Update on MS, Cancer, and Venting.

This blog is an update on my MS, Cancer, and people who annoy me.

First the MS. My MS has been doing pretty good overall! I really expected to have a flare after all the stress on my body after the cancer, chemo, and everything else that goes along with the cancer. However, no flare and I don’t think there will be one anytime soon. I’m pretty happy that my MS seems to be going along well. I am really fatigued lately and that could be the MS or it could be from the loss of stamina from the cancer (seriously all my muscles went away, it’s crazy). Either way, it’s slowly getting better and I’m very happy about that!

I am still taking Copaxone (40mg 3x a week) and it’s still working well for me. During my chemo they let me continue to use my Copaxone and this makes me even more confident in my decision to use Copaxone. As a side note, I am not telling you to take Copaxone and I’m not making any claims that this will be the best choice for you. It works for me and it’s my best choice – smile.

My last chemotherapy infusion was February 7 2014 and I’ve been in official remission since February 21 2014. I have been seeing my Oncologist every three months give-or-take for genetic testing to make sure I’m still in remission. I just had my 9 month appointment and STILL NO CANCER! Yay! Merry Christmas to me!

I still have after effects such as my eyes (I still have monthly injections) and my stamina but my problems are improving. I am happy to be where I am though in my recovery.

Now a little vent – I’m so tired of people complaining about everything. I mean everything. Yes life sucks sometimes and bad things happen. I’m not saying you can’t be sad or angry about things in your life. What I am saying is that being down, upset, and angry is no way to live. Life isn’t perfect but it is amazing and beautiful too. You’re missing out on all the great things out there if you live your life by focusing on the bad.

 Stop the moaning and complaining and start living.

Just Keep Swimming

Today (tomorrow really because I'm writing this on the 9th) I will have my 31st eye injection. I feel like this is some kind of milestone for me. I don't know why it seems that way to be honest. I do know that I would like them to stop - laugh. They do work very well and are worth the twice monthly pain (two eyes). I mean it's that or be blind. So it was pretty easy to make the choice to have needles jabbed in my eyes (seems pretty anti-vision to me actually).

Why am I posting this? Well, I'm glad you asked! I wanted to let everyone know that even though I have Multiple Sclerosis, I've battled cancer, and I have needles jabbed into my eyes monthly - I still love my life. I love every stinking minute of it. I've made great friends (have great friends) have great family and continue to enjoy my life. 

Am I the same as a year and a half ago? Not by a long shot, but changing is part of life. Change is exciting and scary all at the same time. 

I want to say that things get tough; things can suck so badly that you don't know if you can handle it. I get it. I've lived it, but I'm here to say that you can handle it. You can laugh. You can have fun. You can just keep swimming - smile.  

OK Eyeballs, You Need to Chill

If you've been reading my blog then you'll know that I've been having issues with my eyes since my cancer diagnosis. It started the second or third day of my lovely hospital stay at then MD Anderson (now UFHealth Cancer Center). As a side note, the room next door to me was haunted. My mother and I would hear someone dragging one of those heavy hospital chairs at night around 10:00pm (bedtimish) only to be told by the staff that no one had been in that room for a month. So...yeah...but back to my eyes (creepy music). 

My vision started to slowly get blurry from starting from the peripheral (my temple or side of my face) vision. It was slowly creeping along my vision towards my nose and I started to complain loudly about the fact that "HEY, I like my VISION check me". Since I also have MS they decided that I might have optic-neuritis, which is when your optic (vision thingy) nerve gets swollen (this can also happen with diabetics). So, sick me who can't breathe well, cause I was having a reaction to the medication no one knew of yet, with a mask on, because I had one gimpy white blood cell trying not to kill itself left, had to get shoved into a tube the size of a toilet paper roll for am MRI. 

MRIs don't bother me usually but as the table slowly started to slide in I had to stop them. Something about the mask on my face threw me over the edge. So, risking my one depressed gimpy white blood cell, I took the mask off. We find out it's not ON and the nothing else is done for six weeks until I get to see an eye doctor when I'm released from the hospital. 

First eye doctor says I have diabetic retinopathy and my vision is 20/200 which means I'm legally blind. I argue that I don't have retinopathy. Why you ask? Because I have MS and I have a Neuro-Ophthalmologist that checks my eyes out. I also wear glasses and have yearly exams. See look glasses. 

This is me looking psycho before a run. I had been up since 4am and was feeling a bit loopy.

