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Sunday, June 29, 2014

Truth about symptoms Part 2...Fatigue

Updated...

The dreaded fatigue! I hate fatigue! Really, really H-A-T-E fatigue! Did I mention that I hate fatigue? You always see "fatigue" on a list of symptoms for Fibro, MS, Sarc, Lupus and pretty much any other illness out there. But no one really says what fatigue truly means. Hopefully, I can! I can usually push through all my symptoms except for this one. I can't fight this one.
No matter how hard I try, usually whips me. I have severe fatigue. Now, I am not talking about just getting tired and have to go lay down. No, this is knock down, go lay down before you hit the floor, feeling like you are getting the flu, blurry vision, hand tremors, cannot  speak correctly, like you just ran a 5 mile marathon but all you did was vacuum the living room, kicking your ass fatigue. Only way I can explain it! Lol

What I want people understand about my fatigue (and yours too) is:

  1. I wake up tired. I wake up fatigued. I wake up feeling like I have only had an hour of sleep when I just slept 8 hours.
  2. Everyday, I have to decide if it is really worth the energy to go to the store, vacuum, wash dishes, fold laundry or wash windows. I cannot do all of these in one day. Or hell, even in 2 days. I pick and choose, do partly, rest, do more, rest, finish the job, rest. Forget about dinner!
  3. Showering is truly a chore. The heat of the shower. The physical movement of washing. Shaving my legs...forget it lol. I have said in an earlier post, can't shower in the morning, zaps energy. Can't shower during the day, zaps my "good" energy. I can use that somewhere else. Try to shower mostly at night because I'm going to bed anyways but by that time I have used up all my energy throughout the day, tomorrow might be better for a shower. Maybe...
  4. When the fatigue hit's hard, it feels like I am getting the flu. Body aches, slight headache, muscle and bone aches. Just like the flu does. (This one took me a little bit to ignore. I seriously thought I was getting the flu lol)
  5. Riding in the car is very tiresome. I suppose it is because you are climbing into the car. Watching the road. Thinking about where you are going. This all causes me fatigue. I have to lay down. (No, I am not driving)
  6. Conversations. Seriously, conversing with someone fatigues me. I think it's because trying to process what the other person is saying and trying to process my own thoughts. Finding the correct words and hopefully saying them. A group of people to converse with just speeds up my fatigue. I tend to avoid groups.
  7. Lastly, this blog. Yes, this blog causes me fatigue. Even though 9 times out of 10 I am in my bed typing, it still causes fatigue. As I try to type, my fingers and hands tremor. My thoughts begin to run rampant at times. I forget how to spell simple words. I forget what I was just typing or where I was going with the topic. I read and re-read a paragraph multiple times and wondering "where in hell did that sentence come from?"  lol. Sometimes it takes me several days to type one post. But, as you can see, I keep trying.
Oh you spiteful fatigue, how I loathe thee! Some days you win but some days I win too! That is the battle that I face every day. And will keep fighting!!
Hugs!!
Jenn!
UPDATE: 



After talking with my mom, who has Myasthenia Gravis and Sarcoidosis, she reminded me that I forgot something...


8. When I (and my mom) get fatigued, let's say when I am at the grocery store, it feels like someone placed 50 pound weights on my legs and arms. My legs forget what their purpose is. I literally have to say "take a step damn it!". My arms are weighted and my fingers lose all fine motor skills. That frickin grocery cart seems like someone places boulders in it? Seriously, I can't push a grocery cart. Oh..going to pay is a challenge too. I cannot comprehend anything thing at this point. "Oh, I have to pay now? What? What do you need?" Whatever! Thank God for my husband and kids! (Side note: I cannot make it through the entire grocery store for all my groceries. I have to make several trips)


I'm sure I forgot something else too...what can I say...it's the fatigue!

Hugs!

