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. 

Flushot - Yoooooouch!

I got a good night's rest last night and woke up on time today.  No tyelenol pms or muscle relaxers, just good old fashioned sleep.  I don't have a problem with sleep in the way that I usually have no difficulty falling alseep or staying asleep.  But, I am a light sleeper.  I tend to hear every little noise.  I am getting better about it now that the kids are getting a little bigger, but I still hear them when they make noises during the night.  So, I know I sleep light.

But, I managed to get up on-time and get to work on-time.  I recently received a promotion and nice raise so it is important to me to get to work on-time.  It is always a struggle though.  Even when I am on-time, something usually happens to cause me to be late.  I am working on this.  A goal of mine is to be one of those people that pops up in the morning.  Is that unrealistic?  It is probably too much pressure to put on myself, but I am not a morning person or a night person!  I feel like I should at least be on one end of the spectrum!

I had a flu shot today, my arm is sore.  Nothing unusual though, most people get a sore arm.  But, man does it hurt.  A pinch my ass.  I will never tell my kids its a pinch again- it hurts!  But, I believe it is a worthy cause if it prevents me from coming down with any kind of flu.  So far, we have kept H1N1 out of the house, but it's still infecting people.  The vaccine doesn't seem available for everyone yet, so we have only gotten the regular vaccine.

I wonder if I should tell my chiropractor that I got the vaccine.  I don't think they believe in that, so I should probably keep it to myself.  I had an interesting conversation with my father-in-law last night, about fibro.  He is an orthapedic surgeon and he prints articles for me from medical journals.  It's nice and he really seems to try to find information for me.  The article highlighted what seems to work and what doesn't.  Again- aerobic exercise was at the top of the list.  Seems cruel that people with all this fatigue and soreness would feel better if they would just pick up the pace and exercise.  I wish I could do more of it, I really do.  I know it would help.  But, this fear is always in the back of my mind, fear of how I will feel later.  Will I pay a price?

I see the chiropractor again tonight, but I am starting have doubts about the effects.  I do think it helps in some way, but I am still stuck with fibro.  It's not going anywhere.  Last night I reached into my daughter's bed to get something for her and my arm pushed slightly on the wooden frame and it hurt.  So sore, a lingering pain where I was barely touched.  Today, if I rub my legs for any reason, they are very tender and sensitive.  I just don't understand.  What is the trigger?  There seems to be no rhyme or reason to this.  It's there one day and not the next.  I just wish I knew how to control it.

Monday, October 26, 2009

Headaches

It has been a very bad weekend.  On Friday afternoon, I went to the chiropractor.  As I mentioned in earlier posts, the normal Dr. I see isn't there on Friday.  So, a different Dr. did the adjustment.  It was the same Dr. that did it last week and she is just not at all understanding of a patient with fibro.  The minute she put her hands on my lower back, I felt pain.  Not just any pain, the fibro sore skin, bruised pain.  She pushed hard on my back and just kept on going.  When she got to my neck and turned it to the side, it wouldn't crack.  I felt so sore.  I left with a headache.  I will never go to this Dr. again.  I have seen her twice now and both times she has hurt me.

Just to re-iterate a previous post, if you are considering seeing a chiropractor, make sure they have experience in treating fibromyalgia.  It should not hurt.  Although I had this bad experience (that continued to cause lingering pain all weekend) I still believe there is a place for chiropractic treatment for fibro.  Overall, my quality of life has improved since I started going.  But, the Dr. I normally see is very gentle and she does not hurt me.  When I leave, I usually feel better than before I went in.  She touches my back gently and I can tell she really tries to be extra careful.  We need more of these types of chiropractors! 

So, I was in a bit of a flare all weekend with non-stop headaches.  I worked all day Friday, went straight to the bad chiropractor (lol), then headed to friend's house to meet up with my husband and kids.  I quickly ate some pizza and then started to get on their Halloween costumes.  We took them to a Halloween event at the public library and then home!  So, I left the house at 7:00am and didn't get home until around 8:30pm.  Then, by the time I got the kids to bed I was ready to collapse.

Moving on to Saturday...  My mother-in-law had a jewlery party Saturday morning at 10am.  I got up, showered, packed the kids halloween costumes, got my daughter ready for swimming lessons and headed to the jewlery party (alone).  I stayed for an hour, bought some jewlery (mostly Christmas presents- yay), and then headed over to the healthclub where my daughter was at her swimming lessons.  I got her out of the pool at 11:30am and helped her shower and get dressed.  By now we are approaching noon and my husband and I decide to take the kids to Panera bread for lunch.  My head is still pounding from the adjustment on Friday.

I took two Tyelenol and that kept the headache at bay.  After lunch, my husband left to get some work done and I took the kids to a friend's neighborhood for a Halloween parade.  The rain held off, but it was chilly.  It was also a 2 mile walk.  I had the double stroller b/c I knew my 3 year old would never go the distance.  But, this gave my 5 year old the temptation to sit too.  Walking up and down the hills pushing 75 lbs was not easy.  Plus, it was chilly and cloudy and the sun was nowhere in sight.  It was a great time for the kids though and I made it.  By the time we marched in the parade and then got back to my friend's house, it was getting close to dinner time.  The kids were hungry, so I met my husband at a restaurant for dinner.  I hate eating out so much.  But, once again, I left the house at 9:30am and was still not home in time to cook dinner.  If I were to leave and go home, start to cook, the kids would be in complete melt-down mode.  They were beyond giving a snack to hold them over.  They had goodies at the parade and they were coming down from the sugar high.  They needed dinner and they needed it fast.  I was also getting extremely tired and hungry myself.  All I could do was imagine myself snuggled in front of the fireplace under a warm blanket.  I kept telling myself that was what I was going to do when I got home.  But, I ended up going straight to bed after the kids.  It had been a long, cold day.

Sunday came too fast.  The kids were wonderful in that they let my husband and I sleep until 9:30am.  They slept until 8:30am and then played for awhile before waking us up.  We all got up and had a nice breakfast together.  My husband was so sweet, he got up and made coffee and eggs.  He takes such good care of us.

