Thursday, October 31, 2013

Day 18 and 19 tec with t

Whew. Been a rough couple of days. Definitely looking forward to these symptoms passing.  I haven't committed but the once although I walk around sometimes with a cute gift bag and have a "just in case" bag hanging in the car. I'm mostly not nauseous...Just that gripping stomach pain that feels like I'm in knots with someone poking bruised areas inside my tummy. Hard to describe. Hard to live with. That said...it's not unbearable...Just close. 

Today I had a better breakfast and added a hot chocolate but this time I didn't do the skinny version...did full fat milk...think that helped as my tummy was only mildly hurting until around 2:30.  Have been munching on gluten free pretzels trying to keep something on my stomach.  Drinking lots of water to keep it flushing out of my system as best I can.  I'm also making sure going forward that I try fattier fares. The chicken Vietnamese crepe thing was tasty but not sure it held its own in the Tecfidera race against pain.

I'm looking forward to making it further...
Trying to stay focused on the end...
Enjoying the prayers and strength from God to endure...

One note...I saw my doc today.and got my spectra cell lab work back. My anti oxidants are a little low...like vitamin e...hoping the next test shows my spectrox sufficient. I'll never interesting readouts on the anti oxidant effectiveness for sure...

Doctor block did say Tecfidera was not his choice but refused to give what he would have chosen. Said do it now that you have chosen it...ugh. I thought he'd be a fan

He did tell the story of where the product originated with the sofas being treated for bugs and molds...and how people were getting sick but ms people saw diminished symptoms when they had been sitting on them...

Well who knows...on we go into the evening as we head to day 20!!!

Wednesday, October 30, 2013

Night of the 17th...tec with t..morning day 18...

Yesterday was unbelievable...the 17th day...I'll start from the top. Couldn't post it yesterday as I just didn't feel like it.

I couldn't force myself to eat the fatty breakfast...went to whataburger...ordered bunless jr hamburger and fries...ate half the meat but it was awful and salty...ate for fries at once but couldn't make myself swallow them...the grease repulsed me...

Then drove to sonic for tator tots as I have to eat to take the pill...could only force down 4...didn't get my pill in until 10 am trying to force feed myself...

Went to lunch at los cabos but the nachos on gluten free chips made me nauseous...ate some but just felt awful...

Last night went to dinner at ridge grill with grilled shrimp and basmati gluten free rice with veggies...ate it ok but just felt funny...

Went to bed...took a pepto...took a tums...got 2 hours sleep and then woke up feeling worse...another tums...Went back to sleep after two hours...woke up when I turned over and needed to go to the bathroom but felt nausea and thought I was going to be sick...sure enough...it wasn't normal though...didn't feel like that gut wrenching painful stuff when you vomit with the flu...just like I was ridding my tummy of stuff that had been sitting there too long not going anywhere...definitely happy when that was over...complete emptying...brushed my teeth and back to sleep in 30 or less...

Felt better this morning...had a tiny gluten free waffle and a gluten free corndog and my pill...didn't enjoy any of it...just had to eat a protein and bread and starch...(rice batter on corndog)...

I'm tired...I'm feeling buzzy all over...and have too fight the urge to skip the pill daily...and think about it all the time...wondering why I'm doing this took myself as it feels like poison...ugh.

Whew.........

Tuesday, October 29, 2013

Day 17 tec with t

Definitely going strong on not feeling well...more nausea today...actually the first I've really experienced it...

Thought I was going to be sick at lunch...and now I'm lying in bed and feeling pretty awful.

Couldn't hardly eat this morning...had terrible swallowing the food. Wanted to because I didn't want to be sick but it just wouldn't go down.

Definitely has better days.

Ugh.

Tec with t note on strength

Trust in the Lord forever, for the Lord , the Lord himself, is the Rock eternal.

so very true...I'm not sure how people without God face some days...makes me sad because he loves us all and they just don't have to go it alone...

some hearts just don't think they need him...some hearts are just hardened and fight with all they have against his love regardless of what they have seen. I pray these folks have a need that brings them to their knees before it is too late.

it's honestly a struggle sometimes to remember to seek him first as life has so many distractions...and I fail miserably some days...more days than someone who has seen God change lives, rescue someone I love dearly from a life I can't imagine for them...and a list a mile long of ways he has been there for me really should...it's a battle...

the best thing about my silly old ms has been daily being thankful for things I always took for granted...leaning in my weakness on the Rock eternal when I so sassily lived sometimes like I could do it on my own.

thankful that no matter how far I stray...the Rock eternal is there for me and never fails...and has more to do with who I am and any strength I have than anything in my DNA.

