Raining Kittens and Going Home....

So---we're home.  Home for me is where I grew up.  Western Pennsylvania--small town called Johnstown-- about 2 hours East of Pittsburgh, known for our floods, steel mills (that sadly are gone) and the movies "Slapshot" and "All the Right Moves".  Learn more about Johnstown here.
I was born here--lived all my life here until I was 38 years old.  About 32 miles was the farthest away I ever moved from the house I grew up in.  The borough is named "Daisytown" no kidding.  They say that when the first people came her to settle the fields were full of Daisies--not sure if it is true or not, but sounds reasonable.  My Great-Grandfather Baiker built the house that my parents still live in.  Pretty awesome history.  The local small graveyard is filled with familiar names and I grew up around people who my Mom had known growing up.  It was the type of place where everyone knew everyone.  Kept an eye out on one another's children.  Heck, I remember playing hide and go seek through about a 10 block radius when I was around 12.  In the dark, with a neighbor's home as base.  Never would I think of allowing Alayna to do that now, with the way that the world has changed.  
I guess you could say I was sheltered... it's a small town.  We had bad things happen of course but nothing like today--and nothing like Virginia Beach area today. 
I love coming home... I love the mountains, the winding roads, the friendly people, drivers who actually follow traffic laws and are considerate.  Things are different here...and I love it.  But it's always hard to come 'home'.
This time the trip was a little different.  Alayna and I headed back up with a late start (I don't sleep well so waking up early would have been a mistake).  We took our time, stopped in several places and even went to Front Royal at the top of the Skyline scenic highway and walked around a bit.   

It's really hard for me to drive or ride for long ways because of the pain that I am in all the time--so the frequent stops to get out and stretch and walk around do help.  It was a lovely little town and actually they were shutting down the streets to have a dance that night...Alayna wanted to stay but I wanted to get going.  On the way back home though we are going to take that Skyline highway and enjoy the scenery and stop at at least some of the 75 overlooks along the way South to home.  
Almost home, about 40 miles to go and we were going through Pleasantville...coming up out of the town and heading into the mountain curves.  I see a small little kitty on the side of the road... small, just a baby... and it's all abandoned homes there, fields and an old shooting range.  I knew it wasn't there and owned by someone.  I drive up about 4 blocks to a place I can turn around and go back, there it was sitting right by the guard rail.  I pull the van over as far as I can, turn on the flashers and hop out to go get it... well of course it ran down the high grass down the hill.  I did eventually find her, she was good at hiding for being black and white and thinking back I'm glad I didn't encounter any other critters.  A little hissing but that was all.  Stopped at BiLo to get some food and litter, warned Maw & Pappy of our new little addition for the time being and finally made it home around 9pm.  (AFTER stopping to get Ann's pizza of course!  Little side note on Ann's--I have been going to Ann's since I was about 15 years old.  Small square cut pieces sold out of a hole in the wall little storefront...owned by the same woman the whole time and the pizza really is the BEST!!  Ann's Pizza Facebook Page check them out and if you are ever in Johnstown--you have to stop!) 
Kitty is doing well, she is easy to get attached to. Very cuddly, loving and has not had one accident at all since we brought her into Maw & Pappy's house.  I was doing my best to try and find her a home--but if the one young woman here doesn't take her I think we will have a new addition to our family.  Scott said he loves cats too and I know he misses his cats that we had to find new homes for when we came back into the active duty Army--housing rules are only 2 pets per home, and we had 2 dogs... I didn't realize that as long as you cared for them and kept your home clean no one really says anything--my heart still hurts for the three cats we had to leave here before moving to KY.  Is it smart?  Ah, probably not.  But I find myself questioning the timing---and thinking that perhaps God put her there at that time for a reason--I mean we could have missed her had we made our trip faster or slower--and she may have even been squished by the time we passed her.  

She is a sweetheart....and she makes me smile.  So we'll see.  


I got to meet my little Willow Grace--such a sweetheart she is, and so beautiful and special, just like her Momma.  

Carol and Willow <3

Alayna picked out the name, "Willow" <3

Precious baby

 I miss the beach though--isn't that weird.  I never used to be a big fan of the beach, but somehow swimming with the dolphins and listening to the waves now is one of my most favorite places to be in the world.  It's so relaxing and sometimes even makes me forget I'm hurting for a moment or two.  We live in such a beautiful area.  

