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Sleepy Time

I don’t know about you, but the last week and a half I have been soooooooo tired.  It usually hits me about 1pm or so and gets worse and worse throughout the day.  Like right now……  I could seriously just lay my head down and fall asleep.  But, I can’t.  I have things to do of course.  Life!  Jeez, it gets in the way all the time.  My allergies are also in full swing and I keep forgetting to buy more allergy medicine.  I think not taking it is actually leading to the fatigue I’m feeling.    Who knows really?!   Having a multiple of mystery symptom diseases I could just blame it on a handful of those and just be done with it.  Excuses I have aplenty.

Speaking of excuses, I really do have a lot when it comes to myself.  Me, myself, and I.  I find it extremely hard to focus on myself and fixing things that are broken with me.  I focus all my attention on my daughter and I can’t seem to stop.  I love her and I spoil her.  That’s just how it is.  I’ve piled myself (and her) with activities almost every single day.  It’s pretty draining and obviously is not keeping stress reduced for me.  I’m driving her all over the place for different things.  Why do I do it?  Because I want to give her every opportunity to excel and enjoy her life.  I don’t want her ever to have regrets because she didn’t get to do something or learn something while she was growing up.  She’s spoiled….truly.  But she’s not a brat and that makes me super proud.  She’s a GOOD kid.  A very good kid and I’m totally proud of her.  She’s also my best friend and has been since she was born.  She’s my life and she’s my heart.

Obviously you can see where all my attention goes.  Not much room for anything or anyone else.  I forget that maybe I need to put some of that attention (maybe a lot actually) on myself because I deserve it too.  I deserve to love the person I am…..but I don’t.  Everyday I pray that I will start fixing the broken things about myself.  Everyday I go to sleep kicking myself for another failed day when it comes to those things I swore I would fix.  Everyday I live with such negativity about me.  *sigh*

All I can do though is to try every day to make a change….even a small change….and make it became a new reality for myself.  Small things can add up to huge changes they say.

 

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Posted by on September 19, 2012 in Life, Random Rant

 

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All Things Me

Good things:

  1. My daughter is home from spending the summer with her dad
  2. School started yesterday and my kiddo exclaimed it was great and she loves her teachers.  (whew)
  3. I have energy to do things

Annoying things:

  1. If I try to walk around (shopping), I inevitably will continue to do it way past the point I should have stopped.  I swear I thought both my feet were broken during school shopping.  It was to the point I had to take baby steps and walk very slowly.  It was, well, horrible.  It’s not only the feet but also travels up my legs and in to my hips.  I get really stiff.  It was the first time that I thought it would be great to have a cane at that time.  (That is something I really don’t want to have but if I ever have to I’m getting a cool one with lots of color and some cool abstract design.  I’d also look for lots of bling on it!)
  2. I’ve choked 3 times in the past week while drinking water.  I’ve also spilt it down the front of me.
  3. I’ve had some slight tremors in my hands and also have some dexterity issues in them also.  It doesn’t happen constantly though so that’s good news.
  4. One day I was experiencing vertigo & exhaustion in the morning.  I contemplated going home from work but battled through it since it only lasted a couple of hours.
  5. Stairs in the morning = Good.  Stairs in the evening = Bad.  Half of the nights I won’t travel up the stairs to tell my daughter goodnight.  We have to say the goodnights on the main level of the house.
  6. I was stressing myself out by trying to meet a deadline for some sewing I do.  You see I like to make fleece hats and was thinking I would have a booth at a local celebration to sell them.  So I was really pushing myself.  There was one problem after another.  Lots of ripping out.  And then the big thing that clenched it….my sewing machine broke.  Well, I went out and bought a new one as I was still determined.  I get it home, set it up, and can’t get the thing to function correctly. (I also didn’t want to read the instructions).  At that point, I knew that fate was definitely telling me something.  So, I cancelled my registration to sell and now all the fleece is in piles in my dining room.  The one thing I noticed though was that my stress levels went down.  So, this is a good thing after all I imagine.  (I just have wayyyyyy too much fleece now.  I mean it’s seriously like a fabric store.)
  7. Went to the thyroid doctor this morning and my levels are off.  So, another reduction in the medication.  Oh, but then she tells me my thyroid is slightly enlarged and was asking me if there was any thyroid cancer in the family.  *sigh*  So, in a few days I go have an ultrasound on it.
 
