Explanations

So, this is it!

I have finally out what drives me crazy and what every situation and every person I encounter has in common. I need to give an explanation for everything since I have been sick.

  • Shawn- I’m constantly explaining why I can’t accomplish things or how I feel. Every day, all day long I try to put into words this assault on my body.
  • Doctors- At every new appointment and with every new doctor or professional, going back through everything from the beginning. Back through my history, my symptoms, for no reasons, for no relief I feel.
  • People in Public- The dreaded people and blank stares after the questions and my lame answers. I explain to deaf ears it seems.

Over and over….

Explanation after explanation….

I never have a “normal” conversation anymore it seems. I long for the days of small talk about the salon or how someone wants a change in their hair…or how the kids are doing…anything besides the sickness…the looming doom that is the dark cloud over my entire life.

My week is composed solely of physical therapy, counseling, doctor’s appointments, specialist’s appointments, testing….I long to be back at work…back behind my chair making people look and feel beautiful, talking about the weather, their kids, their remodeling projects, their vacations….focusing on others instead of trying yet again to explain this mysterious illness that came out of nowhere and swept away my life.

Things I Wish I Knew About Insomnia Before It Became My Life

I cannot remember the last time I got more than 3-4 hours of sleep at a time. I walk around like a zombie. There are some things that I wish I would have known to better prepare myself for this adventure before it became my new normal.

1. The fairy tale of having a long night snuggling your boyfriend and waking up next to each other is over. He will get annoyed because you are waking him up in the middle of the night moving around to either try to go back to sleep or get up and go downstairs.

2. You will lay there trying to fall back asleep and start to think about every mistake you have ever made in your life. Then, try to figure out if the mistake led to something positive and if you learned anything from it, how much of an idiot you were/are, asking yourself why you did that, driving yourself crazy essentially.

3. When the mistakes run out or your brain just gets tired of them, the complicated math problems start. It may just start innocently as a bill that you are trying to remember if you paid. You may start balancing the checkbook in your mind, trying to figure out if you got the best deal at the grocery store or some other sort of numbers game. Next thing you know, complicated math problems are tumbling around in your mind and you are actually contemplating turning on the lamp and grabbing some scrap paper. What? This is absurd!

4. The pain that keeps you up is unending at night. It seems worse at night than during the day. This is probably due to the fact that you take more medications at bedtime that make you drowsy, so you are in a state of fatigue that is unmatchable than the rest of the time yet you can’t sleep. This feeling makes it hard to do any pain distracting activities. Also, you want to sleep, so waking yourself up more is not an option. 5. You will be more tired than you have ever been in your life, yet you can not fall back asleep. Your brain just won’t allow it. It is keeping your body awake no matter what. Sleep is the only 100% relief from the pain and it is illusive.

6. All day long, you will walk around like a zombie waiting for your moment to be able to get a nap in. You can just feel the small amount of energy that you started the day off with being sucked away fast.

7. Besides chronic pain, insomnia is the most lonely and isolating burden you will deal with. It is another one of those problems that no one really understands unless they have been there. It is an all out attack on your body and you just hope that THIS will be the night that you will sleep through.

Your Ultimate Goal is 30%; Are you serious????

I’m completely heartbroken, pissed off at the world, disappointed beyond belief and just plain deflated. After everything I have been through with my health over the past few years, I finally thought I was looking at a breakthrough yesterday. I had been waiting almost five months to get into this pain clinic and yesterday was the day. Appointment day FINALLY!

So, for anyone that doesn’t know my “story”, here is the short version….I have been dealing with an intense amount of daily pain for over two years. I was finally diagnosed with fibromyalgia this past March. Of course I know that working out and walking does wonders for pain. I hear this all the time from all of my doctors. I wake up everyday with great intentions. As a person, I love to workout. I happen to be stuck in a body that isn’t functioning at a pain level that is allowing me to do even basic yoga at this point or walk on my treadmill without paying for it for days after unfortunately. No one seems to understand my situation apparently and they all just think hat I’m full of excuses or that is how they speak to me and make me feel. To top it all off, I have gained 45 pounds since March due to medication side effects and lack of exercise. I had to finally give up my career of 15 years at the beginning of August due to my health conditions and that was the worst blow yet.

Keeping all of this in mind, I was holding all my eggs in one basket that this pain clinic was holding the golden key to breaking the cycle that is stuck on repeat in my life.

My doctor kept saying that once I go see the pain doctor, things will get better. Let me tell you what happened at the pain doctor…..

He kept saying that I was so young to be having all of these problems. Yep, I know this. I’m 34 years old. I didn’t ask for this shit to come in and take over my life!

He also kept saying that all of my organs are in great health and he wants to keep them that way. Yes, again I know that I’m the picture of health on paper. If I felt like I looked on paper, I wouldn’t have ever been in his office. So, me being so young and in such great health led him to start talking about alternative treatments.