Collage of the lighthouses and scenery around Fort Story <3

My friend, Heather, caught the dolphins at play.  None of my photos are this good--all credit goes to her!!!

 So the weather here is chilly--60-70 and won't warm up until the end of the week.  We were hoping to be able to swim and even though the temperature of the water is 72 and the ocean water is only 63 it somehow feels colder in a pool rather than the ocean.  

Rainy days the past two, and of course being stuck inside the house isn't exactly fun for my 12 yo--and she's driving me a little crazy with her not listening...

 Anyway, hope you enjoyed the latest entry... I always wanted to be a writer of stories--too bad my head is too messed up to actually make sense sometimes... 
Have a great night, I'm going to try to sleep! 

Dreams and Hopes...are they closer than they appear??

So I had my disability hearing yesterday.  I am on my 5th step I believe---I lost track.  Denied all other times by review of my records.  This time I got to talk and tell my story.  Basically they ask what do you do on a normal day.  What your symptoms are, how long have you had them, what about housework, who does shopping, do you drive?  If you do how often?  Then a vocational expert states well this person could work a sedentary job 1-2 step task --know what that is?  Yea, neither do I--my representative grilled her on that one as to what jobs in this area would be appropriate for me to be able to do and basically like putting a pen cap on the top of a pen--and how many jobs are there like that in this area?  um.. none.   And according to my testimony what kind of job would I be able to do?   Um---None.  
So it all depends on the judge now and if he believes what I told him and how I feel and what my symptoms are.  I get flustered in front of people trying to talk and so sometimes things don't come out right, but the representative said I did good... so we have to wait.. 2 weeks or 2 months.. or maybe more.  If they deny that, well then we may have to start all over... we'll see.  

It's frustrating--I hate hurting all the time.  People say do this, or do that, or if you would exercise more..It's like this----

 

It's difficult to find motivation to do things when you deal with the cycle going around and around.  I try not to complain a lot---I don't want people thinking that is all I do and then don't want to be around me--but it really sucks to be in pain 24/7.  Have you ever had a really bad back ache?  Or a migraine?  Or even a toothache... think of having that every day of your life, all the time, no matter what you do...  

I don't want to be grumpy, or turn down offers to go places or be around people, but sometimes I just can't do it... 

Yep, all of the above (of the 7 dwarves) ---so honestly, I'm not trying to be antisocial, or if I get up and stand instead of sitting with the rest, it's not because I don't want to be around you--it's because I can't stand to sit anymore.  It's hard to explain invisible illnesses to people---of course it isn't something you can see.  No one can tell you are in pain, there isn't some sort of test to show that yes, man, that hurts!  And there are other symptoms too--fibro fog---sometimes I can't find my words, sometimes I can't think straight, sometimes I even forget how to get home when I'm driving which yes, is pretty darn scary.  

I've been to doctor after doctor, meds after meds, tried different things as far as aquatic therapy and regular physical therapy... I wish there was a magic button...

There is no way around it. So I know people are going to judge me on trying to get disability.  I'm only 42 years old and I feel like a failure---I am a registered nurse by profession.  I worked in the ER, CCU, home health and long term care for mentally retarded--as well as a school  nurse.  It's not easy profession, but the reward you get when you know you have helped someone is amazing... and I miss it believe it or not.  I can't do that job anymore---I can't think of any job I could do and do safely and effectively.  I never imagined all those years when I was helping others that I would be the one who needed help even before I turned 40.....and I wish I could find someone who cared for their patients like I cared for mine... hard to do though... some don't even believe it's a real thing--all in your head... ugh.  

So anyway, the disability hearing is over and done---and I'm going to Pennsylvania with my daughter to spend some time with family and see my new 'granddaughter' and other grandkids and daughter (foster daughter, but that's too many words to explain when you love someone).  Away from all this madness down here for a while and I hope it helps me to relax... and yet, I still have not packed... I sit here listening to the thunderstorm and looking out the window at the lightening....
I did get the doctor to fill out a form today to put us on the list for a one story home here on Fort Story--it will make things so much easier for me in dealing with day to day tasks that normally now I come down in the morning and I go back up in the early evening to lay down and that's that... there will be more room and plus we won't have any crazy neighbors attached to us that I will have to deal with...   
So I dream... and I hope... and pray that some day I can finally have one day.. one moment without pain...