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Posted by on August 22, 2012 in Life, Multiple Sclerosis, Thyroid

 

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Like a Wet Noodle

Relaxed to the point of my legs feeling like a noodle…..

Floppy…

Heavenly…..

Those are words that describe how I felt after a Hydra-Massage yesterday.  AWESOME!

Let’s back up a step.  Earlier this week I went and signed up at a fitness club.  (I would say which one but I don’t want anyone that knows me that reads this blog to come stalk me there or anything.  I’m trying to be incognito while I’m fat. lol!  But, I think I’ll probably out myself on this within the next few sentences anyway.  So anyone that knows me PLEASE don’t come looking for me.  lol  )  The place is cool and there is a membership level that allows you to get all sorts of other stuff on top of just using the fitness equipment.  Of course, all these ‘things’ are really what is like icing on a cake for me!

I finally went yesterday for the first time to work-out.  The first couple of times going anywhere new for me is really stressful and anxiety riddled.  I did it though!  I went!  I walked on the treadmill for awhile and started sweating so I know it did some good…briefly.  Once I was done with the set time on the torture device  treadmill, I thought I might as well check out the hydra-massage thing if it was available.  Lucky me, it was available!!!

I was clueless how to work it but they were very helpful with what to do.  I laid done on it and went to a happy place immediately. It’s awesome!!!  You have all the control at your fingertips for the strength of the massage, the location and the speed.  It was 10 minutes of wonderfulness!!!!  With this MS stuff my body is always having some type of pain.  (I typically do not pay any attention to it anymore since it is not nearly as intense now that I’m off the medication.) This machine did wonders for relaxing my body.  When the session was done, I felt so very relaxed.

I actually left for home right after once I did the whole locker-room thing.  I’ve learned that I really should wait awhile before driving home.  I was just a bit too relaxed and kind of spacey for driving although I made it successfully home with no mishaps.  😀

I’ve decided that all the extras, with my membership, are actually like treats or ‘way to go’s’ for working out. In addition to the hydra-massage there is tanning and light-therapy.  AWESOME again!  To me these extras are all free, free, free and so, so, so worth it!!!!

 
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Posted by on July 27, 2012 in Life, Multiple Sclerosis

 

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Happy Dance!

I am officially OFF Betaseron!!  HAPPY DANCE..woot, woot…Happy, Happy!!!

I just returned from my neuro appt and she has permanently taken me off Betaseron and put in my records that I am allergic to it in a bad way.  She said I was the top patient of hers with the most adverse side effects.  In fact she thinks I’m special!  HA HA HA  (yes, I am in many ways).

I went in determined to say what I wanted to say about medications.  Guess what?  She agrees that for now I don’t need to be on any medication but I will be monitored.  She kept driving that home that I need to be monitored and if my MS starts showing up that we would talk about getting on a different medication.  I’m okay with that actually.  So, I go back in 3 months for a check-up, I increase my Vitamin D to 5000 a day, and an MRI in January.

I can’t wait for the following to go away again from the Betaseron still in my system:

  1. Eating everything in sight.  My appetite increases ferociously on this.
  2. Muscle fatigue and nasty pain going away
  3. Swelling in my feet and hands go back to my normal swelling
  4. Heat intolerance going back to what was normal for me before all this.
  5. ENERGY to do things
  6. Fatigue going away.  I went to bed at 7:30pm last night and that was struggling to stay awake.  Ugh!
  7. Depression going bye-bye
  8. Stress surrounding all this going away

YIPPEEE!!!!!