My daughter has been wanting to go to the healthclub playroom for awhile now.  We haven't been there much lately and when we do go, she is usually swimming so she doesn't get to go to the playroom.  So, after lunch, I packed up the kids and headed off to the gym.  I am so glad I did this.  I took 45 minutes to myself and just walked the track.  I am staying off the treadmills for awhile to see if I can get just as much exercise on the track.  It was great to steal some time to myself and the kids love being there in the playroom.  So, it worked out great.  A long Target shopping trip followed and once again, home at 6pm and the kids are starving.  It was cereal for dinner.

It was not the healthiest of weekends as far as eating goes, but I just can't seem to slow down.  As it was, I decided not to take the kids to the zoo yesterday, although it was a beautiful day.  A "fibro choice" - no zoo.  I knew that might in fact put me over the edge. 

So, here we are - Monday morning and I am bracing myself for another long day.  I will leave work and head straight to the in-laws for my father-in-laws birthday.  At least I won't have to worry about dinner again!  But, the house is still a mess and I didn't get anything done all weekend.

My legs are a little sore from doing lunges while walking (not sure how to spell that!).  But, they feel only sore - like anyone would feel after not using a muscle in awhile.  Sometimes when I exercise, I can hardly walk the next day.  I mean, I can walk, but limping around and pain with each step.  Today, I really think this is the kind of soreness most people would have - its not fibro!

I am still having a headache though.  I will take more tyelenol and talk to the "good" chiropractor tomorrow about this experience.  And, I just wish I could stay up a little later tonight.  I am still sleeping a lot and struggling to wake up everyday.  I wish I could be either a morning person or night person.  Right now, I am neither.

Friday, October 23, 2009

Exercise

As much as the chiropractor seems to be helping, the true test will be when I bring fitness back into my routine.  The pain got so bad last month that I stopped everything but a light walk.  I couldn't do the treadmill or even wii fit because it made my legs hurt so bad.  I took a 20 minute walk yesterday and seem ok today.  Tomorrow I am taking the kids on a Halloween Parade which will be a 2 mile walk.  Plus, I will have the double stroller because I doubt the kids will make the whole walk. If it rains, we might skip it.

So, if I do the walk and feel ok on Sunday, that will be a good indicator to see if the chiropractor is truly working.

Another thing, I cut out diet soda.  Could that make a difference?  I wonder if there is something in there (it's loaded with crap) that my body could be reacting to...even if only in a small way.  I am by no means a health expert or heath nut.  But, I do think there are some things that are really bad for the human body.  Soda being one of them.  I have no research or proof, but I know there is nothing good for you in that stuff.  I am proud to say that my children have yet to taste the stuff.  At 5 and 3 they are still limited to 100% fruit juice, milk, or water.  Once in a blue moon they have fruit punch, but they don't like it carbonated anyway.  Juice is very limited also.  They are also on Organic milk because I believe it is better for them.  We are not an "all organic" family at all.  There are some things I prefer organic though and milk is it.  I think of a child being breastfed and how all medications and drugs flow through the mother's breastmilk.  Wouldn't it be the same with cows?  All the anitibiotics and growth hormones seeping into the cow's milk makes me cringe.  In all honesty, I don't know if this stuff makes a difference, but it can't hurt to provide organic milk and cut out soda.

Thursday, October 22, 2009

GOOOOOD MORNING!

As I have mentioned before on this blog, when a person with fibromyalgia has a good day, we want to scream about it and tell the world!  I feel great today!

I did go to bed very early again last night, I listened to my body.  Lack of sleep is probably my biggest trigger to pain.  I hate the fact that I will probably always be someone that needs more sleep than the average person, but I have come to accept that.  What I cannot accept is dealing with pain everyday for the rest of my life and not doing the things that I want to do.  This is my biggest reason for trying alternative medicine. 

Today, 4 days after the camping excursion, I finally feel fully recovered.  It has taken my body a few days to rest and feel normal again.  I am out of my fog.

Yesterday was an interesting experience at the chiropractor's office.  My skin was "mildly" sore before arriving.  I had an itch on my leg and when I scratched it (without thinking) I felt the fibro pain.  Pain instead of relief from scratching the itch.  It's a throbbing pain that lasts a few minutes, sort of a reminder to me that the fibro is there even when I think it's not. 

So, I was in the therapy room before seeing the dr. for my adjustment.  I use a TENS unit for 8 minutes and then a wave (massage) table for another 8 minutes.  Sometimes I do this before my adjustment, sometimes after...it all depends on how busy they are.  So, I noticed that most people in the therapy room have their TENS unit set way higher than me.  I started at a 5-6 and then saw people coming in and setting theirs up to 15-25.  So, I decided to turn mine up.  I set it up to 10 the other day.  I feel much more sensitivity in my right shoulder, so I know my nerves are not functioning equally.  It was too high and it kind of hurt.  To me, this just proves that people with fibromyalgia have a higher sensitivity to touch.

On to the wave table.  Again, mine was set fairly low.  A wave goes up and down your back and it generally feels pretty good.  I kept seeing people using the highest level of the wave table and so I decided to give it a try.  Ouch!  It hurt my shoulder blades and I could feel pain in my lower buttocks area.  Another indication that I am not able to tolerate touch like most people. 

Interestingly enough, by the time I got in to see the Dr. for my adjustment, she could feel the tense muscles in my shoulder and pin pointed the exact spot of my pain.  She was unaware of my experience in the therapy room.  This makes it more credible to me, that she can feel where it hurts and work those areas.

Needless to say, I feel great today.  I hope I can maintain this over the weekend and I will not mess with the TENS unit or wave table again.  As much as I am fighting it, these are little reminders that I need to take it easy and listen to my body.  I am not "like" everyone else.  I need to stop trying to be and just accept the little ways that I feel better. 

Wednesday, October 21, 2009

Tired, but pain free

I am doing much better today, finally recouping from the camping and long weekend. I went to the chiropractor yesterday and sure enough...my pain is gone today. I still have some soreness if I push on my skin really hard, but it is very tolerable. Unlike when my body is so sensitive that the slightest touch causes me to scream out.


I am still having a little bit of fatigue and waking up hasn't been easy. I did take muscle relaxers last night and was asleep by 9pm, but woke up late at 7:20am. It was a struggle to get up, but once I did I felt fine. I think the muscle relaxers really do cause some fog in the morning. I took them at 6:45pm which should have been plenty of time for them to wear off, but it wasn't so. They make me really drowsy in the morning. But, my eyes don't hurt and I don't have an overwhelming feeling to lay down and sleep.

