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Wednesday, December 24, 2014

Merry Christmas!!

To your family from ours, have a wonderful Merry Christmas!!!
Also, a special thank you to all my readers and followers. Writing this blog has helped me in so many ways. I have met some awesome people though my blog and it has really made a difference in my life. 
Thank you! Thank you! Thank you!
Merry Christmas!!
Jenn, Sam, Sis and Jake!

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Monday, December 22, 2014

Please rate your pain today? Ok, what area?


The pain scale. Technically known as the "Wong-Baker Faces Pain Rating Scale" is the most absurd scale for those of us with Chronic pain, Fibro, Lupus, MS etc...etc... Because we just don't have one area of pain. It is wide spread pain that changes hourly and sometimes by the minute. That may sound like I am exaggerating to some but us chronic pain sufferers know how true that statement is. When you go to an appointment, the nurse asks you as soon as she gets in the door about rating your pain but never asks for different areas.
Let's look closer shall we?
Nurse: "So, on a scale from 0-10, what is your pain today Jenn?"
Me: "7"
Nurse: "Is that your neck?"
Me: "No, my neck is a 3. My lower back is a 7.
Nurse: "Okay."
Me: "My fingers are a 2. My knees are aching around a 4. So you better grab an umbrella because it IS going to rain later. Upper back is a 3. My left elbow is a 7ish when I lift items but right now a dull 1. But it does give me an urge of wanting to rip it off because it aches constantly. My feet are maybe a 1 but a 10 when I first get out of bed in the morning.".
By this time the nurse has lost interest and you get the eye roll. BUT IT IS ENTIRELY TRUE!! Our pain is never in just one area of our body. It is everywhere, rated all up and down their precious pain scale. Do I sound a little bitter? That's because I am. It is bad enough being in pain every single minute of every single day, you feel like you have to prove it to the physicians, nurses, clinicians, family, friends, loved ones and that you are NOT crazy nor making it up just to get narcotics. You just want pain relief. The precious, absurd pain scale doesn't really even give a clear picture because I think we have been in pain for so long that we are used to it. Meaning, my dull aching left elbow as a "1" could possibly be a healthy person's "7". Or my husband's "15". Love you babe!
I just wish there was just a more accurate way to explain your pain. I wish the pain scale was not just for one site. I suppose this is where we have to advocate for ourselves, ignore the annoyance eye roll and put it all out there without being judged that we are crazy or just wanting narcotics. We just want to feel better!!!

Brilliant!!!

Hugs!!
Jenn

Just a little side note... My hubby pulled his hamstring the other day. It is painful. I know that it is but I did say to him "Now, imagine that pain everyday. That is what I go through. That is why I get bitchy".

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Thursday, December 18, 2014

Holiday gatherings and chronic illness

Ever since I was a little girl, Christmas was my favorite. Not so much because of the presents but I loved the food, family and the love that was shared.  I would wake up and look out the window to see if we were going to have a white Christmas. (Ok, I'm a 30 *cough cough* something year old woman and that is still the first thing I do Christmas morning.) Ever since this stupid chronic illness has become more pronounced, I am having more and more trouble with gatherings. The noise. The people. The conversations. Oh and let us not forget about the look of "Well, you don't look sick!" and the lovely comments that we have all endured. That is just the tip of the iceberg. Hoping like hell I am going to have a good day. Because I never know what kind of day I am going to have until I wake up. Is it intolerable pain or minimal pain? Little fatigue or kick my ass, where's my bed fatigue? And the planning of the day is taxing its self. So, if the gathering is at 1 pm then I have to be in the shower by 11 am so I will have enough time to rest before we hit the road. Fingers crossed that I am having a good day and not a flair.


Having a chronic illness, you have to give up so many things in your life and Christmas is not as enjoyable as it once was. I know, I know, life it what you make it but having a chronic illness sometimes sucks all the Christmas spirit right out of you.
And of course I have to put on the fake smile! If you have chronic pain/fatigue, Fibro, Lupus or whatever, you know what I am talking about. When asked "How are you feeling?" you put on that fake smile and reply "I'm doing ok" because you don't want to go into detail but you really want to say like... "The TV is blaring, little heathen children running around screaming, 20 people talking at once is really crawling under my skin and making my pain shoot up to an 8!" Why not say this? Well 1. It would be rude and they would think you were crazy and 2. A person who does not have chronic pain, Fibro, Lupus, Chronic Fatigue or whatever will never truly understand what I am talking about anyway so why waste my breath. Hence the fake smile!
Don't get me wrong, I do love Christmas. It is a wonderful celebration of Christ, family and love. But having a chronic illness just takes away from that. So, I decided to pace myself. Enjoy as much as I can. Do what I can. Rest when I need to and say "No" if necessary. Extra Buspar wouldn't hurt either!
Merry Christmas!!
Hugs!
Jenn

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Thursday, November 20, 2014

New Discoid Lupus tab with lovely pics included!

For the longest time, I was embarrassed by my rash. Tried to cover it up. Feel shame when people look at me because I know they are just looking at the rash. And for some, who do not know any better, they think it is contagious. Whatever! Now, I feel like there is nothing to be embarrassed about because I can't help it. Think what ever you want. It is what it is. Actually, sometimes, I find humor in what the rash appears to resemble.(One looked like a hickey) Yeah right! LOL So I decided to post a few pics to share. You DO NOT have to be embarrassed! You DO NOT need to feel shame! So, I am putting it out there! Click on the tab at the top of the blog titled "My lovely Discoid Lupus Pics" or simply click on the link.
Hugs!
Jenn

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Sunday, November 16, 2014

Depression...what people really don't know.