So for now that's it....not too much writing but I am in a hurry and want to get at least some clothes packed tonight... 
So if you're up in PA---look me up!!!  Would really like to see some old friends while I'm there. 

Friends, Romans... Crazy Women

AHHHHHHHHHHHHH!!!  

That's how my day started off, yesterday.  Door bell rings---the neighbor, her loudmouth friend and some other woman is at my door.  "Do you know what you're daughter did?"  "I'm tired of this, it has got to stop."  "Around back, she wrote in chalk, we don't have to put up with this." 
So I shut the door and lock it, walk to the back and go outside....  "A" had written "I HATE YOU" in front of the neighbor's gate on the public sidewalk in front of the parking lot.  
I said I did not know she did it or it wouldn't be there.  "WEll you only have one child you need to control her." (this coming from the Loudmouth friend I'll call "D") 
"I'm going to housing, command and calling the mps' to press harassment charges, this has got to stop, my daughter shouldn't have to put up with this, your daughter rang the doorbell every 5 min for 6 hours (which she did ring the doorbell but it couldn't have been that much!!!), and she screams when she is riding her bike and it makes "M" cry and she knows it upsets her and does it anyway. So I've had enough and I'm going to go to housing, command and the mps."  That came from "C"  paraphrasing...
I told her go ahead.  When I found out about the doorbell I told A to stop it and made her write an apology which we taped to the post beside C's shed because she told us way before this at the beginning of it all "You leave me and mine alone and we will leave you and yours alone.  I'm calling this friendship over."  So I didn't risk taking it into her door...
Anyone can scream riding their bike--people do it all the time... 
and I made her scrub the sidewalk off and she is punished for what she did.  

 
Confused yet?  If you don't know the whole story--C used to be what I thought was a very good friend, looking back now it was mostly a one sided relationship and I was clearly a throw away friend.. it's amazing how you can go literally from being awesome one day to being not worthy to even talk to the next.  

For the past 18 months we've been friends---how did we meet? Officially it was earlier but when we became good friends was this:  Well her son is autistic, he was out waiting for Santa to come around in the fire truck--and they were throwing candy out from the truck--he didn't get what he wanted because the other kids jumped into the mix and took it--he was very upset, crying throwing himself to the ground and about 2 blocks from their home... I went up and carried him to the house because C was pregnant and I didn't want her carrying him--went and got candy from our house and gave it to him and he settled down.  Over the time I have done many things... always taking them food because certain things I make too much of or knew she liked, took her daughter to co-op because C was going to school that day so that M could go.  The very first day I got my first lidocaine infusion for pain management I watched her kids because her older son was going to school and she had no one else she 'trusted' to watch them and she was also going to school. So I don't even know if that would have worked had I actually rested and relaxed when I came home. My husband cut her grass because her husband was deployed... I Jumped her smart car, not once, but twice taking everything out myself and if you know where the battery is in a smart car it is a pia to get to--under the floor of the passenger seat and you have to remove this big thing of foam to get to the battery--yet I did it, and then she accidently shut the car off when I had everything back together and I had to redo it--keep in mind I am in pain 24/7.   
I never minded doing anything for her, because she has a bigger family, her husband was away and most importantly she was what I considered a friend...

