Planning to go out of the house...not as simple as you might think

I am a homebody. Hermit. Introvert. Recluse. You get the point. I prefer being at home, in a quiet, dim room with all my necessities (iPad, laptop, phone, tv remote) within arms reach. As I had said before in my other posts, it is EXHAUSTING getting ready to go somewhere.

Here is an example of my planning for which I hope you can relate:

1. When are we leaving?
1. Let the planning begin!! 
2. If I have to take a shower, I need at least 2 hours so I can rest between showering, then rest, getting dressed, then rest, blow dry hair, then rest. 
   
2. How long will we be? 
1. Fatigue plays a big part. 
2. Not to mention the pain.
3. Again, the FATIGUE!
3. How long is the drive? 
1. Being in the car too long is also plays on the fatigue. 
2. Sitting in the passenger seat for too long plays on the pain.
4. What should I wear? 
1. Can't be heavy clothing and can't be light clothing. 
2. Layers preferably. 
3. Socks optional.
5. What is the temperature outside? 
1. Can't go if it's too hot (fatigue, Uhthoff's, general yuckiness, short fused). 
2. Can't go if it's too cold (pain worsens, Raynauds flairs, Livedo Reticularis increases). 

   

   I couldn't help it lol

6. Should I grab my meds for my next dose? 
1. Refer to #2. This should really be a given.
7. Is there going to be a place that I can lay down? 
1. Seriously, I do think about this. Because when the fatigue hits, I must lay down!
8. How many people are going to be there? 
1. A large crowd talking, crawls under my skin. 
2. Makes me physically ache. 
3. Makes me short fused, annoyed to where I just want to yell "OMG shut up!!!".
4. Conversing fatigues me.
1. Makes me mix up words with other words.
2. Makes me flustered (Thanks Sis for the suggestion)
3. Makes me forget what the hell I was saying.
5. Makes me feel like running out of the room. Well, If I could run lol
9. Loud music playing? 
1. Refer to #7 2-5....same feeling
10. Who is going to be there?
1. I find that since I have been sick, the"bite my tongue filter" is gone. So, with certain people, I just say what I think and don't really care. So now, I tend to avoid those certain people.

So, as you can see that just preparing to go outside of the house is exhausting in itself. It is frustrating and can get depressing. Some days, I feel that it just isn't worth it. I'd rather stay home in my little bubble.

Of course, these are some examples because I am sure that I am forgetting something.
Hugs!
Jenn

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#standwithjetta peaceful protest at her school this morning!

There was a peaceful protest this morning at the Dayton Charter School where 10 year old Jetta Fosberg attends against bullying. As you may recall in my previous post, Jetta decided, on her own, to cut off 14 inches of hair and donate it to Wigs for Kids. An organization which creates wigs for children who have lost their hair from cancer treatments or other ailments. Since Jetta has done this, she has been bullied for weeks at school and the school is not acting appropriately to address the problem. Jetta's mom, Heidi, decided to reach out to social media and the outpouring has been amazing!

Jetta and her mom, Heidi

Now, since the Dayton news groups are involved, the school has decided to have an investigation. Well, isn't that something. All of the sudden the school is now concerned? (Please note sarcasm) I especially love the principal's comment that he "didn't know of any child that had ever died from words". Hmm... What about suicides? What about school shootings? He must not keep up with current events? Hopefully he is getting an earful now from his bosses! Hopefully!!

We will always #standwithjetta and we will always fight against bullying!

My own daughter missed school this morning to go stand with Jetta!

Hugs!!

Jenn

Just in case you missed it, here are a few news links!

WHIO News Dayton

KRMG News

WKEF Dayton

Fox 45 Dayton

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Fed up and my boiling point!

I kinda had a melt down the other day. Well actualy, I just blew up. My usual smiley face and my lies of "I'm doing pretty good" went away and I just couldn't keep it together anymore.
So, I am tired of the following:

1.  Being sick.
2.  Being in pain all the time. 
3.  Fatigue. (I really hate you!)
4. Of my mind telling me that I can do things for which I cannot do. 
5. Of my house being a mess. Laundry not done. Dishes not done. Bathroom not painted.
6. Tired of having to decide if I want to shower today or go to the store. I cannot shower and then go to store. Oh no! I have to shower. Rest. Put on clothes. Rest. Maybe then I will go to the store. 
7. Of calculating if I go out of the house: How long I should be gone? Will there be a place I can lay down? What type of clothing should I wear because with my interal "thermostat" being so screwed up that I can't get too hot because I feel like I am going to fall over but yet I can't get too cold because then my joints and muscles ache? Is it too sunny? Because God forbid me being in the sun because of the stupid Lupus. Just planning to go somewhere is just exhausting it's self. I stop and think if it is even worth going out?? But I am so tired of being in the house. I am tired of looking at my bedroom walls. I hate that I am always in my bedroom. I do go in the living room for a change of scenery but it is usually not for long. Because of what? Because I'm tired, fatigued, in pain or getting short tempered.
8. Of feeling tired. There are even differences in my tiredness. UGH!! Tired can be just tired. Tired can be sleepy. Tired can be fatigued. There is even a "tired" that I can't even explain!
9. Of being indecisive. Terrible time making decisions anymore. If you only knew how many times I have edited this post! (Changed the title 4 times lol)
10. Of depression fueling the pain and the pain is fueling the depression. Along with the fatigue fueling the depression and the anxiety fueling the pain in which really frickin depresses me.
11. Of not driving. Again with the fueling! Not driving fuels the fatigue to where I cannot judge distances which totally ticks me off because I miss just getting in my car and go where I want and I don't have to wait around on people to take me somewhere for which I have already calculated my trip.
12. Of not having my paycheck. Along with my weekly trips to the store to get what ever I wanted and spent how ever much time I wanted in the store.
13. Of not having my career. I loved my job and I was good at it. It made me feel important. Made me feel like I had a purpose.
14. Of the loss of independance that I fought to have for myself.

