I Finally Broke Down

I Finally Broke Down

The doctor that sees me for my fibro gave me a referral to a pain management doctor the last time that I saw her. Needless to say, I have been avoiding calling any pain management doctor because of a couple of reasons.

The first reason is that I just do not want anymore doctors poking or prodding me. The last time I had a shot for pain, it caused more pain. Then there is the second reason and the one that I would like to think is more important. MONEY. Copays, drug costs, and let me not even think about all of the money I already owe to all of the other doctors. Add in the service dog. I just do not know why I am stressed!!

So, after waking up at night and not getting to sleep because of pain, I finally broke down today and made the appointment. I wish that the doctor was warm and fuzzy like a teddy bear. I just hope that the doctor at least listens to me and what I have to say.

I already loved the question that I got today when I called. Where is the pain? Well, I have fibro and it comes and goes, is all over. I feel like she asked me to solve a riddle. Finally, I stated my back, since that is where it all began.

What fun I get to look forward too!!

Color Through the Dark

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As an adult, I love to color. Today, after a meeting with a member of my treatment team, I went to a local store to pick up a blank book. Of course, parts wanted to do so much more than look at a blank book. So we wound up looking at all of the beads, the scrapbook supplies (which I know if I ever started I would spend a fortune on, yet looking is free, and the art section.

I love the art aisles in this store. There are paints of all colors, colored pencils, oil pastels, canvases, and anything else that someone could want. I saw a pack of markers that I would have loved to have had, maybe another day or a birthday present. Maybe a holiday gift or an amazon wish list? Then I saw the coloring books!!

As a child, I liked to color in the coloring books, yet I felt inadequate at coloring. My mom was great at coloring.One of my most vivid memories is of this huge Wizard of Oz coloring book. The front page was of a globe with all of the characters. I was saving that page for last. I wanted to be really good at coloring by the time that I got around to that page. One night I was coloring the book and was told that it was time for bed. I went to bed and forgot about the book.

When I woke up the next day, my mother had told me that she had put my coloring book away. Ok, I thought, at least I did not get in trouble for leaving it out!! The next time that I went to color in the book, i noticed that the picture that I had been waiting to color was filled in. I went up to my mom and asked her why she had colored the picture. She replied that she knew that I was not good enough at coloring to do a good job on that picture. I do not think that I picked up that coloring book again. Even after that she would insist on leaving certain pages in my coloring books for her. I could never live up to what she could do so I just stopped.

Then I was diagnosed with PTSD and DID. How freeing in some ways. I discovered through art therapy that I loved art again. I did not care if my work looked like a 5 year old had completed it, who knows maybe she did? My art did not have to be perfect any longer. I was not perfect. The one motto that I live by now is that my art needs to please me and those inside.

So about the coloring books. Yes, I did get one!! A connect the dot book where each picture has 300 or more dots. Talk about getting my mind off things and then coloring in the completed picture!! Double therapy. Gotta love it.

Nightmares from the Past

Nightmares from the Past

Just get over it! Move past it! That was a long time a go!

All of those statements have some validity to them. I do need to work through what happened to me in the past. I need to admit that my childhood was littered with horrible experiences.
I just did a presentation this morning. I like being able to tell my story, yet sometimes it just brings up so much crap. Sometimes I wished that I had a different mental illness. One that I could just take some medication for and be better enough to function. There are not any medications to take away the memories. Memories of being beaten, thrown and locked outside in the cold, being tied to my bed for hours, being molested by a relative. Those are the images that are burned into my head.
When I walk down the street or ride in the car, I notice people who look like my abusers and I wonder if they were kind to their child or cruel. I will never know the answer to that question.
My friends and family help me to forget the horrors of my childhood. I get to play the games with my kids and watch the movies that I was not allowed too. I get to give them hugs and am more than happy to get a hug from them. I love when they read to me or share about their day. They know that I am there for them no matter what. I did not have that. I do not want them to have to struggle through the same mess that I did. I want them to at least remember some good times from their past and that their mom was there.
My mom was a monster who came after me the moment that my dad left the house. She turned into something else. No matter what I did it was not right. She would always tell me that she was going to get the “rod”. Surprisingly, she seemed to know where to beat me so the bruises never showed. The physical bruises healed a long time ago along with the other injuries. What remains are the ghosts of what happened. The phantom pain in my arms and legs. The pain in my back. The feeling that I am not safe!
I want to overcome these nightmares, yet it is an uphill battle that I do not feel that I am always winning!!