  I have no idea what started that wedge, because it had started even before the 'incident' that caused her to call our friendship over.  I want to say that it's because she started going to church and I didn't go. We had started looking for a church to attend together, and went to a few, however she went to WAVE and was hooked.  I can't stand a lot of noise and huge crowds, if you know WAVE you know that is exactly what it is.  I have a hard time going to church, my back and legs hurt all the time--non stop.  When sitting for longer than 15 min it makes it even worse and it's hard to even walk sometimes after--so I don't go as often as I would like to--and when I do go I've chosen a smaller, more family like atmosphere to go to.  She never said anything but it was the comments about coming to church and then she offered to get my 12 yo daughter baptized to HER and didn't even ask me.  She has done things too--she trained my daughter and started her love of running, she took A to Disney for the Princess run down there---(and on the top side that looks like a great thing to do, but she never once asked me if I wanted to go along, and the whole trip was nothing but stressful for myself and my daughter--including episodes where her older son thought he was in charge of her and trying to tell her what to do, when I entrusted C to be the one who was taking care of things.  My daughter was left out of many things on that trip--including not even being asked if she wanted to dress like the 4 other girls who were all dressed the same and so A stood out, she called me many times crying from down there, and when they got home C never said a word to me--she threw our stuff out of the van and that was it...)  She helped me get together stuff for my new 'granddaughter' although I paid for a new car seat for her son in payment for it.  I won't go on and on about it, but just a background, that yes, indeed I thought we were great friends.... Then comes the Shamrock run--and where we live they close the roads down on post for the runners to run through the post.  Roads are blocked, access is limited to get out or in... so another friend of mine was upset because of it--and voiced her opinion.  Keep in mind this friend's family was in because her husband was deploying in a few days and they had wanted to go somewhere.  So she said how difficult it was and she was frustrated. So the bashing began on her for 'oh it's only one day, there is no reason to complain' from various sources.. she apologized even saying that it was a bad time for her and normally it wouldn't have been so difficult for her... Not having any compassion for that and wanting to keep it up,  C posted about how this inconvience for some was a charity and raised money for a good cause and basically wasn't very nice about it.  On my own FB page I was talking about how much of a deal was made out of what my other friend said and how one of the people responsible for the bashing was a friend who also claimed to be a Christian.  Well there ya go.. I said the wrong thing. Only because she always would bring up the Bible and how you are suppose to follow it and do things by the Bible. She texts me the next day--"Are you talking about me in your status on FB?"  I didn't lie--I told her yes, I was, because I didn't understand how she couldn't show kindness to someone going through all that (when we are all military wives and have been through deployments) and that I may not go to church all the time but I do know that and to ask  yourself what would Jesus do---and told her I was doing school with my daughter and didn't have time to talk about it more right then.  She returns a message and says, "I call this friendship over.  You keep you and yours away from me and mine."   Oh, she did say that when I asked what would Jesus do---and she said whatever the Bible says..Okay, so what does the Bible say about conflict????   Matthew 18 15:17  "If your brother sins against you, go to him and show him his fault.  But do it privately, just between yourselves.  If he listens to you, you have won your brother back.  But if he will not listen to you, take one or two other persons with you, so that every accusation may be upheld by the testimony of two or more witnesses, as the scripture says.  And if he will not listen to them, then tell the whole thing to the church.  Finally, if he will not listen to the church, treat him as though he were a pagan or a tax collector. "
Now, since she told me to leave her and hers alone, I did not try to speak with just her about this.  There was an opportunity for her to speak to me with two other witnesses and she refused, saying she wasn't dealing with it.  And now she brings someone else to attack me about a problem she should have brought to me. 

I know her--I know how she is, I listened to her many times tell me stories about other people, --various stories about people who tried to commit suicide, about people who drink and party too much, getting divorced, don't take care of their kids, how they are controlling and must have things their own way.  Why she even told me stories about her now best friend and how she couldn't stand her walking into her house uninvited, even walking up her stairs into her bedroom without being invited while C was napping, her(D's) house is so filthy it makes you want to puke when you walk in (that is a personal experience in trying to help C while she was caring for the other woman's dog one time.)  How she doesn't pay attention to where her children are and the bad kids that they hang around with---whether any of it's true other than the house I seen and smelled for myself I do not know, I only know what C told me... and now they are best friends...  D told me at one point that I should 'control my daughter, you only have one!!!"  I asked her like she controls hers?  She said what do you know about how I care for my kids--my response was I know nothing about you other than what SHE told me about you (meaning C).  D went on to say, well what did she say, open up your mouth and tell me.  I told her that no, I wasn't repeating everything she said, because the Bible says you are not suppose to gossip and I shouldn't have brought it up.  C says, "I Just love how you throw the word Bible around.  Christianity is not a weapon."  I told her I wasn't using it as a weapon, but as a guide.  
So is that using it as a weapon?  Was I wrong in doing that?  Because she has me questioning everything I think it suppose to be right.  
And you know something?  She KNOWS I have fibromylagia.  She also KNOWS I have a hard time getting my words out of my mouth right especially when I'm being attacked and stressed and upset... so that tells me she just doesn't care.. she didn't just try to talk to me, or wait until DH  was home--because this was at 10:30am--she could have said something when he was here, he is a parent of A too--but she chose the coward way out attacking me with 2 other women beside her... She allowed D to attack me over many things and when I told her she has nothing to do with this stay out of it and shut up--she says, "Well I am involved, you involved me when you deleted me off of your page and because she is my best friend."  (I run a FB page for our community where we live---there is also a disclaimer that I have the right to delete someone who hurts my family because we all know not everyone gets along--and it's my page, I can delete who I want--I don't just do it to anyone, there are some people on there that I don't talk to or get along with that great, but they are there because they have done nothing personally to me.  This woman is not someone I would ever consider a friend--anyone who lives like she does, talks like she does and raises her children like she does would NEVER be someone I would want around me or my children. I never liked her from the first moment I met her and the last straw was this mess and her being C's BFF---Oh and C deleted herself, I did not delete her.  She deleted and blocked me from FB when she called our friendship over. 