My husband and I were discussing whether or not the chiropractor is really helping or if it is all in my head? We both agreed it is helping. In the past, whenever I tried a new medication or vitamin or anything that might help...it never did. So, I have had that kind of hope before and I was able to say when it didn't work. This is different. It is working. I truly believe that the adjustments are relieving pressure in my spine...which is in turn helping my nerves to function normal again.


I saw an article not too long ago that mentioned something about fibro and spine health. I will look it up again, I would like to share it with the doctor. Most people think of chiropractors for back pain. In my case, it's all over body pain.

Tuesday, October 20, 2009

A "Lite" Flare

Sorry it's taken me so long to post, I have been recovering from the long weekend.  Friday afternoon, my husband and I went to the cabin and joined a bunch of other couples in the cold rainy forest!

It was slushy and very cold, but we did have a good time.  My husband and I used the time to reconnect and it's always nice to spend time with him away from our children.  I love my children more than anything in the world, but couples do need to find time to be together. 

I came home on Sunday and felt alright, but very tired.  Monday was much worse though, this is when I really started to feel my fibro.  My eyes hurt to open, my head was cloudy, and my muscles hurt again.  It's been awhile since I felt this bad, but I still didn't feel as bad as I usually do.  I think the weekend finally caught up with me.  As I mentioned in previous posts, I think alcohol does trigger the fibro.  There was quite a bit of alcohol over the weekend!  Also, I forgot to bring my vitamins, so I am sure that didn't help. And, finally, the cold.  I do believe the cold can cause a flare up.

So, yesterday I felt the worst.  I took tyelenol PMs and tried to get to bed very early.  As I laid in bed, my own body against the mattress hurt.  I laid down and wished I could float.  It's such a strange kind of pain.  I woke up a little better, but I knew the pain was still there when I put my deodarant on...the pressure of the roller under my arm hurt.  I HATE that type of ache. 

I go to the chiropractor tonight, start of week 3.  I hope it can diffuse this flare- is that possible?

Friday, October 16, 2009

Going Camping

Well, I am getting ready for our camping trip...luckily in a cabin.  We are expecting 3-5 inches of snow !!!  Please say it isn't so!  I am hoping I don't flare up, it will help that I should be able to sleep as much as I want.  Hope that isn't too tempting, I might want to sleep the entire weekend away.

Today was my 6th chiropractic adjustment/therapy.  I do consider this to be theraputic.  It doesn't replace my need for a doctor, but it feels good and I know it's helping...that is all that matters.  So, I have 2 more weeks of intensive therapy and then I will start to go less and less.  I am a little worried about going less because it seems to help so much.

Having the right chiropractor also makes all the difference.  My regular chiropractor is a gentle, female.  It never hurts and she is so gentle that I don't even notice my bruised feeling skin.  Today, one of the other female chiropractors did my adjustment - OUCH!  It hurt!  Not bad enough to stop it, but enough to think I wouldn't have gone back if she did my first adjustment.  So, finding somene you like seems to make all the difference.

Well, I am off to the camp site.  Wish me warm thoughts!  I won't be blogging again until Sunday or Monday.  Hopefully, it will be all good and I can say how I managed to escape a flareup!

Wednesday, October 14, 2009

What do Autism & Fibro have in common?

They are both syndromes!  So, why is it then, that critics don't say Austism isn't real?  Both Autism and Fibro exist based on characteristics.  I guess its because Austism characteristics can be seen and heard, and can also show physical symptoms.  But, there is no clear cut test or cure.  There is some subjectivity when trying to determine where a person might fall on the spectrum.

Austism awareness campaigns have been hugely successful.  Most people are familiar with Autism and it is very rarely disputed as a fake disease. 

Fibro is very similiar in that there is a "spectrum".  Symptoms can range from mild to severe.  There are common characteristics for diagnosis, but each individual responds differently to treatement.  Each person experience fibro a little bit different.  It would be interesting to take all the fibro symptoms and put them on a spectrum and try to classify each person that suffers from fibro on some type of scale.

Just a thought.

Medication

I have completed my 1st week of chiropractic treatment.  I am going to go 3 times per week - for 4 weeks.  Week 1 is complete.  I can honestly say, it is helping.  I haven't been hobbling around in the morning with the pain in my legs.  But, I also haven't been doing any exercise lately.  Maybe that is the true test.

Whatever the reason, I am just going to accept it and be happy about it.  I am going to live in the moment and enjoy some pain free days.  I am not going to wait for the pain to start or read into it too much.  I am pretty darn happy about it!

As I continue with chiropractic treatment, I wonder if I can acheive my ultimate goal:  cut out medication.  I hate taking pills everyday and if I can get off some of it, that would be wonderful.  I know many people with fibro take a lot more than I do, so I can't complain much.  But, it's an expense and a pain in the butt remembering to take it everyday.

My routine for medication is:

  • GNC Women's Ultra Mega Vitamin with breakfast.  This vitamin rocks!
  • YAZ birth control pill & Effexor with lunch.  I really don't need birth control, my husband had a vasectomy after Austin was born.  But, I take it because the pain with my periods was so bad (since Austin's birth) and it was irregular, plus endometriosis..  I also had dramatic mood swings during this time, so it helps with that as well.  Effexor is what the dr. prescribed for the fibro pain.
  • Zyrtec before bed.  This stops the wierd itching I get if I don't take it.  It's expensive over the counter, would love to drop this one!
Sometimes muscle relaxors or tyelenol pm before bed.

I have had no difficulty getting out of bed the past 2 mornings either.  I haven't exactly jumped right up, but I haven't been as sleepy and foggy in the morning.

Tuesday, October 13, 2009

Ice Packs

I forgot to mention in my previous posts, I did have a pretty bad headache yesterday.  It had been 3 days without going to the chiropractor and I was wishing I had an appointment (I do today).

The chiropractor had given me an ice pack at my 1st visit.  She told me that when I get a headache to put the ice pack on my neck and at the base of my skull.  So, instead of reaching for the tyelenol, I went for the ice pack.  Sure enough, it worked!

I tend to pull out my heating pad when I am achy.  I wonder if this makes it worse, maybe I should be using ice packs?  They tend to reduce swelling and inflammation.  Something to look up.