My hematologist (he's a hematologist who specializes in blood cancers) says he doesn't think it is (yay someone else that agrees with me). Diabetic retinopathy is when the blood vessels in your eyes leak due to damage from blood sugar issues. My leukemia was causing all my blood vessels to burst (hence coughing up blood) and he thinks my eyes were also affected by the leukemia. 

Wanna know what the treatment is? Having needles jabbed into your eye once a month to treat them. YAY I'M SO EXCITED (blink blink). It does work. I'm now seeing about 20/20 to 20/30 depending on the eye but I still have monthly injections. 

My November injection is next week but for some reason my left eye is spazzing out. It's blurry, I can't read small text, and I won't even attempt to drive. WTF IS GOING ON!? I even called my ophthalmologist but he's not that worried. I really enjoy the nonchalant attitude about MY vision but I need him to be a little more proactive with this. 

So, my eyes and I are having a come to Jesus talk. I really want the horrible injections to stop and I think they would also enjoy that. I promised them the best eye-drops money can buy if they just chill out. Think it will work? 

What I Found out About Vitamin D Deficiency MS and Rosacea

I've been doing a lot of research on rosacea lately because I've recently had a really bad flare up. I have to admit that I've been really lax taking care of my rosacea (well...my dry skin, my makeup, my hair...pretty much everything) since my cancer diagnosis. Now that I'm a few months removed from chemo (and am in remission yay) I've slowly started to get back into the swing of things and by things I mean life. For me the chemo stopped me in my tracks. It almost feels like more then a year of my life was lost in daily chemo and cancer. 

It's so nice to be able to get back out there and live a little. The fact that my rosacea reared its ugly head is annoying but also a comforting normal part of life. Not sure if anyone understand that but I'm sharing (laugh). 

As I said, because of my lovely red face, I've been doing a lot of research on natural ways/any way/reason/did I eat to many hot peppers to help or explain my lovely face. For those of you who suffer from MS you may know that many people with MS suffer from a vitamin D deficiency. I am one of those people. I have not read anything that explains to correlation between MS and a vitamin D deficiency but there seems to be something there.

As I read more about rosacea, I came across many references to a vitamin D deficiency in people who have rosacea. WHAT? The hell you say! Well, yes it's true. I find it very interesting that, like MS, they don't know the exact cause of rosacea (same as MS), it's liked to a vitamin D deficiency (like MS), that it's inflammation (like MS), flares up and goes into remission (like MS), and is progressive (like MS). I'm not big on coincidences especially when it comes to health. 

Could the mechanisms of inflammation and then remission be related to a vitamin D deficiency? Could finding the mechanism for action for one help the other? Do the treatments for one (say MS) help the other (rosacea)? 

Things that make you go hm...

I've been a bad bad girl...

Wow! I have been gone for a very long time. My life has been pretty interesting since my last post and I'm going going to try (probably miserably) to condense it into a short blog post.

For those that don't know I had a long fight with Leukemia which started in June of 2013 (Acute Promyelocitic Leukemia to be specific). On Feb 21 2014 I was told I was in remission (yay clapping). I foolishly thought I was going to spring back right away and feel amazing. Bwhahahahaha.

I lost most if not all of my muscle tone, my stamina was done, and we won't talk about the needles being jabbed into my eyes monthly. My legs are literally the smallest they have ever been..in my life. It's taken me from Feb till October (right now) to get my stamina up to an acceptable level. Acceptable meaning I don't want to die if I go shopping. Actually, I can actually walk 2 miles now YAY.

It's really interesting to see your muscles growing back. It's actually pretty weird but amazing at the same time.

I'm single after four years. I've only talked about my boyfriend a handful of times on here. It ended abruptly but it's not a bad thing that it's over. Truth be told if I wouldn't have gotten cancer I think it would have been over a while ago.

I've been obsessed with makeup! No, seriously. I'm going to post some makeup blogs in the future. I might even do a little filming for youtube (we'll see). I'm about to do a crazy sephora run because

1. I haven't used makeup in over a year and a lot of it has dried out or gone missing 
2. I have rosacea, which is this lovely immune system reaction (hm and I have MS) that makes your face red (think sunburn) and break out  

So, I'm sorry all but you'll have to listen to me ramble about makeup from time to time. 

And the last topic I'll mention is my MS. My MS is doing really well. I've switched to the 40mg Copaxone injection, which is a three times a week injection. I was not going to switch at first but I decided to give it a try because the three times a week seemed to be a better option then a daily injection while I was dealing with my cancer. So far it's worked very well for me. 