Ever since the tragic passing of the great Robin Williams, depression has come out of the shadows. Now, Wayne Brady and other famous people are "coming out". People think "Well, what do they have to be depressed about? They are famous and rich!". Depression is not that simple. I have Major Depression. I have for years. I take medication daily to help but it doesn't take it all away.   A person who has never had depression will NEVER truly understand what it is like. It is NOT just feeling down or blue. It is not about your material possessions, how much money you have or how well off you are. It is this deep down, sorrowful, gut wrenching sadness. Sometimes, it's not sadness. Sometimes it's anger, feelings of worthlessness and having no purpose. You don't want to get out of bed. You don't want to go out of the house. You don't eat. You just want to be left alone, in a dark room to hide under the blankets. It can have physical effects too. Causes you to have pain, migraines, muscle spasms and not make you physically able to get out of bed. Seriously! Ya know, I really didn't understand how a person can be so depressed that they physically could not get out of bed until it happened to me. I, truly, physically, could not get out of bed. I had just lost my insurance and was in the process of getting another. And of course, I ran out of my medication. The cost was over $350 for a month's supply. We could not afford it since I could not work anymore because of Fibro fatigue, pain and the unknown demyelinating condition. So, I was cold turkey off my antidepressant.  (Never ever, ever, ever, EVER do!) That was the most God awful experience in my life! When taking Effexor and you stop it cold turkey, you not only create a MAJOR depressive episode, you have physical withdrawal symptoms. Nausea, dry heaving, tremor, electric shock feeling. I could not get out of bed. My body would not let me. I cried so hard and I don't even know what was wrong. I was so distraught. I would not and could not eat because I was so nauseous. I just cried in my bed. After a 2 days of this, my hubby knew I needed help but felt stuck because of no insurance, lack of money and was in fear of the worst. So, he scraped together enough for a weeks supply and prayed the new insurance would kick in before I ran out. Luckily, it did kicked in.

Many people do not seek treatment for depression because, I think, it makes you feel ashamed. You are supposed to be able to sail right through life. No problems. No worries. You feel as though you are judged like you are crazy or weak. For years, I just sucked it up because "What did I have to be depressed about?". I had a great job, awesome kids and finally a really good marriage. So, what did I need the meds for? So, I would be on the meds for awhile and then stop. Get depressed. Put off going to the doctor. Until, it started causing problems my marriage. I shut down. I shut myself off. Easily angered over stupid things. My hubby came to me and said "Jenn, something has to change. I know you are depressed again. You need medication. It's okay and I love you". Ever since then, I have taken my medication faithfully because I know that I need it.  I especially knew that I needed it after going cold turkey. Never again!

I mentioned that I would be on the meds for awhile and then stop. This too is a big problem with people not only with depression but other mental illnesses. A person will have a depressive episode, get on meds and then do great. After awhile, that person, will stop the meds because they think they don't need them anymore. BOOM! Big depressive episode! Unwittingly knowing that the reason you felt so great in the last 6 months is because of the medication!
Depression is NOT "oh woe as me! I am so sad please feel sorry for me!". Depression is  not something you can simply "snap out of". It does NOT go away if you "would just get out of the house more" or "stop feeling sorry for yourself". There is help. (Heck, you can even send me a message. I will do my best to help you!)  Depression is real, is terrible and definitely misunderstood. But you don't have to hide anymore!!!!
Hugs!
Jenn

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Sunday, November 9, 2014

Q & A with my husband about his view on my illnesses

My blog is mostly about how I feel and what I think. So, I decided to ask my husband how he has felt or feels about me being ill. I actually learned a few things that I didn't know and maybe you can share this with your spouse or loved one.

Q: Before I was sick, how was I, our marriage and life?

A:You were an outdoor person. Camping, yard work, fun with the kids. Lived at walmart lol. You were an extrovert. In the beginning, it was all about each other and the kids. So much love and fun. We never argued or fought. We are not well off but we had what we needed. We saw eye to eye on everything. We understood each other. We did what we wanted.

Q: When did you start noticing a change in me?
A: When you were 32. Rashes came more often. Sweats and RLS and PLMD. Heat was affecting you more. Fatigue was more prominent with heat. You would crash, sleep for 3-4 hours after an activity. You were still independent, mobile and doing your own thing. Good agility, dexterity, cognitive ability and multitasking skills were still there. Then it started to slowly progress with an increase in fatigue, muscle spasms and cramps in your back. Optic Neuritis hit Christmas eve. Then the big flair 2 years later that ended your career.

Q: What worried you the most in the beginning?
A: The fatigue and lupus in the beginning. We were not sure if you had SLE and really couldn't get answers from doctors. This sparked worry and depression in you which created barriers between our relationship. You started sealing yourself off. You didn't want to talk about it, ever. After the optic neuritis, and many, many doctor visits and still no clear diagnosis at that point, you closed yourself off to everyone. You felt as though you had to explain how sick you were, repeatedly. You were trying to get people to believe you because you didn't physically appear sick. To me it was confusing because the doc say it was depression, anxiety, you needed to reduce stress and exercise and you would shut down and get pissed off. Then the kids didn't know what to do. The kids were young and they didn't understand that this is a demyelinating condition. Kids thought you were going to get better. "When is mom going to get better" Sis would ask me. But to me our love seemed to be behind barriers because you were trying to except everything that was going on. This fueled your depression. So, that shut me out even more, Our communication and understanding of each other started to deteriorate because I wanted in and you wouldn't let me.

Q: When did you notice a cognitive decline
A: Right before the big flair. You would come home from work crying because you could no longer multitask, forming words and thoughts, memory was slipping and you had to actually think about walking. That was very disconcerting due to the fact that the cognitive decline followed your optic neuritis flair and you had to think about taking steps. Moving your legs and you needed assistance with walking. Your short term memory is slipping. You repeat stories, conversations and incidents. Worsens when you are fatigued. The first thing that came to my mind, MS, which my uncle passed away from. For me, if it is MS, is the long term, slow progressing MS?  Is it the rapid progressive MS where we only have a few years or was it SLE? I didn't know how to explain it to the kids.

Q: The big flair
A: That day, I was really, really worried because it hit you so fast. I was thinking SLE or rapid MS. We had nothing set up. We were not ready for it. We thought we had a few years. Financially, because that is the jump in my mind because you were the breadwinner of the family and rushes through your head when this happens, "Holy shit! I'm freakin out!" In today's society, you need 2 paychecks to stay afloat. What are we going to do? Depression increased because you could no longer work. Cognition diminished significantly. You went to a multitasking situation to one thing at a time.You had to go from thinking like a woman to thinking like a man! LOL One thing at a time. You could never get rested. Fatigue was getting worse along with the pain and muscle cramps. Weird sensations in hands and legs. Barely walk to the bathroom without assistance and walk back to bed.