Friends dropping by...

So, yesterday was a challenge for me.  A friend called around 11am and asked if her and her son could stop by and "Boo" us.  This is something new, the "Boo" thing.  They fill a goody bag and then they place it on the door and ring the bell and run away.  They hide on the side of the house and then pop out and "boo" us.  It's really cute.

So, she wanted to stop over at 4 and boo us.  Then, she said "and maybe we can hang out and the kids can play for a little while."  Her son has a few behavior problems and tends to destroy my house.  I was planning on using the day to get caught up on cleaning and laundry because my mom is coming into town on Wednesday.  I told my friend this, that normally that would be fine, but I was cleaning all day and I didn't want the kids to destroy the house after my efforts.  She said they could play outside.  She wasn't getting the hint, I just didn't feel like I had the energy for this. 

But, she said she was coming at 4pm.  I know it probably sounds rude that she just invited herself and her child over...and well, it was.  But, I am kind of glad because my kids really enjoyed being "boo'd" and it was nice to see my friend as well.

I cleaned most of the house, except the kids bedrooms.  I had to do this anyway- whether they were coming or not.  When they came, I just set the rule that no one could play in the kids bedrooms.  We don't have a playroom, so kids tend to play in their bedrooms.  I told them they could bring a few toys to the living room, but that is all.  It worked out pretty good.

They ended up staying for dinner and that was fine.  One thing my friend said to me that I thought was a strange perspective of fibro was that I must have a high pain tolerance.  She thought since I was in pain so much, I must be able to tolerate higher levels of pain.  I don't think this is true, but I thought it was interesting.

So, yesterday turned out to be a pretty good day.  I realize too that friends don't really care how clean your house is.  If they do, probably not worth keeping as a friend.  And, as much as I don't like talking about fibro, people need us to in order to understand. 

Discoveries

Well, my long weekend is over and I did get some much needed rest.  Sunday we were supposed to go to the amusement park for the Halloween special.  But, Saturday morning Mercedes has a little cough and just wasn't herself.  She was running a low-grade fever of only 99 and she was eating ok.  But, she just wasn't the little ball of energy she normally is.  So, I gave her the option of going to the park or going to see the Toy Story 3D movies.  I was really surprised, but she picked the Toy Story movies.

It was a long time to sit in the theater, but the kids did really well and really enjoyed it.  I wasn't happy that I had eaten some candy and popcorn.  It's hard to sit there for 3 hours and not eat anything!  So, unfortunately we chose to sit in a theater and eat junk instead of walking around the park and getting fresh air.  This kind of bothered me, but I think we all needed the down time. 

I had some drinks with my husband Saturday night and I paid the price on Sunday.  I had pretty much cut out all alcohol so I can track whether or not that makes a difference.  We drink socially on the weekends, rarely to never during the week.  As I get older, I find it more and more difficult to function the next day- even if I only have a few beers.  It definitely makes a difference.  A few beers on Saturday night led to severe aches on Sunday night.  Once again, my shoulders were sore just to touch.

One of my worst feelings is when everything feels bruised.  My underarms (not the pits- lol) but just below there feel so swollen and sore that it hurts for my arms to be rested by my sides and touching the underarm.  I know that must sound confusing.  But, my own arms hanging hurt because they touch my body.  The slightest touch when I feel this way is painful.  Really, the best way to describe it is like a bruise.

So, I am concluding that alcohol does make the fibro worse for me.  I will continue to cut it out and only drink on occassion (rare).  But, we are going camping this upcoming weekend and I will have a few beers by the camp fire!

Oh- the camp fire.  This leads to another symptom and I don't know if it is from fibro or not.  I think it might be due to hot/cold sensitivities.  It's usually cold at the camp this time of year, so I try to sit closer to the fire.  What then happens, is my calves get itchy from the heat.  I don't see anyone else with this problem!  I am going to try to figure that one out this weekend.

Sunday, October 11, 2009

Something is working!

So Friday night, my thoat was sore and I was starting to feel like I was coming down with something.  I went to the chiropractor for my adjustment and then got a good nights rest.  I took some tyelenol pm to try to offset the sore throat.  I slept great!

I woke up feeling great on Saturday!  One of my best days in a long time.  I got my haircut in the afternoon, which gave me a headache.  I always seem to get a headache after I get my haircut.  But, nothing a little tyelenol couldn't take care of.

Later in the day, something significant happened.   When I was tucking my daughter in, she bumped my legs a few times.  I didn't jump up or scream in pain.  I felt some pain, but it wasn't as bad as it usually is when that happens.  There was a noticible decrease in my pain tolerance. 

Well, for now I will just say that I had a good day.  I hope to have more of these!

Friday, October 9, 2009

Mind over Matter

What a bunch of crap!  I am so frustrated right now.  My throat is very sore and I am feeling the fibro, run down fatigue.  Not now!  Go away!

I have been ver excited about my upcoming long weekend and my recent visits to the chiropractor.  But, with each minute passing today, I am feeling worse and worse.  My throat is getting very sore, usually the 1st indicator that I am run down.  I have a general feeling of fatigue and wish I could be home sleeping the afternoon away.  I cannot be getting sick and fibro cannot be getting the best of me.

I know I sound cynical right now, but I am going to pick myself up and try to resist the ill feelings.  I can feel it trying to pull me in.  I have way to much to do this weekend and I cannot get sick or fogged.

Mind over matter, right?  I will give it my best shot. 

Sore, Rainy Day

Well, I woke up a little sore today.  When I first woke up (with great difficulty) my legs felt like bricks.  I know the feeling all too well.  My legs were stiff and heavy and I really just wanted to go back to sleep.

Very disappointing since I have felt great the last 2 days.  I am trying to track what could cause the change, here is my list:

  1. I just remembered that I forgot to take my Effexor yesterday.
  2. I didn't go to the chiropractor yesterday.
  3. I had a longer than usual day (gymnastics and then bath for the kids).
  4. I fell asleep closer to 11pm (later than usual for me).
  5. It's cold and rainy outside.
Ok, so here is my theory.  Since I forgot to take the Effexor yesterday, it is really impacting me today (as opposed to when it happened).  This disrupted the routine and made it more difficult to fall asleep.  So, this leads me to be a little achy today.