  • Physical Therapy- Yes, I just finished 3 times a week for 8 weeks on my neck and no change and I started therapy for my low back/left hip last week
  • TENS unit- Let’s get you one for Home. Yes, I have one and use it daily
  • Cervical Traction Pump- Let’s get you one for home. Sure, I guess if you think it will help
  • Exercise- yoga, walking, swimming. Yes, I try when I can, but my pain is usually too high for yoga and waking and when I do on a rare good day I have to spend 2-3 days in deep recovery.. What about swimming? The chlorine kills my eyes from afar even when I take my girls, so I don’t think that is a good option for me

After going over all of that bullshit and talking about nothing for an hour, he adds a low dose of Cymbalta to everything else I already take. Which, by the way, is another one that has weight gain as a number one side effect.

Then he tells me that his ultimate goal is to decrease my pain by 30% without increasing my fatigue anymore. Are you fucking kidding me????? 30%!!!! Not increasing my fatigue ANYMORE than the outrageous amount that it is right now!!!!! How am I ever going to get back into the workforce like this??? How am I going to be able to live a life???? But, don’t forget, I’ll have healthy organs!!!!!

I guess I’ll just rot on my recliner until I reach the age to where I can get some actual pain relief and not have to worry about my organs anymore!!!

31 Days of Gratitude Photo Challenge-Day 27

SPONTANEOUS

Today I’m so grateful for a spontaneous act of kindness from not one but two women. The first one is pictured above, my daughter’s gymnastic’s instructor. I love this woman dressed in teal. I haven’t seen her since last spring and instead of asking me ridiculous questions, she simply came up to me tonight at observation and said that she feels like she she needs to give me a hug. Then, she asked how I have been. I said honestly not good and she just simply said that Kelly told her and she is so sorry. So grateful for her love and understanding.

The second blessing I had was earlier today at my yearly gynecologist appointment. Hard to find blessings there, but ones snuck in. The nurse told me that the doctor had a student working with her today and asked if it was okay if the student did my exam with guidance from my doctor. I didn’t really mind, so I agreed. In walks a friend of mine whom I had lost contact with over the years. I didn’t really know how I felt about the situation at that point, but it ended up being less awkward than I had initially thought it would have been. Through the background questions, she obviously found out about all of my current health struggles. After the exam, she came up and hugged me and told me that she would be praying for me. I almost broke down in tears.

God works in mysterious ways indeed.

31 Days of Gratitude Photo Challenge- Day 24

LUXURY


Getting a facial is my little retreat away from reality. I adore the entire experience. I have chronic sinusitis, so rubbing on my face feels so good. It gets everything moving. I rub my own face daily, but of course it always feels better when someone else does it.

Then there is the feel of my skin when it is all said and done. Oh, I feel rejuvenated! My face feels full of life and my circulation is improved. If I could afford this delight on a weekly basis, I would be there! 

My Food Battle

It just makes no sense! This stupid battle with food that I have! It drives me crazy. I used to battle food in my teenage years in the form of anorexia. All food was the enemy. Food equaled fat to me. 

Then again with the anorexia after my second baby getting ready for a wedding 9 months later. The pressure to be thin was overwhelming. Off and on I battled binge eating and purging and starving myself. 

Finally, I decided that enough was enough and I chose healing. I was the healthiest I had ever been and had the best relationship with food when fibromyalgia hit about 2 years ago. Along for the ride came IBS. Of course I can’t just have a simple form of IBS, I have combination IBS.

I have tried eliminating lactose, gluten, and eating a low FODMAP diet. Nothing helps. I have been gaining weight steadily since March due to med changes and decided a couple months ago to eat a low carb diet. I was doing some research and this helps people with fibro manage pain and lose weight supposedly. My IBS became out of control with so much vegetables. One week I was shitting my pants and the next I couldn’t go at all. I was in complete misery! I did lose 8 pounds though. 

About two weeks ago, I just said the hell with it and started eating what my family eats….bread and all. Guess what? I’ve been having daily “normal” poop! Not to say that all my symptoms are gone. I still have gas and bloating. It sure beats wearing diapers and sitting on the toilet crying for hours in misery. I gained 4 pounds at the doctor yesterday though. 

I throw my hands up! 

The Beast Strikes Again

The Beast left sometime during the night on Thursday. I awoke on Friday morning in a state of relief. Yay! All I had to deal with was the “normal” head pain and not the Beast with the dagger. 

I lived all day Friday and Saturday with no signs of him. This morning, I was still in the clear. Sunday morning, one of my favorite days of the week. I get to go to my place of refuge. The only place filled with people where the angry anxiety monster doesn’t attack. I made it through Sunday School and almost all of worship…….and then
He Arrived!