That's my quick update and I'm back to blogging so keep an eye out (smile). 

Natural medicine?! Moi?

The title is a bit cryptic yeah? I wanted to express that I am on a MS medication and I would never change. As well, no one should take what I say as medical advice and you should always, I repeat always, talk to your doctor about any supplements or natural medicine you want to take. 

With that being said, I have found some things that help me manage some side effects associated with MS and high blood sugar. 

Fatigue

First of all food! Heavy foods make me sleepy, and meals that are high in carbohydrates make me sleepy because of the blood sugar spike and fall. Saying this I try to keep my meals pretty balanced and/or follow a low carbohydrate diet. While I was going through chemo all bets were off on this one. I ate what I could. Since meat literally tasted like dog food it was hard to find a good balance. I managed mind you but it was HARD. So I totally understand when things are in your way like work, kids, school, and just life in general. It really is worth it to take the time to try to change your eating habits even if it's just a little at a time. 

A vitamin B Complex and B12 - This helps me a lot. I'm low on B12 so I take a liquid supplement (under the tongue) always take a liquid or a pill you can put under your tongue (sublingual) because your stomach acids will eat most of the B12 and you won’t get the benefits.  

Exercise - This has worked the best for my MS fatigue. If you're in a flare it's better to rest and you have to know your limits. If you can only sit in a chair and raise your arms for 10 minutes that should be your exercise. My honest recommendation is to find a Physical Therapist who understands MS and that MS does not mean you'll be disabled, and work with them to set limits for yourself. 

Blood Sugar

Cinnamon - Yep, that little spice helps with my blood sugar. However, I don't use to it sprinkle on food I actually take tablets that have cinnamon in them. Cinnamon dramatically helps my blood sugar and unless you’re allergic to cinnamon, I have never heard of someone ODing from cinnamon consumption (smile). 

Fenugreek - I can tell most of you are like "Huh?" but it is real and it is out there. Fenugreek is a common Indian spice and is used a lot in curries and other Indian dishes. If you’ve ever had Indian food the likely hood that you've had this spice is 100%. Fenugreek has actually been studied and has been proven to work on blood sugar. I use it in some of my foods, like chili and tomato soup, but I also take it as a supplement (because I love Indian food but not everything should take like Indian food). You can buy it at any local vitamin store; I get mine from The VitaminShoppe. 

Exercise - I don't have to explain this one right? Good. 

Those are a few things I use to help me manage my MS and my blood sugar. I'm also a bit more of a hippy and use meditation and other herbs for other things. That's for another post (smile)

Copaxone: My MS medicine and Cancer

I'm a huge supporter of taking medications to help slow down the progression of MS. I also follow the guideline set forth by the National MS Society which to paraphrase is, to find an MS medication that works for you and stay on it. My MS medication of choice is Copaxone. I'm not posting this to say EVERYONE GO ON COPAXONE RIGHT NOW; I just want to share what I take with everyone. 

I've been taking Copaxone since my diagnosis in September of 2009 and I have never thought about switching. At the time of my diagnosis the only medications available were injectable medications, now they do have pills, but that wasn't part of my decision making process at the time. 

I had to choose between five different medications:

Avonex - 1 time a week injection

Beteseron - Every Other Day injection

Rebif - Three times a week injection

Copaxone - Daily injection (Yes, I give myself an injection every day) 

Tysabri - Once a Month IV

Tysabri was nixed by my doctor from the start. The way the drug works is to lower you immune system and by default has a lot of side effects of it's one. One of the most serious is PML which is a brain infection. He said that I should try the injections first and if that they didn't work then we'd revisit Tysabri. Works for me! 

Avonex, Beteseron, and Rebif are Interferon's and while the injections were less than Copaxone they all have side effects that can include flu like symptoms. As well, I would have to get my liver checked every three months. Avonex also has a REALLY BIG NEEDLE. All of the other injections are subq, which is an injection that does not have to go into the muscle. Avonex is IM which means it's into the muscle and A HUGE NEEDLE. 

Did I mention HUGE? 

The blood tests and the flu like symptoms were not on my list of things I wanted to do. That left Copaxone. Copaxone is an amino acid, a subq injection with no blood tests, and no flu like symptoms. Now, injecting myself every day was also something I didn't want to do, but I also felt that I had to do something for my MS. 