PUSHING, PUSHING, PUSHING

PUSHING, PUSHING, PUSHING

Growing up I was pushed. The first memory that I have is of getting out of the bath and my mom having a magnetic board ready with exercises while the chalkboard on the back had even more.
A’s were all that my parents wanted me to get. B’s were ok and a C was absolutely not acceptable in our home. I would be punished. Thankfully, I was given the gift of being able to read at an early age. That allowed me to get the grades that my parents wanted me to get.
All I wanted to do was dance. Dance was a way to release all of the hurt that had been building up over the week. I know that I was not the best dancer by far. I think I had two left feet, but I loved it. The studio was like a second home to me and it was safe.
Fast forward to today. I still push myself. I feel like a failure because I cannot physically do what I used to so easily do before my diagnosis. So what do I decide to do. Apply for jobs. Here my doctor has a goal of being able to walk for 20 minute without pain by the summer and I am out applying for jobs.
I had an interview yesterday. Three hours of standing meant hours of pain later. I could barely walk last night, I woke up screaming in pain during the night, and as I sit here by body feels horrible. Why do I do this to myself. Because I cannot stop pushing. I think if I just do it that my body will follow along. WRONG!! My body has put up a fight ever since yesterday afternoon.
The good news is that I definitely know that I cannot handle any kind of standing for any length of time. My mind is still trying to grasp the fact that I cannot do as much as I once did. Well, it is at least working on it.
I need to stop pushing so hard and learn to relax. If only it were that easy. If only I did not feel like a failure everyday.
On top of everything, I was really hoping that the money from the job would help to pay off some of the mounting medical bills and help to pay for the service dog that I am getting. I guess I am going to have to figure out another way!! I am just not sure what!

Yay!! I have a Contract!! Now What?

Today started out without being able to sleep, taking a nap, and then taking an unexpected trip with my mom. The outing turned out well/typical of an outing with my mom. She rehashed the same stories of her sister dying, of the blood pressure meds that worked one day and the not the next, and the wonderful way that she has of telling the same story over 5 or 6 times.

Maybe in some way that is comforting. At least she is not the monster from the past. She cares about me in the way that she can and I accept that. I was glad that I could be there for her and once again prove her theory wrong that she could not count on me. She always swore that I would leave her.

As I sat in the car waiting for her to come out of her appointment, I wondered if I was really going to ever get my contract for my service dog? Did they forget about me. Yes, low self esteem is a bitch.

Then, I checked my phone tonight as my husband was looking through the rows of best buy and there was the contract. I burst into tears in the middle of the store and I am not one who cries. To know that I will have a service animal is amazing. I also received a video that the organization had made of me today. My husband is supportive of anything that I need to make me better, yet I would not say he is a dog person. Even he was excited to see me actually walking for the first time in months.

Again, good news-I have a contract. The bad news is that I now need to come up with the money for the dog. Luckily, for me, I know someone who has already stated that she can groom the dog and the organization provides me with the equipment for the dog. There is still the money for the training, vet bills, and care that the dog will need before he/she comes to me.

The figure is not small!! Where is a fairy godmother when you need her? I already have a ton of medical expenses from my trips in and out of mental health facilities and all of the testing that had to be done to determine my illness. My one hope is that some friends and family will be generous. Maybe they will even pass my name along to others who are able to give 5, 10, 20 dollars. All it takes is a little at time.

So as happy and elated that I am that I have a contract, is as scared as I am that I will not be able to raise the funds needed to make this happen!

Sleep is Not My Friend

Sleep is Not My Friend

I am not sure what my sleep issue is anymore. I go to bed at 10 pm. I lie down, relax, read a little. Then the brain takes over of all of the things that I need to do in the next day, week, month. Conversations get replayed. I wonder things like “should I have sent that email” or “what am I going to say at my kids parent-teacher conferences”.
Why can I not get one nights sleep. One night where I do not worry about someone breaking in to the house or something bad happening. Notice the wonderful vagueness of that statement. I do not now what will happen, yet I figure that something will happen. Reality is, the only thing that is happening is I am not getting any sleep.
Worrying to much is definitely an issue along with some deep seeded events from my past. Like the time I was alone in my home as a child when someone tried to break in. Not a fun memory.
I would say that I would like to try to rest today. Then I have the issue of getting day and night confused. I am not sure why I feel safer during the day. There is a therapy topic. There are not enough therapy hours in the year to cover all of these topics.
No matter, now it is almost 4am and I am still up, obviously. Sleep is definitely a stuggle. I would love to know what others do for this issue. I have a bedtime routine. It worked in the hospital and when I got home. It is not working now. I am on sleep meds. We can all see how well they work. I am also on meds for anxiety. Again, sometimes I question how effective all of the pills are!!

Learning My Limits

Fibromyalgia. One word, a diagnosis, and so many different meanings to so many people. I can only describe my story. I guess you could call me a newbie to the diagnosis. The verdict came in the fall of last year after all of the wonderful poking and proding. Being someone who wants to fix what is wrong, I started looking for answers to make my symptoms at least weaken a little.

