UNDER CONSTRUCTION!!

Please bear with me while this site in under construction! Right now, it is kicking my butt! Good thing I chose a "tired" day to work on it. I have said it before, I am aware of my limitations but sometimes I forget. LOL Have a Happy Labor Day!!!

A beautiful thought from my cousin!

My cousin had sent me this today. I thought it was perfect! Thanks Nate!!

**Crohn's is misspelled. Just sayin**

My best friend and my illness...

I have a best friend. I don't know what I would do without her. We talk everyday, 10 times a day. She is my rock! However, I was feeling as though we didn't physically spend enough time together. She works crazy hours and has a family. I am unable to drive to her house, go out when it is hot and humid and I have a family too. I miss my best friend. I miss hanging out with her. I miss camping with her. I miss going to play Bingo with her. Canoeing...not so much. (That is a post for another day) No matter what we would do, we would laugh and have so much fun.

This was really getting to me. I thought that she didn't want to hang out. I felt that I would be a burden to her. Example, she took me to a retail store. Pushed me in a wheelchair. We had a great time and I got exhausted. But I felt that this is an inconvenience for her. So, finally the other day, I said to her "you know I love you but why don't you ever want to hang out or do something? She said "Jenn, I do want to do things together. I wish that we could do more. But I know that you get  so exhausted with simple things. I will feel guilty that it would put you down for 3 days". I would have never guessed she felt guilty. I said "you know, I get exhausted doing dishes, who cares? We have so much fun together. When I get exhausted, I will tell you. It's not your fault. I feel worse when we don't do anything. I feel as though I am trapped in this house sometimes. You are not going to kill me if we do something together. Unless it's canoeing!" (seen Jesus twice that day lol) At this point we were both laughing. 

So we decided that we are going to do more things together. Even when I have to stop and lay down. I'm used to doing that anyways. I will re-enforce that my exhaustion is not her fault. 

This conversation needed to happen long ago. Communication is the key. Not only in marriage but in friendship. 

P.S-my dear best friend, if you are reading this, I love you and I don't know what I would do without you! Also, I do forgive you for trying to kill me those 2 times when we were canoeing. Truthfully, I never had so much fun and laughed so hard! Love you and thank you for being there anytime of the day or night!

Finding a purpose and loss of independence...

I was a homecare nurse. I used to do patient care but then I started working in an office as a quality assurance nurse. I loved my job. I was good at my job. Now since I have quit working because of this illness, I find it hard, most days, to find a purpose. I do have my teenagers and I know my purpose is for them. I have my husband and I know my purpose is for him. But sometimes this is hard to remember. I feel like I don't have anything of my own. I feel as though I have nothing to look forward to. I don't have anything to excite me. I spend my days, resting, watching tv, surfing the net and doing what chores I can accomplish. Somedays, I can't accomplish much. 

I'm not sure if it is so much as having a purpose or the loss of independence. I was such an independent woman. Had a terrible first marriage that I got out of, put myself through nursing school and graduated with honors with 2 kids, worked 40-50 hours per week and went camping almost every week. I truly miss that in my life. I miss getting a paycheck. I miss being the go-to girl at work. I miss going camping and making wonderful memories with my family like I had when I was a kid. 

I feel bad for my kids. I feel bad that I depend of them for certain things. I feel bad that they worry about what is wrong with me. I have said it several times and I will say it again...I have great kids.

So, what do I do to change my thinking when I feel like I have no purpose and lost independence?

1. Lost of independence is what it is. I have to remind myself often that it truly is what it is. There is nothing I can do about it. I can't drive safely. I am unable to work. 

2. I do what I can do. There is always tomorrow. The laundry will always be there. The world is not going to end if it is not done all in one day.

3. As long as I have my kids and husband, I do have a purpose. Like I said earlier in this post, somedays are harder than others to remember. But I just have to keep reminding myself this. My kids  and husband need me. They need my guidance. They need me to kick their butt when they do something wrong. They need my love. They need to see me as a strong mom/wife. 

4.  I set it in my mind to accomplish one thing a day. Nothing major. Could be as simple as making a phone call. Doing 2 loads of laundry. Writing in my blog.  I do feel better if I accomplish something.

5. Start a blog! This has really helped. I don't know if anyone is reading it or not but it has helped me. It gives me a release. I can put down what I am feeling, thinking etc.. It gives me something to do. Gives me a task. Maybe I can help someone else who is going through what I am.