Some times it is so hard to put on a happy face. Am I having a pitty party? Sure! I can see if you are a person that is lucky enough not to have a chronic illness, so you can call it that. Or how about a woman who is just sick of feeling this way and that is ALLOWED to break every once in awhile. You can only take so much before you reach a boiling point. I have reached mine. I hope that you can relate!

Big Hugs!

Jenn

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NO MORE BULLYING!!! #standwithjetta

You know, I blog, just about anything. This really touched a nerve. I think because I am a mom, with my own teenager, I was a teenager one time (very long time ago lol) or simply because the bullying in today's society has gotten out of hand to the point where these poor children have no where else to turn so they kill themselves. This brings me to my husbands long time childhood friend who has a 10 year old daughter, Jetta. Jetta decided that she wanted to cut off her long, beautiful hair and donate it to Wigs for Kids. Wigs for Kids is an awesome program that takes donated hair and create wigs for children that suffer from the awful side effect of hair loss from chemo treatments. Jetta cut 14 inches of hair off!! As Jetta returns to school, she is berated with comments from her classmates. "You're so ugly, I want to throw up when I look at you." and "You are the ugliest girl in school". So, what was her teacher's response?? "Just don't listen to them."

Really??? That is the best you can do Miss Teacher? Don't listen to them? What happened to the "Zero tolerance policy" that is supposed to be in place in all the schools? Do you not remember all the children's lives that were cut short by suicide because of bullying? What about the innocent lives that were taken from children shooting up schools because they were bullied and educators like your self, did not do a damn thing? Do you think that will NOT happen in Dayton, at YOUR school and the best you got is "Just don't listen to them."??
Now, let's take a look at the law, shall we?? According to stopbullying.gov :
          C. Investigating and Responding to Bullying Includes a procedure for promptly investigating and responding to any report of an incident of bullying, including immediate intervention strategies for protecting the victim from additional bullying or retaliation, and includes notification to parents of the victim, or reported victim, of bullying and the parents of the alleged perpetrator, and, if appropriate, notification to law enforcement officials.I'm pretty sure "Just don't listen to them" is a NOT part of "Investigating and Responding to Bullying".
By the way... "Schools refusal to recognize bullying violates the Ohio Law prohibiting bullying."
Dear, sweet Jetta. Cutting your hair to give to another child is the most amazing gift. Your generosity is awesome! The horrible, selfish, insecure, feeling threatened by your beauty, jealous little twits will reap what they sow one day. You keep your chin up! You are the one who made a difference in someone's life by donating your hair. We should all learn your generosity!!

Hugs!
Jenn
#standwithjetta
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Cleveland Clinic, EMG, Vomiting and Explosive Diarrhea!

Made it back from Cleveland Clinic in Ohio. I have been going to the Mellen Center for Multiple Sclerosis for a year now. Even though, at this time, I do not have the official diagnosis of a MS yet, I am being watched closely. I had 3 appointments back to back this time. MRI, EMG and one with my neuro. Hubby and I decided to go up the day before since my MRI was scheduled for 8 am. Woohoo! Alone time together without children! It was wonderful. So, went to MRI. Piece of cake. By the way, Cleveland Clinic has a MRI that is more open (but not an open MRI) so you don't feel like you are in a coffin and Faster. I had 3 scans. Brain, eyes and cervical spine (with and without contrast). It only took 1 hour!!  The EMG on the other hand, alright, I am not going to sugar coat it, it was painful!! If I didn't know any better, I would have thought the Doc was shoving nails in my leg, foot, hip and back. It hurts! The doctor was feeling around my hip. She says "Right there is my next spot.". I said "Umm...that "spot"... is a Fibromyalgia trigger point". She asks if I have Fibro and I responded "yes". Doctor says "Well, this is not going to be fun.". Great!! So, I made it through the horrible nail gouging with results if no large nerve disease but a diagnosis of Small Fiber Neuropathy. (Click the link to learn more) I opted out of the biopsy to guarantee the diagnosis. What is the point of having a biopsy if the treatment is Gabapentin for which I am already taking?? Grabbed a bite to eat before the appointment with the neuro. Hubby had a yummy looking turkey, cheese and BBQ sauce sandwich and I pepperoni and cheese slices.  (bear with me for this is important fact for later in this post) See ya in a year Cleveland!!
The trip home was fun! My father in law was admitted for irregular heartbeats and being scheduled for a quadruple cardiac bypass. So, we stopped at the hospital on the way home to see him. Finally on our way home, about 10 minutes away, I hear my hubby's stomach growling and him starting to moan because of intestinal cramps. Thank God we made it home before the vomiting and pooing started at the same time for him! Food poisoning from that yummy looking sandwich from the hospital! Go figure! Lol Sorry honey! Here I am exhausted from the trip. Hurting from the walking and sitting in the car for 4 hours. Trying to help my puking, crapping his brains out, moaning from cramps husband. Not to mention he's a man who is sick. (Ladies, you know what I'm talking about) So much fun! Never a dull moment!!
Hugs!
Jenn

Update: My father in law made it through bypass surgery just fine!! He's a tough old bird!


**Hotel suggestion...Holiday Inn Express, downtown Cleveland. Beautiful, clean, big room for $109 per night. The room goes for $149 but since I was a patient, the room was discounted.**

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