 

 
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Posted by on July 17, 2012 in Life, Multiple Sclerosis

 

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Moody Day

I guess the medication is starting to effect me again…even at the lowest dosage.  Today I feel pretty sad and depressed.  On top of that I am angry…very, very angry…and it all stems from feeling worthless.  I have had  problems my whole life with feeling worthy.  Situations that otherwise wouldn’t have even bothered me one iota have turned in to a feeling of utter doom.  Anyone have a clue what I’m talking about?  Anywho, I am trying to state positive intentions in my head over and over and reassure myself.

Positive thoughts. Hmmm.  That is a common phrase I’ve been hearing since being diagnosed.  “Stay positive! ” “Your attitude really plays a role.”  *sigh*  This I know.  But, you know what?  Most of the time I don’t even “think” about my MS.  I don’t wallow in fear or anger or negativity about getting this disease.  It is what it is.  I only think about it when I write this blog or I have to think about it such as when I’m at a doctor’s appointment or when someone asks me how I’m feeling.  If someone asks me, I’m probably going to tell you what you don’t want to hear and it will come across as negative.  You know why?  Because that is how I feel and I’m not going to lie to you and say I’m feeling great.   I think people expect the lies though.  I’ve dumbfounded so many people when I tell them like it is and they get a loss for words.  Or they try to relate it to something in their own life.  *sigh*   I do appreciate their concern….if I feel it is genuine that is….but I don’t react like any ‘normal’ person so you will be disappointed.

There are many other things in my life that may be causing me to be negative.  It’s not like I’m negative all the time.  Oh wait, maybe I have been since being on this medication as it is royally screwing with my body.  Everyone….everyone….has stresses in their life.  Sometimes you will feel like everything is going wrong but other times you think life is going just great.

God dishes out what we can handle.  I must be a extremely strong person.  LOL!

 

 
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Posted by on July 12, 2012 in Life, Multiple Sclerosis

 

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Stressing over Medication

The lab experiment on my body started yesterday morning (more on that here).  I started stressing about this a good 2 weeks before I had to start those damn injections again.  I’ve become bitchy, irritable, lonely, sad, and mad.  One word for this:  STRESS!

I figured I might as well read up on the other medications again for MS.  I’ve done it before but not the in-depth information found on the drug maker websites.  I decided I would start looking up Copaxone because if you look at the side effect summaries you will find that they don’t seem all that terrible compared to the other few available medications.  I am led to believe that with Copaxone I might have a runny nose, swelling at the injection site, and minor annoyances like this. Well, I wanted to see more details so I went to the PubMed Health website since it was one of the top links in the search results..  ( Oh, and try to find a nice looking comparison chart of the different choices and you have to search and search. You can’t.  That is SO annoying.  I should build one and just put it out there for my own uses because I’m tired of searching all over to find something without having to write all the crap down!  The NMSS site does a good summarization but not quite what I want but still…..)

Let me list out the side effects that I am concerned with: ‘may increase your risk of developing cancer or a serious infection’.  Hmmm, that doesn’t sound very good.  It’s amazing that even on the website they kind of hide that information in a sentence rather than in the list format for the other symptoms.  Others that are ‘uncommon’ (but for me, I always get the uncommon side effects it seems) are:  chest pain, fast heartbeat, difficulty breathing or swallowing, very severe pain in the injection site, pain in the back, neck, or any other part of the body, severe headache, vomiting, swelling of extremities, joint pain, confusion, crossed eyes, and tightness in muscles..  These are only the ones that I’m not thrilled with.  There are many others but the ones I listed make me fearful and also worried because with Betaseron some of these are the cause of why I can’t take it anymore (or think I can’t…we shall see soon).

I thought Copaxone was one of the wonder drugs because of not having many side effects.  I was fooled.

What about the other choices then?

Avonex:  Interferon beta-1a rather than the beta-1b I take now.  The big warnings:  depression & suicide, seizures, heart problems, liver problems (oh, well then this is automatically out for me because Betaseron is causing havoc with my liver enzymes), allergic reactions, blood problems, and thyroid problems (I already have that so that can’t be good either).

