LivingWithThePain's Blog











{September 27, 2010}   Pain getting the better of me

So recently the pain has gotten the better of me. At work, one of my bosses asked to speak with me regarding my take on something and I was in pain beyond words. What he wanted to discuss literally punch me in the face and with the pain on top of it, I could not handle it. So to my horror, I began to tear up and a few got past my guard. He now thinks that I am super emotional and a complete basket case. Even though he’ll deny it all day long, I know that it is fact.

One thing ran through my mind when all this was happening….If Kimon was here, he’d be calling an ambulance. I remember the threat to this day! We were working and he looked at me and said “girl if you ever start crying here are work, I’m calling an ambulance cause your about to die”. So this thought helped me get myself back together that night and work the remainder of my shift.

Those of you who know me personally, know that I should have left because I was completely tapped out. I’m proving to myself that I can push through more and more pain if need be. I really wish the need wasn’t there, but that’s life I guess.

I talked with Chris this evening and we have decided to try and change our diet again. No more fast food that just causes me to have more pain, but good home cooking. This way I can regulate what I eat. One of my other bosses has said if I try to take control of this on my own and prove that I can commit to this change, she will help me hone it further to make the pain hopefully disappear. At this point I’m desperate and will try anything. I am taking too many pain pills in my opinion and this needs to stop.

I am only 29 years old and I can not imagine living the rest of my life like this. I know deep down that this is only half of what my grandmother went through and she still pushed herself to work and be functional. I feel that I must push through like she did to make her proud of me. I know that she never wanted this for me or my sister. At least one of us has escaped this nightmare and I’m thankful that she doesn’t have to deal with it. I know that she is a very strong person but she is really just starting her life and doesn’t need this extra road block. I hope she never has to feel the pain as I do.

I also try and make my boyfriend proud by getting up and going to work everyday. Even though most days I don’t want to move, I make myself for him. I know that I have to have a reason to get up and make myself be mobile but some days it’s really too hard. Those are the days that I push even harder.

I know that there are some out there saying you don’t have to prove anything, if you need te time take it. Believe me when I ay I know where you are coming from, but he knows me better. He can look at me and know when I’m done. I could go to the government and file for disability and never have to work a day in my life again. But really, what kind of life would that be anyway. I would fall apart even faster not having something to get up for on a daily basis.

If and when I need the time and the help, I’ll ask for it. I don’t ask for help often, so if I ever ask you know I’m for real.

To those of you out there who are living with pain everyday…Please find a great support team! Without the love and support the journey is long and hard. You have to start with yourself first. A wise woman once told me, that in order to start healing is to start with yourself. If you are not willing to make the changes and choices to better yourself, nobody else will.

It’s really like a person who has an addiction. They have to see the problem, acknowledge it and fix it before others will offer their assistance. Look long and hard in the mirror and find out if you like what you see. If not, start making the changes yourself and others will help you along your journey.

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{July 24, 2010}   Fibro and more

So I went to see my primary back at the beginning of June I think.  All my tests came back fine and dandy.  I mentioned that I was suffering from some abdominal pain again like when I stand up I feel a pull or cramp in that lower woman area. 

So they sent me for an ultrasound.  Well I dragged my feet and thought that I would get to it eventually.  Well my rheumatoid doctor send me for an MRI as well and I had a follow up last Thursday, the 22nd.  So I figured I should get the MRI done so I she had the results by the time my appointment came up.  Well that’s when I remembered I needed an ultrasound too, so I made an appointment for both on the same day at the same place.

So my primary calls me the other day and tells me that I have another ovarian cyst.  The nurse tells me “these things usually take care of themselves” so we will have you go for another ultrasound in about 3 months.  Mind you I have already been dealing with the pain for a month or so prior.  I waited almost 2 months to actually get the original ultrasound done and now I have to wait another 3 months.  So I asked the nurse what side it was on and how big it was.  She didn’t know??!!  WTF!  How can you call someone and tell them that there is something wrong with them and not even have all the information?  So I asked the nurse to put a note in my file.  “Please tell the NP that the last time I have ovarian cysts, I had them for over 6 months and the only reason it went away was due to surgery!”

The nurse then asks if I am okay waiting the 3 months for the ultrasound.  I said sure.  I will not be surprised if it is still there then and if not, super for me!

So the MRI came back.  My doctor was looking for a pinched nerve or something else to determine why I was having so much pain everywhere.  Maybe a hidden reason other than fibro.  Okay, I get that.  All it told her was I have arthritis in my neck.  Well, the x-ray that I had done like 6 months ago told her that, so it was a pointless expense that I will probably have to pay out of pocket because my insurance sucks.  But whatever, I got a lot of information out of it right!