I've had some side effects, mostly injection site stuff like itching and stinging. The stinging is like a bad bee sting and it goes away pretty fast. It is a little painful but nothing I can't deal with. Once I've had the IPIR reaction. This is where you feel like you're having a crazy panic attack for about 10 minutes (heart attack panic attack same thing - smile). I knew what it was though so I didn't get too scared. 

When I was diagnosed with Cancer in June I was really worried about my taking my Copaxone shots. Call it focusing on something I had control over but I REALLY wanted my Copaxone. My oncologist's, hematologist's, and slew of other doctors had to research Copaxone and any interactions it may have with my chemo or with my immune system. However, within two days of being hospitalized I was able to begin my Copaxone again. 

I was told that if I had been on any of the other injectable medications for MS they would have discontinued my MS treatment. This to me was a huge plus on the side of Copaxone. I was going to be poisoned by chemotherapy but my Copaxone was safe enough to allow me to continue to take it. I was ecstatic. 

Even with all the stress of a cancer diagnosis, hospitalization, and 8 months of chemotherapy, I have not had a MS flare. Is that because of Copaxone? I can't say, but I can say that I'm sure it didn't hurt. 

Just as a side note: As of January this year (2014) Copaxone is being offered as a 3x a week injection. Woo hoo less shots!  

MS and Cancer or Why I love the Red Wedding episode Game of Thrones.

I'm back! Most don't know, some do, some don't care, but I had Cancer (record scratch)! Nope not a joke, because that shit isn't funny, and who would joke about Cancer? Well, I might joke about my experience...a little. So picture this...(magical music).

Back in January of last year I started feeling really crappy. It actually started a little bit before that but I was still doing my thing pushing through. I went out of work in January because I thought I was in the middle of a flare (little thing where the MS finally does some damage and something bad happens). I have all these tests and at the suggestion of my Neurologist I leave work. We thought this would be a temporary situation.

I keep getting worse and worse and to all my doctors it just looks like my MS is progressing. I get fatigued easily, I become dizzy quickly, and I'm just weak. We start doing functional testing to see if I can even work again. At the end of May I'm scheduled to get a Neuropsychology evaluation. A Neuropsychologist is exactly what it sounds like a psychologist that specializes in neurology, and I'm all prepared to be upset and told that my MS is progressing and that I'm doing bad health wise.

Since I'm home a lot I have started watching the Game of Thrones. I'm at home at the end of May watching the Red Wedding episode. For those of you who haven't seen it sorry but I'm going to spoil it. So, everyone is getting killed EVERYONE and I start to cough.

*cough cough* funny it feels like something is in my throat
*cough cough into napkin* Oh shit it's blood.

Now you may be asking yourselves "What the fuck is wrong with you? You had blood when you coughed and you didn't go to the ER RIGHT THEN?" Ever have a bloody nose? Well that's what I thought it was, plus it was the Red Wedding!

This happens two more times and I blow my nose after the third time to see if I do have a bloody nose. Nope. Huh, so at this point I decide that going to the ER would probably be a good idea BUT the episode still has 10 minutes. Oh yes, I stayed home and finished that episode of Game of Thrones while coughing up blood. I should probably get a walk on role or some such just for that.

Fast forward a bit to after the doctor got my blood tests back "You are very sick" Oh really (side eye)? How so? How so is that I have a platelet count of 10 (I went to look it up) and a WBC count of 1.0. Platelets do this cool thing called clotting your blood (TADA that explains the coughing up blood). Just to tell you how far gone I was normal platelets are from 150 - 400 (I was also doing things like bleeding out of my gums and bruising) and with a White Blood Cell count of 1.0 I ran the risk of catching every germ known to man oh and can't breath because my Hemoglobin is under 7.

Hospital, mask, tests, bone marrow biopsy (a whole other blog), and then a diagnosis "You have Leukemia" (blink blink).

Oh. Well, that explains a lot.

I have Acute Promylocytic Leukemia or APML or AML for sort.

I was hospitalized from June 1 until July 18th just to stabilize. February 7 2014 was my last chemo treatment and as of today, I am feeling pretty good. Cancer seems to be gone and I'm slowly recovering from 8 months of almost daily poison (another blog as well).

I must say thought my MS is doing quite well (laughing).

Things not to say to people with MS, people with cancer, or just people in general

Yes, it's me - alive and fighting my leukemia. I am legally blind at the moment because of low platelets (these cool things that make your blood clot) and retinal hemorrhaging (cause eyes don't like to bleed). So I haven't blogged in awhile. Things are a tiny bit better and I have the screen magnified and I felt like blogging.