So, I will get back on track with the Effexor.  Maybe it helps more than I realize?  And, I see the chiropractor after work.  I hope this will all lead to a great weekend.

On a positive note, I lost 1.5 lbs.  I have been trying to lose weight, but it isn't easy.  I am not overweight, but I am on the high end of the BMI scale healthy range.  I really want to take off 10 more lbs. 

Fat literally hurts on me.  I thought this was normal, but in learning about fibro, I have come to realize fat isn't supposed to hurt.  When I gain weight in my legs, the pain is much worse.  So, as hard as it is to stay slimmer, I know I feel better when I weight less. 

I have a busy weekend ahead and hope to I have the energy levels to keep up.  Tomorrow is our normal swimming lesson routine.  I would love to get to the gym a little early though and do a 30 minute workout before Mercedes' swim lesson.  But, I am going to make the right choice and sleep in a little.  It's all about choices right?  That sucks!!!  But, I know if I push myself too hard then I am setting myself up for trouble.

After that, I am going to get my haircut, which always makes me feel a little better.  I really do try to keep looking my best, even if I don't feel my best.  I don't want sympathy from people so I am not going to walk around looking like I feel.  If I did that, I would look 30 years older!

Sunday we are going to a Halloween event at the amusement park.  The kids will get dressed up and trick or treat around the park.  It's a LOT of walking, but it is so fun for the kids.  My goal is to pace myself to get through this day without any problems.  Sunday and Mondays tend to be difficult.

I have Monday off for Columbus day, which is the only reason we are doing the amusement park on a Sunday.  On Monday, it is a pretty simple day, taking the kids to see the Toy Story 3D marathon.  It doesn't involve much physical activity, so that should be ok. 

The hard part is that in between all of the above- lots of cleaning and laundry!  My husband has been awesome this week at keeping the house in pretty good shape.  But, there is still more to do.  And, my mother is coming into town (can't wait) on Wed. so I want to get some things ready for that too.

All for now, my shoulders are getting sore while I am typing.  I am going to go stretch and try to make the best of this rainy day.

Thursday, October 8, 2009

Hope and Cures

As I launch this blog, I am trying to provide links to helpful websites, articles, and blogs.  There is not a lack of fibro on the internet.  In fact, when you do a google search, you will find hundreds of pages! 

What amazes me is how many pages try to sell us something.  As if we aren't already desperate enough to be relieved from this pain, now we have to sort out the well meaning from those trying to capitalize off our illness.

Most of these pages start with "My wife suffered for 20 years..."   It's a man trying to sell us something on the hopes that we will connect with his wife.  Maybe some of these stories are true, and I so I apologize to those, but I really have a hard time believing the rest.  I will not provide links to sites that appear to be taking advantage of people in pain.  We are an easy target.

If there were a cure, surely we would know about it.  I hope.  Now, I am trying chiropractic care, and hoping it provides relief for me.  Hope is the key word.

I think the reason my mood has improved over the last 2 days is because of hopeWhat if this actually works?  Its been a long time since I felt hope.  I have sort of been in denial since my diagnosis anyway.  Now that I have come to accept it, I have to hope that there is something out there...somewhere...that will work.  And, I will try it.  I am willing to try acupuncture.  It's been around for as long as man, it must help in some way.

So, if I don't lose hope, I will be ok.  I cannot accept that this will be with me for the remainder of my life.  I can deal with flare ups and some discomfort.  But, I want my life back.  I want my energy back.  I want to be normal again.

Without hope, I might as well curl up in a ball (and sometimes I do) and accept this is my fate.  I can't do that to my kids or my husband.

Feeling great today!

Unfortunately, when you have fibro, you tend to make a big deal when you have a good day.  Sometimes I wonder what it must be like to feel this way every day- as most healthy people do.  Most healthy people wake up pain free, refreshed (if they actually sleep well) and go on with their day.  They don't have to stop and reflect and tell the world "I feel good today".

I also worry about how long it will last.  Will I still feel this good in the afternoon?  Will I be able to get some things done around the house after dinner?  I want to bottle up the energy so I don't lose it.  I want to keep it on reserve for when I might really need it.  Today will be a long day anyway.  I will work until 4 and then go home, grab the kids, and head to gymnastics.  We will be there until 7:30pm, sometimes we stop for ice cream on the way home, and then they need a bath before bed.  So, there is no time to be tired today. 

Last night I saw the chiropractor again.  I had my adjustment (it's more fun to say I was cracked) and then therapy with the electrical stimulation and massage table.  I leave there feeling so good!  I have decided I drive safer too because I can actaully turn my neck all the way around to see what is coming!  lol

Well, the real question is whether or not it works.  After only 2 sessions, I am leaning toward yes.  But, it's still really too early to tell.  I haven't taken any muscle relaxers or tyelenol PMs for 2 nights.  I have slept without them pretty good, with a wakeup between 2-3am.  But, I have been able to fall back asleep within a few minutes.

So, my head is clear today - no fog.  I really think its because I haven't taken anything at night.  I do think that stuff lingers in the morning, making it even more difficult to function and get moving.  So, I don't know if I feel good today from the adjustment/therapy or just from not taking any crap at bedtime.  Time will tell.

Wednesday, October 7, 2009

Being Mom

There is nothing I enjoy more than being a mother to my 5 year old daughter and my 3 year old son.

Part of the reason I am trying the chiropractic care is because of how much I love them.  I have to pull through this.  My daughter has been saying things like "Ouch, my legs hurt" or "Oh, my whole body hurts".  It makes me want to cry.  This is a learned behavior on her end, she looks up to me.  She wants to be me.  I want her to see me the way I feel inside - ready to do so many fun things and take on the world.  Unfortunately, most of the time she is seeing the way I feel on the oustide.  Pain and fatigue.

Sometimes, we will go out for a Saturday morning of activity and running errands.  We might be gone from 10 - 2pm and when we get home I almost always need to lay down for a few minutes.  Sometimes I need to nap.  It is frustrating for me and its not how I want my children to see.

There is also the part of being wife.  I am married to a truly wonderful man.  He is supportive, but I know that he is frustrated.  His "partner" no longer exists.  Maybe it's more like his soulmate is gone.  When we were younger and I didn't yet have this, we would go out all night.  We had so much fun and we were always ready to go.  Now, I go to bed at 8pm.  Sometimes 9pm, but its usually shortly after the kids are asleep.  On a bad day, its even before they are asleep, but in bed.