Extavia:  Interferon beta-1b.  Well, we have to rule that out as it is the same type of thing as Betaseron which isn’t doing well for my body.

Gilenya:  sphingosine 1-phosphate receptor modulator (whatever that is).   Higher doses have a higher risk of adverse effects, heart rate can slow down, lowers the number of lymphocytes in the blood, swelling of the macula (part of the eye), liver problems (what?  Ok then, this one is definitely out for me).  Sounds like a swell time to me.

Novantrone:  mitoxantrone.  This med (an infusion) has a black box warning by the FDA which can’t be a good thing.  Bad things for this one include cardiotoxicity, secondary acute myelogenous leukemia (AML).  Um, yuck

Rebif.  Inteferon beta-1a just like Avonex.  I’ve already ruled this one out for the same ones as Avonex.  Same side effects

Tysabri: natalizumab. Risk of a brain infection.  Okay, that is enough for me to say,’ Whoa there cowboy.  I’m not cool with that!’   Also there is increased risk of liver damage, increase risk in certain infections, and allergic reactions.

These are the choices folks.  There is not one bleepity-bleep medication out there that I would feel comfortable taking. I don’t even feel comfortable taking Betaseron and I know that for 5 straight months it really reduced my mobility and I had horrible joint/muscle pain.  And of course I had high liver enzymes so it was damaging my liver.

This is why I’m stressed out.  This is why more research and funding needs..NEEDS…to be done on this nasty ass disease.  My choices seem worse than letting the disease progress.  I’m a person that my body tends to get every freakin side effect from a drug so my odds in taking any of these – in my own eyes – looks bleak.

P.S.  I am raising money for the MS Walk 2012.  If you would like to donate (and you now know how desperately better medications and a cure are needed), you can do so at my donation page:  click here.

 
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Posted by on July 11, 2012 in Multiple Sclerosis

 

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Update-a-roni

This morning I started up on the Betaseron shots again.  My doctor is using me as a lab experiment to see if it is the medication that makes me feel like crapola.  (Why, yes, I know it is.  Let’s just go with that).  I’m on .25 dosage which is not much at all.  I hate throwing out good medicine that is still in the vial.  It seems like a waste of money but you do whatcha gotta do.  I’m totally stressing about what new medication I will be prescribed because of the whole insurance thing with what they will cover, etc (and the nasty copay I may have).

I was doing great on my diet up until about a week (plus another half but I didn’t really want to say that.  Hey that cats out of the bag now!  ((Who put the cat in a bag?))).  Today I am trying to be good and stick to the plan completely. After about 3 days all the sugar cravings (or carbs) will cease and it will become easier.  I’m not sure why I went off the plan.  I was doing great.  Oh well, one of those things I guess.   I know I definitely felt better on it and some aches actually came back when I started eating gobs of sugar again.  So, I need to remember that I experience pain when I eat bad things.  Sugar addiction / carb addiction is REAL, PEOPLE!  Nasty stuff (but tastes so yummy).

Current symptoms I’ve been having that I relate to MS:

1.  While walking to my car, all of a sudden, I get this strange sensation in my head and I start leaning forward and to the left and start walking at an angle rather than straight, which is what I was trying to do.  Luckily it lasted for about 6 steps and was over with.  My head still felt weird for a few hours though.

2.  I seem to not be lifting my right foot up high enough when getting in or out of cars.  I’ve stumbled 5 times in the past couple of weeks.

3.  My whole body jerks when about to fall asleep. I have no idea if this is MS related but a couple of nights ago it did it three times in a row.  VERY annoying.

4.  My energy is still with me since being off the meds.  I’ve been able to do so many things.  I can’t believe for 5 months I lived with feeling like crap.  It feels good to feel somewhat normal.  (Although many will tell you I’m not very normal.  *giggle*)

I’m starting to feel stressed out again or should I say anxious.  There are many reasons.  I’m pretty much in a sad state of mind and have been for a long time now.  That definitely takes a toll on me and stress in life for me.

 

 

 
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Posted by on July 10, 2012 in Life, Multiple Sclerosis

 

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