I'll get more into the craziness of what's going on but for now here is my list.

1. "You don't look sick." Well you don't look stupid - yet here we are. No, you're right I'm lying about being sick and not working because it's fun
2. "Chemo doesn't work for cancer. The only thing that works is..." which is followed by ionized water or a vegan diet or something else their mothers sisters friend heard of once. Just stop and be quiet. 
3. "It must be nice to be able to sleep all day" Hows this. You get my cancer and then I get to work and not sleep all day. 
4. "I know just how you..." Just stop. No you don't know how I feel. Unless you have MS or Cancer or something similar you have no idea. Don't say it. 
5. I wont talk about anything else but your cancer every time I see you. Please, change the subject. We like talking about other things. 

Now I'm tired so I'm done with my list (smile). 

MS Annoyances or ARGH MY ARM

My arm hurts and it's annoying me today. I know it's from a muscle spams and I'm doing some stretching exercises to work out the kinks. To be honest I do these stretches all the time. It helps keep my spasms at bay which keeps me out of pain. For those that didn't know, at the end of January I had a MS meltdown and my right arm was in so much pain I couldn't move it. It's better now but it still decides that it needs to remind me of the invisible knife it can stab into my rotator cuff.

This is a rotator cuff. My shoulder likes to stab my subscapularis (big word) as if it were a home invader. This pain radiates into my bicep and everything else in my upper arm/shoulder.



As you could probably guess this means my ability to do things like type, drive a car, and just to move is severely inhibited. My spasms seem to be pretty isolated to my shoulders and feet. To be honest, maybe I just notice them because my shoulders and feet are the places that hurt. Maybe I am just spasm ridden!

When my muscles bug my shoulders I just want someone to do this to me. It looks painful but honestly it's not. My Physical Therapist touched my shoulders once and goes "DO YOU FEEL THAT?" I said "Uh huh" it was a lump - I thought it was just my muscle well I was partially right. "That is a LUMP you're not supposed to have that!". My muscle was knotted up into a tight ball. Previously I muscle knots were just a term for a tight muscle but boy I was wrong!



So today I have made an appointment to see my massage therapist and I am going to keep on stretching. Such is the life of the MS person. At least I get massages out of it (smile). 

He's a Pepper She's a Pepper

I have grown lots of things in gardens as a child. Tomatoes, cucumbers, eggplants, an okra. A slew of other things thing that we don't need to list here. I however have never grown bell peppers. I didn't even know what or where the peppers were going to come from. Until I googled it that is (yay for google). I am proud to announce that my bell pepper plant has sprouted a flower! 

Making it's first appearance on my blog. This is flower the future of bell peppers! I am so excited I could shit a kitten. Which probably speaks to my mental health but ya know everyone has to be excited about something. 

My tomato plants are also doing famously well! This is a mass of flowers on my Roma...I think. I'm beginning to suspect that the seeds were mislabeled. We will see however as soon as the fruits start to grow (smile).

My third planter box will be built in the near future. I'm trying to find some reclaimed wood but I think I'm going to strike out. That means I will buy more lumber soon. I'm not in a rush for the new box because I need to get my seedlings to grow. I only intended to grow two beds but I've got the bug. So here are the next generation of plants happily germinating in my kitchen. 

The gardening has been fun and has an added benefit of being therapeutic for me. When I an out there working with my plants nothing enters my mind. It's working as an active meditation, reducing my stress levels. This helps my MS of course and it seems like some of my massive symptoms are slowly subsiding. At least it seems my leg is not as weak as it was. 

To end this blog - Kobe

MS Awareness Week!

Yes ladies and gents it is that time of year again. It is MS awareness week (round of applause).  This week I am going to post information about MS every day. Today it will be very basic overview of what MS is. So if you've had MS for awhile you might be bored (smile). I hope that some of my information will be helpful to someone on the interwebs. 

MS is an autoimmune disorder. This means that our immune system gets angry at things it shouldn't. Usually a healthy immune system only attacks bad things like bacteria but for some reason our immune system gets confused and attacks parts of our nervous system. 

The Myelin sheath covers the neurons within in each nerve bunch. Well for those of us who have MS our immune system decides that this sheath is the enemy! The sheath is like the insulation on an extension cord. When it's damaged the electricity can't get through or goes slower. Sometimes it stops all together which causes all of our symptoms. Since every neuron has this sheath you can see why MS can be different for everyone.

