Change

As I sit here void of all energy, I am trying to find a message I would like to share.  I am here, but lack a sense of actually being here.  I forced my self out of bed this morning as my body was stiff, sore, and cracking.  I have a headache that forces me to realize that today is "real".

I am on my way to taking care of myself!  I feel I will be able to start taking action to do more then just blog and share my inner thoughts and feelings on my life.  It has been a long time coming, and I will be able to move forward soon.

The weather is changing once again, and I feel it in my hips and shoulders/neck.  It is nagging at me terribly, but I ignore it as to say, just go away!  I hate when the days start this way, but I do my best to just keep moving.  The pain circling from my shoulders down my scapula and around my ribs, takes my breath away.  It makes it hard to ignore.

My daughters support system has grown, and her spirit has risen.  The stress on me is being lifted as this happens.  It feels good to know that she will be OK, and I can rest.  My body is telling me to rest.  The stress flowing out of me, releasing the grip it has had on my muscles.  Everyone knows what stress can do to a body.  I refused to allow it to stop me for so long.  I believe in moving forward, never backwards.  Life deals you enough problems, why put yourself in a backwards position.

My daughter is what I used as a distraction, to keep going.  The Love I have for her keeps my mind strong and able to ignore my pain and push on.  When needed I take time for myself as to regroup to continue on my journey.  For she is the one I reach out to for understanding, venting, and love.  I cherish her more than life itself, and would lie down my life for hers.

Change is coming!  A good change.  Life is going to be better, and now I must grow my support group to continue on.  I am excited to move forward to see where I end up.  I feel happiness coming over me.  It has been a long time since I could say I was happy.  It sounds so wonderful.

I hope to continue this blog, but being able to educate more then having to vent my frustrations.  Although venting is good, I look forward to adding more information!

So today is a good day emotionally.  I don't know that I have ever said that in my blog!

Continuing to struggle!

Mental clarity escapes me.  I feel like I am on the outside looking in.  I can't seem to focus, and I can't reach my own self.  I am in such a fog, that I can't remember the simplest things.  Conversations are like they never happened.  I am not in control and am feeling desperate to find some thing to hold on to.

Back on my meds after a day and a half of missing them.  I forgot them at my daughters for just one night and had to wait until midnight the following night to get them back.  I became violently sick.  Not sure if it was from missing the meds, or flu.  I still feel sick, but got my meds to stay down.

I feel the stress in my life is taking over and I can't stop it from robbing me of good days.  I continue my best to fake my way through, as to not stress my family out more then they are now.  I realize that the stress is key to my flares, and the fog that I have been in.  But I am unable to relieve it at this time.  I do my deep breathing exercises, which help, but I seem to have to do it constantly to keep myself calm.  It is not reasonable to do this 14 hours a day.

I struggle as I try to stay positive for myself and others.  I pray that there will be relief soon!  I am unable to focus on things that I should be doing for myself, as I can't put two and two together to make four!

After seeing the doctor last week, I have yet another thing that is wrong with me.  So a referral to a neurologist is where I go next.  Possible botox injections in my throat/neck, and if it doesn't work, removal of certain muscles in my neck.  Scary, and I haven't even really thought about it until just now.  One more thing, and I can't even remember what it is called.

I had four injections that day into my shoulders!  Two on the top and two on the side of the spine in upper shoulder area.  It was very painful, but I took it like a trooper even though the pain traveled from the trigger points!  At least we new we got them in the correct area!  I hate cortisone shots, even with the lidocaine they hurt.  And the spasms get intense a few days to a week later as it is starting to work.  I had to set up a second appointment for six weeks out to go back and have four more shots!  Not looking forward to it that's for sure.

My husband still does not understand anything about my diseases, syndromes.  He is not willing to learn either.  It bothers me that he doesn't go ahead and learn about it instead of constantly saying, your always sick.  Yes, i am.  And stress is why I am constantly sick and hurting.  I have tried everything to get him to learn about it, but he rolls his eyes, and I instantly shut down as I feel it is pointless to even try.  He doesn't want to hear about it at all, and it cuts into my heart and I feel alone.

I give up at this point.  No sense in making myself feel worse by trying to share and being ignored or ridiculed about it.  I so desperately want him to understand or at least try to have a bit more compassion, and realize that the little things he does, like rolling his eyes, or sighing, or making comments about me always being sick, affect how I feel physically, and emotionally tear me apart.

He is a wonderful man, don't get me wrong, but he is actually incapable of understanding.  there is more to it then I care to share, but it is very hard for him to understand emotion.  I love him, and yet feel alone at times.  it just really saddens me.