He stays up and watches tv by himself.  Sometimes he works.  Sometimes he does laundry or tinkers in the garage.  Either way, he has given up on asking me to hang out with him.  It is sad.  I would rather sleep than cuddle which is one of the cruelest parts of this disorder.  I know he is lonely and he wants me back.  He is one of the only people that could possibly understand because he lives with it.  In a sense, he has this too.  It has changed his life.


Austin and Mercedes (on Mercedes' 1st day of kindergarten)



My boy



Sweet girl
I need to get better.

1st Adjustment at Chiropractor

Well, last night was the big night.  I got my x-ray results and had my 1st adjustment. 

For a long time now, I have always thought that many of my health problems were linked together and that the Dr.s were not making the connection.  I would see my OB/GYN for Endometriosis diagnoses/pain.  Then my hematologist for my ITP (autoimmune; low platelet count), Gastro Dr. for acid reflux and colon problems, and now the rheumologist for the Fibromyalgia.  I would like to think my primary care doctor looks at all this and tries to find a common cause (or cure) but I just don't think she has the time.  My list of health problems is far to long for a 37 year old.

So, where am I going with this?  I have wanted a wholistic approach.  When the Chiro showed my my x-rays, she said some interesting things.  She said some of my nerves that were not functioning properly were the nerves connected with the spleen, gallbladder, colon, and intestines.   Hmmmm....my platelets are being killed off in the spleen (so there has been talk of removing the spleen all together), my gallbladder was removed for stones and infection, and the gastro doctor told me that I have scar tissue wrapped around my colon from either endometriosis or c-section.  I don't think the Chiro even knew how instantly I made that connection.

The next nerve problem were the ones that run to the kidneys, ovaries, utereus.  She asked me if I had painful periods.  Well, I am on YAZ birth control even though my husband had a vasectomy.  The YAZ controls the pain and regulates my period.  Yup, another drug to fix the problem.  Supposedly, I have endometriosis and have been told to have a hysterectomy.  Yup, some dr.s really want to take out all of our organs.  I have lost my gallbladder, talk of taking out the spleen, and then the hysterectomy.  It's too much to take in sometimes.

So, Dr.s keep subscribing new drugs and I just keep going on exhausted and miserable.

Ok, now I am sort of sold, but still a skeptic...I had my 1st adjustment.  I layed flat on my stomach and she cracked some back bones.  It didn't hurt, just felt like some pressure.  Amazing it didn't hurt really - considering even the slightest touch hurts sometimes.

Then, I laid on my back and she cracked my head/neck.  That was loud and a little shocking, but I can't say that it hurt.  All in all, it took about 5 minutes.

Then, I went into another room where they did electric stimulation on my back shoulder muscles.  It tingles, but kind of felt good.  That lasted 8 minutes.  Next, the massage table.  I am not sure what this is really called, but I laid face up on a table and a ball moved up and down my back.  It didn't feel great, kind of uncomfortable.  But, it didn't hurt enough for me to want to stop it.

Ok...that was the visit.  Now, on to the schedule.  She wants me to come in 3 times a week.  Honestly, I was thankful it wasn't daily.  It makes sense that they want to do an intense period of therapy.  The main goal is to get me out of pain immediately.  I am all for it, of course!  I would do the 3 times per week for 4 weeks and then drop down to 2 times per week.  And, slowly get to a point where I go once per month.

Although my insurance covers a lot of it, I have a $20 copay at each visit.  It's not hard math - $60 per week and $240 for the month.  Yikes.  Honestly, I don't think its too much to pay for relief.  I would pay more if it took me out of the current misery I am in.  But, the timing is a little rough.  Christmas is fast approaching and we have a long list of people we need to buy for.  And, we really want to move in the spring and we are saving our money for a down payment.  My husband is in real estate and these are also his slow months, so income isn't as high as it was in the summer.

But, how can I walk away from something that might help?  I cannot live the rest of my life going to bed at 8pm only to drag out of bed each morning in pain and fog.  Its a miserable way to live.  I have to try this or I won't know if it works or not.

I will say, after my 1st adjustment, I do feel a little better.  My fatigue last night was not as bad as usual (I made it to 9:30pm- lol).  And, although my legs still have a lot of muscle pain, my overall stiffness isn't as bad.

So, long story short, I am going to keep at it.  But, I will pay week by week and if it isn't helping, I will discontinue this and keep searching for "cure".

Tuesday, October 6, 2009

Friendships

I recently read an article about friendships and support for people with fibro.  I have been thinking a lot about it.  To sum it up, it basically said you need to surround yourself with positive people and people that at least try to understand.  I am not sure that is even possible, I would cut out majority of my friends.  In fact, there are some friends I haven't even told about the fibro.

The alternative to this (which was mentioned in the article) was to lower your expectations about people understanding what we are going through.  This is where I am at.  I am trying not to let some things that other people say get to me, but it is VERY hard.  One friend said "Fibro what?" when I said the word Fibromyalgia.  She knew I had this, but couldn't really pronounce it, I guess.  She is a stay-at-home mom of a little boy that is 5 years old and she complains to me constantly about how much she has to do around the house.  For some reason, she thinks since I work full-time that I do not have the same amount of chores she does.  I can't figure out exactly why she thinks she has more laundry than we do when we have 1 additional family member.  But, that is not the point.

One time when I told her I couldn't babysit her son on a Thursday night because I had to get up for work the next day and I go to bed early she said (brace yourself):  "You need to take a vitamin."  GASP- that is what I did.  How dare she?

I shared it with my husband and we both rolled our eyes.  If all I needed to do was take a vitamin, well, I would thank my lucky stars.  And you know what, I do take a vitamin.  Does it help?  Not one bit.  :)

Feeling Motivated

So, as the cycle goes, I had 2 days of pain and today I feel much better.  Not 100% pain free, but so much better.  As the fog clears and I feel as though I can manage this, I start to look for ways to make myself feel better.  I am always trying to figure out what I did differently yesterday to make me feel so much better today.  As if I can figure out the rhyme and reason of fibromyalgia.