I can only hope that the people around us will be wise enough to see through her words when she tells her twisted truths of what is going on...  I try to to live a life where I am kind to all.... I would do anything for anyone, and only would like to be treated as I treat others...

Okay

So-- I've always wanted to just be kind to people--I'm an RN as profession and I loved when I was able to care for people when they needed help.  All I expect is for others to be kind also and not waiver from that Golden Rule...Wouldn't the world be a better place if everyone just did that?
I'm not perfect, I DO NOT claim to have done nothing I shouldn't have.  There are things that I wish I could say I'm sorry about....

But that time is past... and now I'm not sure what to do about the situation.  It is so frustrating when people you thought you knew really are not who you thought they were.  AND the fact that they live next door is not better for the situation.

I'm not condoning what my daughter did.  She was punished for the doorbell incident, made to write an apology,  she was also made to go scrub the public sidewalk and there was no point in saying sorry because that was after she threatened us with harassment--so I'm not taking a chance or giving her the opportunity that even thought she was saying sorry it was just something else to upset her or her children.  We have talked to her to explain that yes, she hurt me, but that it's time to move on, to just act like they no longer exist in this universe, ignore their presence, their words, anything to do with them.  I've done my best to reflect on this and what I've done wrong and my part of it, I'm trying to let it make me a better person, someone that I can be proud of and truly say that I am following what I really believe... that things should be fair, that people should be nice to one another, even if you don't like someone you can still be kind--it doesn't hurt anything.  I said (or rather) typed the wrong thing, I wasn't given a real chance to explain it all and the person that is on the other end knows how my mind doesn't work right sometimes....and apparently I was not important enough in her life to give 'our' friendship a chance.  TO Forgive.  But God knows what he is doing.. I do know that.. because her and the people she hangs around with and calls her best friends and says "I love you" to are not someone I would want in my life anyway.

However, this does not mean that I will allow someone to threaten and attack me.  Talking about something is one thing--threatening and saying that you are going to go to the mps over something a 12 yo did that did not hurt anyone physically and was stopped as soon as we knew about it---well that makes no sense.
So for now, I'm keeping documentation of every time her kids crash into the living room wall and sounds like they are coming THROUGH the wall, how she waters her front yard and has a hose that makes half of my front porch all wet so I can't even put my outdoor furniture with cushions on it out there, how her grass and the weeds in her yard are now up over top of the dividing wall to our yard and now coming OVER into our yard... not to mention the grass that grows at the fence line that comes into our side at the height of 8-10 inches because she doesn't cut them (which is WHY we have plywood up against our fence--because our dogs eat the long grass and then throw it up..) ---I'm keeping track of it all... she wants to play this game I'm not going to roll over and just take it.  I've said nothing to her all this time for these things because we were friends, and friends just let stuff like that slide so you don't mess up the friendship--but now, well now.. it doesn't really matter does it??
That's all I'm going to say about this right now.   Some may say that I shouldn't even have done this--but I know from what is getting back to me that she isn't telling the whole story...and I hope that those who truly know me know that my heart is good and I would do anything for anyone...

Cards and stuff and frustration....