My daughter is finally going to get the support she needs starting tomorrow.  This should help me by knowing she will have more support!  I am so happy for her.  Her life will change in so many ways, she just doesn't know it yet.  But I have faith in her and she will grow to love herself, and see herself as I see her!  I am so proud of her.  She is scared right now, and stressed, but I know she will feel better, and feel as proud of herself as I am of her!  I am excited to see the transformation that will come from having the proper support system in her life.

At last, I am hoping for less stress in mine.  I know it is right around the corner, I just need to survive it a little longer!

Mental Confusion

As I continue on, I struggle daily with the pain and confusion.  I can't remember daily conversations, nor a conversation I may have had a week ago.  It is very frustrating, and makes me upset and sometimes angry.  The mental confusion I have had is so bad, and the pain just makes it worse.

I struggle with my relationships.  Half the time I can't remember anything that was said and it becomes frustrating for everyone involved.  My illnesses affect everyone close to me.  Sometimes it puts a barrier between that I have to chip away at to make them realize that it's really not my fault that I forgot to make a phone call, or I was suppose to meet up with someone.  It saddens me and I find myself in a depression.

The fog i am in has lasted a long time without clarity.  I am in this world, yet I feel like I am on the outside looking in.  Trying to get past it seems impossible.  Yet I push on knowing that I can't just give in to it.

Today is the day i finally go see my doctor.  Thank god!  Yet I am scared at the same time.  No one seems to have the spasms that I get.  The ones in my neck that make me feel as if I am choking.  It scares me that something else is wrong with me.  I feel like a hypochondriac when i have to tell my doctor that something else is wrong.  I know he believes in me and trusts me as far as something is wrong, but I know the nurses don't understand, and I often get looks from them like, oh what is it now, as I walk through.  It is humiliating for me.

Sleep has not been on my side lately, and I am so tired. At times i wish i could lay down and just sleep the day away.  That would never happen for me.  Too much pain!

Well I suppose I need to cut this short and go see my mom as I promised.  Then to the doctor at one.  I hope the visit there doesn't bring any bad news.

LONELINESS

As I continue my journey of life with my illnesses zapping me of all my energy, I realize that the magnitude of loneliness I feel is overwhelming.  It is a loneliness that no one could possibly understand unless you are in my shoes.  I have family and friends, yet I feel isolated.  Afraid to tell people how I feel for they would not understand.  This is what my illnesses do to me.  The lack of ability to understand unless you are going through it as well is impossible to explain.  There is no way to explain the way it takes away your life, and isolates you to keeping your thoughts to yourself.  When you are ill and suffering the need to share is excruciating.  But because of lack of understanding, you are unable to share.

I've been splitting my time between my daughters home, and my own, yet still feel isolated. I try to explain, but the stress of it all is too much.  Why worry someone else when their stress is too much.  I do not want to be a burden, nor make others feel they need to worry about me.  I keep it to myself, it's best that way.

I have recently been battling yet another symptom, that has been increasing in duration and frequency.  I do not know what it is from, but it takes my breath away.  The strands of muscles that run from the back of your head down and across your throat keep spasming.  They are increasing in strength and duration, and I feel as if I am being choked yet I am still breathing.  They scare me horribly.  Painful yes, but I can handle the pain, it's the emotional panic it brings on that is hard to deal with.  What happens if it does choke me one of these times and I am not able to breathe?  It is happening so frequently that while sitting on the couch at my daughters this week, I actually screamed out, scaring her as well as myself.  I have never done that with anyone else around!  She was like "YOU REALLY NEED TO GET THAT CHECKED OUT!"  Yes, I know.  But I fear having it checked out as well.  What if something else is wrong with me?  Something else to add to the list of diseases, or just another symptom of one?  I don't know, and at this point, I feel like I don't want to know.  I do have an appointment coming up, and I will mention it, but I am still scared about it.

I have been so stressed with life and family issues, that I have little time to think about myself.  I know I should be putting my health in front of everything else, but it's not that simple.  I try, but it just doesn't work out that way.

If I were to live my life putting myself first, I would be lonelier than I am now.  And honestly, that is not where I want to be.  My symptoms isolate me in my mind and body.  Trying to manage my life around this is what I do.  So when people say I need to take care of myself, I am, in a way.  I focus on doing what I can, even if I shouldn't, because I need some resemblance of control over what I am doing.  Even if it means I will flare as a result.  It is my way of feeling needed, and if that goes away, the depression and isolation would be so overwhelming, that I would not be able to bare it!