Q: My depression, anxiety and short fuse...
A: One fuels the other. There were days that depression was bad, anxiety was off the chart and you're fuse very, very short fused. Any noise from the kids would set you off. We needed to get the depression under control because it was really going to hurt our marriage. Communication was nill. Seemed like a "need to know" basis. You wouldn't tell my unless you absolutely needed to tell me. You are the QUEEN of bottling it up.
Q: Our sex life, then and now
A: Before...WOW and YES PLEASE! That was before you got sick. It was extraordinary! Slowly decreased as your illness progressed. Now... if the moon and the stars align perfectly and the mood hits you just right...I might have a shot or I'll get shot down, which is probably more likely. You are rarely in the mood. We can't do it in the morning because that would physically ruin the rest of the day. By the time evening comes around, you are too tired, in too much pain or just not interested. But when we do, we have modified our sex life to suit your abilities. (This is Jenn...what hubby is trying to say is that we have breaks for me to rest. Try to fight off fatigue and the "weighted" feeling. Don't forget about the vertigo at times. Certain positions are impossible and frustrating, so why even bother with those. We do have great "modified" sex...when I'm actually in the mood)
Q: And now, after all of this...how are you feeling with everything?
A: Our relationship changed after a big blow up. "Blow up" was due to many factors. Money, depression, medication, loss of your independence, loss of your control of your life. Since then I have been the caregiver, father, chaperone, breadwinner, husband, shoulder to cry on, friend (after KIM of course lol). I think we understand each other more. Now that the kids are teenagers and they have dealt with illnesses of their own, they have a better recollection of what mom goes through. They also have a better understanding of your abilities and try to help you as best as expected from a teenager lol. Our marriage is good. We are moving along. No severe progression of your illness at this time. We are grateful for that. We finally found a few doctors who are helping you get sleep, pain relief and your depression under control.
Hugs!!
Jenn

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Sunday, October 26, 2014

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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Wednesday, October 15, 2014

#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!





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Monday, October 13, 2014

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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Thursday, October 9, 2014

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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Tuesday, October 7, 2014

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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Sunday, September 28, 2014

Wooooohoooo!!! 4 weeks without a cigarette!!!

4 WEEKS TODAY!!!!! WOOOOHOOOO!!! I still cannot believe I have come this far. I would have never imagined going 4 weeks without a smoke. Yea for me!!!!!
Hugs!!!
Tobacco Free Jenn!!

Wednesday, September 24, 2014

Chronic illness and my best friend..

Lately, I have been having a hard time dealing with the fact that I cannot do certain things like I used to. I used to be able to do anything that I wanted. Camping, shopping, driving, working...I truly miss my old life. I have said it time and time before, my mind says "yes you can" and my body just laughs and says "yeah right!".
I am fortunate enough to have a wonderful best friend. Kim, who I met while in nursing school 10 years ago. We have so much fun together no matter what we are doing. We can laugh at anything and we can just look at each other without saying a word and know what each other is thinking. We are always there for each other no matter what it is. Death of a parent or birth of a grandchild. We know that we will always have each others back.
Few years old but that is alright!!
Having a chronic illness as I do, tends to dampen the relationship. I am not able to do the things that we used to do together. We would shop, go play Bingo, camping, dinner out at times. I used to drive to her home once a week to see her (though I say he is MINE) grandson. Now, I am no longer able to do these kinds of things and if frustrates the hell out of me.
For a while, I was feeling like, a jealous teenager that MY friend was hanging out with other friends. But as I thought about it more and more, I realized that I wasn't jealous of the fact that she  has other friends or fear that I was being replaced. It is hurt that I felt because I am unable to do what I used to do. I cannot go camping when it is too hot, which is most of camping season. I cannot drive over to her house weekly anymore. I cannot sit for 3-4 hours and play Bingo because sitting too long hurts, concentrating for a long period doesn't work. I'd probably being yelling out "Yahtzee" instead of "Bingo" because my mind would be fried lol. Shopping, forget it lol Unless I have a motor scooter. But God help us if I'm driving! lol It is just so depressing! Frustrating! It seems like it just takes more and more away from me. Another slap in the face! This is another aspect of chronic illness that you don't see in a fancy pamphlet.
I am happy that my bestie has a friend that she can go camping with. And even though, I have all these thoughts of feeling sorry for myself, the hurt is real. I am fortunate to have such a wonderful person in my life. She will probably slap the shiz-nit out of me after she reads this because she will not think anything of the sorts. She knows that there are things that I cannot do. I know that she will tell me that I am not replaceable, we will always be best friends no matter what and it doesn't matter that we don't go and do things like before as long as we continue to talk 20 million times a day.
I love ya Kim!!
Hugs!
Jenn
On a side note: we don't actually talk 20 million times a day. But it was figured in one month...38 & 1/2 hours but whatever! LOL

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Wednesday, September 17, 2014

Dog, skunk and God's great sense of humor!