Jenn

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Tuesday, June 24, 2014

The truth about symptoms...Urinary Incontience

I write this blog because when I look up information on the internet about the illnesses that I have, I see facts, figures and diagrams. Yeah, that's great but I want to know the truth. Cut and dry truth about chronic illnesses. How it actually affects people like me. That, my friends, is very difficult to find. So, I've decided that my next several posts are going to concentrate on the symptoms that I endure. From fatigue, pain, urinary and bowel incontinence, cognition, memory problems, word finding difficulty and whatever else that ails me. I try to find humor in my symptoms (as you can see with the Vertigo in the bedroom post). So, I think this first post will be about...Urinary Incontinence.
Peeing my pants just pisses me off! But can be funny. Hell, laughing makes me pee my pants. So does sneezing, holding too long, coughing, walking, sitting or absolutely no reason at all. Just stand up and there it flows!
One evening, my husband and I was in our bedroom, I stood up from the bed and pee is just flowing onto the carpet. Had no idea. Thought it was one of the dogs peeing. I'm looking at the dogs. The dogs are looking at the pee streaming onto the floor. Then, both of the dogs are looking at me like "um, excuse me Mom, you can pee on the carpet but we can't?" I thought my dogs were going to band together to go get a rolled up newspaper. All the while, my husband is laughing. Oh whatever!
When I was driving, I would keep an extra pair  of panties in my glovebox. Few years ago, my family and I went camping out of state. We had to take 2 vehicles because of all the crap we take, 2 kids and 2 dogs. We were on our way home, driving on a rural road. Cruising along nicely. Hubby driving in front of me with our son and I with our daughter. Here comes a State Police coming toward us. I look in my rear view mirror and he whips his cruiser around. "Oh crap sis, were getting stopped!". He goes around us and heads toward my hubby and son. At this point, me and sis are laughing because they are getting stopped and we are not. I pull over behind, shouted out the window "that's my husband, we will wait.". The officer holds up his index finger, telling me to wait a minute he will be right there. The officer then comes to my window. I say as I am laughing "Ha! You got my husband!". He says "license and registration please".  Well, hell! Ok, I'll get to the point... the registration was in the glove box. Yes, next to my spare pair of panties. I gave my daughter the look of death like don't you even pull those panties out and wave them around. Because in all honesty, that's what I would have done to my mom. (Sorry mom) I seen her wheels turning. Shot her a look again. She then pulled out ...the registration. Whew! The officer gave us a stern warning for speeding. On our way once again. My daughter looked at me and said "ya know mom, I really thought about pulling them out and waving them in the air". "Yes dear, I know." I don't know where she gets it lol
Urinary incontinence is just part of whatever this unknown autoimmune demyelinating condition. Also, it's part of God's great sense of humor. If you pee your pants, grab a pair of underwear and new pants and go on. It could be a lot worse, like bowel incontinence or your daughter waving around your panties in front of the poor unexpecting policeman!
Hugs!
Jenn

Tuesday, June 17, 2014

Domestic Violence...he's not going to change!

I like to write about pretty much anything that interests me, life lessons and my own experiences. Domestic Violence is one of them. Though, I am not writing this for me but for other women out there living through this hell everyday. If one person would read this and get out of the awful situation, then my job is done. For an outsider who has never lived with an abuser, it is truly harder than "just leaving".
According to the National Coalition Against Domestic Violence... 1 in 4 women will experience Domestic Violence once in there life. 1 in 4!!! So, you are NOT alone! 
The biggest thing the woman in a abused situation is that she thinks that her man is going to change. He promises her that. He will go to the therapy. He will cry on her shoulder. He will tell her he loves her and that he will get help with his anger. He will tell her that "it will never happen again". You will "date". Seriously! This is a phenomenon called "the honeymoon period". The man will do anything and everything to suck the woman back in. He will take you places, dinners, movies. Give you money, little freedom. Swears that he is going to therapy and taking medication. Will even swear off drinking. He will be Romeo, Ryan Gosling, Channing Tatum all rolled into one...for a month or 2. Then he has sucked her back in and it all starts over. 
Men who physically, mentally, verbally and yes, even sexually, abuses women...(pay attention)
 DO NOT, WILL NOT, EVER CHANGE!
I repeat...
DO NOT, WILL NOT, EVER CHANGE!

They do not WANT to change. They will NEVER change. They want to control you. They want to dominate, humiliate, own, enslave, beat you down. They will trick you into believing that they will do whatever it takes to make you happy, to save the marriage and to keep the family together. It WILL NOT LAST! Trust me, I know. I have had many, many, many honeymoon periods in my first marriage.
I got out, with 2 kids under the age of 6, no money, left with 1 duffel bag. I'm not going to lie, it was the hardest thing I ever had to do. I was scared, I felt as though I had to hide. I kept my kids close. Kept doors locked. Parked my vehicle with enough room so if I had to escape in a hurry I could. But I did it! I got out! It was the greatest thing I could have done. Not only for me but for my kids.
There is help out there. Protection Orders you can obtain to keep them away from you. These are FREE of charge. There are programs, abuse shelters, group therapy, resources out there. Advocates! They are terrific! Call the Domestic Violence Hotline...I did, at 2 in the morning. They are there 24/7!




I just want to leave you with a few "RED FLAGS":
  • Has a terrible relationship with his family, especially with his mother
  • Makes you feel guilty of the clothes, makeup you wear or how your hair is styled
  • Monitors your cell phone, Facebook, text messages.
  • Will not allow you to have a cell phone, Facebook or text someone
  • Not allowed to touch his cell phone and the bill goes to his work
  • Calls you: whore, fat, stupid bitch, lazy, worthless, piece of shit, slut...I could keep going but you get the idea
  • Constantly states that you are cheating on him. But you are not allowed out of the house??
    • Side note...when this is happening, he is usually the one doing the cheating!
  • Not allowed to have money or a bank account
  • Have to account for every item what you have spent at the grocery store from the money he gave you. BTW, don't take too long at the grocery store because that means you are sleeping around.
I have been divorced from my first husband for 10 years now. I am remarried to a wonderful man who would NEVER think to raise his hand or call me names. He loves my kids as if they were his own. I didn't know that I could be treated so good.
Just please remember, he will NOT change. Just get yourself and your kids out of the situation. It is hard, but it does get easier. 
Oh, I forgot, all the threats of my ex saying that he was going to kill me, hide the kids or take custody to them...all BS. He stayed away because of the protection order. In court, he wanted the minimum visitation schedule and missed a lot of his visitation time. They will say anything to scare you, keep you prisoner.
Be safe and Hugs!!
Jenn


Saturday, June 7, 2014

Vertigo in the bedroom!

