Why I am sleeping in...

I was told there would be good days, and bad days. And, that there will be a time when you are getting better and better, and then there will be a setback. Don’t get discouraged by the setback I was warned, yet here I am at 1:30 in the morning unable to sleep and trying very hard to not be discouraged.

For the last few weeks, each day I felt better and better. My limp was all gone, my swelling and joint pain all but a ghost as it barely impaired me. I could lay down in the bed and fall asleep within minutes because there wasn’t the 30 minutes of slow unwinding back pain. My Charlie horses were all forgotten as if it had all been a nightmare. Was I 100%, no, but I was just like an out of shape person who could actually sit and watch tv without getting up 20 times to readjust.

Then yesterday this terrible wave came over me and I actually had to sit down. It took all of my energy to not start to cry as the jabbing pains seemingly came out of nowhere and the muscles in my legs began to tighten. Trying to stay calm I slowly moved back and forth as if to ease the pain, and keep from getting stiff, but here I am the next night tight with pain, twitching, swelling and frustration.

I didn’t realize how upsetting it would be to feel bad again. I have felt 20 times worse, but to start down this path of pain is scary, I don’t ever want to feel that bad again. My brain is saying, “stay calm you are only making it worse!” But as my muscles tense and my wrists and fingers throb with every tap on the keyboard I can’t help be feel a tightening in my chest that travels up my neck to my jaw.

Set backs are natural in life, this isn’t something I don’t know. What I don’t know is why I am taking it so hard when I know that I am probably making it worse. I think it’s time for a hobby outside of this house. Something other than unpacking and painting, and all the things that come with home ownership. I want to run, yet I can barely walk. So, it’s time to take a baby step, and go out and find something fun and exciting, it’s time to do something…something fun, with limited physical exertion as a plus!

"Are you depressed?"

I hate when people assume that because I have fibromyalgia I must be depressed. The commercials tend to say that I am. They don’t know where it came from but the leading theories are it was a traumatic event or that it happened slowly over a life of stress.  So if this were the case, then I must be depressed because it’s all psychological…

Most people don’t know the history of the diagnosis of autism, it started out that the mother was blamed. She was blamed for not being loving enough to her child in a crucial part of their development. This was the theory, for way too long, a theory created by a man, ironically. Eventually this has been proven not to be the case, but for all those mothers who felt like it was their fault, bearing the burden of the blame having society blaming them, medical science did not know at the time what they were doing or saying. Most Chronic pain diseases with no traceable root are considered psychological, until otherwise proven.

In ancient times, and even in the depths of the rain forests still today, when someone was sick, it was believed that a witch had cursed them. There would be a hunt for the witch, and then once found that person would be put to death. My point here is simple; when we don’t know the causes of something it’s really easy to make assumptions.

Do I get sad, or upset, of course! I get frustrated with myself when I can’t accomplish everything that I had wanted to, and feel limited by my pain and fatigue. Sometimes I push so hard that the repercussions later are not worth it, it can take me days to recover by trying to restructure my days. But I hate to “waste” the day that I have and there is always where the conflict ensues.

Basically I am at a point where I wish I knew why this was going on, because maybe if I did, it would stop. We think that in this day and age medical science has all the answers. I really don’t believe that they do. The next time you meet someone with a condition that you think that you understand, take two steps back because maybe you don’t. And no, I’m not depressed, I’m Joanna!

"Hot Coffee"

Yesterday while I was out catching up with a friend, I might have walked too much. I can’t be certain, because at the time it felt great, but then after sitting in my car to drive home, getting out was a slight challenge. I had to laugh, and got myself into bed to take a break. I was lucky enough to find something on television that actually grabbed my attention, a huge feat for a Sunday afternoon!

I watched, “Hot Coffee,” a documentary that delve into that McDonalds case and what it meant and how it has effected even people today. You remember when that woman spilt the coffee and sued and won! Yeah, remember how most of us thought it was nuts, how “stupid” is she to put the coffee there then sue…if you do, then you have to watch it, because it was so much more than that. How she abused the system for her own financial gain, everything that big business wanted you to think. Basically, if you are a person who lives in the United States, or is interested in the judiciary system, or owns a cell phone, has a credit card or just plan has a job, you should watch this. I was so touched and moved by this, I felt upset.

I am extremely empathetic, so for me it’s easy for me to get upset about other people’s pain. But as I was talking it through with my husband I couldn’t help be so upset that he told me that maybe this was something I would want to get involved with, Tort Reform. This made me more upset, because I can’t be involved in every issue, there are too many! So he suggested that I just tell other people they should watch it, and maybe they will pass it on, and then that person will try and help us all.

Personally I love documentaries of all sorts. But if you don’t like them, you will like this one. It moves fast and its real life examples that you either know, or can understand because it really could happen to you…scratch that, it is happening to you, you just don’t know it.