Whom ever thinks that God does NOT have a sense of humor, you are WRONG!! God has a terrific sense of humor! Especially to me and my family! It was 1 am. I'm sitting, with my hubby Sam, in the living room, finally able to talk to each other because he worked crazy hours that day. My lovely dogs, Sophie and Buddy are telling me that they want to go outside to potty. Sure! Again...1 am. Sam and began to converse again. Few minutes later, the dogs are barking.
Sophie
Buddy
Ok, go to the door and holy hell it stinks! "Oh $hit Sam! They [dogs] got a skunk!" My dogs managed to corner a skunk underneath one of our vehicles. Sam comes to the door. He starts dry heaving dramatically. I'm trying to not let him see that I am laughing.
I don't know what the hell to do??? I'm a city girl! So, I did what anyone else would do...Google. Then, of course, status update on Facebook for help. Sam is guarding the dogs in a corner of the living room making sure they don't touch the furniture. After a lot of suggestions and research, I found a concoction that was popular:

  • 1 QT Hydrogen Peroxide 
  • 1/4 cup Baking Soda 
  • 1 teaspoon (I used a tablespoon) Dawn Dish Soap
Sam had taken the dogs back outside, created a barrier so they wouldn't run a away and starts to scrub them with water and Dawn Dish Soap while I am being the mad scientist making my magical concoction. As Sam is bent over scrubbing, he gets stung by what I would say a hornet or wasp. So, now he's yelling that he got stung. Yelling at the dogs telling them "What is wrong with you guys? Don't ever go for skunks again! Jenn, THEY NEED TO LEARN! Maybe going through this will teach them." I said  "Yea honey...(as my eyes are rolling) I'm sure they learned their lesson.". 
So, Sam continued to scrub down the dogs with the concoction . After they were rinsed, took them into the shower for another bath with just the dish soap. It actually worked! Dogs actually smelled better than they did before the skunk. Never a dull moment! So, if you think God does not have a great sense of humor...think again!
Hugs!
Jenn

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Tuesday, September 9, 2014

1 week of not smoking!

I am a smoker. I have smoked since I was a teenager. I'll say it, I love my smokes! I know, I know...smoking is terrible. Hell, I'm a nurse. I truly know what smoking causes. Seen it. Even been in an operating room observing a partial lung removal due to smoking. (Which was really cool btw!) And yet, I continued to smoke.
My bestie, also a smoker, tried the new vapor cigarette. She loved it. After about a week, she was telling me how she didn't even want a real cigarette. Really?? Of course, I still wasn't to sure about giving up my beloved smokes. She is doing wonderful on the vapor cig. So, that got me thinking. My best friend is a very strong, independent woman. If SHE could do it, I can too. I know am pushing 40 and with all the medical problems I have, smoking is really a stupid thing to do. So, on August 31. 2014 at 2:45 pm was my last cigarette. It has been over a week now and I can't believe I haven't had an actual cigarette since then.
Please don't get me wrong, it has been a challenge. Still is a challenge. It is not an easy thing to do by any means! But I think what is hardest thing about not smoking, is the change in routine. You don't realize how much smoking is part of your routine until you try to stop. For years, I woke up in the morning, peed and went outside to smoke. The first few morning, and yes, sometimes still, I will sit at the end of my bed, twiddling my fingers, wondering what I need to do. Not to mention the dogs are a part of your smoking routine too. I get up in the morning and they are looking at me like "Ahh, Mom?? What are you doing? Aren't we going outside?". It's like, you know you are supposed to be doing something but you don't know what. That feeling does go away. I just have to figure out something else to do. I have tried pushing off my vapor cig as long as I can in the morning just so I can get used to another routine.
Triggers are tough. Triggers meaning: smoking after eating, riding in a car, before I go to bed, seeing people smoke on tv (Sons of Anarchy will be the big test Tuesday!) and talking on the phone. That last one is my biggest trigger!  Talking on the phone! OMG! That phone! Since I am home all day, the phone is my only outlet to the outside world. I am on the phone a lot during the day. I usually hit the vapor cig when I am on the phone.
I sometimes get the impression that people think that when a person switches from real cigs to vapor ones is no big deal. "You're just trading one for the other." It's not that simple. Trust me! It is a huge deal! It is a major accomplishment! It takes will power like you have never known. It does change your entire life. 
The best thing about doing it, my kids, hubby and mom are so proud of me. Gives me a sense of joy.  I know that it has only been a week but a very proud week it is! I am going to keep trying! 
Hugs!
Jenn

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Wednesday, September 3, 2014

Contact info link fixed!

It was brought to my attention that the email link on the "Contact" tab above was not working. It is now fixed and functional!! So, please do not hesitate to write me. Just remember, I am NOT a doctor.

Hugs!
Jenn

Friday, August 29, 2014

Seriously Doc? After a week and still no call back?

I understand that having Discoid Lupus is not life threatening. I really do but I am having a flair right now. It is not exactly painful. More irritating like a bad sunburn. Doesn't itch. But when I have a flair, it does not just create a rash. It makes my joints hurt and muscles ache. I am more fatigued when I attempt to do little things. It just really, really, really sucks! My neck is crazy! As pictured below.


My Rheumatologist likes for his patients to use the new online charting and messaging system. So, Monday, I sent them a note explaining that I am having a flair and could I please have a Medrol dose pack like I had before for a flair? Tuesday came and went. Wednesday, I called and left a message for the medical assistant. Still heard nothing. Thursday I called again and knowing if I press "1" to make an appointment, that I would get a live person. I explained what had happened and the response was "the doctor has both messages. Hopefully he will get to it soon". Hopefully?? Huh?? Ok, whatever. Friday is here. Office closes at noon. Crap! Of course it is after 2 pm. So, I called the on-call to speak to him. That was at 2:10 this afternoon. On-Call said he was sent a voice-mail and will be calling you soon. Whelp, it's 8:20 pm and he never called.
A part of me really wants to call on-call at 2 in the morning. Oh!! But I won't. I will probably end up going to the local urgent care to get a dose pack. Let me tell ya, my appointment with my Rheumy is in November. He is going to get an ear full!!! Ridiculous! It is not like I am asking for narcotics. Flippin steroid pack so I can feel better. So frustrated!!
Hugs!
Jenn

**On a lighter note, my spell checker wanted me to change "Medrol" to "Demerol". Hmm...that would REALLY make me feel better. LOL**

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Monday, August 25, 2014

Handicap Placard and Dirty Looks!