Ok, if you are easily offended, STOP here and read one of my other posts. If you have read my posts before, then you will know that I am pretty straight forward. So, continue on for a good laugh!
Sex does not come often in my house. I'm either too tired, in too much pain or simply not in the mood. Well, my hubby was happy the other night because I was actually feeling up to doing it. It was moving along quite nicely. Endorphins running (which helps with pain by the way). Until....I attempted to get on top. HOLY CRAP the vertigo hit! In the middle of my "approach" the vertigo hit me stronger than it ever has. I just plopped to the side, grabbing my head and moaning because I was spinning so bad. Plopped, I mean like I couldn't stop my self and just hit the bed. Now, my poor hubby thought that he was "doing a great job" prior to the "approach" and I was just enjoying it. Oh heck no! I was spinning so bad that I couldn't move. It felt like when you were a little kid spinning in circles, you get so dizzy it feels like you are leaning to one side. Hubby started rubbing my back which that seemed to make the vertigo worse. So, I'm yelling at him not to touch me. He still thinking he's done a great job and I am having this wonderful orgasm. And yet he still thinks it is going to happen. So, now I am yelling at him "VERTIGO!". Of course, being a man, his response was "do you want me on top then?.  "Uhh...are you frickin crazy?" After a few minutes. My head stopped spinning. I try to "approach". Holy hell, here it comes again! Plop over on the bed again. Forget it! Not even worth it!
With all that said, in-vision what I just said (in-vision me looking like Jennifer Anniston please). Man and wife attempting to have "relations". Wife "approaches" on hands and knees and then just PLOPS OVER in the middle, grabbing her head, moaning. Husband thinking he is king of the world because he just gave his wife the world's greatest orgasm. Unbeknownst to him, she is just having a vertigo attack, but he's still hopeful to "be on top". Yes, it is really frickin hilarious! It really is! I think we laughed and laughed because of what happened. I'm still laughing.
After all the pain, fatigue, weird feeling sensations, peeing your pants and yes, vertigo....just remember to laugh. Laugh at a crappy situations. Humor is truly the best medicine. Vertigo and sex...not so much LOL

Hugs to all!
Jenn!

Sunday, June 1, 2014

Avoidance and just being tired!

Well, hello! It has been awhile! There is a reason for that. I have been avoiding thinking about my illnesses and the limits that I have. I get like this from time to time. One moment, I am researching symptoms and the other moment, I just don't want to think about it. I have been avoiding lately. I think it is just because I feel useless, tired, no purpose. I don't want to think about how I am declining. I don't want to think about what the next 5 years are going to bring. I don't want to think about being dependent when I was just an independent woman. I know avoidance is not the way to go and I think with this post, I am getting over the hump lol So let me vent....
I get tired of planning my day. Not the simple "oh I have to go shopping, then to the bank and then to a friend's house". No, that is not the planning I am talking about. I am talking about "ok, I have to get the dishes done. Take a nap/lay down. I have to vacuum today, take a nap/lay down. I have to take a shower but wait, what time is it? I can't shower in the morning because that will use up all my energy for the day. Maybe in the afternoon but then I won't be able to do dishes or vacuum. At night, ok but now I am too tired from the dishes. Is it really worth the trouble showering today??" That is what I mean about planning. Planning is even tiring.
I'm tired of telling my legs to walk after a short distance. Really! I literally have to think in my head "ok right leg, left leg, right leg, left leg...oooh a bench!" I worry about my daughter's softball games. I did make it to every one this year but it was difficult. I don't want to tell my daughter but she is smart. I know she knew it was hard for me. But I did it!
I have really noticed a decline in my cognition and memory lately. Wait, what was I saying? LOL I couldn't resist. For instance, I was in pre-op for an epidural the other morning. I wasn't understanding what the nurse was talking about. Bless her heart, I bet she repeated herself 4 times. I just couldn't get it! My memory and word,  hmm..crap..hmm..oh yeah FINDING, word finding, has declined, ugh! I don't know that I am asking the same questions to my hubby and kids. I don't know that I already had a conversation about a specific topic with my hubby and kids. Losing the word in a middle of the sentence just sucks! I can't say it any other way but it sucks! Not to mention losing what you were talking about in the middle of a conversation sucks too.
Ok, I am done venting now. I think I really needed that lol. With all that said, I am still here. I am still fighting to figure out what is truly wrong with me. I am still here, fighting through the pain and fatigue, going to my daughters softball games. I am still fighting to put my thoughts together. I guess that is the most important part of having an unknown demyelinating condition. Still pushing through even when you are feeling down and trying to avoid it. I hope someone out there can relate!
Hugs to all!
Jenn