Sunday, April 4, 2010

Updates & Sore Throat

Again, I promise to stay active and write, but I don't follow through.  Sometimes I am just too lazy, but mostly just too tired.  I have so many great things going on in my life that I try to push the fibro aside like it doesn't exist.  I mostly hope that if I keep ignoring it, maybe it won't be there.  Mind over matter, right?

If only it would work that way.  I sit here with a pounding sore throat that started yesterday morning.  I woke up Saturday with a sore throat that is usually to be a warning sign to slow down.  We are getting ready to move into the new house (25 days) and we are shopping for furniture and appliances non-stop.  I felt ok Friday night so we met friends for dinner and then shopped and got up Saturday to go shopping again.  How can my throat hurt when I am doing things I love to do?!?  Shop!

I have friends that are going through rough patches and my problems seem trivial.  It's strange when you know that something is not a big deal in comparison to other people's problems, yet it is so large that it stops you in your tracks almost daily.  Why is this happening?  It must be something more!

To those of you who have never felt the pain, you can't imagine how someone could feel so bad.  And then if you feel it, you can't help but wonder if it is going to kill you.  The pain sometimes is so strong that you think your body will just have enough and shut down.

At the same time, I find myself frustrated by friends that are always sick with common colds, etc.  They cancel plans at the last minute because they have a headache or something minor.  If I cancelled plans each time I felt bad, I would hardly get out of the house.  I am not better than anyone, I have just learned to live with a certain amount of discomfort.  I have also learned to push through and not want much attention so I play it off mildly. I don't talk about it a lot.  I do tell friends when I feel a flare coming on or so forth, but I don't expand much on how I feel.  It would be too depressing and I doubt anyone would understand it anyway.

Oh well, another sob story I guess.  Sorry I don't write more, again I promise.

On another note, I am waiting for biopsy results from a mole removed on my back.  Testing for melanoma.  Doubt I have that, but the Dr. found some suspicious moles.  Then again, I think maybe none of this is fibro...maybe its something real.

Wednesday, December 16, 2009

I'm Back

It's been awhile since I have written here.  I was struggling with overwhelming feelings in my last post.  Most of the time I try to remain upbeat and thankful that I do not have a life threatening illness.  But, like everyone, I have moments when it all feels like its too much to handle.  So, I stopped writing for a bit.

I have continued my chiropractic therapy and I now only go once a week.  I do believe with all my heart that it is helping me.  I am not *pain free* so to speak, but my pain tolerance has improved.  I also saw my rheumatolgist a few weeks ago and we talked a bit about my pain and energy levels.  I told her that my energy was still low and she doubled my dose of Effexor.  I don't have depression, just fatigue.  She also told me something I didn't know.  She said I should be taking my muscle relaxers every night.  I was only taking them every once in awhile and she said they don't really work that way.  In order for them to be effective, I need to take them every night.  Since doing that, my pain tolerance is a bit better.  Maybe its b/c I am sleeping much more solid on the pain killers.  The only downside is that I need to take them early so they don't affect me in the mornings.  So, I try to take them anywhere between 6-7pm.  I am usually asleep by 9ish.  From a health standpoint, that is awesome!  But, it isn't great for my relationship with my husband.  I am asleep and he is alone watching tv.  It really stinks, but I need that sleep to function.  So, very little alone time right now.  But, I have come to learn that things constantly change.  This current sleep pattern won't last forever, but its working now.  Eventually, I hope to get off medication some day!
Oh- and good news!  I was promoted at work and we also are buying a new house.  It's going to be a new build and has lots of storage space.  This means so much as I feel like I can't stuff anymore in this house!  I don't mean big stuff, I mean like bookbags and bike helmets!  Stuff kids use!  It won't be ready until April of next year, but I hope to get through the holidays stress free!

That's all for now!

Friday, October 30, 2009

My House Is a Mess & So Am I

I am overwhelmed this morning, that is putting it nicely.  I started to feel very sore last night and I tried to fight it off.  When I got home from work, my daughter began crying that I could not attend her school Halloween party.  My son (3) doesn't care about this kind of stuff as much as my 5 year old little girl.  She is a full blown mommy's girl and she can't seem to get enough of me.  I love her so dearly and I am glad that we are so close.  I feel terrible that I can't attend the party, but I am almost out of vacation days and I am trying to save some for the holidays.  This is so difficult for a 5 year old to understand.

I won't say I feel guilty, that is not the appropriate emotion.  Sad, I guess.  Sad that I can't do all that everyone wants me to do.  So, this kicked off our evening last night and then we went to gymnastics.  Tears were abundant with my daughter because by Thursday, she is generally tired too. 