It's a matter of "give and take".  I give by continuing to do things I maybe shouldn't, and I take on the consequences of doing those things I shouldn't, hence the pain and emotional break down that goes along with it.  It is a never ending circle, and I am creating it.  But until i feel that others are OK, I will continue my battle.

Last night on my way home from my daughters, my husband and I stopped to get gas.  While he was outside of the car, I was sitting in the car with my head resting on the back of the seat when this couple (young) came out of the station and the girl kept looking at me.  I was only half oriented to it when she looks at me and says, "what the F#$% are you looking at you F##$ing B#$%$!"  I wanted to jump out of the car and kick her butt!  What is wrong with the younger generation these days?  If you knew how ill I was, would you still say that to me?  I was shocked and pissed all at the same time.  It reminds me of how cruel people really are, it makes me feel ashamed of our community.  Point being, People don't understand, nor do they want to.  That is how I feel, and that is what makes me feel so alone in this journey. 

Do people in the medical field understand how isolating these conditions are?  Or are they just concerned with treating the pain?  The pain is not what kills us, it's the isolation, and feelings of resentment, and lose of a life we once had that is causing us to give up and give in.  To the point of do what ever you want to me, I don't care anymore!  I am not an emotionally strong person anymore.  At least I don't feel like it.  It's because of all the crap in my head that I don't share, nor do I want to share.

For me, giving in is not an option!  although I walk that thin line at times, I continue to go on.  I feel if I give in, then others may give in, and I don't want that to happen.  I must go on no matter what happens for I am a survivor, and I will get through whatever comes my way!

Fibro-flare!

I am so depressed.  The ugly head of fibro has been rearing it's head, and I can't think, focus, or do anything.  I am in so much pain, and under so much stress, and then I am sick on top of it!  I need an escape, I can't handle it right now. 

My eyes are unable to clearly focus, as my right arm won't do what i want it to do.  The pain in my neck and shoulder are too much to bear.  It has zapped me of all energy leaving me open to all kinds of invaders to attack my mind, body and soul.  I struggle as I am typing, as to find the keys and words.  I feel like giving up, but I know I must go on.

The stress I have been under, and feelings of grief and loss recently in my life that I have not dealt with.  It was hanging as a cloud over my head which has now released the stormy rain.  Every drop pelting me as to say deal with it!  I can't.  It hurts too much.  My emotional state is unstable.  I feel as though I may lash out, or start crying and never stop!  I need to be strong for a little while longer, but the pain has reached the scale of no return.  I am not just talking about the physical pain.  I will deal with that, but the emotional pain I am in right now is excruciating.

I am once again dealing with the death of someone I loved very much.  I am struggling to make sense of it all.  I am thankful for being able to talk with her before the unexpected happened.  Yet I have this sense of guilt that I should of been there more.  I miss her laugh and her smile!  I sit alone and I can hear her laugh, it makes me smile.  I know her struggles are over now and she is with her mother and I am sure she is happy, finally.  We were rebuilding a lost relationship that we had once upon a time.  I was sure she was going to be ok.  I guess you could say she is ok now.  But I worry for her 9 year old daughter she left behind, her sister that has an enormous sense of guilt, and the rest of her family that she was out of contact with.  I hope that they will be ok.

I recently have been in contact with friends of hers and my past.  I am thankful to be able to share stories of brighter days past.  It helps in someways, and will reunite what was once lost.
My daughter is dealing, or not dealing with the death as well.  I am stressed about her health.  I worry as the days go by, and she seems frail.  Fighting her own demons, I try to stay strong to be there for her as any parent would.  I'm scared.... I don't know if I can do it anymore.  I am so completely exhausted.

My stress is not easily able to dismiss.  I can't just let it role off my shoulders and move on, yet I feel trapped in it's horrible dismay.  It is pushing me around, poking at me, taunting me. It won't let go, and I feel as if I am going to succumb to it.  I have no strength to climb out, yet I must go on.

As I struggle with my commitment to not taking on the stress of others, I do honestly feel that this is my stress, and that I may need to understand that this is normal stress for me as an individual, and a parent, with extenuating circumstances.  I feel my life can never be stress free, and this is something that I just need to better manage, But I don't know how.  Every time a cycle comes, I get unbearably sick and the fibro takes over my life at the worst possible times imaginable.  But as everyone knows who struggles with it, it will always bear it's ugly head under stress.  So where does this leave me?

I am frustrated as I want to do a support group, which would not only help others, but myself as well.  Life keeps getting in the way.  How do I make it happen when I am in such a state?  Everything in my life is so unpredictable, that I am scared to make a commitment to others because what if my issues get in the way?  If I could get my daughters fathers side of the family to pick up some of the slack in trying to help my daughter, I could manage to have a life of my own and still support her emotionally.  I can't do it alone anymore.