Suddenly without warning! Bam! Just like that, the music started sounding very weird like it was tunneling. Bright colors were flashing across the stage. The pain on the left side of my head was such a severe intensity, at such a rapid rate that the rest of my pain all of a sudden seemed unbearable. Did someone seriously just decide to sneak attack me and jab a dagger in my left eye at church? Yes, that would be the Beast who lives within me dying to attack. He also goes by the common name of chronic migraine. 


My oldest daughter was looking at me. I can’t hide from her. She knows. I got a terrible hot flash and was pulling my hair up as she was asking if I needed some water. My body had a rush of nausea and my mouth filled with saliva. Oh no! Not here! Not now! I hoped my weakened body could make it to the bathroom. 

With her help, we made it! She had to go get the little one from class. Then, it was the task ahead of driving the 20 miles home. I hate when the Beast attacks away from home! That was the second time this week! 

Such a crazy drive home. I’ll never get used to driving with everything blurry and flashing and spotty. We made it only having to pull over once when nausea over took me. The beginnings are always the worst for me. I came home and slept for three hours. The Beast has managed to steal another family day away. He is still with me, but I just have a little better grip on him now.


He is a formidable enemy. I have wrestled with him for 19 years. I still have hope for a cure; some miracle that will kill him forever. Until then, I will rest until he leaves. Enjoy the times he is gone and get ready to fight another battle.  

The Not So Invisible Invisible Illness

I’m struggling so much lately adjusting to this new life. I just don’t know where I fit in the world anymore. I want to have a career. I miss being around people, but in the state  I’m in, people are the last thing I want to be around right now. 

I just feel so alone. I feel like no one understands me. Some days I wonder if this pain I feel is really all made up. Can my mind really trick me into feeling this much pain every day? No way! This has to be real!

A few weeks ago, I was having a horrendous day and snapped a couple of pictures of myself so I could see my face. 

I don’t have any broken bones or gushing lesions on my body, but I’m suffering every day. Take today, for example, I’m starting the day out on the third day of a migraine. It is running me down, both physically and mentally. I am also experiencing extremely high levels of pain in my lower back, neck and my left hip and sciatica down my left leg today. 

I would like to get some house cleaning down and my Halloween decorations switched out for my Thanksgiving ones. I would also like to take a shower. I think it has been three days. 


I’m also on a downward spiral in a depressed state. I’m feeling like no one cares or believes that I’m even ill. I hate when I feel like this. I block out my friends. I made myself write this blog post, because I know I need to get my feelings out or they will destroy me. 

I miss my life more than I could ever imagine and I just don’t know how to cope. My therapist says I need to structure my weeks and schedule stuff, but it is so challenging to do when I have no idea what my illness is going to throw at me one minute to the next. If I knew when I would have a low pain time, then I could work somewhat. My low pain days seem to come less and less often anymore. 

Is it just all in my head? 

The Not So Invisible Invisible Illness

I’m struggling so much lately adjusting to this new life. I just don’t know where I fit in the world anymore. I want to have a career. I miss being around people, but in the state  I’m in, people are the last thing I want to be around right now. 

I just feel so alone. I feel like no one understands me. Some days I wonder if this pain I feel is really all made up. Can my mind really trick me into feeling this much pain every day? No way! This has to be real!

A few weeks ago, I was having a horrendous day and snapped a couple of pictures of myself so I could see my face. 

I don’t have any broken bones or gushing lesions on my body, but I’m suffering every day. Take today, for example, I’m starting the day out on the third day of a migraine. It is running me down, both physically and mentally. I am also experiencing extremely high levels of pain in my lower back, neck and my left hip and sciatica down my left leg today. 

I would like to get some house cleaning down and my Halloween decorations switched out for my Thanksgiving ones. I would also like to take a shower. I think it has been three days. 


I’m also on a downward spiral in a depressed state. I’m feeling like no one cares or believes that I’m even ill. I hate when I feel like this. I block out my friends. I made myself write this blog post, because I know I need to get my feelings out or they will destroy me. 

I miss my life more than I could ever imagine and I just don’t know how to cope. My therapist says I need to structure my weeks and schedule stuff, but it is so challenging to do when I have no idea what my illness is going to throw at me one minute to the next. If I knew when I would have a low pain time, then I could work somewhat. My low pain days seem to come less and less often anymore. 

Is it just all in my head? 

31 Days of Gratitude Photo Challenge- Day 13

New

What a fitting day for the word “New” as my gratitude challenge word today. 

I’ve spent the last year working on growing my hair out to its natural color. As a hairstylist, this is no easy task. I’m always seeing and learning the latest trends and wanting to try them out. 

The only thing working in my favor over the past year has been my physical state. I just never have the energy to do my hair and it is either just dried naturally and finger combed or thrown in some resemblance of a “messy bun” on top of my head. 

For the past two weeks I have really been thinking about coloring it. Thinking that if I color it a bold color, I might feel like I have a little life back in me. 

So here is my new hair. It is wet, but you get the point.