I went to bed as soon as the kids did.  My husband seemed annoyed with me, but he says he wasn't.  He is pretty supportive, but I know he doesn't understand that my body was beginning to ache.  I hate to constantly say that I am not feeling well because it is so frequent it loses its meaning.

This morning, not off to a good start.  Tears again over the Halloween party.  I am trying to teach Mercedes (her name) to find the positive even when things don't go her way.  At least I will be with her on the true Halloween.  At least I will take her trick-or-treating.  I think it is getting through to her, but so hard when she is so upset about these type of things.  If you don't have kids, you might not understand how important this sort of thing is to them.  To a child, it is a big deal.  This is their type of stress.  So if I told her this wasn't a big deal, I would completely invalidate her feelings. 

But, in the grand scheme of life, I know it isn't a big deal.  It is not the sort of thing that will have long term consequences.  I go to many school functions, but I have to choose which ones are most important.  And, my husband is going to the Halloween party/parade and will take some pictures and video for me.  We do our best.  Sometimes I do wonder if she would want to be with me so much if I stayed home and wasn't a working mother.  Many kids probably take their parents for granted, I know that my daughter appreciates it when I ditch work for a day to be with her.  Sad, I know.  Not exactly a lesson I planned on having her learn so young.

I can't stay home.  It's not an option.  It's not a choice.  I make very good money and I am the provider for the family.  My husband does well, but we live off my income.  He jumbles his work around the kids schedules.  It's a reversed situation and not one that either of us want.  The cards fell that way and I have done well in my career.  If we could flip it, we both would in a heartbeat.

I forgot my cell phone again.  My husband tried calling me this morning and I wasn't available.  He was mad and left a nasty voicemail on my work phone.  I don't know what to say.  I forgot it...yes- AGAIN.  I can't seem to remember it a lot.  It's not on purpose, but I can't say I make an effort either.  I have so many things going through my mind each morning, it's not at the top of my list.

Is it Fibro-Fog?  How much can be blamed on fibro?  I think he would completely disregard me if I said it was from fibro.  In fact, unless he has read up on fibro, I haven't told him about the fog part.  I am just trying to get him to understand the aches and the fatigue- which is more than enough for him right now.

Sometimes I still doubt myself.  Maybe I am just lazy.  Maybe I just don't feel like cleaning after the kids go to bed and it's easier to just lay down. 

I can't seem to get it together, no matter how hard I try.  I can't seem to keep the house clean and our life organized.  I am so frustrated with myself.  Why can't I remember to take a stupid cell phone with me everyday?  What if there really was a true emergency?  What the hell is wrong with me?

I need a day to sleep.  I need some time alone - quiet.  I need a day to clean my house.  I need my shoulders to stop burning and aching.  I need my arms to stop being so sore.  I need some energy.  Energy.  Energy.  Energy.  Why can't I just have a little energy?

There is no end in sight- as far as time to recover and rejuvenate.  After work, I have a chiropractor appt. and then dinner, then carving pumpkins, prepare goody bags for friends.  Then cleaning that mess, go to bed, get up- mad rush to swimming lessons in the morning.  Deliver goody bags, make something to bring to dinner at a friend's house, go there and trick or treat. 

My house is a mess.

Thursday, October 29, 2009

Healthcare Debate

Well, I am not feeling well this morning.  I am slightly achy, but not too bad.  However, my stomach is a bit sour and I just have an overall feeling of unwell.  It is dark and rainy outside and I would love to just go back home and go to sleep.  I will keep chugging along and see if I feel any better.

So much debate is happening in the U.S. now about universal healthcare.  I will admit, I don't understand it all.  In fact, I don't understand a lot of it.  I hear many sides and feel like each side is leaving out small truths.  I do not believe that people have a right to healthcare.  However, I don't think it is a privilege either.  I do believe that as human beings, we have an obligation to take care of people that cannot take care of themselves.  No one should die because they have an illness that can be treated.  First and foremost in my mind is children.  As a society, we have a moral obligation to ensure the health and well being of our children. 

With all that said, no one in this world should die of starvation either.  But, people do.  I don't know what the solutions are, so I am not going to even try.

I will state what my fears about healthcare changes are...my biggest concern is not being able to see my doctor when I want to see my doctor.  Advocates for healthcare reform say this will not happen.  I would love to hear from people living in countries with social healthcare.  Is it true?  What are the benefits?  What are the downsides/challenges?

If I needed to see my Doctor, I fear that I would be at the bottom of the list.  After all, it is just fibromyalgia- right?  Its not that important, right?

On the flip side, if someone has fibromyalgia and is living with this awful disease and does not have insurance, how do they cope?  I would hope they would have the same opportunities as those with insurance.