I would love to know what you all think of it, and if it was an hour well spent. They say you should never stop learning, and my hope is, I never do, and I hope the same for you!

http://hotcoffeethemovie.com/   

Talking Baby

So usually when I have a deep upset feeling, something that scares me, or makes my heart hurt, I push it as deep inside of me as I can. I thought this time I would take that hurt and lay it out and see if it makes any sense once I type it. Then once I read it.

I ask my husband from time to time, pretty much every time we are around children, “do you want children.” His response is always vaguely the same, “not right now,” or “someday.” Then he looks as me and asks me and I just agree with whatever he says always adding, “but maybe never.” A few months ago when I went to the doctors it was to find out what was going on with me, because if we were going to try and have a baby I wanted to be in peak health first.

Well, as the story goes I was getting worse as I was doing physical therapy, and finally after many tests I was diagnosed with Fibromyalgia. I have always been on the fence about children, more leaning towards not having any, for most of my adult life. I questioned always if I would be a good mother, and even worse if I could be as selfless as you have to be. I take being a parent very seriously, and have thought it through and through so many times, always walking the fine line of should I be a parent?

So when the doctor said about how people can just wake up one day, and be unable to get out of bed for a year, this has really stung me. I feel so burdened to the core and more confused than ever. I mean, isn’t this what I wanted? To not feel weird that I didn’t have children, or come off as cold and heartless, but that I have a medical real reason to be scared? Should this not be the sigh of relief that I was looking for?! It’s out of my hands!

But the other night Michael says, “it’s not fair that you don’t tell me if you really want children or not,” since I always agree with him. But today, on my birthday, getting a year older, and closer to the time when having a child will not be as much of a choice anymore, I feel sad. Sure I say how they are too much work, because let’s be honest children are a lot of work! Maybe I have shaped my opinion on not having a child based on how I haven’t felt strong enough in years. There are too many maybes. But when I see how much my nieces and nephew bring such light in their parent’s eyes, I always leave with a slight ache in my heart that I won’t ever have that.

I have no idea what I’m going to do. I guess that’s good, because it means I haven’t said no completely. But when you have a child, you have to get out of bed. So now as I read this, and look at my computer I think, wow, I don’t think you are wrong for not knowing what to do. I think I’m right to be scared and unsure. But today is my birthday, so I’m going to put that out of my head and go see a movie because there is no point in worrying about anything other than if I want extra butter on my popcorn today.

Lucky me

People will say that I am lazy. People will say that I am spoiled. People will say lots of things about me, so what I am I going to do about it…I’m going to let them, because I don’t care what they think.

After many discussions and even more back and forth, here I am in Delaware unemployed, unpacking, and trying to make this place feel like home. I have no clocks in the house except for the few that were here, such as the stove. But I like it like this. I wake up when I am ready to get out of bed, and I go to sleep when I am tired, sounds grand doesn’t it?

Well, it really has been a month of ups and downs. Going from working 2 jobs, to none sounds exciting and scary. I mean, it’s like a vacation right?! Except for the excruciating pain and mental frustration of OCD and perfectionism haunting me as I walk into unpainted rooms with boxes still sitting in them, but other than that, it’s really exciting. It’s only been a week I should cut myself a break, but let’s be realistic...I can’t. I try to say out loud, “it’s okay, I will get to it later,” but inside I worry what if later I can’t?

About two weeks ago the doctor told me that I am lucky. There are people that one day wake up and can’t get out of bed for a year. I sat there in silence and as my husband thought I was annoyed at him telling me how lucky I was, I was more scared at the prospect of being bed ridden for longer than a day. It never occurred to me that it could just out of nowhere get worse. I just thought that I could get myself under control then move on with my life.   

Moving is fun, exciting and extremely stressful, but as the days turn into nights, and more and more gets done, it feels vaguely as if it’s becoming a home. I have insisted we take all depressing colors off the walls and it make it soothing and warm as we can. I don’t want my house to feel like a depressing cave on the days that it hurts too much to leave it.

So sure there will be people who say how lucky I am to not be working right now, or how spoiled I am that my husband works so hard to make sure I have a roof over my head. People will say I look good, or how I don’t look like I’m in pain at all! People can say what they want now, because I plan on taking as little time or as much time I need to get myself together. I have changed my diet, decided to not live by a clock, and paint if I want to paint. If I choose to walk around with a limp because I want to walk, that’s my choice. If I choose to take a day off and you come to my house with all the furniture pushed to the center of the room, you are more than welcome to help paint!

Just say NO

Finding out you have an illness can be one of the most challenging experiences you have had to date. Being surrounded by the right people can make or break you in the beginning. It usually takes months to find out what’s really wrong, if not years. Your friends and family might not always understand, or they may not want to. Sometimes we learn the hard way just say no to letting yourself hurt because of people who can’t, or choose to not understand.