The resulting damage is called a lesion. These lesions will show up on MRIs. When damage has occurred it can do a few things, get better, stay the same, or just die off. When it dies off it's called a black hole. Look at this MRI for an example. 

I have black holes personally and it doesn't stop me from functioning. It all depends on where the lesions and black holes appear. Placement is very important. For example if they develop in an area such as the spine it can effect your mobility. I also have spinal lesions and I have no problems with mobility. I am going to have to attribute that to exercise. Maybe that's not what is keeping me mobile but I'll take it! As well 70% of people with MS will never need a wheelchair. So, that image of us wheelchair bound and just accepting our fate is not true. 

I will talk more about MS as the week progresses and I hope it's informative and helpful. At the very least I want to dispel some of the myths that surround MS, like the fact that we will all lose the ability to walk. 

Why I Dislike Montel Williams

(waiting for the shock to ware off)

Everyone ok? Yes I said it, I don't like Montel. It actually borders on a little be of hate. I do admit he has his own foundation but I have no idea what it does or how it helps those with MS. It might be doing a lot of great things so if it is kudos.

This may be the only good thing I an say about him these days. Why do I dislike lovable wonderful Montel? Why, I'm glad you asked.

1. I use to like Montel's talk show. Until he started having Sylvia Brown on there every year saying Montel was going to find a cure for MS...every year. It was pretty obvious he was grasping at straws and living in a destructive head space. 
2. The 400 infomercials he's on. I get it, you want to make money, but don't say that everything makes you feel so much better. Either you're fooling yourself into believing it is or you're lying. If copper shirts helped, then EVERYONE with MS would have one. Do you think this is something new? Your juicer isn't going to cure anyone either or payday loans. 
3. Agreeing on Oprah that the MS Hug can kill you. Shame on you Montel you know it can't! If you don't know then you need a better neurologist. 
4. Stop crying at everything. I get it you need to cry, all of us do, but it's just ridiculous at this point. 
5. Weed. OK you want to smoke weed. STOP talking about it. I don't care if you want it, stop talking about how awesome it is. No drug is awesome. I don't care what it is. 

All of this and more, make people with MS look ridiculous. You have access to things some of us with MS can only dream of. Why are you on TV whining? You know what? I have pain too but being selfish and taking myself out has never crossed my mind. I don't have to lie about what MS does to me to look for sympathy. I don't need anyone's sympathy. I don't need to smoke weed to make myself feel better and if you want to do something illegal then suck it up and deal with the consequences. 

So yes I dislike Montel. I find it offensive when a strong men turns into a blubbering idiot hawking everything but suppositories on late-night TV. What happened Montel? 

Gotta Love the MS

Today I had a follow up visit with my lovely Neurologist's office. Actually, I saw the ARNP and will see Doc next month. I love this office just so everyone knows. They are a real gift to me and everyone else who goes to them for MS treatment.

My appointment went well. I've been sick but it's due to stress and my body just saying enough. The office did find out that my right leg is a bit weak and that we need to keep an eye on it. No more heals for me until I figure out if I can do it without some major incident (laugh).

I also had an MRI last week to see if I were in an active flare. A flare is when your immune system is actively attacking your neurons. When you have an MRI done they give you this lovely dye (contrast dye) that shows these lovely spots. They light up and are also called a flare. Guess what? Great news! I have no disease change! This means I have no active disease and no new lesions. Now, that doesn't mean I can't be sick or that something else isn't going on but at least it seems that, for now, what I've been doing has been working. Yay for drugs, exercise, and paleo (may not be any of those but that's what I'm betting on for now - smile).

I'm still sick and she says it's going to take awhile but I'm pretty positive about the whole thing. Give it some time and everything will be great! 

The Korean Half of Me is Trying to Kill Me (as Koreans do)

I'm resting. I'm resting because I'm sick with because Aug - January stress is very bad for people who have MS. My arm got angry and tried to rip itself off of my body but after a couple of weeks of negotiation talks, I believe it's staying, my eyes freaked out on me but they've calmed down. The fatigue monster is alive and well jumping around in my body but he and I have an agreement so we're cool for the moment. I'm not sure why I'm not hungry and talks between my tongue and stomach seem to be ongoing.

So, I am resting until the negotiations have ceased. Since then I've been doing things like reading, blogging, catching up on movies I've meant to see, and watching awesome giant squid documentaries on the discover channel. WOW did you SEE that thing? Go watch it now!