Sometimes I feel like a failure.  Certain days are worse than others, but today is one of those particularly bad days.  I get so frustrated with our 'stuff' in the house and my lack of organizational skills I'm ready to pull my hair out. 
It is better than it used to be--but I still am not very good at finding places for the things that we decide are important enough to keep.
Like cards--what do YOU do with them all?  Birthday, Valentine, Anniversary, Mother's day, Father's Day, Halloween---I can't bring myself to throw them away because well, someone paid good money for them, they have a good sentiment in them.  Plus, looking back on the people in my life that I have lost (like my Gram & Pap Uhl and Gram Stormer) it is a touching moment when you look back on what they wrote so long ago...
But seriously--I will never have that 'house' that is beautiful and looks like it was decorated by a professional.  Way back in 1992 before kids and stuff and in my first home--everything had a spot, then you accumulate...ugh.
I always say that my house isn't dirty (really it isn't--dusty maybe, cluttered--yes, but not dirty) just cluttered but it still makes me feel weird if someone is coming to visit.  I promised myself though when we moved here I wouldn't let that bother me to the point where I wouldn't have friends over or invite people inside...so I do---I should more I guess. 
So--what does this mean?  It means if you come to my house plan on meeting our dogs, and our clutter...and I guess if people like the person that you are, they will accept you as you are, right? 

It doesn't help that doing things like bending and sitting on the floor to go through things to GET organized only makes my pain worse.  I know that prevents me from doing everything I would really like to.  Not to mention the lack of focus in my head, so I go from one spot to the other, to the other, never getting anything completed.  Sound familiar?

Oh well, we will muddle through and get by I guess.

I tried looking around to find a new doctor today.  One that can follow me and perhaps find some sort of continuity with my care instead of going to a different doctor each time.  It is sort of like rolling the roulette wheel hoping you get the right color.  Because you just never really know until you go... and in order to go I have to switch to Tricare Standard to pick my own doctor, which is a little scary to tell the truth.  So wish me luck on that task!

I hope I can be strong--I'm trying to be.  Trying to get to a point where I just know that the pain is going to be there and deal with it...because I guess eventually that is what I am going to do.  Either that--or drown.

So that's it for now... going to go watch Survivor and then go to bed.... hope everyone is having a good night.

So--two posts in a year and 1/2 not bad right?  Ah, I started this when another friend of mine started a blog and thought that would be an awesome way to keep track of things--post them on here and they are there forever--easier than writing it out in hand because I can type quicker, well then I forgot about it--so it sat here.  I like blogs--if people want to read them they have to search you out and they can't complain if you are saying this or that because nothing is making them read it--right?

I've been having a hard time these past few months.  Not only with life in general but in dealing with the day to day pain 24/7, fitting people and activities into my life and changes in who I thought were my 'friends'.

Pain management is no longer following me.  I tried their treatments of water therapy, IV Lidocaine infusions (yea, real fun getting stuck 3-4 times for an IV each time because my veins suck),  and Savella---yes, I broke down and tried it--was a 'last resort' option.  Water therapy was nice when I was in there--but I have anxiety issues with driving in this insane traffic and the office was 30 minutes away with no traffic---so it was not helping in fact was making things worse because of the increased stress. 
The IV Lidocaine infusions did absolutely nothing.  I felt a little fuzzy when it was infusing but that's it.. no change in any of the pain I feel daily.  The Savella--I had to titrate up to the dose that is recommended and when I got there I was on it about 2 weeks and couldn't tolerate it anymore.  It was literally making me scratch the skin off my legs because I was so itchy.  So that's it.  Pain management says they have nothing left for me.  I've already been on all the drugs that they try (Cymbalta, Lyrica, Flexeril, the Lidocaine and Savella) so they want me to see a nutritionist because if I lose weight and start exercising it will "all go away" and another rheumatologist.  Both in Portsmouth--so both about 40 min away and through tunnels and more stress.  So I am in search of a good doctor that I can see near me and will be switching to Tricare Standard.  It's frustrating seeing different doctors each time I go to see anyone.  Telling the same story over, or trying to because they want you to remember it and not go off papers and since my memory is shot sometimes I don't get things right, so it makes it look like I'm either trying to hide something or I'm crazy... frustrating for sure. 