I don't know why I'm sharing all of this as I lay here trying to rest...on my new meds (which make most people really sick and I'm bearing it pretty dang well and excited that they aren't kicking my tail like they have so many) I think it's because I pray that someone who I don't even expect reads this and sees the welcoming arms of God...someone who thought they were too far away or maybe just lost their way and needs something tho lean on...the Rock eternal never changes...never leaves us...never forsakes us...regardless of how far we roam...the door is open if we want to come home...

Monday, October 28, 2013

Tec with t day 16

Kinda blended the days a bit...

So far the evening is going ok. I feel a bit weak and slightly uncomfortable...but not excruciating pain....

Need to eat fairly often as being hungry definitely evokes more funky mild nausea...but again...not unbearable...had a gluten free pasta for lunch but didn't eat a ton. Appetite definitely lighter although I'm generally reading crappy food...

Had about 2 oz of steak...a little Caesar salad and a scoop of cheesy potatoes...glass of red wine or two...and felt pretty decent. Woke up with a headache but I think that's from the weather changing...two excedrin migraine and gone in thirty minutes. 

I am still doing claritin ready tabs 24 hour allergy meds...I skipped a few days but back on them as I think my allergies trigger a lot of my inflammation...and ms...

No symptoms going on...no flares or relapses at the moment...super tired but not sleeping at the moment...

I'm really excited being 16 days in and heading into 17 in a few hours...hope this blog helps someone considering Tecfidera or trying to figure out what to do to make it the first 30 to 45 days which are supposed to be the worst.

Realize I haven't been that personable in the writing...but just trying too sick to the facts and symptoms to make it a quick easy read if someone wants or needs it...maybe no one ever reads this. Lol. Who knows...but I know I read a lot of notes I could find before I took this med and tried to glean what I could too survive it...

Day 15 tecfidera with t

Well the night of the 14th day was less than pleasant. I had pain in my tummy about every time I moved. Lots of sharp pains plus acid reflux...it's gross to even write it but lots of burping...I mean power burps and a few I couldn't hide. Ugh.  I still functioned in the evening but I've had better freaking days.  That night was by far the worst yet.

The next day I laid around for day 15...tired and burpy. #sexy lol

I didn't do much but go to church...

Everything I tried to eat gave me burning awful stomach pain as soon as I swallowed it. All day it was the same...until dinner when I did McAlisters deli with gluten free bread for a half ham sandwich and a potatoe with a tablespoon of butter and light amount of cheese.

Feel asleep but feeling well but woke up all night feeling pretty good execute
Except when I turned over.  I felt so good this morning I thought it was gone.  The sausage egg and hashbrown breakfast that I've grown.to hate went down pretty well...

Today for day 16 was then mostly random pain but nothing awful. Definitely still burpy...still uncomfortable...but tolerable if this is going to improve soon...

Definitely thankful to be doing this well...

Saturday, October 26, 2013

Tec with t day 14

Today has been the roughest one yet. The amazing gut pain isn't unbearable but it isn't one that keeps a smile on your face. Had a difficult time hiding my discomfort all day. I still functioned and did everything I wanted but sure wish there was less aching in my stomach. Definitely acid pains and gas type pains. I rarely ever burp and I think I've power buried in private about 100 times and one accidentally in the sofa in front of the fam. Ugh. Not loving today but I'd I keep making it through...hoping for day 30...then even though unhappy I'll make it....

Days 12-14 Tecfidera with T

Well the stomach burning from day 11 repeated itself day 12 with a slightly stronger vengeance.  It was generally at 6-8 at night every time. It seemed I should have eaten earlier and it wouldn't happen but difficult to say. I did eat later both days. I still had not had more than a little extra burping along the way.  When I went to get in bed on day 13 I had a gripping gas pain in my abdomen. I thought oh no...here it goes... I honestly thought that I wouldn't be able to get out of bed if it hurt like that when I laid down. Then it was gone and never returned. Did make me think that those who have the gas pains must be in misery. I had a relatively uneventful night.