Oh the dirty looks that I get! One of the wonderful effects of having an invisible illness that is not usually talked about! Last night, my hubby and I go to the grocery store, (I have blogged before about car rides are tiring in it's self but before that I stupidly swept our little front porch. So going to the grocery store was a GREAT idea!! *Please note the sarcasm*) and we pulled into a handicap parking place. I pulled out my placard and placed it on the rear view mirror per Ohio law. My hubby gets out and comes around to my side of the truck to lend me his arm. (Because I am usually too stubborn to use my cane) Here comes a man and a woman with the sourest, nastiest, most judgmental look on their faces. Looking at me like "REALLY! She doesn't look sick! Why does she have that handicap placard?" Just a nasty, awful look. I grab a hold of my hubby's arm and at this point, my legs are not wanting to move. Tired from sweeping, tired from the car ride and now really tired to walk around the store. But...I did it. Though, I can seriously feel the dirty looks coming from behind me.  My hubby even sensed it. He said "Wow! Did you see the dirty looks?". I said "Oh yeah!".
Since I have been sick, my filter to voice my opinion and feelings has been cut down to almost nothing. I so wanted to say something to those miserable people but I think at that moment I was more worried about making my legs move. I'm actually impressed with myself for not saying anything. I think my hubby was too. But, if I could say something, it might be a little like this...

"Why are you looking at me? Did THEY send you? Do you have aluminum foil in that bag? I need the foil because then THEY WON'T BE ABLE TO READ MY THOUGHTS! GET AWAY! GET AWAY!"
Wouldn't that be awesome!

Hugs!!
Jenn

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Friday, August 22, 2014

A letter to fatigue...

Dear Fatigue,
Oh, Fatigue, what can I say? You and I have been together for a long time now and I think it is time that we break up. Seriously, we can no longer have a relationship! You are like a abusive, controlling husband who has to ruin every move that I make. It's time for you to go! You know how some people say "It's me, not you". Welp, this time, it's really YOU and not me! You suck the life out of everything that I do. From vacuuming to showering, you just completely exhaust me. Not just physically but mentally. Seriously? You don't even like me folding laundry. I mean come on...laundry? Really? Why can't you just leave me alone? All I want is to have a normal life without exhaustion. Without the feeling of falling over because I was washing dishes. Without forgetting words, saying wrong words that make me look and feel like an idiot. You make me miss out on events, family functions, enjoying time camping and simply going for a ride in the car. For the love of God!! I am just sitting in a moving car and you have to come along and ruin it. You creep up like some silent ninja and karate chop my ass,  make me sweat, turn my face beet red and give me the sense that if I don't recline the car seat back I am going to pass out. Dude, it's just a car ride!
You seriously need to leave! BTW, out of all my symptoms, you are the WORST! I don't like you, you suck and you just have to go!
Sincerely yours,
Me!
P.S.-Don't forget to pack up ALL of your little cohorts too. The chronic pain, muscle spasms, depression and especially the URINARY INCONTINENCE!

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Tuesday, August 19, 2014

Saturday, August 16, 2014

My nemesis...The Lupus Rash!

Ya know, I was hesitant to write this. I think it was because my Lupus rash (Malar Rash or Butterfly Rash) is embarrassing, ugly, kills what ever little bit of self esteem I have left. But then again, I thought, I can't help it. It is what it is and I am sure that there are others who are dealing with this and feeling the same way. I not only develop this crappy rash, I also experience:

  1. Increased fatigue but a different feeling of fatigue. If that even makes sense??
  2. Joint pain
  3. Feeling like I have a fever but temp is normal. Get chills too, goosebumps.
  4. I feel like my arms are on fire!
  5. Just want to go to bed!
So, with that...here is my shame..
 This was last summer. My lovely back and neck. Had sunscreen on my face and arms. Hat on. Cooling towel on. OH CRAP!  Forgot to sunscreen back of my neck! This rash really hurt. It hurt to have a shirt on at times. Just a raw, grating, on fire, pissed off, angry skin! Again, steroids did a great job on this. I will never forget the sunscreen on the back of my neck again!
My lovely neck! The pic on the left is NOT ringworm and NOT a hickey...trust me LOL. I was asked that quite a bit. Even my Rheumy asked if it was a hickey!  I also got plenty of dirty looks and stares from strangers lol "Yeah, it's a hickey...So what? Jealous?" Hee hee! This was a few months ago. Something weird about the "hickey" is, the center of the lesion was numb. Lupus has to keep it fresh I guess. lol A wonderful shot of steroids cleared it up. Well, not completely but looked and felt better. Now, the pic on the right is going on right now. It's angry! I have been putting off calling the doc for steroids but I am thinking it is time!
Yes, you see Lupus rash on the list of symptoms but it's never truly explained. I just thought this was an important blog because I think people truly do not understand how it feels, not just physically but mentally.
Hugs!!
Jenn

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Saturday, August 9, 2014

Live in the Dayton area & have trouble with medications...Check this out

I take a ridiculous amount of medications per day. I mean RIDICULOUS! With the memory problems, unable to drive safely and the amount of meds I have to take, it was getting difficult. I started out with a pill box to fill every week but I noticed that I would be missing doses. My bestie, who is also a nurse, suggested that I try Hock's Pharmacy. Hock's have what is called "MultiPack".

There is a slot on the side of the box where you are able to pull out the pack that you need.

Each pack is filled with the all the meds you need for that time of day. Example, in the morning, I take 5 medications. Hock's will put all those meds in one pack. The pack lists what medications are in it, what time of day you need to take it and what doctor prescribed it. They are very easy to open! So, I take medication 4 times per day. I have a pack for each!

It was so easy to set up too. I went to the pharmacy to sign up and someone will get with me. I'm thinking "yeah right! What in a week?"Nope! Within 10 minutes, a sweet lady called me for my information. She transferred all my medications from previous pharmacy. She reviewed the medications that I am taking. Set up times to take them. They were delivered the next day! Yes, I said they DELIVERED...free of charge. According to their website, they serve 5 surrounding counties.
So, now I don't have to worry about if I took my meds correctly. I don't have to go to the pharmacy 3 times a month because they all get filled on different days. I don't have to wait on my husband to take me to the pharmacy. It's great! I should listen to my bestie more often lol

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Friday, August 8, 2014

New Chat on Monday August 11th @ 8 pm EST

New open chat on Monday, August 11th at 8 pm EST. 
Monday's topic:
How do you deal with loss of independence?