Oh and tonight I went to a wedding reception, more like a house party.  They were having a drinking contest “flip the cup” and beer was the poison.  Well beer is made of yeast, which inflames the fibro, so I said that I could not play.  The groom proceeds to tell me that he thinks that fibro is bullshit and he came to this deduction because of the commercials that they play on television.  “Fibromylasia is a real disease.”  He says that if you have to say it’s real, then it’s something that is bogus.  I told him that the disease itself is not bogus but the medication is a joke, at least for me.  Nothing has helped. 

My doctor put me on Cymbalta, the depression medication, thinking that it has to do with the other chemical fluid that is in the brain since I didn’t respond to the other medication.  Well I read about it and it says that it can help with fibro too.  So sure I’ll try it.  I’ll do anything to help get rid of the pain right?  Yeah, side effect suicidal tendencies.  UNDERSTATEMENT!!!!!!  I took it for 3 days and was ready to literally jump off the Skyway!  My Supervisors at work even noticed that there was something wrong with me.  Thank goodness I have Chris and he told me to stop taking the medicine.  Otherwise, who knows if I would have jumped off the bridge or not.  I mean I wasn’t actually at the bridge but I was heading for the car to go!  Just didn’t want to leave the car up there for Chris to have to figure out how to get there and get if afterwards.  Completely selfish! I know right. 

So that’s my story as of now.  My doctor didn’t give me anything else for the primary meds of fibro.  She is sending me to physical Therapy in hopes that this will help strengthen stuff and help me build up my resistance without all these medicines.

I’ll let you know how it goes!
Erika



{June 3, 2010}   The Move

So we had to move because there was mold in our apartment.  We really didn’t think much of it at first because I was able to wipe it off the walls.

Well it came back 3 more times.  We told the office what was going on and they came in and did a treatment to the walls that was suppose to kill all the mold within the walls.  Well over the winter it came back on the window sill and the office told us that this was normal due to the windows being old and that we should wipe the water off the windows to keep this from happening. 

Ok, I can kind of understand doing our part in preventing the mold from recurring, so we did that.  They then told us that if we used the air conditioner that it would make the problem disappear and nobody came to the apartment to do the “treatment” on the window sill. 

We decided that we had had enough of the mold and told the office that we needed a different apartment.  We were not even trying to leave the complex, we just wanted a different apartment that was mold free.  Well they didn’t have another apartment for us to move into, so they let us out of our lease. 

So the looking for a place begins.  We were lucky enough to find a decent place that was still close to work and that was reasonable in price.  The old complex asked if we had found anything, so we told them and they proceeded to tell us how crappy this new place was.  I stopped him right there and was like, look we didn’t ask for mold.  We didn’t ask for you to let us out of our lease, we just asked for a “mold free” apartment.  I mean they didn’t even want to pay for a hotel room to actually take care of our current unit.  It’s not like we did this on purpose so we could move.  We were very content where we were.

So, I start packing up all of our things.  A couple of friends said that they would help us move.  One got sick, so was unable to help us but the other came.  Chris and I had already moved all the boxes that we had, so it was just the furniture that was left.  Chris and I picked up the truck at Noon and he had it returned by 1:30.  They asked if something was wrong with the truck because it was brought back so fast. 

I have almost finished all the unpacking.  The girls are thrilled with their new room and the fact that there are 2 bathrooms now.  We have no bed to sleep on because when we lifted it, the bottom was covered in mold and the top of the box springs.  That was completely gross!  Can you imagine that all this time, we have basically been sleeping in mold?  No wonder I have been feeling so run down and Chris is always congested!

Due to the fact that we had help from a wonderful friend, I had little pain due to the move.  I am suffering a little because of moving all those boxes and unpacking everything but it so could have been worse.

So now I will continue the rest of my vacation.  We will be going to Jacksonville to see his mom on Friday and Saturday.  It kind of sucks because I was hoping to have the entire week but just like the place I work at, things change all the time.  You have to be on your toes because the next move you make may not be what you have planned.



{April 21, 2010}   Some unkind weeks

Since I started this new position at work, I have not had 2 days off in a row to recharge the battery.  I have not been sleeping well, despite the muscle relaxers and I have been in absolute agony! 

My new position causes a lot of stress because there is so much to do and not a lot of time to get it done.  It’s a juggling act and in some cases a need for assistance as my time is very limited when my reps are actually working.  So, I have been bending over backwards to keep up and make sure that I am doing everything I can for my reps. 