Last night though was a different plan and a different outcome. I decided not to eat before the football game.  I wanted tio see my cutest nephew march with his drum. It was well worth it. He was incredible. So freaking cute.  I left at the end of third quarter.  It was 9:10 and no meal and no tec. So I stopped at a gas station to take my aspirin.  Grabbed a funny bag of chips and ate a handful so as to not upset my tummy with the aspirin.  I drove around 15 more minutes and then stopped at the taco bueno for food.  The gluten free life makes fast food very short on choices.  I ate about 25% of the order and took the Tecfidera.  Things were fine...but then I went home and got into bed with my sweetie.

It was about 2 or 3 hours later abd I awoke with severe belly pain. It was acid reflux with a knot and pain. All centralized to my tummy. I burped about 5 times very quietly...which helped but because I was laying down, I think it made the reflux worse and allowed more stomach acid into my esophagus. It was hurting up to the back of my throat. I switched sides and found relief for slight moments. Finally I had to sit up higher in bed with my pillows propping my head. Probably another 8-10 burps and I began to feel better. It was about a 45 minute ordeal although I'm unsure how long it hurt to wake me up.

After that I went back to sleep with my head propped higher on the pillows and slept through the night. I definitely feel a little stomach pressure this morning indicative of gas, but I'm nit in pain anywhere.

Seems I had read that someone had a bad experience when they lied down so quickly after taking the meds. I'm pretty sure that the falling asleep 20 minutes after the pill thing made this happen.

I'm a little concerned that the intensity increases daily when I have an issue.  Sort of like my body is slowly building up to ring my bell with a vengeance.  That said....I'm doing great today so far this morning and almost half way through my first month!!! I'm feeling pretty good that if I can make it through 30 days that I'll be ok...that 30-45 day mark seems to be the magic number.

I'm still in the middle of a relapse that started the day I flew back into Oklahoma. I'm sure that my allergies sry it off...but it is just mild tingling all over my body and a little bit of an eye twitch on the left...but that's new. I've had it affect the right eye before but not the left.

In any event...the world isn't ending and I'm feeling very blessed and lucky that I've made it this far on the Tec without more episodes like last night.  I'll watch it tonight as I get back on schedule and see if it is a build up or just a bad timing with going to bed after taking it issue.

Thanks to God that I continue to make it.  I definitely cry out to Him in the midst of my pain and know I am not alone. It is most definitely where my strength comes from.

T

Wednesday, October 23, 2013

Day 11 tec with t

Well....hmmm...

Today borderlined on tummy pain. Had a bit of chili at a bible study...not a lot...but then had heartburn immediately...it was intense...I don't get heartburn...haven't in forever...

Ate some nachos and they weren't going to help...before I took the next pill. So the greasy food isn't really that great for it...

It was better after I ate about a cup of ice cream...can't easy this easy forever but neck if I want to feel bad.lol.

I'm feeling fine now...so...........

Day 12 I guess we will see....

Tuesday, October 22, 2013

Tec with t day 10

Meds are still doing great. Still eating either two pieces of bacon or a piece of sausage for breakfast and the potatoes...skipping the Dr. Pepper as the calories are a killer. Lol

I am having numbness all over today...thinking it started because I flew back into Oklahoma...allergies...hubby started sneezing on the drive home...hmmm..Will have to see if it happens again when I travel that I'm better elsewhere than here.......

T with Tec day 9 evening

Well...grabbed some Mediterranean chicken kebabs at the airport with rice and are on the plane as close as I could to the right timeframe. I'm finding taking the pills within the 10-12 hour range to be acceptable. Tomorrow is day 3 in the double dose. Definitely something I'm wondering about...but since I've done so well so far...I'm just not going to let it get to me.

I keep thinking of I make it to day 45 that I'm in the clear on being sick...but we will see.

I'm also curious about how my other tests came back. I did the spectracell test again with my regular doctor to check my levels...and I'm hoping things look even better. I did that about 4 days veggie starting the Tecfidera. So it will show how other things were helping already.

I have mtfhr which is a genetic mutation for processing b vitamins. I have both the 1289 and the c677 or something like that. Together they seem responsible for the train I've always been short on b12 for as long as I can remember.  I'm hoping that taking the b12 from those special b12 pills for people being the intrinsic factor to process the vitamins will help.

I was taking kids of vitamins when this all started...trying to get pregnant...and I'm pretty sure that since my buddy wouldn't prices the b6/folate that I was toxic or borderline...wish that were what caused my "ms" vs. the thought that I actually have ms. Makes sense in my head but it could be very wishful thinking.

