In true Fibro fog fashion....

Just looking over my blog layout and noticed something missing from the banner....

 

Do you know what is missing?

FIBRO!! 

Flippin "Fibro" is missing of my banner! The very first thing that you see on my blog and I totally forgot to add "Fibro"?! Seriously!  Not only I forget what I'm saying, finishing a thought on a post (and thank God for spell checker) or walking thru the house for something, with 20 steps already in and I have no idea what I was going for, now I guess I can add omitting a diagnosis that I am often (very, very, very often) complaining about.

How beautifully ironic is that!?!

Touché Fibro, touché.


Hugs!!
Jenn

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6 days of steroids...

My convo with hubby as I am on day 4 of Medrol Dose Pack (MethylPREDisolone)

Me: I feel so good right now. Very little pain. I mentally feel great. Why can't I feel like this all the
       time? Damn it! Why can't I feel this way all the time?!? I know once I stop them I am going to
       go back to what I was before.
Hubby: (Looking at me compassionately) Just enjoy it Jenn.
Me: I go thru this every time don't I?
Hubby: Yes, babe.

He was right! I do go thru the same emotions when I am taking steroids. I don't know why it has taken me so long to figure it out. AND I came to realized that each dose has a different effect on my emotions.
First, let me tell you about this lovely flare. It has been a very long and drawn out one. It started simply with just not feeling right. It wasn't depression. It wasn't severe pain. I just noticed that the fatigue was starting to get worse. My endurance was getting very very short. After a few days, I stupidly attempted to clean up water that the broken washing machine decided to spew out all over the floor. As bending over, Sciatica went into over drive! My right leg, down to the calf was numb and the samurai sword like pain (because saying stabbing knife pain just doesn't give it justice) pierced my lower back, hips and down to my toes. Awful!!! And yet, I still was in denial about a flare. Few days later, still not bending over, not doing much at all, I noticed the Lupus Rash was starting to come out on my arm and the back of my head felt like it was on fire. Ok, fine! I am having a flare!! Time for steroids. Even though the pic below doesn't look as bad, it was the other symptoms that truly kicked my ass this time.

Day 1: I am so over feeling like crap. In pain, very fatigued, Lupus rash feels like a horrible sun. I  am  so happy that I have an "as needed" pack in my medicine cabinet!! I am going to feel so much better!! Love my steroids!!

Day 2: Ok, so what happened to the spurt of energy you get with these sum' biotches? All I want to    do is sleep!! Still feeling like crap and my rash is looking very angry!

Day 3: Feeling better. Still fatigued but not that "gnawing not wanting to move to lift the tv remote"   kinda of fatigue. Pain, is better and rash is pretty angry at me.

Day 4: In the morning: Pain, better. Fatigue, better. Rash is clearing up. It doesn't feel like I just taken a Brillo pad across an open blister and now my mind is racing.
          
In the evening: Very little to no pain. I WANT to do laundry?? There's that little spurt of  energy I was looking for the other day! I feel so good! The best I have felt in 3 weeks! Damn, I feel good. This is not going to last. Why can't I feel this way all the time? This sucks!!! This is how I should feel every single day! I'm angry at this point! Why do I have to feel like crap all the time and then now that I am feeling good, it's not going to last? I am going to go back to the  same, painful, fatigue ridden, bitchy self! I hate you steroids!

 
Day 5: Also known as the "I want chicken wings or I am going to fight someone" dose. I am so frickin hungry! And, WE ARE OUT OF POTATO CHIPS!! UGH!!! However, my pain is minimal, which is so awesome! My mind is racing. For instance, I have about 12 different topics in my brain what to write about. I start off with one topic and ooooooooh.....squirrel!! Not to mention, I look at my dose pack and realize I only have one more day. Saddens me.

Day 6: Still hungry. Still have minimal pain. Still getting spurts of energy for I have to tell myself not to over do it. Fatigue is less and endurance is more. Just finished the last dose and looked at the empty pack that I'm about to throw away and think, "Reality will be back soon. I will be back to the pain and fatigue that just runs me down mentally and physically. I hate this.".