My Korean side finds this all very lazy, a waste of time, and that I should be doing something like rock climbing or working four jobs. OK, I agree that I would like something to do but I can't do anything too crazy or all my MS symptoms might start blasting again at full force. I will go for a walk with the dogs (not run 3 miles like I was) and I love my dogs but they're not all that interesting walking in a circle. My mind has decided that gardening would be great.

This will be the type of raised bed planter that will be in my back yard.

(sigh)

But now it's building a raised bed planter, making sure I'm all organic, and finding ways to get rid of bugs... (sigh). So, I've enlisted a bit of help and they're going to build a gardening box for me (smile).


My Korean side does not like this and wants me to put it together myself. However my white side is going to win this argument. I can do some simple gardening but not actually build a box like a construction worker.

Stay tuned for pictures of my new and awesome veggie garden (laugh).  

MS and Crazy Weird Things

MS is a fun disease which has no rhyme or reason, can be different from one day to another, and can be different from person to person. Me and most of my MSy friends (KC 11 REPRESENT!) are doing fine with our MS. We all have our problems of course but we live well, enjoy our lives, and are positive people.

We're kinda like this maybe a bit louder.

I'm out of work for at least six weeks. Why you ask? Cause I'm sick. This is the really fun part of MS when you get sick for no reason. The worst thing? You don't look sick. Yes it's one of those catch 22 situations. You're sick and want to work but you don't look sick and can't work. So, everyone judges you and you get to feel even worse about not working and being sick. 

I have a bad habit of pushing myself to much. This last time I kept pushing and my eyes finally checked out. That means I get this awesome double vision that looks like a bad TV screen that's not in tune. I also know that a lot of younger people wont remember rabbit ears on a TV set. Look it up it's funny. 

I also have a habit of telling people that I'm fine. I don't know if it's because I've been taught not to seem week (thank you Asian upbringing) or if I just don't want people in my business, but I never ask for help and I'm always "fine". 

My boyfriend has now started asking follow-up questions. Goes like this: "How are you today?" 

"I'm fine."

"Oh OK." We talk about something else. 

"So, how are you really?"

This gets me to laugh a little and tell him what's really going on. When we first started dating he would get upset because I'd need help or be sick and he had no Idea. I'm working on that and he asks follow-ups now to help me (smile)

For the past few days I've been in a tremendous amount of pain. My shoulder, and more specifically my rotator cuff was irritated. What this means to me is that it feels like my arm is going to rip itself out of it's socket. I also can't sleep, move, type, scratch my nose...

I hate taking narcotics but on Saturday when I could not sleep or find a sitting, standing, or laying position without pain I went to the Emergency Clinic. I got some strong anti-inflammatory and some pain medication. Narcotic of course. 

Fast forward five days later and I can sleep and scratch my nose! I should have put my stubbornness behind me and asked for help earlier. So, I have decided to ask for more help and admit I'm sick and suffering from pain and fatigue and other MS crap. I'm still happy and in a good mood and I know this will pass and I'll be back at it like I was before. For now though it's OK to rest. Just like if I had the flu the only difference is that no one else can see this illness.

Don't judge me to harshly people who don't know what's going on with me and I'll try to do the same for you. 

A Butcher, a Baker, and a Paleo Girl

I love to bake and being Paleo has kinda put a damper on that. I really am not tempted to eat any of what I bake but I really would like to be able to bake more things that are Paleo friendly. This has lead me on a long journey of finding alternatives.

The two I have found are Almond Flour and Coconut Flour. They have their pros and cons and I haven't started using them 100% exclusively yet. It's also the holiday and when I bake I like to just bake. I've given most of it away and only ate small bits. This really made me notice a few things.

Paleo really does work for me as evidenced by the tummy problems and heart burn I had (smile). I don't like fad diets. So once-in-awhile I get it in my head that Paleo is a fad and I'm not doing anything positive. Then I eat a cookie (laughing).

I am debating the merits of doing another leptin reset. It worked very well for me before and maybe it will again. Hm....

One of the best things I attribute at least partially to my diet? The fact that I feel better and my MS hasn't been as 'bad' this year. When I say bad I mean muscle spasms and small things like that when combined add up to a big thing. It's been rather nice.

I'm going to have to find a way to make baking paleo so I can combine two things I enjoy. Maybe it's not possible but I'm going to try! 

It's the End of the World and I Feel Fine!

Wow two months huh? Sorry about that. The Mayan thing had me prepping for the end of the world and I had to make sure I had enough eggs stored. Speaking of...Have you people EVER seen Doomsday Preppers  Yeah, I didn't know you could oil up eggs and keep them for years EITHER. So, that's my tip for the day. 