It's hard trying to get people to understand how I feel, and then if I say something I feel like I'm always complaining about it.. but it's ALWAYS there, and I don't know how to not feel hurt, frustrated and bitter about that.  I know others have it worse and have better outlooks and motivation and attitude than I do--but you know what?  It doesn't make it any easier.  All the time it hurts in my lower back, my legs/knees, my ribs, my elbows, and the occasional stabbing pain in my head.  All the time I feel lost and like I don't know how to find my way back.  It's not normal to feel pain all the time without a reason--I mean I didn't suffer trauma or surgery or an accident--it's just there, because my body doesn't read the nerve messages correctly.  There is no 'marker' telling you where I hurt, so if you look at me I look just fine---when in fact I'm so far from fine I don't know if I can find my way back sometimes.  A wonderful woman by the name of Christine Miserandino describes how having an 'invisible illness' is to a friend of hers here:  The Spoon Theory 

So--I don't always say things in the right way--I try to make sure people know that about me because I'm not trying to give myself an excuse but there are many times I can't come up with the right words when I'm talking, or I say what I'm thinking before I get it straight in my head... sometimes I just can't get it out at all.  It's scary--and I'm really hoping that it's all related to the Fibro Fog--because the other alternative is worse.  I have relatives on my Father's side that had Alzheimer's.  Some at a quite young age when dx.  Now that--I don't know what I would do if I had that dx.  I've watched people in different stages and it is so sad...(Think--'The Notebook" and you get it?)

So sometimes it's hard finding a friend who will care enough about you to forgive you when you screw up, or when you can't make it to an outing because you hadn't slept all night from pain, or just don't feel up to being around a crowd.  And that is a subject for another time.....

So there is a bit of my rambling mess...

Updated Fibro Doctor appt... at Pain Management.. long version

by Milissa Stormer on Friday, November 18, 2011 at 3:31pm ·

Well, the visit this morning was more promising than I had hoped. The doctor actually seems to care, is quite knowledgeable about Fibromyalgia and spent like almost an hour talking with me, going over things, explaining things.. planning a course of treatment and so forth. I have an appointment on the 30th for an intravenous infusion of lidocaine to try and decrease the pain--we'll try that for 2 months and then I go back and see him again. I am more encouraged than I have been in a long time just because I didn't feel like the doctor thought I was crazy or something!! That right there is a plus!
And I know that there are things that I can do that would help me that I am not currently doing---eating better for one. I've had a lot of people give me information on the ways that eating 'right' will help heal you--which ok, I get that,... and I'm sure that is true--unfortunately though it's like a circle--I hurt a lot, so I don't necessarily want to cook--by the time I do I'm paying for it in more ways than one--Scott cooks when he is here but thanks to the Army that isn't too often for any meal when you work 5:30am-7pm. The cost of food is twisted in that it is more expensive to eat healthy (not that we buy all garbage but some of the prices are insane!). I also know that exercise helps, but again, I need something to get me over that point of hurting so much all I want to do is crawl in bed (oh, but then I can't sleep anyway!) So I'm trying this--and we'll see what happens from here--hopefully it will get me to a point where I can have decreased pain enough to be able to increase activity which will help decrease pain---got that?? ;)  Oh--and I like how he put it when we were discussing about depression/anxiety and chronic pain---would someone walk up to a person with diabetes or high blood pressure and say just will it to go away, suck it up, it will go away all on it's... own....there are some things you can do to help, but it's a neurochemical imbalance somewhere a long the way that messes up the pain receptors... making you think there is a reason for pain when there is no evidence of such cause to be found. (For example--my lower back hurts, all the time--worse when I Stand for a long time or sit for a long time--it was horrible by the time I finished writing two verses on a cake last night--but there is absolutely no reason for it to hurt--I've had MRI's and x-rays and everything is normal---almost wish it wasn't so they could say--hey, this is wrong and we can fix it!)

The "F" WORD

(I wrote this and posted on Facebook on November 28, 2010 will be doing a follow up post soon on here) 

 

The "F" word. (Not THAT F word!)

by Milissa Stormer on Sunday, November 28, 2010 at 10:16pm ·

So are you thinking about 'that' "F" word? You know, the one that people sometimes cringe to hear, others use it like it's nothing and even others think it is a joke. Yea, that "F" word.. right? Well...the "F" word I am talking about it Fibromyalgia. Believe me, if it's your diagnosis you don't want to hear that word, some people think it's nothing, not a real disease, not a real problem. "Those people are just lazy, they don't want to work, they aren't in pain, they don't have any real problems." No...you can't 'see' it, and you don't get a positive result on anything to show you that you definitely have this disease, dx, syndrome, whatever you want to call it. Doctors, friends, strangers, even family have no way to really know what you are going through. There isn't an x-ray or MRI that you can have done and give the result that you in fact have fibromylagia. It is more a diagnosis of exclusion. Meaning you go through all sorts of different tests---xrays, MRI, bloodwork... whatever you want to add to that list... and nothing shows up as you having a real problem. So is it 'real'?