There have been days that I have been dragging so much ass, I know that my Supervisor would have sent me home by now.  The Supervisor that I am currently working with knows what I am going through but also knows that if I came in then I am ok to work.

I came in one day in so much pain I felt like I was hit by a train!  I had a lidocaine patch on my back and it still did nothing to cut any of the pain off at all.  I had to go speak to my Supervisor and she asked if I was alright.  She then told me that she understood what I was trying to do but if I needed to take a day, then I needed the day!  I feel like such a failure for taking the day, so I rarely ever do.  My thought is if I can get up out of bed, then I can go into work and that is what I do.

One day my neck was hurting so bad, I had a patch on it and that did no good.  When you take all your medicine as you are advised to and add something to take some of the edge off and get no relief, it can be very depressing.  The depression is worse on the days that I know I need help and I ask for help but receive none.  That is mostly activities that deal with work and not home.

I have to give Chris his kudos as I know it is a huge pain to deal with me.  As soon as I walk into the door I fall apart.  I have been working so hard throughout the day to keep my pain from others that by the time I get home I have only made it worse and he has to deal with it.  I know that he understands that I do not like to show weakness and so he knows why when I get home it all comes out.  Most times I can’t even get up to go to the restroom without help.  If I pass out on the couch, he’ll leave me there so I can get some solid sleep for as long as possible. 

If I take the car, he worries as he knows that driving and sitting up in the car hurts like a mother.  I have gotten so bad in the car that I have to keep a pillow in the car to soften the back rest.  I am losing my grip in my right hand.  I will drop my soda bottles, glass, purse or even something as light as a piece of paper as it spasms and drops what is in it.  Most times I have to use both hands to hold a glass or bottle to drink out of.  I am currently unable to use chopsticks as my hands shake too much and I can’t keep it pinched to hold the food.

Everyday is a new struggle to get past the pain.  It seems like my medicine is no longer helping and that I am wasting my time.  I am not disappointed mind you as it’s 200 buck every 3 months for the current regimen I am on.  I need to become more active and at least start walking again so I can keep myself loose and limber.  A nice deep tissue massage would be wonderful as well.

Oh well, tomorrow is another day!

Cheers,
Erika



{March 19, 2010}   Pain at Work

It is hard to work and be in pain.  I have been approved for FMLA at work but I am afraid to use it.  I know that they can not fire me or anything but I don’t want them to take away my loan position, so I work with pain.

It hasn’t been much time for me to think about it lately as I have been running around work.  A few people have asked me if walking around was all I am suppose to do now.  I have to move around a lot to get to meetings or to talk with another department.  What’s funny is that within my loan I have been loaned out twice this week.  I am not working directly with the class we have right now, but the exposure with them would have been great for me.

You would think that with being able to move around that I would not have pain, but I do.  When I finally get to where I am going, I have to sit and listen to that person.  It’s hard to stand when people are giving presentations and have them feel comfortable.  Also, when working with the reps, standing puts some on edge.  I try to explain prior to doing so but they still get nervous so I must sit through the pain.  Also, I cannot bring my heating pad with me wherever I go, so I have no relief with it throughout the day.

I seem to be having more and more spasms that are taking me by surprise.  I am having a hard time at work with this.  I know that I am entitled to an additional break but I rarely find the time to take my normal breaks let alone my extra one.

I ran in to Rebecca the other day, it was great to see someone from my old team.  I miss them all.  I am working a completely different shift so I never see them anymore.  I hope you guys know that I am not thinking I am better, just not there!

I need to start taking better care of myself, nobody else will do it for me.  I am trying to get somewhere at work and become somebody and with this I can achieve that.  So I work through the spasms and the pain with a grin.  My teammates know that I have an issue and are begining to see the signs and know what is happening.  I hate being like a book that can be read.  They know I do not want to talk about it but they seem to “baby” me and help me more on those days.

“The pain never goes away completely” is what I told Rebecca.  Some days are definitely better than others but there is always a dull pain that is managable everyday.  When the spasms come I have to get up and then there is much more pain but I manage.  I am starting to manage it better again but I am taking my medicines like I am suppose too.

No worries everyone, I am doing what I am told to do to take care of myself.  I hope to see you guys again soon.



{March 4, 2010}   Having A Wonderful Supervisor

I have a wonderful Supervisor at work. 

She understands my situation with Fibromyalgia.  She told me that she has a dear friend with it and helps her out when she needs the support to carry on.  It really helps to have someone on your side that truly understands.  She doesn’t know the extent of the pain, as she has never experienced it herself, but she can see it.