Actually, I've just been crazy busy! I am happy to say I have a new job that doesn't eat my soul away (YAY), still loving paleo 100% (YAY), and am MS flare free (YAY)! I'm even feeling just good in general except some fatigue now and then. Big step up from lasts years "Bronchitis that lasts two months" fiasco.

I've been trying out some Paleo recipes and I'm going to post them here in the up-coming weeks. I've also just started to run again. My broken foot really kicked my bottom and I've just now been able to do 4 miles without pain. If you break your foot GO TO THE DOCTOR AND LISTEN TO HIM. If I wouldn't have I have no idea what I'd be like right now - probably unable to run again. 

A tip for my peeps (like that?) in the Orlando area - Freshfields Farm  is my new go-to place for produce and some of my meat! They don't have grass fed (yet) but they do have hormone free chicken, and I've had a hell of a time finding good chicken in the area so this works in the long run. Either way the produce is fresh and the meat is also fresh and cheap. Good things in my book! 

I love my new job! Doing the same thing I was before but again no soul sucking! Having a soul is a plus in my book and I want to keep mine around for awhile. 

Oh, and as a side note. I started a PhD program (big smile). Not doing much AT ALL. 

 

Keeping up with the MSers

Hi Peeps! It's been awhile I know. Life gets in the way what can I say (smile).

I'm going to get back to my daily posting starting with this one.

As some know (or don't know) I am a MS Advocate. We recently had our forum meeting and let me tell you it was amazing to see everyone again! It's also a great restarting and re-energizing point for us advocates.

This links back to MS in general. There were over 180 of us at the forum. Some of us are disabled (in motorized chairs or walking with canes) but most of us are not. I have to say the all of who were there are OK. By that I mean that while we have our issues we are living and having fun! We went to Lajolla and climbed around an Aircraft carrier; even those who had mobility issues were on that aircraft carrier.

This brings me to a point that I have to reiterate. How you deal with your disease and how it effects you is VERY contingent on your perspective. We all walked, laughed, danced, were silly, and enjoyed ourselves. So many people consumed themselves with what ifs and woe is me thoughts that they miss out on their lives.

Is it kinda crappy that I have to give myself a shot? Yeah sure it is, but honestly it's just part of my routine now. I get fatigue and other cruddy little things but most people get that.

I was traveling for over 12 hours the other day and I started thinking about how exhausted I was. Well, anyone would be exhausted after that much travel.

I find a lot of people with MS just want to complain and wallow. Yes it does suck sometimes, but for the love, life isn't always sunshine and puppy dogs!

Words of tough love now - Get over yourself. It's life. Good and bad things will happen and you have to deal with it. Try not to drag everyone else down with you! 

A Whole MONTH!

Wow, June has been crazy! I just got the desire to blog and looking at my last post I realize it's been a month! How crazy is that!

The month of June has been crazy for me personally. I'll do a quick rundown and then I'll blog more about my fitness and diet stuff as time allows!

1 - Florida is hot. REALLY HOT and I lost AC for about three weeks. Now, when you have MS no AC in Florida = torture. Luckily it's fixed now and the sweet good of cold air favors me again! Do not anger this person!

2 - Florida is also full o'rain. Rain rain rain this month. So much rain that On June 25th I got a little flooded. YAY. No AC and Flooding. Hmmm

3 - June 25th was also my birthday YAY. No AC and Flooding on my birthday. Hmmmm

4 - I have been diagnosed with Arthritis in my neck. SO, on June 21st I had my first PT appointment. Where I found out that my shoulders are all kinds of fucked up because of pain (I was electrocuted that day to try to make the muscles behave), I can't run until we get it fixed (because of compression), and I'm going to have PT every Monday and Wednesday until the end of the world (which is Dec 21st). That was a busy Thursday.

5 - I'm on a new project at work! This is good because now I have something to do at work! Yay!! This is very exciting for me!

6 - I have proof I live in hell (floodings, fire, and no ac).

WHEW what a busy June!

I've also been continuing on with my whole, nutritious, and locally grown foods lifestyle. It makes me feel 'so' much better. I'm also going to post a review of a book I just read called It Starts With Food by Melissa and Dallas Hartwig. I also got a fitbit and will be talking about that.

This second half of 2012 should be exciting for me!

Have I ever mentioned MS doesn't like stress....yeah (smile).