So, last night I stretched out across the entire bed when falling asleep (my hubby and the dog weren't in bed yet).  So, I thought maybe this helped and came up with a theory:  once Simba (my small Shih Tzu) comes to bed, she likes to sleep on my feet or around my feet.  This leaves me kind of cramped while I am sleeping.  Maybe I need to just push her out of the way and take up more space.  As I told this to my husband this morning, he laughed and said I already stretch out and take up most of the space.  So- that theory is out the window!  :)

Another thing I did well last night was take my Zyrtec.  I take Zyrtec every night before bed, it keeps my skin calm.  If I don't take it, I tend to get itchy all over.  My hands and feet burn in a strange way that is more like itchy...but burning.  I have had a hard time explaining this odd itching thing to my doctors.  If I go 2-3 days without Zyrtec, it gets really bad and can sometimes lead to hives and blotching.  But, Zyrtec does the trick.

Of course with all of the itching, I have had extensive allergy testing.  No food allergies that they can find and no elevated levels of histamine.  So, what is causing it then?  Doctors do not know (again).  They said it could be a preservative in a food or something like that, but its nearly impossible to figure out.  So, if Zyrtec does the trick- then we will continue that expensive treatment.  Since it went over the counter- its pretty expensive.

But, anyway, I do think when I take Zyrtec at night - I wake up clearer.  I guess its one less thing my body needs to fight. 

Other things that I think can help is music and stretching.  If I put music on my computer while I work, it lifts my spirits and I am distracted from the pain.  It's still there, but I am not thinking about it.  And, stretching.  I am going to try stretching 3 times a day to see if this helps at all.  I have no evidence that it will, but I am going to give it a try.

I go to the Chiropractor tonight and I am a little worried that they are going to try to get me to come in every day.  I can't afford that.  I think I will have a $20 co-pay and I can't afford to pay that daily.  We'll see how it goes.

Monday, October 5, 2009

Mondays hurt most

Mondays are usually the worst day of the week for me (with the exception of yesterday, a very sore Sunday).  My job requires very little physical effort, mostly sitting at a computer.  So, on Saturday and Sunday I tend to be more active and also spend 99.9% of my waking time with the kids.  So, by Monday I tend to feel like I didn't get any sleep all weekend.  The strange part is I actually got more sleep than during the week.

This morning I am having a hard time waking up.  Because I was so sore yesterday, I took muscle relaxers at 6:45pm last night.  I was asleep by 9:30pm and still had difficulty when the alarm clock started to go off at 6:30am.  I finally got up at 7:10 and then was 30 minutes late for work.  Unfortunately, this is a common occurance.  I can't seem to get out of bed in the morning, even after a good night of sleep.  I wish I could wake up refreshed.  The only time that ever happens is on a rare occassion that I can sleep in until noon.  I am not joking when I say that I could sleep for 15 hours without any problem.

So, here I am on Monday.  I feel a little better physically, but still sore.  Mentally, I am in a bit of a fog and feel like I can't get my engine started.  I had a little over 2 cups of coffee and breakfast, but its not helping.

I know tomorrow will be better.  I seem to gain energy throughout the week and then fizzle Friday night.  Saturdays are usually great because I sleep in a little later.  Sundays usually aren't too bad, unless I did extra activities on Saturday.  Then there are Mondays...

Sunday, October 4, 2009

Chiropractor

So, I went to the chiropractor on Friday and it was an interesting experience.  They asked a lot of questions about my health and stuff.  They also took 6 x-rays of my back.  I can't really remember much of what they said, because they had me do most of the talking.  They said they think they can help me relieve some of the pain.

My next appointment is Tuesday to discuss a plan of action and the x-rays.

Yesterday I did some cleaning around the house, nothing too exhausting or crazy.  But, today my thighs are soooooo sore.  I tried using a heating pad this morning and it does help a little.  But, after awhile, the soreness returns.  I felt as if I had run a marathan yesterday and maybe did some strength training in my legs.  It is just so frustrating.  We were planning on taking the kids to the pumpkin patch today and I was determined not to let this interfere.  I refuse to let this stop me from doing things I plan on doing. 

So, we went and there were times when my legs really hurt.  I think I am getting worse, not better.  I do not do anything to cause this pain.  I have stopped social drinking too because I worry that maybe that increases the pain.  Doesn't seem to matter what I do or don't do- its always the same.  Sorry to gripe, but it is really getting on my nerves.  I just want to feel better and be "normal".

Friday, October 2, 2009

Talking about Fibro

I feel wierd talking about it.  I get the impression from the "listener" that this is something very mild. 
So, even if a conversation warrants a mention of fibro, I think I will avoid talking about it from now on.  Of course, my husband is the exception.  He lives with me everyday and sees how if impacts my life.  I hate to say that it interferes with my daily activities, but it does.  I try not to let it.  It doesn't stop me, but it does slow me down.  Who knows, maybe that isn't a bad thing.  But, I would like to be much more active than I am now and I know my body is holding back.

Let's hope for a good outcome at the Chriopractor today!

Thursday, October 1, 2009

Chiropractor

I will start to keep up with my blog. It's been awhile and I haven't felt much like writing. I am not sharing this blog with family and friends because I want a place where I can write about how I honestly feel without being thought of as "dramatic" or "crazy". I really think most of my family, outside of my husband, does not believe I have fibromyalgia. Like many previous doctors, they think I am just stressed out because I work full-time and I have two small children.

But, this is not stress. Quite honestly, outside of being in pain so often, I have very little stress. My body feeling ages beyond my true years is the only stress I really have. I am happy in my marriage, thrilled and thankful for my children, and I really like my job. Of course, I wish we had more money and all that stuff, but it doesn't consume my thoughts.

So, I am seeing a chiroprator on Friday, at the recommendation of a friend. It's sort of a last resort and ditch effort to reclaim my body. I am so sick of being tired and sore. The fibro has gotten worse, not better. Well, for the most part. I have been on Effexor for quite awhile now and it doesn't really seem to do a whole lot. I am not depressed, so maybe it does help there. One very noticible thing though, I have no more jaw pain. When I was 1st diagnosed with fibro, I had an aching jaw almost all of the time. My dentist said I had classic TMJ and offered some things I could do. But, nothing worked except this Effexor. When I started that, the jaw pain went away completely. Wierd! But, hey, I'll take it.