I work full time.  I am extremely lucky that my condition has not completely dibilitated me.  But, there is no guarantee of work.  No one can ever predict the direction of their health and it can turn on a dime.  What if I couldn't work?  I wouldn't have health insurance.  But, I do believe my husband would take a job - maybe one he didn't like - if it offered insurance.  Right now he doesn't need to because my insurance covers the family.

I once knew someone though, that did not have health insurance.  She didn't work because she wanted to be home with her children.  How I wish I could be home with my children, I have worked throughout my pregnancies and went back at 12 weeks after birth.  Anyway, she said her husband didn't work because he didn't like the job offers he was given.  This is the kind of story that bothers me.  First, there were 2 able bodied adults that had the ability to work.  They were choosing not to work.  Why should I be paying for their healthcare?

Then there are people out there that truly cannot work for one reason or another.  Maybe they are single mothers or widowers, etc...those are the people that need help.  Those are the people that I feel I have a moral obligation to help.  Where is the balance and how do you stop people from abusing the system?

I would like to see a healthcare plan that can be tested.  It's the project manager in me, but let's try something on a small scale.  Roll it out to a couple of states and see how it can be improved before turning the entire system upside down.

One solution I see - we need more Doctors.  There are not enough of them.  I know people that were diagnosed with cancer and unable to see the referred oncologist for 6 weeks. If you had cancer, would you want to wait 6 weeks to see a specialist?  And, this person had insurance!

And, we need good Doctors.  Smart ones.  I don't care how much money they make if they are good. 

I think Obama is on to something about education in this country.  Kids need to be in school more and focus more on the sciences.  Simply put, we need good doctors.

I would love to hear any comments about this.  As I said earlier, I don't know a lot about the healthcare situation and I haven't been swayed one way or another...yet!

Wednesday, October 28, 2009

Itchy

I am very itchy tonight.  It's driving me nuts!  I take Zyrtec every night at about this time.  I guess its the 24 hour pill wearing off.  But, tonight it is on the palm of my hands and soles of my feet too.  It usually doesn't get that bad unless I skip a Zyrtec, then the itchiness becomes unbearable. 

I had a histamine urine test done by my hematologist last year.  I suffered through many days without taking Zyrtec and when the test came back, it showed no histamine in my system.  So strange!  Why then does my body itch all the time and calm down when I take an anti-histamine?

I have been itchy for many, many years.  I have very fair, Irish skin.  I burn easily, breakout easily, and have super sensitive skin.  So, being itchy is sort of my normal.  It's been this way for so long, I hardly ever remember not being itchy.  But, it doesn't make it any more bearable. 

I am trying to think of any new foods I might have had today, anything that could trigger the itchiness.  Nothing new.  My Dr. said that I might be allergic to an additive or something that is impossible to trace.  Another "we don't know what is causing it or how to fix it" answer. 

What do you say?

My 5 year old said "What is fibro?".  I think she is confusing it with fiber!  I didn't get a chance to answer her because she siad she was confused and couldn't think of the right word.  So, that buys me a little time to think about how I want to explain it to her.  I feel so grateful that I am explaining something that while unpleasant, isn't life threatening or scarey.  I feel so much pain for mothers who might have to explain something more serious to a child...such as a terminal illness.  I also don't want my daughter to dwell on it and so I am considering never saying the word "Fibro" in front of her again.  I think that it might become the forbidden word.

While at the chiropractor today, I was given some new exercises to do as part of my therapy.  I do them there at the office and while I was doing them, another women was there with me.  She asked me if I had suffered from a back injury.  I said "No" but felt the need to explain.  But, it was a wierd feeling.  I have never told a stranger that I have fibromyalgia.  I blurted it out, quickly.  She gasped and said "That's terrible!!!".  I didn't know what to say.  Yeah- it is terrible.  Yeah - I hate that I have it.  But, it could be a lot worse.  She then said that a friend of hers had it and all I could think to say was "Yeah, it isn't fun".  I wish I would have told her to offer her friend support, I am sure she needs it.  We all do.

Then I had to tell my Chiropractor that I was in pain from the "bad" Dr. last week.  I told her that the last adjustment hurt and that I did really like the Dr., but it was too rough and painful.  I told her that I knew it was "just me and because of the fibro."  I wish I didn't have to explain.  How can you even describe it to someone?  No wonder the Doctors took so long to diagnose me, I was unable to put it into words.

My flu shot is still sore and a red circle surrounds it, about the size of a silver dollar.  I think its normal though, for someone with such sensitive skin. 

Tuesday, October 27, 2009

Blogs

I found some more blogs on the internet and posted them on the page.  If someone doesn't want their blog posted here, please let me know!  I am trying to read about other people's experiences, I find it comforting that other people feel as miserable as me!  LOL - JUST KIDDING

No, but reading about the way other people feel helps me to know that what I am feeling is real.  Others feel it too.  And, I think we can all learn from each other about what works and what doesn't.