Months back when I told my sister how I was feeling she said, “your diagnosis is fibromyalgia, now you don’t have to see a doctor,” and I was like, what the heck is that?! I watched a few youtube videos and many tears later Michael took my computer away from me and made me go to bed. When I suggested it to my friends, one was like, “oh I know someone with that, it’s not that bad,” and then from then on it was as if my pain was diminished because she knew someone who was living with it, I would be okay.

Then I went to my doctor who mentioned it may be fibromyalgia, in so much pain that day that I couldn’t sit, I stood there dancing back and forth because my twitching was so bad I couldn’t stand still, I just cried, “no please tell me it’s something real.” The doctor just said, “this is why you are going to a neurologist, I just said it could be, it may be something else,” she paused and said, “it could be MS.” But continued and said, to stay calm it was very unlikely to be MS but it wouldn’t hurt to read more about it.

I went to the neurologist who seemed stumped by my blood work and reactions to things, he sent me for an MRI and then I received a phone call with my results, “well good news it’s not MS, I think it is the fibromyalgia, so we will treat you for that,” he paused and continued, “and you have arthritis in your spine,” and when I asked it that could be the cause of my pain he replied, “no.” We hung up with no other explanation, recommendations to see another doctor for treatment, or what to do next. I walked to my car, fighting back the tears because I know I have a life sentence of pain, youtube said so.

In those weeks I lost my closest friends, or at least people who I thought were. When I was scared I would tell them what the doctors said I could have starting from a thyroid problem all the way to Fibromyalgia. I confided in them before I told my family I didn’t feel well, and to be honest I hadn’t felt well in about a year. I was told by them that I was doing all of this for attention, and that I was making it all up. Having a disease that is worsened by stress this was not helpful. I blamed myself, and even thought they were right, maybe I was faking, maybe this wasn’t real. Maybe I really was a horrible person. Accepting my diagnosis has not been easy for me. I know I am in pain, yet somehow when the people you trust the most tell you that you are a liar, you begin to question everything, especially yourself.

If there is one wonderful thing that happened out of all of this, it was I lost those friends. Because in this new course of my life, I have made much better ones. Ones that think it’s normal to talk about your fears and pains. Ones that don’t want you to pretend you are happy and life is good just to make their problems seem more important than yours. People who don’t always want me to make the effort, because they know how hard that effort can be, and appreciate you made it. The best thing you can do when you are in pain, is get away from people who don’t care or can’t understand, and find people who do. They are everywhere, and one of them is right here.

Sleepless in New Jersey

Sometimes I try to think back to when I realized I was beginning to have a problem. You know how at the end of a thriller movie they retrace how if you had paid better attention to all of the clues you would have known the whole time and you go, “OH!” So its nights like this one when my body aches, it’s swollen and the Charlie horses travel up and down my legs and into new places I never knew you could get Charlie horses, that I think back to how it all began.

Tonight as I was trying to lay in bed and my left arm kept going from numb to throbbing that I began to think back to how when I used to wake up numb on the left I blamed my husband. I thought that he was putting too much pressure on me, maybe cutting off the circulation. Then I began to think about stupid stuff like how I told the office manager how the sink wouldn’t turn off all the way, and he pointed out how it wasn’t pushed off enough. I wasn’t strong enough to turn the water off, but at the time I didn’t realize the clue.

How out of nowhere I began getting Charlie horses, and like any person with the internet I went on to find out that I wasn’t drinking enough water! So every time I would get an attack I would guzzle a glass of water and swear relief, until I would get into bed and they would begin forcing me in and out of bed. Again, another ignored clue. When I began to have twitching and tremors, or when I began to stutter because my mouth couldn’t keep up with my brain, I just blamed my nerves at a new job, I never thought I had a problem…another clue missed.

So tonight I listened. My left side is numb and yet throbbing, and my right side is aching and strained and here I am, complaining…or as I like to call it, “talking it out.” You know when you ask someone for help and as soon as you do, BAM, it comes to you. Tonight, or since its 1:00am, this morning now, it came to me. All of these little clues in the last year of the way I was feeling and the hints to my future are still happening. I’m scared, I’m tired, I’m frustrated, I’m dying for something with gluten or a piece of candy, but back to our topic, I am still in denial. I am in extreme denial about my limitations, because I don’t want people to think I’m lazy.

I care more about what other people think of me, than what I think of myself. I say I don’t care, but I do. I want everything to follow a schedule and be organized. I think there are a right and a wrong, and my life is ruled by trying to never make a mistake or let anyone down, but that only makes me make more mistakes and let more people down.  I don’t know what to do, but I do know I am trying the best way I know how. It might not be the way that my family wants me to handle it, or even the doctors, but every day I am proud of me for not saying, “I can’t,” but when I need help asking, “can you?” After all, asking for help is the first step in any recovery...the second step thats doing things you never thought you would to get the help you need.