So, this is me on Medrol Dose Pack. The ups and downs. Feeling great yet disappointed that I can't feel like this forever. Interestingly enough, I never remember what I go thru when  I am not taking it. It usually take 3-4 doses for me to remember. With the exception of the time I really, really, really wanted to fight some one, anyone and eat chicken wings. Like 2 baskets of chicken wings.

Hugs!!
Jenn

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Little late but....

May the new year bring you less pain, less fatigue, less frustration and more happiness!!! Thank you for reading my blog and my New Year's resolution is to focus more on it!!

Hugs!!
Jenn

The Dirty Little Secret...

You can "Google" all day long on signs and symptoms of your chronic illness but rarely the info will give you a real insight on how it will impact your life. The physical symptoms are easy to point out. Can't stand, sit or walk as long as you want because of pain and fatigue. Avoiding the sun at all costs because it causes the rashes to become enraged. Staying out of hot and cold temperatures because it causes increased fatigue or stiffening of joints which leads to more pain. I am talking about the emotional toll. I like to call it "The Dirty Little Secret" because we don't talk about it. We don't want to sound like we are "whiners", that we are dwelling on the negative thoughts or "not being grateful because there is someone out there who is worse off". (Which btw, when this is said, it's really annoying! You don't think I know that someone out there has it worse? Please don't say this to your loved one.)

Few examples of "The Dirty Little Secret":

• Having to swallow your pride. 
• Feeling ashamed. 
• Loss of independence. 
• Sense of having a purpose, self worth. 
• Strain on the family and my friendships. 
• Feelings of hopelessness.
• Grieving for the "old"  me. 

This is real, suffered in silence and it hurts.

Even putting this out there is a bit uneasy for me. I don't want people to feel sorry for me. I don't want them to think that I am just a whiner. I don't want to hear "Just think positive!" (Yet another statement to avoid when talking to a person with chronic illness) That's not how it works. I can't just think happy thoughts and POOF! All better! If that worked, I would be the happiest, most annoying person in the world! I know that it's not my fault for being sick. I can't control what is happening to me. I don't want people to think that this is all I think about and I am dwelling on what I cannot control.

 
It is important to know that I do not sit here day after day and feeling sorry for myself because I don't But I will admit, some days are harder than others. I will also admit that I have days where I just want to cry and have...in silence, when hubby and kids are out of the house. Then put that smile on when they come home.

If you have trouble reading this, I will post on FB page.

I just wanted to make "The Dirty Little Secret" to be known. With all the physical symptoms that we have to experience every day, we shouldn't have to suffer the emotional ones in silence.

Hugs!!
Jenn

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Researchers....Let me do a "study" on you!

**Before I start my rant, I just want to clarify that I am in no way advocating that a person with chronic pain/fatigue should NOT exercise.**

According to Wikipedia, Fear Avoidance is basically that you develop chronic pain because you AVOID exercise because you FEAR the consequences. Well, no kidding! People with chronic pain and fatigue avoid exercise because they DO fear the consequences! I had recently read and article regarding this topic and it got me thinking...I want to preform a "study" on the researchers.
Here is my plan:

1. All researchers must run 5 miles without stopping before the placement of weights. (Please note, that a person with chronic fatigue or chronic pain feel like they just ran 5 miles and all they did was open their eyes in the morning)
2. All researchers will be given 10 lb weights that are to be placed on both arms, legs and feet. 
3. All researchers will be given a 10 lb weight that is to be placed around the neck. 
4. All researchers will be given 5 lb weights on each hand and 1 lb weight on EACH finger.
5. **Bonus 10 lb weights** These are to be place around the hips and MUST press against your sciatic nerve.
6. Once all weights are placed accordingly, each researcher will have tasks to perform, such as: vacuuming, laundry, washing dishes, making dinner and grocery shopping. You may not take the weights off at anytime. **Hint...Beware of bending over to pick up kids clothes off the floor. Sciatica will flare up**
7. Once all of the aforementioned above is completed, now you must "exercise". 
1. It is recommended that a 10 minute walk is good to start off on. Slowly work yourself up to 30 minutes. 
2. Lifting...lift 1 to 3 lb weights (on top of your already 10 lbs on each arm and 5 lbs on each hand) Yea, that sounds good!
8. After the exercises are completed, additional weights will be placed accordingly: 5 lbs to arms, hips, legs, feet, and neck for a total of 15 lbs to each area.  5 lbs will be added to hand for a total of 10 lbs and 1/2 lb to each finger for a total of 1.5 lbs. (This is an important step because thought the day with someone with chronic pain/fatigue, the heaviness increases.)
9. Are you exhausted yet? How's the pain? Because your day is not over yet...
10. Now you must complete a series of math, reading and comprehension questions. This is timed. Must do all calculations in your head. No calculators or "Googling" of any sort.
11. While still wearing the weights, there is a gathering tonight with 25 of your relatives and friends. This will take place is a small room with children running around screaming and loud chatter. After 20 minutes have past, you must maintain a conversation without forgetting your words, not losing your train of thought, saying the wrong word and without stammering. 
12. You arrive "home". You now must get kids bathed, make their lunches for the next day, put the kids to bed, pick up clutter around the house and fold that last basket of laundry.
13. Time for shower. A shower chair will be allowed but you must not remove the weights. Don't forget to wash your hair. 
14. Time to get dried off and dressed. Good luck!
15. Time to finally get in bed. Weights still intact and your bed tonight will consist of rocks in various places in the mattress. Every turn that you make in bed with the weights and rocks poking you, I doubt if you are not going to sleep well. You will wake up several times at night because of pain. Guess what, now you have to do it all over again tomorrow.

Is my study ridiculous? Perhaps. Far fetched? Not really. This is how I truly feel almost every day. I feel like I just ran 5 miles when I open my eyes in the morning. I feel like my extremities are weighted. I feel like more weights are placed as I vacuum the living room floor. I feel that sciatica pain. I have a terrible time with math or understanding a question, making a decision or wondering what I had just read. In a room with chatter and kids screaming makes my skin hurt. I, do often wonder, if there are rocks in my bed.
I totally get that if you do absolutely nothing, don't move, don't try, yeah, your pain is going to worse. As will the depression. But when you have chronic pain and severe fatigue, it sucks! So, Fear avoidance, yeah I do believe I have that. Why wouldn't I?  I don't want my pain to become severe. I don't want the heavy wave of fatigue hit me as if I am going to collapse. I don't want to pay for it for 3 days after the fact.  Does this mean, since I have "Fear Avoidance" that I have given up? No, not at all. I still try and try again. I think we all do! I think people, like me, with chronic pain and fatigue, we fight. We have to!!

Hugs!!
Jenn

Oh and to my make-believe researchers: After completing the study and you still don't get the pain, fatigue, heaviness, the fight that chronic pain and fatigue people like me go through every single day...Well then, I have one more task for you to complete...poke yourself in the eye. Don't "avoid" it!
 
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The fake smile...

I think I have perfected "the fake smile". I really do. The other day we had a family get together and in the beginning I was feeling pretty good (Thank you Mr. Medrol Dose Pack). But later in the evening I caught myself giving "the fake smile". You know the smile I'm talking about. That smile that you flash when you don't want to explain how you are feeling because you are finally out of the house and you don't want to think about it. The smile that you flash because you just don't want to explain how miserable you feel because they really wouldn't understand it anyway. So, why bother?

99% of the time I flash that "fake smile" and give my standard answer "I'm doing pretty good." (I should copyright it) . That response can mean so many things. It could mean that in all actuality, my back is hurting from sitting on these hard chairs. My skin is starting to feel like an open blister that I just rubbed up against the table because of the many conversations that are taking place, kids running around and the music playing in the background just gets under my skin. Makes me hurt all over. My muscles ache and make my arms and legs feel like someone placed weights on them.

Usually half way though my meal I have to stop and just sit quietly to gain some energy up to finish. When asked "Is there something wrong with your food?". I reply "No, (enter fake smile here) just digesting and taking my time.". What it really means is I am having difficulty holding this 20 pound fork because the simple act of eating causes fatigue. That is why it takes me so long because I need rest breaks even for that. I have to take smaller bites because the more  I eat the harder it is to swallow and I don't want to choke.

