starting to drive more, a little less isolation, rebuilding relationships and finding the new you)
Step Nine: Misjudging balance and distance, and not only do you fall completely out of train, but you fall on a totally different side than you were on the first time. Nothing is familiar, and you don't know where to start over.

This is what I call the Sudden Crash, which is what can happen in a matter of hours, like from a slight fever. It's struggling to regain your strength and making a little bit of ground, only to have to start over from the beginning. It's literally like learning to do normal functions again, because your body just decided it doesn't want to cooperate. And there's no magic medicine or magic pill that will make it better, because no two patients are exactly the same, no two brains are the same, and the symptoms of brain lesions change day to day for each person and then multiply that  over a lot of people, and you will have a million different symptoms that are completely unpredictable and mostly uncooperative.

It's just weird to me, and maybe a little more frustrating than anything. People want me to explain it to them, explain how I feel, why I've changed, what is going on, and I haven't even begun to understand it myself. I've read book after book not only about Multiple Sclerosis, but also about the processes of mentally dealing with any chronic diagnosis.

I know that the first two years are usually the most rocky for the emotional part, and couple that with a disease that scrambles your emotions randomly and you basically have a big ball of crazy sometimes. haha.. I don't think my husband would deny that. While I've been going through the acceptance/diagnosis process, I have found that Hindsight is indeed 20/20 and I don't like that. That means I usually end up hurting me AND others around me while I struggle to find the antidote for my own sanity, acceptance, and most of all, the loneliness of being different. That is overwhelming in itself, because it often feels like there is an expectation of me that I cannot fulfill. I hate to think that I'm letting those closest to me down, but I cannot control this disease any more than the doctor can.

And the biggest curse of all... it's invisible to you. There is nothing that I can do to let you into my skull to really feel the pressure and pain that is inside my neck and my head each day.  I can't make you feel how it feels to be in a constant foggy cloud, or what it feels like to have someone speaking to you and no matter how many times they repeat it, their words just aren't making sense.

I just have to keep pushing on, praying every day, and asking God to give me the strength to keep trying to find relief and to give others patience as well. See, there is nothing I can do to rush the medicines, to find a solution, etc, and my only option is to wake up every day and try again. Try a new medicine to see if it will relieve the pressure in the back of my skull. Try to get out of the house more, and actually interact with other people. I'm doing the best that I can, and that's all I need to know. It's all I can know.

I miss my family and my friends, but I refuse to drive unless I feel completely comfortable with it that day. I don't leave the house much, so when I do leave the house for a day, it's sometimes overwhelming to all of my senses. Processing the sounds and lights and stimuli can be a little exhausting if you aren't used to it. I think one of my biggest issues is definitely what I said earlier, letting people down and disappointing them. It's easy for you to hop in the car for a two hour visit, but it's not easy for me to do that right now. I haven't driven to Montgomery in almost an entire month, and I can't tell you the last time I was in Prattville.

The hard part is that it always seems to feel like it's my fault, like I chose to not drive or like I'm choosing to be sick. Trust me, if I could make this go away and work 40 hours a week with no pain, I would. I didn't want to be in this situation. I didn't want to change my entire life for something so drastic.  Everyone is always like, "We never see you" and "You should come over and visit sometime" and while I am indeed thankful for the invitation, there is so much guilt from that and there is a responsibility on me to make it better. It's like it's my responsibility to see them more often or just magically make the symptoms disappear that one day.

Over the course of the last year or so, I've learned one thing that is essential to my own well-being:

First and foremost, I have to take care of ME. I am the one who has to wake up in the morning and deal with the symptoms. I am the one who has to deal with the bad episodes. And when it comes down to the person who has to hold the weight of this, that person is ME.

I've realized that I can't please everyone, but also that I can't let that bother me all the time. I have a journey to travel, and over the course of that journey, I have faith that I will find new and improved ways to adapt and slowly mingle back into a little more normal life again. I don't think things will be this bad forever, and I truly feel that my health will improve as I learn how to adapt to my limitations. My ability to be flexible will improve, and things will look up. I just hate how lonely the journey is along the way though. Where there used to be close knit relationships, there is now a communication gap and thinned patience by others.


I've opened up a lot in past blog posts, and that's tough to do, exposing yourself to the world. When I get e-mails, comments, or messages about what I've been going through or how someone is praying for me, it gets a little easier to press the "publish" button to share my life. First and foremost, I'm never asking for people to feel sorry for me. I guess I'm asking for time... more time. Time to adjust and learn how to adapt to this. Time to figure out how to rebuild my new life. Time without feeling guilty. I think the mental guilt is the most crippling part of this for me, because people used to expect things from me, expect me to be something, to make something of my life, and to be something special.

But when I tell people what's going on, and you can see the pained expression come across their face, it's almost like there's an invisible banner that says, "That's too bad... she had such potential."  

(This just crossed my mind, and it's so true)
Instead of accepting this disease and trying to learn how to adapt to my limitations, everyone just seems to be sitting around, going on with their lives, just waiting for the old Chelsea to come back. Waiting for the day when I'm back to normal. This is the most true example of all. And it's the one thing that will never happen. Everyone keeps saying, when you feel better we can do this. When you feel better, we can do that. Are some things going to get better? Yes... But as long as you are sitting back waiting for the old Chelsea to come back, you're just wasting your time and widening the gap.

(When I say "Everyone", I don't literally mean everyone around me. Though it may feel that way sometimes, I do have wonderful people that support me endlessly!)

It's just really hard, because I am forced to adapt to what has happened to me. I don't have a choice. But what do you do when everyone around you isn't interested in accepting what's going on? Acceptance is a blessing, but avoidance will kill your spirit. Trust me, I know.

On the other hand, God has given me special friends and family that seem to be there at just the right moment! For them, I am so very thankful.

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All in all, I am still Chelsea. My heart is still the same, and I still have the same desires, goals, etc. I'm learning every day to adapt, and I pray that when I find where I'm supposed to be, that God will put the right people there at the right time! So far, He always answers at the right moment in His time. Frustrating, yes. But to have a God that you KNOW will follow through in the end... that's a huge relief!