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Monthly Archives: February 2012

The world is coming to an end….

…because I just signed up for a 5K marathon.

I’m not a runner. Never have been. Never will be. I do no exercise. I am carrying around way too much weight.

Why did I sign up? Hmmm, well I feel I need to do something out of my comfort zone. I also need to get healthy in some aspect of my life. Maybe this will be the kick in the ass I need.

My hubby and my daughter will also be participating so I won’t be alone. My plan is that my daughter will go ‘train’ for this for the next six weeks. She is super healthy and fit and, well, I’m not. She does great with encouragement and I think I’ll be okay with feeling like a total blob trying to run with her next to me. (I’m just a tad bit self-conscious, can you tell? *smile*)

I wonder how all my MS stuff will impact my training. I wonder how much of my aches & pains can actually go away if I can get any of this weight off and a tiny bit fit. Maybe this whole marathon thing will push me to make other changes in my life and hey, maybe the training will decrease some of the constant stress. Then I may actually stop eating the way I do.

Wish me luck because I’m definitely going to need it.

Updated:  I have not been training for this at all. Two weeks gone and no progress towards being able to walk the darn marathon let alone run it!  Yeah, this is not going to happen.  I just know it.  It was a good thought at the time but really it was totally beyond what was going to happen.   The only excuse is that I’m depressed about so many things that I just don’t want to do crap if I don’t have to.  This is something I don’t have to do.  No one else is counting on me.  So I’m basically saying screw it.  On top of all that, the past 3 weeks my left foot has some stupid pain in it that I think is another neuroma (I’ve already had 3 surgeries for neuromas in that foot) or maybe I have some type of fracture.  I have no idea because I haven’t made time to go to the doctor.  Ugh.  You have no idea how hard it is to be stuck in a depression for months and month where you just want to become invisible and hide…..but you can’t.   You can’t just run away because there are too many responsibilities.

 
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Posted by on February 28, 2012 in Multiple Sclerosis

 

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Oh Bother!

I haven’t really had much to write about so I’ve been kind of quiet with posts. Sometimes I just can’t even figure out what to write about. This all must be extremely boring to read actually. Who really wants to hear about all the crap going on in my life with this MS? Sometimes I just feel like I’m a whiner or something. *smile* Well maybe I am! This is the only place I can whine. I hate whining to people in person. So, I do it here.

Here comes the whining….

I am now on the .50 dosage of the medication. The first one at this level I shot in to my upper arm area. This was the first time that I had muscle ache/pain lasting for about 48 hours. Certain movements of my arm were very uncomfortable. But I did survive it.

The last several days I’ve had all the muscle weakness pain crap going on. It feels like I was in a bad accident with the type of soreness this is. Today my upper back/neck is messed up even worse with sharp pains. I have limited range of turning my head either direction and it is stiffening up even more as the hours tick by. *sigh* The sucky part of this muscle crap is that I take Flexiril every night before bed. The nights I have the Betaseron shot I take two instead of just one. You would think that taking a muscle relaxant like this I wouldn’t have any pain when I wake up. NOT! On top of that my eyes are killing me and my vision was blurry today when I was driving. That’s always fun especially with the monsoon winds that seemed to be occurring at 5AM this morning.

I decided to give up pop (soda) for Lent and so far I haven’t slipped up! (amazing for me. ha) I have been drinking more water and slowly also trying to kill my tea addiction. I also decided to not eat any candy and to try to avoid high-fructose corn syrup (article about issues with HFCS). I’m trying to give up the other desserts & sweets too but so far that has been a complete losing streak.

I started taking Evening Primrose Oil capsules (1300mg) and Bee Pollen (500mg right now but will probably up to 1000 in about a week). I’m also going to start B12 supplements.

It seems I have just two side effects that I can figure out that is related to the Betaseron at this point. The first one is insomnia. The Flexiril helps with this though (as long as I haven’t run out like I did this past weekend. grrrr). The other is really really bad acid reflux to the point that it is also very painful as the food passes down my esophagus. It’s not the swallowing that hurts but I can actually feel the food pass down my esophagus about mid-throat. This hurts really bad some days. Of course, I would get a side effect that is rarely known with Betaseron but according to my neuro this is one. Go figure!

Today is one of those days I wish I was just curled up in my bed because everything hurts.

 
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Posted by on February 24, 2012 in Multiple Sclerosis

 

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It burns baby, burns!