She's red faced...T minus 3 minutes! Wait...What??



When I get fatigued, all sorts of physical things start to happen. I sweat like I just ran a 5K. My vision gets distorted. My legs and arms feel like someone put 50 pound weights on them. My face turns beet red. Concentration and word finding gets way difficult. So, as my hubby and I were sitting at the urgent care this evening with our teenage daughter for a sprained ankle. If you didn't know, a sprained ankle to a 14 yr old girl is A.K.A. : bone is sticking out, foot partially amputated and hanging on by a thread and the threat of disfigurement is lingering especially since school is starting in 2 weeks. So, while Sis was getting her x ray, here is our conversation:

Hubby: "Jenn, you better lay down on the gurney. You are getting ready to "fatigue out" in 3 minutes."

Me: Looking at him like, really dude? "Naa...I'm good baby. I got about 5 minutes."

Hubby: "Jenn, your face is as red as your shirt, you are sweating like mad and you are having trouble with your words. You have 3 minutes before you are whipped."

Me: As I'm smiling at him "I'm fine honey."

We continue talking about current events.

Few minutes later, I some how went from sitting on the end of the gurney to laying down, arm over head, eyes closed, face beet red, sweating like there is no tomorrow, can't say the simplest word or even get my thoughts out. Ahh..damn it! He was right! I really hate that!

Me: "That was longer than 3 minutes babe." I don't know if I was trying to convince him or myself lol. Ok, me.

Ok, so I learned a few things.
  1. Teenage girls are not fun when they get hurt. (I pretty much already knew that one)
  2. My hubby is paying close attention knowing I am bullheaded at times and want to keep going what I am doing.
  3. 3 frickin minutes before I have to go rest before I hit the floor!
In my defense, I don't always know when to stop moving around to avoid getting "fatigued out". BTW, "fatigued out" is a term that my hubby made up. I am assuming that it means something similar to being "knocked out". But whatever lol
Yes, pride does come into factor when I am doing the simplest of tasks at home. "I can do this." "I'm not going to get fatigued." Yeah right lol

Darn you pride! Darn you hubby! 

Huggs!
Jenn

P.S.-my daughter's ankle is just fine. But of course she is milking it for all it's worth!

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Sunday, August 3, 2014

Wednesday August 6 @ 2pm Save the date!!!

Save the date and come join me for our first chat! Wednesday August 6th at 2pm EST.
Topic: How do you deal with your fatigue.
Take note of the new "Chat Calendar" tab at the top of the page!
Can't wait to chat with you!

Anger after doctor appointments...

Sometimes, I get so angry after doctor appointments. I get to the point that I don't want to go anymore. I get pissy before I have to go. Having an unknown demyelinating disease is scary enough but when the doctor gives you a rather absurd idea of what it could be. Just pisses me off even more! I mean seriously, I am telling you that I cannot have a certain illness based on blood results but you still want to argue and tell me that is what is wrong? I'm not stupid. Not only am I a patient, I am a nurse. I have family members with the alleged illness that you are suggesting. I know what I am talking about. So, whatever Doc, test me again if that makes you feel better. But it just infuriates me! I had to keep myself from crying while scheduling a follow up appointment for more tests and results. By the time I got to the parking lot, I was crying uncontrollably. My poor husband just held me close as I sobbed on his shoulder. I wasn't crying over the absurd suggested diagnosis. I was crying because I am sick and tired of being sick and tired. I was crying because I am tired of this mysterious illness. I am tired of doctors looking at me like I'm nuts. I'm tired of not knowing what the future is going to be. I said to my husband "What is it going to take? Do I have to wake up one morning and not be able to walk or use my legs? Will they stop looking at me crazy then?". He sweetly says "Jenn, I really don't know babe.". If the doc doesn't know, just say you don't know and send me to someone who you would think that would know. Don't sit there with your white coat on, throwing out ridiculous diagnosis that you know damn well that it could not be and say "Jenn, I don't know what is wrong with you. Let me send you to Dr. Whatever.". Gesh!! I just want to know what is wrong with me. Plain and simple!
Hugs!!
Jenn

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Thursday, July 31, 2014

New Chat room!!

I have added a chat room, as you can see to your right. (If you are not on the mobile app) I am planning on having chats about certain topics ie...Fibro, Pain, Fatigue etc... Give me a few to figure it all out and then I will post a calendar of dates and topics. Please check out the poll that I had posted at the top of the blog. I can also use that to get an idea about topics that you want to talk about! Chat with you soon!
Hugs!!
Jenn

Thursday, July 24, 2014

This is awesome!!

I found this on a MS support site. I feel it is not exclusively for MS.
I think it also crosses over to Fibro, Lupus and other illnesses too.
I couldn't say it any better!




Truth about symptoms Part 6..all the other crap!