I struggle with exercise. I love to exercise and go to the gym, etc. But, lately, I find that the days following even small workouts leave me in a great deal of pain. We had bought a wii fit and I thought those "light" workouts would be perfect. The yoga didn't cause much pain, but it isn't like being in a real yoga class. But, I bought the wii active and was doing some boxing moves and kicks. I really enjoyed it! But, the next day I could hardly walk. I know I was using some muscles that haven't been used in a long time, but the amount of soreness exceeded what would be considered normal. I wasn't just sore. I could barely walk. This was an awakening to the fact that fibro is interferring with my life.

A week or so later I wanted to do the wii active again, but didn't because I was leaving for a business trip the following day. I knew I couldn't handle walking thru the airport with such sore legs. I have read that managing fibro is all about choices. Well, that just SUCKS. So, I have to choose to slow down when I want to live my life to the fullest? I have to choose not to exercise so I can do basic activities the next day? That is not a solution for me. I don't want to choose not to do things that I enjoy.

While I was on the business trip, I realized just how much this affects my life. I was in bed early each night and exhausted at the end of the day (even though I was sitting in conferences most of the day). I was traveling with my boss who is about 20 years older than me and I couldn't keep up with her level of energy. This was extremely frustrating for me.

I also came down with strep throat again. This is when a friend asked me if I considered a chiropractor. I had considered it, but really never followed through. My husband and I have discussed massage therapy, but I am actually afraid a massage will hurt! Sometimes the slightest pressure on my shoulders is very painful. I will go to the chiropractor and see if she can help. At this point, I feel like I have nothing to lose. I want my body back.

I need to make a list of all my ailments (long list) and maybe she can connect them. It seems like when I fix one thing, another breaks. I wonder if this could help my ITP too?

ITP. This is an auto-immune disease that I was diagnosed with in about 2000 or 2001. My body seems to destroy my platelets and the doctors don't really know why. My counts do not typically get dangerously low. When I was first diagnosed, the count was about 110k. For a normal person, platelet counts are 250k - 450k. At 110k, I was not at risk for much of anything, but they just kept an eye on it because it wasn't normal. I wasn't treated for it, but just bruised easily. I didn't get concerned with this again until 2004 when I was pregnant with my 1st child. Sometimes women develop ITP when they are pregnant and then their counts are normal again after birth. Well, interestingly enough, my counts went up to about 125k.

If your counts are below 100k, doctors are hesitant to give you an epidural. That was really my biggest concern, making sure I could deliver without pain! I know some women want natural birth, but I was terrified and wanted as little pain as possible. I delivered a healthy baby girl via c-section on 5/20/2004. The labor was almost 3 days and was miserable...but my platelets stayed above the line.

Over the next few years, they decreased slowly. By the time I was pregnant again in 2006, they were about 90k - 100k as my "normal". Again, delivered c-section with no issues.

3 years later, my "normal" is 50-60k. I had my gallbladder removed in 2008 and was given WinRho via an IV and this boosted my counts to 300k! But, it only lasted a few weeks. Predisone was tested and actually decreased my counts, which baffled the doctors.

My ITP is actually odd too. Most people with ITP have antibodies in their blood that specifically attack their platelets. Doctors have tested me for these antibodies and they weren't there. My general PCP thinks this means I do not *officially* have ITP. But, my hematologist says that I don't need to have the antibodies present to have ITP. He is solid on his diagnosis. I also had "young" platelets in my blood. They say this means that the platelets are being destroyed before they mature.

Well, the gallbladder removal was quite interesting too. But, more on that later. In summary, I have several issues that I am hoping the chiropractor can help me with.

I will write more tomorrow after the visit!

Wednesday, April 1, 2009

Is this a real thing?

So, it's been a week since I was diagnosed with fibro and I started to tell some family and friends. Not many, just a few that I feel close enough with. And, I have done a great deal of research and I am amazed at how it seems like the description of fibro was written about me.

The muscle aches are a strange thing. I really thought that it was normal to feel pain when touched gently. The thing is, I didn't realize that people were touching me gently...I thought they were be rough. My idea of a normal shoulder rub is not the same as it should be. Looking back at a couple of massages I have received in the past, I can remember thinking "this is supposed to feel like this. It hurts at times, but it's just because I am tense. It will feel better later". Ummm...I guess most people don't tense up while getting the massage!

Another thing that makes sense now is pedicures and manicures. I love getting a pedicure so I can soak my feet in the hot water and get my nails painted. But, I dread when they start exfoliating my feet and filing my toe nails. It hurts so bad that I cringe and sometime the person says "Does THAT hurt" in a surprised way.

Other things that make sense now- TMJ. For the past year, my jaw pain has gotten pretty bad. It started about 2.5 years ago. At first, I thought it was my ears. I kept feeling this tingling and burning in my ears. I even went to the ENT and he had no idea what "sensation" I was describing. He did a hearing test and then sent me on my way. Then, I went to the Dentist for routine dental work. The days that followed, my jaw hurt badly. But, it NEVER went away. At my next visit I told the dentist about it, hoping he could shorten my time there so it wouldn't get bad. He looked at my jaw, had me open/close, etc....told me I had TMJ. He gave me some therapies to try on my own and told me to let him know if it got really bad. In the meantime, my husband claims that my jaw makes a noise when I eat and that it has been making this noise since the day we met (10 years ago). Well, over time, this seems to have gotten worse and it is now to the point where it aches constantly. If I am just sitting watching TV- it aches. It is a part of daily pain for me now. Not bad pain, but a lingering ache.

Other symptoms- burning hands and feet. I keep that at bay by taking Zyrtec. If I take the Zyrtec, it stays away. This started about 7 years ago. I underwent a bunch of allergy testing and they couldn't find anything wrong. Story of my life.

Oh there is so much more. It feels good to write this and get it out...even if no one is listening.

Thursday, March 26, 2009

Diagnosis

I was diagnosed with Fibro on 3/25/2009. After years and years of strange and uncomfortable symptoms...this is the diagnosis. I am uncertain of it because I have had so many diagnosis over the last several years, it's hard to trust this one. But, I know this is different. I know this is true. I cannot deny the way most of my symptoms line up with the fibro symptoms.

I will write more later, but wanted to kick off this blog. It's just a place for me to write about my feelings and life in general. More to come...