Don't get me wrong, this all sounds great but I do still struggle thinking positive but I remind myself of the above things and it does help me get through the day!

Fibromyalgia...I was angry to get this diagnosis

As a nurse myself, we were taught that Fibromyalgia was not actually a diagnosis. That it was given primarily to women with mental disorders. Women who didn't have anything better in their life than to complain. Mostly bored housewives. So, when the Rheumatologist said that she thought I had Fibro, I was livid! I mean really! I'm not a bored housewife. I worked 50 plus hours a week, had 2 kids, very active and that doctor actually had the audacity to say that I had Fibro! How dare her! The Rheumy seen the anger in my eyes. She asked "what's wrong Jenn?". I explained to her about what I was taught. She said "Jenn, what you were taught is old thinking. There have been great advancements in Fibromyalgia. Specifically, physicians realizing it IS an actual diagnosis."
At that point, I still wasn't sure if I believed her or not. I did come across a doctor here and there thinking that Fibro did not exist. They never said that but you can just tell by their expressions on their face. But whatever!
For the longest time I affectionately called Fibro "the shut up" diagnosis. I felt as though the doctors didn't really know what was wrong, so let's just call it Fibro to shut her up. I have done my research. I have read and read on Fibro. I do believe that it is real. I also believe that it may be the beginning of another medical condition that hasn't reared it's ugly head. Lupus and MS are similar. And if you read, many, many people with Lupus and MS also have Fibro. Hmm... just sayin!
So, yes, I have Fibro. I do have the trigger points. I do have the fatigue. I do have the chronic pain.

Just remember, it's not in your head, your pain is real and never let a physician make you think otherwise!

Upcoming Season Premiers

Since I heavily rely on television, here is a nice list of the upcoming season premiers I thought I would share. Plan accordingly:

September:

Sons of Anarchy Sept 10  

How I Met Your Mother Sept 23

Chicago Fire Sept 24

Law and Order SVU Sept 25

Criminal Minds Sept 25

October:

The Walking Dead Oct 13

November:

Doctor Who Nov 28 (yes, I'm a nerd)

Fall 2013 TBA:

Nurse Jackie

Kitchen Nightmares

Under the Dome (if it even makes it)

Some time in 2014:

Justified!! Oh I can't wait!

I can't say it any better!

It's in your head! There is nothing wrong with you!

I have heard this so many times. I am seeing it become a trend with medical professionals. My father was told this for many years. He was told to reduce stress, find another job and see a psychologist. He ended up in heart failure, Parkinson's, hole in his heart and a paralyzed diaphragm.Yeah, it was in his head. Bless his heart, he past away this past January after fighting a long battle. I have another friend who was told it was in his head too. It got to the point where he was intubated and on a respirator. It was still in his head. His wife finally told the doctors off. He was finally diagnosed with ALS.
If it is in my head, how can I make myself lose vision? How can I make myself produce a malar rash? How can I make 2 lesions (they don't know what they are) appear on my MRI? How can I make myself turn red and sweat  after trying to complete simple tasks? Guess I have nothing else to do in my life lol

I have even gotten to the point of hating going to the doctors. It would instantly put me in a bad mood. I would tell my husband "What's the point? They aren't going to tell me anything." But I continue to go. Even traveling to Cleveland Clinic which is about 3 & 1/2 hours away. I will say, at the Cleveland Clinic, that neurologist does not make me feel like I am crazy. She knows there is something wrong. Just doesn't know what yet.
It is always important to get a second opinion. Hell, even a third. And always remember, if your physician gets angry or feels betrayed because you want a second opinion, that physician is not a good one. Your physician should never get angry or feel betrayed. They are there to help you and if you want a second opinion, your physician should be accepting of that!

The hardest thing about my illnesses...my mind vs my body

I think one of the hardest things about my illness is, what my mind tells me and what my body will do. My mind tells me that I can still do all the things that I use to. Camping, amusement parks, mowing the yard, pulling weeds, painting etc... My body, says "ha...not so fast lady!". I get so discouraged. I think mostly because I am negative in my thinking. Simple household tasks should be stupid simple. But for me it is a challenge. I hate that! Oh gee, I did laundry today whoop-tee-do! I need to change my thinking. I need to look at the positive. "I did laundry today...great! Now, what is next?" I need to get over  what I was able to do before because that is not getting me anywhere. I need to start commending myself on the tasks that I do complete. Let me rephrase that, I will start commending myself on the tasks that I do complete. I will stop thinking about what I was able to do before and start thinking about what it is I can accomplish. I will listen to my body more. I will be more positive! Wish me luck!!