After sitting on a hard chair while slowly eating my dinner, all the conversations seem to collide together that makes it sound like a tornado siren. Kids are loud and running around the table but just being kids and the music playing in the background is just too much for me to take in. I sit there quietly with my fake smile and act as though I am paying attention to what the other person is telling me but by this time of the evening I probably don't even know what you are saying and I am just nodding and saying "Uh-Huh". For all I know, I could have just agreed to give you my first born.

At the end of the evening I am whipped but managed to flash that "fake smile" one last time. I had a family member come up and tell me "See Jenn, you got out of the house and all you had to do was just sit there.". Though I love this family member dearly and do not hold a grudge but "just sitting there" was NOT the only thing that I had to do in order to come. I had to plan before I left the house. Plan and time when I needed a shower and rest. Do my hair, rest. Get dressed, rest. Ride in the car, rest in the car. Sit and try to figure out what I want off the menu because I am so indecisive now it is ridiculous. During a conversation I am hoping like hell that I don't mess up my words or forget my train of thought so I don't look like an idiot. Especially don't want the look of "Oh you poor thing." when I am trying to think of a word. Again, when this happens, here comes the "fake smile" and even a fake giggle just to laugh it off. While I am "just sitting there" I have to tell myself to take deep breaths because of the tornado siren like conversations are all around me. It's making me hurt, ache. Eating, rest. Drinking, rest. Comprehending ONE conversation, rest. This is the point when I am sitting quietly and I tap my husband's leg and whisper "Let's go.". So, please don't ever think that all I did was "just sit there" because that is not true.

After all this being said, I actually taught myself something. Me not wanting to truthfully explain how I am feeling is not the only reason why I flash the "fake smile". It also because I don't want my loved ones to feel sad that I have a chronic illness. I do what I can, when I can.

Hugs!!!
Jenn

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Touché Lupus, Touché!

Discoid Lupus is an annoying, painful, ugly disease. I normally have flares on my face, arms and neck. I'm used to having lesions there. Never thought the Lupus liked to keep things interesting. Gesh!
I woke up the other morning, completely, utterly drained, joints aching and muscles all stiff. It felt as though my blanket weighed 50 pounds. My arms and legs were anchors. I, seriously, had a conversation with myself if I really wanted to waste the energy to lift the 100 pound remote control to change the tv station. To hell with it! It's not worth it. I'll just watch the Snuggie infomercial.
At this point, I realize that I am having a flare. But usually when I have a flare, my Discoid rash is angry. There is nothing on my face. Nothing on my neck or arms. Hmm... Okay, whatever. So, I stayed in bed the entire day. I told my hubby "You know I don't feel good when I am not "farming" on my iPad.".
The next day, the back of my head felt like it was on fire. I went to rub my forehead...OUCH! So, I go to the mirror and notice a few spots at the top of my forehead but my hairline seemed really, really REALLY much thinner. Seriously! My scalp now? And taking my hair!

Not the best pic but you can still see the lesions.

UGH!!! Well, that confirms my suspicions, I'm definitely having a flare. It may not look like much but these small, raised, angry lesions burn and are quiet painful. Hurts to brush my hair. Rub my head. I am aggravated at this point. But then...I started thinking "Well, that explains my forehead but but why the hell does the back of my head feels like it was on fire?". Ohhh, this is why...

Upper part of the back of my neck (Does that even make sense?)

This is also new but totally explains the burning. (Hopefully that is the lighting of the pic and not gray hair because that would be the icing on the cake!) This flare is just so odd. I have never had it on my scalp or that far up my neck. The worsening of the fatigue is normal, feeling like crap is normal, joints aching so bad that I want to rip my arms and legs off is normal but these new areas are not. Medrol Dose Pack it is! Thank goodness my Rheumy gave me a Medrol Dose Pack to keep on hand in case of a flare. (My last flare, it took the Rheumy office 10 days to return my call. That's another story.)
So, Lupus, you have proven that you do have a mind of your own. You like to flare when I least expect it and you like to thrown in something new to keep me on my toes. As I said before, Touché!
Hugs!
Jenn

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