I don't know, sometimes I feel like I am going crazy. Sometimes I wonder why it is that I have to hurt every stinking day. I wonder, maybe it's all in my head, maybe it's because I'm lazy... maybe I just want to become a drug addict on pain pills so I make these things up to try and get more pills. Yea, the pills you get! Man, those are some GOOD drugs! Lyrica---makes you feel like you're walking around drunk all the time, makes some get double vision and for sure you can expect to gain weight no matter how you eat! Savella---new one on the market. Doctor wrote me a prescription for this and gave me the trial packet---you have to do a gradual increase of the meds. I had no clue about it so I came home and did the google things... first thing that popped up was a petition being signed to take the drug off the market---it just causes small side effects.. you know, puke your guts out, make you have no appetite, oh wait.. it raises your heart rate---170 or so, no big deal.. and your blood pressure! Also can damage your kidneys and liver. People have died.. there are more bad good reports than good out there about it.. makes me scared to take it.
And wait!! There is more!! You're pain isn't really 'pain' it is just some sort of messed up wiring in your head that causes you to feel pain when you have no reason to do so. So we're not going to give you any pain medications, and if we do it won't really be enough to make you pain free---ever. Not even one day you can pick and say, "I don't want to have pain today so I'm going to go ahead and take this." Because you know, pain meds have side effects----you can become addicted--well dependant when you're trying to get rid of pain and not doing it to get high. Your body builds up a tolerance to it and you have to take more... hum... you know... I think I remember hearing something about that with the 'regular' meds that people can take for this... sometimes you end up having to take more.. or if you stop taking it you have to stop slowly because of side effects/withdrawal.
I don't know.. me, I'd rather take a drug that I know has been around for a long time and I know I've taken with no side effects... than chance destroying my organs, or killing myself.. (yea, I forgot, that Savella also has a SE of suicide attempts increasing.)
So what does it feel like? Well, lets see... When I wake up in the morning my heels and feet are so stiff and sore you would think I had run a marathon in my bare feet on broken glass. Walking down the steps is real fun...Sometimes I go down like an old woman moving one foot down to the step at a time. I have pain all the time in my lower back, almost near where you sit on really---and the more I sit, the worse it gets... and the more I stand the worse it hurts...
If i am trying to hang up clothes on hangers---well I have to do a little at a time because the repetative motion about kills me.. and feels like I did 1000 push ups and I have muscle failure. Just from hanging/folding clothes!
Then there is what they have termed 'fibrofog'. This is where you forget things all the time, have a word in your head but it doesn't come out your mouth... trying to talk to someone and have a conversation in person sometimes is REALLY difficult for me. Typing, writing.. I can do that because I can take the time to figure out what I want to say, how to say it and if it doesn't sound right I can erase it and redo it. Not so in real life.
Being in pain makes me edgy, so little things bother me....and I get upset real easy at things I probably shouldn't be.
Small noises make me feel like someone is running their hands across a chalk board, smells make me sick and get a instant headache (unless it's food smells---vanilla, cotton candy ect).
Nothing takes the pain away.. heat, ice... rest... exercise....it's just there ALL THE TIME. It is depressing really---to think that I have to deal with this another 20-40 years. I get so overwhelmed with sadness sometimes that it's hard to even want to get out of bed... hard to stop the tears once they have already started. Motivation is nill.
I don't honestly know how my family puts up with me... but they do, they love me anyway and put up with my quirks...problems.. whatever.
SO! that's a little bit of what I go through....if you'd like to learn more about what is actually considered part of the symptom list go here----> http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm
I can say that I probably have about 75% of these symptoms.....
So if I sound like a screw up, stupid person when you meet me, forgive me. I am far from stupid. I am a registered nurse by profession and always did well in school----it's quite ironic that I used to take care of people who were hurting physically or mentally...but now I don't know what to do to help myself....
I'm terrible talking on the phone... and sometimes can't think of the right word when we're talking in person....sometimes my days are worse than others and I may cancel doing something because of it.... sometimes I am lucky if I get 3 hours of sleep.... so it's hard to function....
There you have it... my 'f' word story....
:(