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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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