Oh, Betaseron, I do believe you are giving me major, horrible, nasty acid reflux. Now, it doesn’t say on your side effects that you can cause this BUT I haven’t experienced it before starting you and now I have it ALL THE TIME! Non-stop. I’m going to have to start carrying around Tums wherever I go because I’ve been suffering all day due to the lack of said item.

I also do believe you are screwing up my thyroid. Now, I’ve been on thyroid medication since my early 20s and I’ve always had to have my Synthroid dosage adjusted up or down then back up or down about every 6 months. Nothing stable with my thyroid I’m tellin ya!. But, now I do believe you are behind some of the other ‘things‘ that have started happening regularly since starting good ole beta (shortened for Betaseron if you didn’t know. *giggle*).

I’ve got a call in to my neuro about these things. It’s not that I can’t live with these but I’d like to know if I have to go get more blood tests and have my other meds adjusted. Who to call I ask myself? My primary dr? (Boo hiss!) Or my neuro dr that seems to know everything (and I like her)? Hmm, I choose neuro dr!!!

La tee da tee dah de dummm. I’m patiently waiting for a call back.

 
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Posted by on February 17, 2012 in Multiple Sclerosis

 

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And It Hits……

Today I’m down in the dumps. I’m sad and depressed and not liking myself at all. Oh woe is me pity party please. (ha ha). But seriously, I just am not liking myself. I’ve been so stressed out for well over a year (more like two years or 3, 4, 5, 6, 7, 8, 9, 10 and you get the idea). I try to show a brave face and let things just slide off my back. But, I’m not doing very well. All you have to do is look at me. I’ve been eating non-stop (that seems to be what I gravitate towards. It is my bad habit. I don’t drink or do drugs. I eat.) and I’ve gained so much weight. I know this and I know I really should do something about it and I feel miserable and hate myself all the time. Add all that on top of dealing with this diagnosis and how it affects me just really really sucks. I don’t reach out to anyone for support because that is not my style. I’m not a person that honestly even wants any type of sympathy because I will not ever feel like it was given with anything other than pity. I also don’t trust anymore. I don’t trust people. An old dog can learn new tricks and they are learned by the experiences that shape that old dog. What did I learn? Not to trust. I have walls miles thick around me. They were built to protect myself. *sigh*

So today is just one of those days I feel down. I want to change who I am but I am the person I’m meant to be in this world at this time. I strive for that day when I am the person I dream of instead. I don’t want this dream just because other people want me to or expects me to. (In fact I get really pissed and annoyed if others mention something I should be doing.) I don’t want to do it for anyone other than myself. Some day something will click inside me and I will finally turn that corner to making my dream me into reality. I just hope it comes sooner than later because this phase of my life has lasted way too long. Decades in fact. It’s annoying and getting very old. The drudgery of it. Ugh it is so sickening.

I write this blog post just to vent and let it out in some manner and some way. I can’t, won’t and will never speak it out loud to another soul. This is my voice.

Tomorrow will be a better day. Or even maybe in another minute, hour, couple of hours I will not be so down in the dumps. But, hey, we all have these moments. It is part of life.

 
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Posted by on February 16, 2012 in Life

 

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Water to the Rescue?

I became intrigued immediately by JuicingMyMS‘s blog post about water.

Water. Yep, water.

I know I should be drinking water. Up until this past September, water and tea were the only things I drank. But then Cancun happened. A vacation in sunny, HOT, Cancun. Did you know they have Coca-Cola there that is how they used to make it BEFORE there was high-fructose corn syrup? I didn’t but I found out and let me tell you IT IS AWESOME!!!! The flavor rocks!! So anyway, I came back with an addiction to pop (soda or whatever you call it). I’ve been drinking it ever sense.

What happened to the water? Well, I turned a cold shoulder to it as if it were in the same category now as an ex. To be totally forgotten! Was I too harsh? Um, yea, I do believe so.

I forgot that water is my friend. Without it, I get the dreaded Elephant Skin. I’m sure there are many things I feel physically that can be attributed to the lack of drinking water. AND, I know for a fact that drinking pop makes me act like a mad woman flipping out at the drop of a hat with no reason. (It’s not like I was poked with a stick or something. ha).

Since I’m a bookie ( a person that loves to read not the ‘other‘ type of bookie), I ordered three books about the miracle of water. Maybe water is the miracle I’ve been looking for on so many levels. It could be (or not)! But I don’t think it will hurt me. Pop is probably (definitely) hurting my body.