Trying to make the most of my day

Since I am fully aware of (but somedays do not except) that I can no longer do things like I use to. Completing tasks are a statical challenge. I am always computing in my head how to conserve energy to complete a task. Let me tell you, somedays just thinking about what I would like to accomplish is a task its self. So, here are some of my energy conserving techniques:

1. Shower before bedtime: I know this is going to make me tired anyways. This is really the only time      that I can raise the temperature of the water to warm. (Hot water exhausts me and messes with my vision) Oh yeah, btw, use a shower chair. There's no shame!

2. Vacuuming...sit on a computer chair with wheels: I have trouble bending over and pushing a vacuum tires me. So I sit on the computer chair and wheel around with the attachments on the vacuum.

3. Be sure to rest!! It is ok to stop and go lay down 15, 20 minutes or a hour or 2! It is better to stop what you are doing, rest and then go back to it. Household chores will NEVER go away. If you can't finish it today, it will be there tomorrow!

4. Washing dishes...do a little at a time. Who cares if you have a sink full of dishes. If you have to take 5 minutes to wash and then go rest, have at it!

5. Laundry: I hate laundry! Get clothes baskets with wheels so you can push instead of carry. I actually kick mine along somedays. Place the basket on a chair so you don't have to bend over sorting. This took me awhile to figure out for some reason?? Use "pods" instead of laundry liquid. I have tremors in my hands, especially when I get tired. I like the "pods" better! Less mess! Folding clothes...for me, I find standing up while folding is easier than sitting down. I work with gravity. After completing a load, I lay down for about a hour. I have to. Sorting, lifting, folding clothes is very, very taxing!

6. The most important thing I can tell you...

           ASK FOR HELP! If you know that you can't do your task today, ask for help. My kids have been

 wonderful! They now will actually step in when they see that I am struggling. They know before I acknowledge that I am getting too fatigued and need to stop. Great Kids!!

I will periodically list some energy conservation techniques that I use. Hope this helps!!!

Love terrific teenagers!! I don't know what I would do without them!

Steroids....the love-hate relationship!

Oh wonderful steroids! How I love thee! And....hate you! I just completed a round of high dose IV Steroids about a month ago. It was wonderful! The second morning, I got out of bed and thought "hmm...something is different". I was walking with very, very little pain. I thought "holy crap! This is awesome!" Energy! I have energy! I don't feel so drained! This is what it is supposed to feel like! Now granted, I had all these visions in my head what I was going to accomplish around the house. I was smart, I paced myself. Did small tasks then rest. Three glorious days! 

Pain and fatigue slowly came back. After about a week, I was back to where i began. This put my depression in overdrive. I got this taste of what I am supposed to feel like and now it's gone. Oh, how it sucks! So what exactly did the steroids even treat? Little bit of everything I suppose lol Like I said, steroids...love 'em and hate 'em!

Lose weight and exercise...yeah right!

"Lose weight and exercise" Seriously! This is what my appointment is for? I understand that if I lose weight I would feel better. I understand that if a person would exercise, they would feel better. But not me! If I could exercise, I would. I did say that to my former rheumatologist. She just wouldn't listen. She couldn't get that simple exertion is exhausting! Not running a 10 K exertion. Folding a load of laundry is exhausting. My arms feel weighted. I start to feel off balance. Have to rest NOW! Showering?? Showering is exhausting. For one thing, the temperature of the water has to be luke warm.  Then I have to rest afterwards. So, I want to get out and go to the store. I have to either choose from showering or going to the store. Or shower, lay down and rest for a hour or 2 then go to the store. Then come back home and lay down for a hour or 2. 

So yeah, guess all my problems would be solved if I lost weight and exercised!

First post...

Ok, this is the first time I have ever blogged. I decided to start this blog because I know I cannot be the only out there who cannot get a diagnosis. I can't be! I have an unknown autoimmune demyelinating condition. Talk about vague! I went from working 40-50 hours a week. Completely independent. Now, within 6 years, I can no longer drive, work or do housework. And still no closer to a diagnosis. I just thought that this would be a great place to share.