Showering...puts me in a bad mood!

Really? Showering puts you in a bad mood? Yes, Yes it does! Let me tell you why.

1. I have to calculate when to take a shower. I can't shower first thing in the morning because it sucks the little energy that I have. I can't take it before I go to the store. Again, zaps the little energy that I have. Ok take it at night. Then I can just go to bed afterwards. But, sometimes I am too tired to take a shower at night because of the activities I had done during the day.
2. Stepping in the shower. Seriously? Just stepping in the shower can be a challenge. For some people will not understand this but stepping in the shower is a gamble because there is a good chance I'm going to fall.
3. Nice, relaxing HOT steaming shower...yeah right! The temp can't be hot. Sometimes it has to be luke warm. Heat of the shower increases my symptoms. Make my legs like rubber. I'm off balance and cannot see straight because of Uhthoff's Syndrome  I would love to have a hot steaming shower. Ohh...I miss that!
4. Shower is done, time to hop out right? Not so fast buster! I have to sit on the shower chair and dry off and get my bearings. By this time, I am very tired. My arms feel heavy. My legs feel weak and I am so afraid of falling. I want a nap!

So, why am I in a bad mood after a shower? Oh, I don't know? (Please note the sarcasm) It is just exhausting just going through the motions of the 4 things listed above. Getting to number 1 is a challenge. Somedays it is just not even worth it. I am a 30 something yr old woman and it is a challenge to take a shower. Ticks me off! I'm bitter. I'm angry. I hate being this way. I know, that I need to just let go and accept I am the way I am but somedays that is harder to do. I understand that there are people who have it worse. I completely understand that. I know I should be grateful of what functions I do have. I do thank God for that. I really do. I am just having one of those cranky days where showering puts me in a bad mood!
Jenn

Lyme Disease and Fibromyalgia...

Here is a great article about Lyme Disease and Fibromyalgia. People are often getting diagnosed with Fibro when it is actually Lyme Disease. Very scary!!
Lyme Disease and Fibromyalgia

Jenn
P.S. Good catch Mom!!

Disciplining my teenagers...

I'm not writing about my illness tonight. I thought I would write about my teenagers and disciplining them. I have a 16 and 14 year old. They are good kids. Not on drugs. No one is pregnant. Good grades. Respectful,  say please and thank you. However, I know they are NOT angels! They are teenagers. Dumb, think they know it all, teenagers.
My husband and I are not their friends. We are their parents. We are not afraid to make them mad. If they hate us, oh well, they will get over it. We are not afraid to look through their phones. They know this too. I have pulled it right out of their hands and went through their text messages. Mad? So. Pull up their internet history? Sure...low and behold. Some one has been on a chat site after they have been told not to. That was not a good day for the teenager. Goodbye phone. Goodbye internet. Goodbye Xbox. Goodbye DS. Goodbye friends coming over. Hello more chores. Was that teenager mad because we stripped everything away? Yes. Do I care? No. Did we do it because we love them and want to protect them? Absolutely! Again, we are not their friend, we are their parents.
We don't expect straight A's in school. But we do expect them to do their best. If they tried their hardest and got a C, great. If they screw around, don't do the work and get a D, time for change!
Now, don't get me wrong. We do not think we are the parents of the year. We are not. I am sure we have made mistakes. But we do make our kids accountable. We want them to choose the right path to succeed.
Don't try to be your child's friend. Don't worry about making your kids mad. Pull the cell phone from their hands and go though it. Look at the internet history. Use the GPS phone trackers. Iphones come with a free one called Find my Iphone .Mobile spy is also a great one. About $100 per year but wow check out the demo here . For Androids Life360  is a great one and it is free. I really like this one because it will show you a trail where they have been. Check on their grades a few times a month. Ask them, how their day was or if they have homework. Tell them everyday that you love them. Give hugs and kisses. No matter how old they are. (A little back hand never hurt either)
Jenn!