What's strange about my ms is that I haven't had relapses the same as others talk about. I had slipped a disc when I first was diagnosed and assumed that was what the ms symptoms were from. My back was sore for months...and then when my back felt well...the numbness in the outer part of my legs went away. I don't feel like it ever was numb. So it strikes me odd that it wasn't from that incident...of course my upper spine was active this year and that caused new all over numbness symptoms...but boy it sure seemed to clear up fast when I started the new b12.

They other thing I did at the same time was reduce the gluten...I took it out of my diet on August 1st...screwed up that day with my tempura shrimp sushi and then did it on the second but right. I still tested positive for gluten at the doc.  I sent from about 27 or so on the vote test down to 6...it's supposed to be zero...but I guess there was tracer gluten in my dogs when eating out. I'm getting better and more folks do gluten free menus. Boulder Colorado was the best by far. Orlando want too bad either.  Had a gluten free burger at universal studios on the Harry potter side...bun was good but not the burger. Lol.

Anyway...I just want to log all of this in case someone else doesn't know about Tecfidera and what to do...and other things that seem to help with the ms like my allergies and diet control.

I'm convinced that my gluten sensitivities caused me to get ms if I have it. I have eaten bad and pasta my whole life. So if it messed with my gut and let the rest of the things I used too love into my blood stream...explains why I'm only allergic to food I used to eat.

Anyway....We will see.

Thank you God for your answered prayers...keep me close.

T

Monday, October 21, 2013

Tecfidera with t day 9

Well day 2 of the bigger dose...
No side effects so far...
I'm eating when I take this pill...
Breakfast the least I'm eating is two pieces of bacon and hashbrowns...which isn't a normal breakfast for me or one that I want to continue...but I'll eat some horrible stuff to stay free of the side effects on the tummy...hoping after 30 or so days I can eat something healthier and still be ok...

So many prayers from my family...can't even begin to thank them...

And to thank God...as I know He is with me...

Sunday, October 20, 2013

Day 7 tec with t and day 1 240 mg

Day 7 was uneventful. My eyes are Little more red than usual but I need too check to see if it happens during the day or just at night and in the morning...

I am starting day 1 of the full dose today. Had hashbrowns and bacon lots of water and will add a soda in a few...pretty nervous but hoping it will be ok. Definitely praying that God is with me as I go.

Saturday, October 19, 2013

Day 5 and day 6 with Tecfidera with t

Nothing new to tell. Very uneventful...which is awesome. Lol.  Don't want any side effects. A little nervous as we head to Orlando for some Disney magic and universal studios because tomorrow is day 8...meaning I go up to the full dose twice daily vs. Half a dose.

I did freak out last night thinking I.lost day 7 dosage...but somehow it feel out of the bottle. The pharmacist said ho ahead with the full dose but interestingly if I get sick...That they might do the half dose longer... thought that was interesting...guessing so many people didn't feel well that they had to come up with another plan. Hope not though.

So tomorrow will be d day or t day for big pill #1...

I'm flying home Monday which will be day 2 of the big guy...so hoping that's not a problem.

So far I've been more worried than bothered which is awesome...

Never a flush...

Some canker sore type things in my cheek...don't think I ate anything odd that would have caused that like highly acidic fruits...so guessing that might be the tec...

We will see...

Wednesday, October 16, 2013

Day 4 t with tecfidera bg12

Well today was the most sensitive day on the new meds. Did the same breakfast. Lunch was a very low fat smoked Turkey with just a spoon or two of potato salad...about 3 hours later had some tender feelings in my tummy. Nothing horrible. Had some fries later abd felt better. Seems the wise I eat the better I feel...and I don't like that. There are worse things in life for sure...but I feel like my arteries are going to need the Bayer aspirin more than my flushing. Haven't really flushed yet. Yay. Some cool tingly feelings that seem slightly odd but not remotely worth talking about other than a quick note to have them "noted."  Lol

There was a point on the plane today where I needed to burp...and it was a little vurpy (gross)...thought I might get sick but it was gone in five...tummy felt uncomfy a few times but geez it is dull hardly worth noting if this stuff works. My legs feel a different kind of tingly tonight...much more prickly than the funky numbness of ms...but again...Nothing user with even thinking about turning back on.

I did see a post where someone mentioned the cancer in rats as a concern...I definitely wonder what that's all about. I don't want stomach cancer in two years...so I'm going to watch out for that for sure to see if I hear anything else on it. It's worth paying attention to although the drug companies have no idea or suggestion as tio what that even means....