I am sad, and scared, and just down right exhausted.  I am feeling so overwhelmed, and with my fibro flaring, I am no good to anyone including myself.  But I must go on.  I must survive for I can't let the beast take my life!

Struggling!

I am certainly struggling at this time.  All my plans for myself have been put on hold, and my time and energy have been put into my daughter and her kids.  I am exhausted and feel as though I am not helping enough.  She tells me that just being there is enough, and makes her feel better.  This is good then for her, but I am still struggling with my own issues.

I did not call soon enough to have my prescriptions ready for me when I left to go to my daughters house.  Not good for someone who struggles with daily life to begin with.  I went for 3 and a half days without my lyrica.  That was ten doses I missed.  I could tell the first dose i missed that I had not taken it.  It is strange how I can instantly know, but you see, my body reacts negatively the moment it does not have the medication it needs.

Strands of muscles start to twitch and tighten.  The strands that runs across my throat on either side of my neck tighten, and then spasm.  It feels as if I am being choked, and it is more scary then anything.  The feeling as if my oxygen is going to be cut off puts me into a panic!  I start rubbing them trying to stretch the muscles back to how they should be.  It's terrifying, and I cry every time.  I hide myself so that know one can see.  The panic always sets in and makes it worse.  I manage to get through it, then my muscles are sore and very easily agitated if touched.

The pain from my groin in the right side shoots electrical shocks down my thigh and into my calves.  Both sides do it, but the right is much more painful!  Constant, and steady with my heartbeat.  All I can do is stand and sit, maybe try to walk.  But at times it is impossible!  I jerk and quietly in my mind cry out in pain!  I may make a grunting noise and hold my thigh above my knees and squeeze as hard as I can just to get through it!  Trying to alter the pain at least in my mind.

My arms.  What can i say, they are a nuisance to me.  Same thing i grab above the elbows and squeeze as hard as I can, all along thinking I just want to cut them off!  All my limbs, just cut them off!  I may get some relief then.  But definitely not total relief!

My back!  Well what can I say, it never, ever, stops hurting.  It is pain I live with everyday, whether its my shoulders, which is almost always a problem, or my lower back, which is also a daily thing.  It's a matter of how much pain can I handle today.  Not, does it hurt today!  It is 24/7, 365 days a year, ALL the time!  I rate these on a scale of what am I able to do today with how my back feels...  My middle back is inflamed always and from my right shoulder following the scapula and into my ribs, running under my breast in front.  This is intense pain.  It takes my breath away!  Like my ribs are broke or something to that effect.  It is hard to take a breath.  The pain is so intense, I must take slow shallow breaths and focus to get through them.  This usually happens at least once a day.  But this is all when i am on medication!

Now imagine the frustration I have been in for this week without the proper meds?  Constant crying, confusion, no memory recall, and the pain??  Lets say i was a bitch this week.  But I held the bitchiness in and turned it on myself rather then lashing out like i wanted to do!  It is not anyones fault but my own that they meds weren't ready.  I should have paid more attention to the bottles, so that it wouldn't happen.  But my mind has been else where.

Worrying about everyone else has been taking over my life lately.  And the worry is for legitimate reasons!  I know better, and should take care of myself first.  But it is easier said then done.  This week has been hell on me, and yes I am struggling.  Struggling with everything.  Pain, sleeplessness, and fatigue, they have drastically taken over my life!

Did you know that with fibromyalgia, the brain lacks certain chemicals such as Serotonin, which is a neurotransmitter that helps regulate your mood?  And Tryptophan, which is an amino acid that helps regulate serotonin.  And another chemical they identified as substance P, a protein involved in transmitting pain signals from the nerves to the brain.  Seems to me that certainly the lack of all three are connected and that is what they should focus on while looking for a cure.

So basically, something is wrong with my brain and I lack certain chemicals that the brain produces.  Sounds crazy to me.  Then how it affects the nerves in the body, it is so complicated, no wonder it is hard to figure out what to do for us that suffer.  I just know that the Lyrica works for me.  It doesn't take it all away, but it keeps it manageable for me.  They say we feel pain differently, that our pain is more intense.  Maybe, but I can tolerate a lot of pain, and when I complain, it is super bad!

Someday I hope to not struggle so much and I am able to do what i want to do, start a support group!  I guess i will need o push it out another two months.... I want it running by May and have a home town awareness!  After all May is awareness month! 

I will continue my journey trying to reach my goal..!  I will Survive!  My family needs me, as I need them!

My daughter and grandsons!

I love them so much!