The final part of my series of "Truth about symptoms" I decided to throw together all the other crap that affects me. I seriously could keep going..."Truth about symptoms Part 7890931" but I'm not going to go there. LOL Lemme break it down for ya...
  • Depression: I talk of this offen. I have struggled with depression for many years, even before I got the Fibro or Lupus diagnosis. But as those 2 hit me, my depression has worsened. Mostly because I was an very independent woman. Worked, kids, camped and now I am home 90% of the time. I have to depend on everyone to drive me somewhere. I depend on kids and husband for everything. I hate it. Having chronic pain is just plain depressing itself. It puts you in a bad mood when you wake up every morning and you can hardly move. Fatigue is depressing. Just even dusting the living room causes fatigue and that just pisses me off. Depression sucks!
  • My brain vs. my body: My brain is telling my "get up and go clean the house. But my body is saying "Ha Ha Ha...you are so funny". It is a constant battle. My mind, is that of before I was sick and sometimes it just doesn't understand that I can't do things I once could. In turn, this fuels the depression and anxiety. I get so angry! Why? Why can't I just get up and wash the dishes and not get fatigued? Why can't I take a shower and then go to the store? I really have to stop myself and say "Alright, you know you can't do that. Chill out! It's no big deal. The dishes will be there tomorrow. As will the laundry.".
  • Anxiety and agitation: My anxiety has increased right along with my illnesses. I am easily agitated. I find it more difficult being around a group of people. The chatter of people I find grating. It makes my skin hurt. It mentally agitates me. Increases my pain. I find myself wanting to run from a room full of talking people. So, I tend to avoid it. This also means missing out on family functions, parties and fun things. I have also noticed loud music or the TV turned up too loud has the same affect. So, I'm usually yelling "Turn the damn TV down!".
  • Tremors: They suck too! It's rather comical trying to text on my phone. My teenage daughter laughs how slow it takes me to type. "You're so old Mom!" The more fatigued I am, the worse the tremors get in my hands. Every morning when I wake up, upon rising, my entire body tremors. Most noticeably in my head and neck. Very strange!
  • Numbness in my legs and feet:  feels like I have thick, wool knee high socks on. I have had my daughter run her  finger up my shin just to see if I lost feeling. Feeling is still there but a weird thing happened. After she ran her finger up my shin, the feeling resinated, echoed if you will. Like she kept running her fingers up but she wasn't. See...this is why doctors look at me like I'M crazy!
  • Weird sensations:
    • Hands feel sticky after I wash them. Seriously..this took me awhile to get over. Every time I wash my hands, it feels like I washed them with glue. When it first happened, I was like OCD woman washing her hands and hubby and kids looking at me like I'm crazed! Dogs even stayed away because I was panicked. I have learned after I wash and dry just let my hands rest.
    • Trickles of water running down my legs. First, I always check to see if I peed. Because, ya know that happens...often. But whatever. I get this weird feeling that cold, very cold trickles of water running down my leg. 
    • Vibrating sensations on my legs. Like someone placed my phone on "vibrate" and laid it on my legs. Annoying!
    • Electric shocks on my face. If I move or jerk suddenly, I get this electric shock feeling throughout my face. Too bad it doesn't tighten up the wrinkles lol
There are just so many other symptoms that I could list on here. I know eventually I will post on it. Hope you are well!
Hugs!!
Jenn

29 things only a person with MS would understand!

Genius!
29 Things Only a Person With MS Would Understand

Hugs!
Jenn!!

Friday, July 18, 2014

Prescription for Disaster...The funny side of falling apart By Candace Lafleur

If you are familiar with my blog, then you know, that I believe that laughter and humor is a must. I laugh and make fun of myself and symptoms because what else am I going to do? Hunker down in a fetal position and cry? No! Candace Lafleur believes in the same idea. For anyone who has a chronic and life changing illness, Candace's "Prescription for Disaster: The funny side of falling apart" is a must read. This brilliantly written book is based on her adventures with Sarcoidosis, treatment and the situations, that you couldn't possibly make up, that she has endured. She decided to write this book, not only for her own healing but for people like me who have a chronic disease and know how important it is to laugh.
From the first chapter, I was hooked and literally laughing out loud. From sobbing student nurses who couldn't hit a vein to save their life to hot Australian tech and the "sweater of death". This book will leave you in stitches. Her dead on descriptions of the joys of prednisone, "Jabba the Hut in Drag" and the food cravings hit so close to home. While attempting to use a bedpan, she took the phrase "staying in bed" to a whole other level.
Now, Candace lives in the UK where the hospital wards are different than here in America. Where we may have our own private or semi-private room that we share with one person. In UK, there can be up to 4-5 in a room. She has an entire chapter dedicated to the joys of her wonderful roommates. "Special Needs Pirate Prostitute Brigade" to future Jerry Springer guests. Even inmates and racists! Each beautifully  described in detail to make you feel like you are right there with her.
I wanted to share an excerpt that I felt so connected with Candace...
"ONE OF THE MOST DIFFICULT ASPECTS TO DEAL WITH OF MY CONDITION IS DEBILITATING FATIGUE THAT IS NOT REMEDIED BY SLEEP - YOUR BODY IS SO BUSY FIGHTING ITSELF THAT IT DEPLETES YOUR ENERGY BEFORE YOUR EYES ARE EVEN OPENED IN THE MORNING."
I thoroughly enjoyed this book. I loved how she found humor to keep herself sane while going through all the motions of having a chronic disease. Thank you for writing it Candace!!
If you are interested in purchasing this book, you can click on the highlighted link in this post or click on the pic of the book on the left side of my blog. It will take you directly to Amazon. This book is well worth $12.65!!

Enjoy!
Jenn

**I was contacted by the author and asked if I wanted a free copy of her book and write a review. I was in NO WAY compensated for reading, writing a review or having a link on my blog. She didn't even know I was going to add a link on my blog until I asked for permission to use the image of the cover of the book. We all need to stick together to get through chronic illness!!**

Monday, July 14, 2014

Truth about symptoms part 5...Heat Intolerence

I am one hot momma! But not in a good way!


I've always wanted to be a "hot momma" but this is not what I had in mind. I always feel hot. I have severe heat intolerance. Heat intolerance is simply you cannot tolerate the heat. Causes physical symptoms that usually go away once you cool down. Cooling down is the hard part. You cannot just go in  air conditioned place and say  "oh that feels better". I wish it would work like that. Lol It may take an hour to cool off but it has taken days to recuperate because of the physical symptoms. Fatigue, of course, kicks my ass again when I am overheated.
I always joke that "my thermostat is broken". That isn't exactly a lie. I believe it truly is. I feel hot when it is 75 degrees (24 degrees Celsius). One evening, laying in bed with my hubby, he is down in his blanket shivering. I, sweating like mad. He asks "Why is it so cold in here? Is the window open?" I respond "Yes, it is". My annoyed hubby says "Jenn,  it's 45 degrees (7.2 C) outside! Shut the damn window!" What a wimp lol

Symptoms of heat intolerance include:


  • Excessive sweating. I mean excessive! Sweating in places you didn't know that sweat! Good Lord...my boobs! You'd think I was lactating by looking at my shirt! My butt crack sweats!  Really, my butt crack! Gesh! Nothing is safe!
  • Fatigue increases. Feels like you are going to pass out. Fatigue hits you hard! "I need to lay down NOW!" This sucks! I'm already fatigued as it is so now it's increased just because of the stupid heat. 
  • Concentration worsens. Words seem to disappear. Sometimes I cannot say "I need to go lay down". My hubby and kids have become mind readers when I get to this point. 
  • You're walking like you are drunk. "No Officer, I am not intoxicated,  just hot." Weakness and heaviness in my extremities. Very hard to move.   a feeling of laying down NOW! Once I get overheated, it seems like forever before I can cool down. 
  • Loss of coordination. My hands and fingers do not want to work. My fine motor skills are out the window. Along with tremors. Texting is real entertaining let me tell ya!
  • Vision changes and pain around the eye. I have had Optic Neuritis in the past. When I get over heated I experience something called Uhthoff's Phenomenon. Click on to see a great explanation. In short, Uhthoff's is usually a MS feature that increase of heat or exercise causes neurological symptoms to appear worse. After rest and cooling off, everything should go back to, lack of a better word, normal.
I just wanted to share this factsheet that I found from the MS Society in the UK. I don't think that it applies to only people with MS. Check it out here!

What to do to cool yourself off:

  • Drink cold drinks as you are outside, exercising or doing housework. "Cold Drinks" does not mean strawberry daiquiri or yummy lime margarita on the rocks with delicious salt ever so generously around the rim of the glass...Oh, wait, what was I saying? Oh yeah...Drinking a bottle of ice cold water as I am vacuuming the living room had made a huge difference. I was able to vacuum the kitchen too. (My peeps who know what I am talking about know that vacuuming both living room and kitchen is a big accomplishment!) 
  • Cooling products. I LOVE COOLING TOWELS! I could not make it through my daughter's softball games without them. My personal fav is Frogg Togg Chilly Pads. You can find them at Wal-Mart, Dick's Sporting Goods  Bed, Bath and Beyond and Bass Pro. I have found that Amazon has a great selection of patterns. My next purchase is going to be a Cool Lift Bra. Yes, I said Cool Lift Bra. The "girls" will be cool and perky for the first time in years! There are all sorts of cooling products out there. From vests (which your insurance may pay for if you have a prescription), inserts for hats, cooling bandanas. I wonder if they make socks??? Hmm..should look that one up.
  • Stay out of the sun! Stay out of the heat! I know you're thinking "no shit Jenn". I just had to say it.
  • Fans. Love fans. My hubby brought home this little misting fan. It was awesome!! I did get overheated this weekend and I am still paying for it. Did too much like an idiot. Outside to long like an idiot. So, Chilly Pad around my neck (BTW I call it my "woobie"!), go into A/C, laying down on the couch. Still miserable. Got up, cold wash cloth. Nope, still crappy. Plopped my butt in front of a fan pointed at my face, cold drink in hand. Finally, some relief. It took about a hour to feel better. But here it is 2 days later and the fatigue is still lingering. 
So, now you know how much I hate the heat, what I feel like and what I do about it. Sucks! Sucks! Sucks!
Hugs!!
Jenn

*Look, I am not getting paid for the products that I have listed above. I am not getting paid by the stores I have listed above. Yes, I am aware of trade mark, copyright, blah blah blah. The products, except the bra, I have personally tried. Now, if the stores or products want to pay me instead of free advertising then please see the "contact me" tab at the top! ;0)

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Wednesday, July 9, 2014

Truth about symptoms part 4...Irritable Bowel Syndrome and Bowel Incont

Irritable Bowel Syndrome (IBS)..who named it that? It should be renamed "What the hell were you thinking eating that, pissed off bowels in knots, pooping your brains out, sweating like you just ran the Boston Marathon bowel syndrome". It sucks! As well as judging how to expend my energy because of the fatigue  now I have to decide if it is really worth eating certain foods.  Let me tell ya, I love food! Steaks, chicken pork, pasta, salads, cereal. Ohh...shrimp and lobster! But I have to decide if it is worth eating because I will sh** my brains out. Even for a bowl of cereal. I love my Fruity Peebles Cereal but in the matter of 25 minutes, I'm sitting on the throne. Not to mention the "Fruity Peeble" farts that I get. Good lord! Even the dogs move away from me.
(This may sound gross but you know I'm pretty straight forward) 25-45 minutes after I eat, my stomach is very audiable. Making all kinds of sounds like on the movie Alien. You would think that the creature is going to come out. Hell, I start to wonder when the cramps hit. IBS for me, is a mixture of constipation and diarrhea. How is it even possible to have constipated diarrhea? It's like you have to pop the cork before the joyious diarrhea comes. My cousin, who has Crohn's Disease and who also has a great blog, we have decided the constipated diarrhea is like having "dry heaves" but out the ass. You push and push and nothing. Feel the hemorrhoids enlarging. And the sweat? Really? Now I'm sweating?? Yeah, this is really a workout lol. Ya know, as much as I sweat, you think that I would weigh 100 lbs??? At this point I am hoping I will stop sweating. Hoping I don't drop my Ipad. Hoping that there is more than 3 squares of TP left. Wondering why in the hell the cat is in here with me. Damn teenagers yelling through the door.  Finally, relief!! Comes out like water. If someone listening they would think that I was peeing. So, now I am done. My bowels are now annoyed because they had a work out. So to get back at me, they decide that they are going to keep cramping, make me bloated and trick me a few times to go into the bathroom again without any results. I had no idea that bowels can be very spiteful!
I wanted to include Bowel Incontinence along with this post because IBS does cause me to have incontinence. There are sometimes there is no reason for my incontinence. Just happens. Sometimes I don't even feel it coming out. Just there. Thrown panties away in restaurant restroom before. Oh well!   I don't get embarrassed   any more. Ya know, it's part of my disease. It's more annoying than anything. I'm in the bathroom cleaning myself up and yelling to my daughter with the teenage attitude "Sis, I need clean panties". Her response is "OMG mom! No you didn't?". "Yes Sis, sh** happens now go get me panties!".
Take it from me, IBS is sh**ty,  name should be changed and NEVER be embarrassed!
Hugs!!
Jenn