Over and out from south beach! :-)

Tuesday, October 15, 2013

Tec with t day three

Today was awesome. Had the same breakfast regimen but need to swap foods a bit as I don't want to get allergic by eating them daily...

I'm at dinner now...Had a taco... but can feel a definite presence of pressure and achiness in my tummy...nothing severe but definitely out of the norm.

Tonight and tomorrow could be interesting...

Night 2 tec with t

Well so far so good...I'm hanging in there...knowing God is with me helps.  No matter where this goes next....

Keep thinking about the positive anti oxidants killing of my free radicals...

Keep thinking how I hope I figure out how to take this pill in a way others can repeat if it really works for us...

I don't miss the shot...well maybe a little. I was used to the routine. My mom's friend said she has so much scar tissue from 15 years on her copaxone...that sounds tough...that said...she's almost 60 and doing well with her ms...she should keep going for sure.  We have to use whatever works for sure...and our ms is all very different...very us...

Tomorrow I'll list my vitamins...in case those are helping...

Vitamin d with potassium
B12 with intrinsic factor
Mega minerals
A major probiotic

My stomach (not belly) just made a horrific noise...sounded grumbly...powerfully grumbly...

Not excited about that...

Thank you God for being with me...

Monday, October 14, 2013

T with Tecfidera Day 2

Well...day one was pretty easy. Felt tired it seemed but I haven't slept well the night before...so that could be just normal.

Day 2 I went with the one piece of sausage with a small hash brown, Dr pepper and 2 smallbites of a gluten free cupcake.  Trying to get a bad in with the gluten free thing is trickier.  It's a ton of food and I don't like eating it all.  I feel incredibly stuffed.  I also took the coated Bayer aspirin at the start off my mall giving it 20 to 30 to kick in before the meds. 

Definitely praying for God to give me strength as I go. He went to a cross...so I can get through this...with Him...don't want to say I expect God will make this not painful...just that He will be with me.

Planning to try the gym at lunch. I already have more pounds than I care to discuss. Lol. I'd like to not add more with this horrific diet to endure the pills. Although some might call it a dream diet. High caloric. High fat. I read suggestions on the internet from those taking it. What didn't work for those was oatmeal...peanut butter on toast...some of the simple yummy breakfast items.

We will see...

Sunday, October 13, 2013

Second pill done...no side effects yet

Took the second pill about 2 hours ago. Sticking with the whole "eat high caloric fatty stuff from all good groups." Had gluten free pei wei spicy chicken (small portion) with rice noodles and gluten free soy sauce.  Added one tiny gluten free cupcake. No soda...just water...two large cups. I did take my probiitics about an hour before dinner and my Bayer aspirin after I started dinner. I'm definitely praying before I take my meds for God to give me strength...as I know He is with me...and we will walk through it together.

8 hours and counting

Well do far so good on the tec. I have eaten off and on through the day. Just a small crispy beef taco...a little gluten free 97% fat free beef jerky...drank a little dp...and ate a tiny Hershey Halloween chocolate bar. I feel a bit of a chill in my nerves but nothing bad. Lots of prayers for me and by me that I get through this and it works. I like the thought of activating my antioxidants...understand its not a perfect plan but seems logical...

Tecfidera day 1 dose 1

Saturday was a crazy day. I had myself so scared to take this medicine. I didn't want to feel all the horrific stomach side effects. I read so much...but then I just couldn't take the craziness. I decided I need to give it a go and just see how it effects me. There's just no way to know. So I prayed...and find myself rising at 8:45 running to braums for a piece of sausage...some eggs...a dr. Pepper and hash browns...felt like a ton of food. Squished out the grease from the sausage with a napkin...ate it driving home...and had the rest when I returned. Had a few bits of toasted gluten free rice bread with a little strawberry. Yum. Not. Lol. Took my coated Bayer aspirin...and went back upstairs. Crawled in bed and just sat there with my cute lil hubby. He's so supportive. Ran down the stairs when he heard me leaving to see what he needed to do to help. Love him dearly. :-)

Twenty minutes had gone by from eating...and I decided it was time to take the tecfidera.  I opened three new low dose starter bottle...opened it...held the pill and prayed over it and me with my sweetie.  Few seconds later...Down it went with a good bit of water. Laying here now waiting to see what comes next.

Saddle up the horses...here we go...