"Maybe you're just depressed" Really?? No kidding!

"Maybe you're just depressed" Hmm..ya think? I recently heard this from my doctor. Asking me if the depression is the cause of all my problems. I instantly got defensive. I said  "I'm not sick because I'm depressed, I'm depressed because I am sick!". This isn't the first time I have heard this. It is so frustrating!!! My father went through the same crap for years too. He was told to see a therapist, change jobs and reduce stress. Completely missed the heart failure! He too did not look sick.
I think this is, sadly, becoming the norm. Doctors can't find anything diagnostically (yet) and they see that you say that you are depressed and have anxiety. So that's it! You are just depressed. "Here take this pill, lose weight, exercise and you will feel better."
Yes I have depression. Yes I have anxiety. My life has completely changed. I once was this hard working, 40-50-sometimes 60 hours a week, mom, wife, camping queen. Now I have left my job, can no longer drive. I depend on my kids and hubby to help me with household chores, meals and shopping. We haven't gone camping in almost 2 years.
Yes I understand that depression does have physical symptoms. I get it. But Doc, look a little deeper on the depression scale questionnaire that you just made me fill out. Ask me why I am depressed. I would gladly tell you! And again...

I'm depressed because I am sick. I am not sick because I am depressed!

The Spoon Theory

I have never heard of "The Spoon Theory". I wanted to share this site with you. It is about a lady who has an invisible illness trying to explain how she plans her day with limited energy. Check it out!

The Spoon Theory


Jenn

The truth about steroids!

So, I'm back on steroids again. I just gotta say...I love them so! I wish I could be on them forever but I know that is not going to happen. They are really a double edge sword. Yes, they take my pain, fatigue and ugly rash away but they can actually be dangerous to your body. Figures! I just wanted to give you my take on steroids that docs don't really tell you about them.

They make you:

1. Feel anxious. We all know this. But what about the pacing? What about the racing thoughts. Wanna sleep? Ha Ha Again, I am writing this post at 1 am.
2. Feel like you want to fight someone. When I was on the 3 day IV round with a 10 day taper, I wanted to fight someone. Seriously! I wanted someone to get in my face. I wanted someone to yell at me. I WANTED to fight!
3. Along with #2, very short tempered. Fly off the handle without warning. Hubby and kids have figured this out. They stay away lol
4. Sweat! I mean just sitting there watching tv and you are sweating like you just ran a 10K in the 100 degree heat. Driched with sweat. Boobs sweatin! Neck rolls sweatin! Butt sweatin! Bring on the powder!
5. Feel very, very hot! Like you are in a steam room. I feel hot all the time anyways but this is worse. I have to turn down the temp of the water. Almost cold showers. Still hot. 60 degrees outside and I go sit on the porch in a tanktop to cool off. Still hot. Grr!
6. Thirsty. I cannot get enough water. I hate water. But I can't get enough when on steroids.
7. Hungry. I wanted chicken wings almost as bad as I wanted to fight. I thought I was pregnant when I was craving chicken wings.  I ate those bad boys all up!
8. Weight gain. I'm thinking that has to do with #6. But it is also part of the medication's side effects.
9. Painfree to almost pain free. It is so odd to me to be painfree. To walk without pain is so unfamiliar. It makes me stop and think "huh, am I missing something? Oh yeah, no pain"
10. Fatigue improves greatly! Now, I still have to plan and calculate what activities to do and make myself take breaks. I am really bad at this but I am getting better about listening to my body. When I am on steroids, I don't have that knawling, exhausted, drained feeling. I actually feel like performing my activities. 

Steroid effects only last for a short time. I do know that I tend to get some increased depression when my symptoms start returning. Steroids give me a taste of what my life should be like. It sucks but even with all I mentioned above, I still love'em!

I thought this was brilliant!

I was sent this brilliant pic today from a buddy on MyMSteam

Have a great weekend!