The other day I went to her office for a meeting and she was looking at her computer when I first sat down.  When she finally looked at me, she said to me, “This is a bad day, I’m sorry let me know if there is something I can do.”  I was  amased because I was smiling and talking to her just with a smile in my voice.

She could tell by my facial expression that she actually knew, so she just said the “rocking.”  I didn’t even know that I was rocking.  It’s something that I have been told that I do when the pain gets really bad.  Unconsciously, I rock because the motion actually helps ease the pain, even for just a moment.

Anytime I really need something that has to do with my pain, she is willing to help in any way possible.  My boyfriend even has someone in another department that is looking out for me.  It’s nice to know that people care, and I am glad that I am not taking advantage of the assistance that is offered.  I don’t want them to think that I take things for granted and that I truly appreciate the things that they do, no matter the efforts.



{February 25, 2010}   Weather and Pain

So the weather is definitely taking it’s toll on me this week.  We had a couple changes to the temperature which causes the barometer to go crazy. 

I was at work today and was doing e-mails which really isn’t all that difficult, but I  couldn’t do it.  I feel very bad about myself because I gave in. 

A friend and I were talking about the girls that were hit by a train and killed and how we felt bad for their family.  I told her that I feel like I have been hit by a train almost daily.  It really sucks. 

I hope that I start to feel better very soon.  To those of you out there who may know what I feel, I hope you feel better soon too.

I know that anu help that I need tonight will be received because although my Lovey does not know my pain, he can understand and see what I am going through and will do anything and everything to help ease my pain.

Always & Forever

Erika



{February 25, 2010}   Oh, the pain today

The pain today is worse than the pain I went to bed with last night?  I don’t even think that when I finally closed my eyes last night, that I gave it 2 thoughts as to how I would feel in the morning. 

I have awoken early so I start early.  I realize this is my body telling me that it’s going to take you longer to get ready this morning.  So I begin. 

I hobble on in to the kitchen because I forgot to set my coffee.  I find my clothes and shower.  Showers usually take the normal person 5 maybe 10 minutes right?  On a morning like this, I’m lucky if I’m done in 20 minutes.  After I’m done here I realize, it’s a little chilly outside and you just washed your hair.  Guess I have to blow dry it.  That’s fine maybe I can straighten it, make it look like a good day.  No, half way through I start hearing the windchimes outside.  They have been blowing all morning but never registered in my mind that it was windy outside.  BAD HAIR DAY!!!

Then we wake the boyfriend, or attempt to anyway.  This is usually a 30 minute battle that I eventually win.  But it is still so damn annoying playing Alarm Clock. 

So today starts in agony, maybe I won’t be on the phones today.  If so, I may just have to leave early.  But, I’m making the effort to motivate myself and go in to begin with.  Usually once I’m there, I figure you’ve come this far, might as well stay for the day!

Happy Day to All!



{February 25, 2010}   Lovey

My Lovey! He is wonderful to me. Most of the time he understands me. He tries to take care of me to the best of his ability.  He basically waits on me hand and foot.  Gets me what ever I want.  Every now and then he gets me a little something that says I love you.  No matter the number of times I tell him to stop buying me stuff, he is still forever bringng stuff back.

I will do anything for him and he for me.  The most wonderful this is that he and my kids get along wonderfully.  My girls love to come over and see him.  They play games, watch movies and read stories together.  He loves every minute of it, even when we have to make them eat their food.

If I were here today without him, I do not thing that I would be able to do half the things that I do.  I don’t think I tell him enough about how great I think he is for me.  I know he just does things because that’s what he thinks is best and usually it is.  I would not trade him for anything in the world.

I Love You Lovey,

Your Baby =)



{February 25, 2010}   Help!

I very rarely ask for it!  You can image my dismay when I do and I don’t receive it.  It’s one of the main reasons I don’t ask for help!

Please don’t misunderstand me.  The one’s closest to me give me the much needed help without evenhaving to ask for it.  But there ae days wehre I may ask only as a last resort to get something accomplished.

The mornings are not a good time for me and definitely not a good time to ask for much needed help, because it’s not there to be given.  So the start of my day is usually in agony and that REALLY sucks.

I’m out of my muscle relaxer medication at this time and need it more than ever.  I didn’t realize how much they really have helped my in the past until I was suddenly out of them.  To top things off, I forgot my much loved heating pad at work, which usually helps to ease some of the aches from sleep, right when I first get up.

Oh Well My Day Begins in HELL once again!



et cetera