First was the diet. I cut out white flour and refined products as much as I could. That helped the IBS (irritable bowel syndrome). Then I started boosting the vitamins in my diet and started on a supplement. I went to conferences, aquatic therapy, physical therapy, and anything else that the doctor suggested. The therapy’s that were supposed to lesson my pain made things worse and the vitamins did not seem to help as everyone else who took them said that they would.

This was a problem. I cannot get rid of my fibro, I know I need to learn to work within my limits. Those limits are frustrating. I used to enjoy taking walks with my husband, yet at this moment I cannot walk 200 feet without feeling like I am going to fall over. My husband actually joined the gym because of me. Now I have trouble even walking into the gym. Well enough about that, i think that you probably get where I am going with this.

I know I need to learn my limits. I need to rest when my body tells me that it has had enough for the day and not push past that just because my mind wants to finish what it has started. Frustration and exhaustion have set in. I am tired of feeling this way, yet the flip side is that I do not have a choice. I feel like my body has betrayed me. Like I am a shadow of myself.

Once I said to someone that the first time that I was sick people understood, the second time they tried to help, the third time they were wondering why I could not “fix the problem. Surely I was not doing what the doctor had prescribed. I think that I am at the point now where my friends and family are tired of hearing the same thing. They are amazing and if I were them I would feel the exact same way. Hell, I might even be one to say why can’t they just get their shit together. And then again, after what I have been through maybe I wouldn’t.

Now my friends and family are hearing about a service animal. Sometime’s I even wonder, am I really that sick. And then I have to literally crawl up the stairs, physically get helped into the shower, or not even be able to fix myself lunch because I cannot stand because my back is so bad that day.

I want to be out there doing everything that I used to love. It just is not possible. Hopefully, once I have the service dog or as I say some assistance with my activities of daily living I will be able to get out again. I am looking forward to taking my kids to the park down the street from me, window shopping, or even going and having a cup of hot chocolate and journal at one of my favorite places.

The journey has just started for me.

And I Though Labor Was Bad!!

And I Though Labor Was Bad!!

I would just like one night where I do not wake up in pain. I found this image on the web and really liked how it pinpointed every area where the pain could possibly be. Just a little background and I will try to keep it brief. I have had many surgeries in my lifetime: 3 c-sections, knee surgery, my appendix taken out, my wisdom teeth removed, and numerous other outpatient procedures. All I ever took was an Advil. If fact after I had my appendix out, I was back to campus taking my finals.

This pain is different. It goes right down to the bone and stops me from moving. I could barely get out of bed this morning. Then add the dizziness to the pain or from the pain, I am not even sure what it coming from where any longer. As I am sitting here my left hip feels like it is on fire. Yes, I have pain patches, yet I cannot put them all over my body.

With my first child, I was in labor for about 15 hours before the doctors figured out that the baby was just to big and the babies heart rate was low, really low. I thought that was bad pain. It radiated everywhere. I felt like parts of me were being stretched that should never have been.

Fibro is different. Fibro does not end. There is no bundle of joy at the end of it all. Only more pain and stiffness. Or may be part of that is my arthritis. At this point, I feel like I do about my mental illness, call it whatever you want, I just know how I feel and at this point it is like crap. There is not an easy fix for this. I know that my doctor says that activity is good for my body and to keep moving a little each day. That is hard when the next day I am in too much pain to move and by body feels like it has been run over by a tractor-trailer.

My symptoms have become worse since February. I realize that some of the people who I know have not seen me. They have not seen the cane or the fact that I cannot walk straight. No one, but my closest family is lucky enough to have to help me with the simplest task of turning over in bed. I even asked the doctor why my fibro seems so bad when others are out working and getting on with their lives. His response was that everyone’s body is different. I would gladly trade with any of those people. He suggested that I go see the pain management specialist. I am just scared that I am going to wind up being a human pincushion. The last time that I had a shot for pain, the shot cause more pain before I felt any relief and then only lasted for a couple of weeks.

Sorry about all of the complaining. I am just in a really bad place this morning.

Acting “Normal”

Another wonderful day at another birthday party. I drove an hour to get here to not really know anyone. My ex lives in a neighborhood with millionaires. I live in a working class neighborhood!

Nothing is wrong with where I live. I love our home. It is just that these parents just got back from foreign countries and I do not even have a passport.

I am sure that they were not in a mental hospital for one of their children’s last birthdays. They have not had their kids taken away from them because they are ill.

Add a cane to the mix and I really stand out. The only good thing about the cane is that they only see the physical. I am shaky and just want to go home, yet it is important to me that my daughter have friends.

My daughters smile is worth it all!!