After ordering the books I promptly filled my 64oz mega water jug and have been sipping on it ever since. (I did have a coca-cola at 5:00am this morning though but I hadn’t been persuaded about the goodness of water yet from JuicingMyMs so I’m cutting myself slack on this one.) I’m going to strive to drink only water and tea (decaffeinated or herbal) from this point on. This is a babystep for me to try to fix my eating and start taking better care of myself. It seems more important to me now with this MS crap.

 
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Posted by on February 16, 2012 in Random Rant

 

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Heat Wave

I love the summer months and the heat. I prefer hot weather over cold weather (winter sucks! ((I’m not a fan)) ). I’ve loved growing up in central Illinois in the heat and humidity of summertime. The heat never really bothered me. Well, that seems to have changed.

Okay, so I thought that my intolerance to heat was from surgery back in 2006 where I was completely neutered (ha ha ha – TMI for the men reading this post). I had the full surgery back then because of massive migraines that were like death. The surgery was a success in that those particular types of headaches went away almost magically.

I was chalking up my intolerance to heat due to hot flashes, but now I’m thinking I have been wrong on that. I might have had a few episodes directly related but I now think that it is just another MS symptom. My hands can be cold to the touch, but they will feel hot to me and will be bright red (like a lobster) from the wrist down for no reason at all. (Same with my feet but more so the hands) I can sit up in bed watching TV and as soon as I lie flat on my back to go to sleep, I get a rush of heat. It only lasts about 1-2 minutes thank goodness. I went to Cancun last fall and had a horrible, horrible time because of the heat. I have gone on longer walks (think hiking) and almost immediately my extremities swell up and are super hot. It becomes unbearable. I get lightheaded and just want to sit and get out of the sun.

I have no idea if this is the same symptoms as others with MS. I just feel like mine is probably related since I’ve noticed more and more my inability to just stay out in the heat.

I guess I can say I have an intolerance for cold too. Ever since the late 80’s, I have had cold feet and hands to the point that they go numb and all the coloring goes out. Yep, I was diagnosed with Raynaud’s back then. Now I see info on the web that Raynaud’s could just have been caused by MS (other other diseases).

It’s frustrating to think I’ve had this disease for many, many years and it took this long to finally have it discovered.

I have just one thing to say to all those people from my past that might have thought I was faking symptoms or being a woosie, “I WASN’T FAKING AND I’M NOT NOW!”

 
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Posted by on February 15, 2012 in Multiple Sclerosis

 

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If Only I Knew…

I have a sister with MS.  She is 4 years older than I am.  She was diagnosed about 7 years ago (I want o say(although I could be wrong on this). After hearing news like this our whole family was shocked and just couldn’t believe it. Something inside of me said to bring this up to my primary doctor.

So off I go for the yearly exam just to check on whatever may be falling apart or not. I mentioned there was now a diagnosis of MS in the family and asked (hinted) about any testing that I could undergo to check me for MS. My primary just blew it off and said not to worry about it. I think he gave me the ‘MS isn’t inherited’ blurb. Well, I’m not very aggressive with certain things in my life and medical things are one of those sit back and let them tell me because I am not a doctor moment. I will ask a question but I won’t really get a firm response (or one that they have exhausted all options to make me feel secure in the knowledge). Even though I just let it go at the time, it was always a little nagging feeling I had.

Seven years later (or so) I am now diagnosed with MS. She and I do not share the same symptoms so that is different. But what are the chances that two siblings get this disease? It seems more than just a random occurrence to me. I want to shout at the top of my lungs for the rest of my sisters (I have 3 others) to go get an MRI….just to make sure. If there are no white spots on that MRI, then I would be the happiest person. But if there are, then I want them to get help sooner rather than later.

I haven’t asked my neuro doc yet about how long she thinks I have had this disease. I bet I have had it for twenty years of more (I’m 46 now). I’ve had symptoms throughout my life that have been diagnosed with one thing, or another, and another, and another. Some of those symptoms were/are eerily similar to those I have right this second with the MS diagnosis.

I’m amazed that I know more and more people diagnosed with MS. It seems way more prevalent than the figures out there. The one single nurse I had for the injection training goes out 3-4 times a week to train a new person. That is just ONE nurse in one tiny location of the country & world. It is only one nurse for a specific type of MS drug. This really shocks me.

 
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Posted by on February 14, 2012 in Multiple Sclerosis

 

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