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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!

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 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!

29 things only a person with MS would understand!

29 Things Only a Person With MS Would Understand


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...
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!!


**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 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!

*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!

Sunday, July 6, 2014

Silly but true look to getting diagnosed with a Chronic Illness

Once you are diagnosed with a chronic illness, you do feel as though you are going through the 5 stages of grief. The 5 stages of grief are: denial, anger, bargaining, depression and acceptance. These 5 stages are not just for death. I do believe, when being diagnosed with a chronic condition, you do go through emotions because, as for me, my entire life has changed. A dear friend of mine, who is also a blogger, posted this silly clip (Thanks Candace!!). This clip is from Robot Chicken. A claymation, adult cartoon. 

Wednesday, July 2, 2014

Truth about symptoms part 3...Pain

Chronic pain! I have chronic pain. Some days good. Some days bad. Real bad! Again, this is another symptom that is brushed off lightly. An invisible symptom that makes you look like you are crazy. Myself, I have different types of pain. It is not a simple "ohhh, ouch it hurts!"". It's actually more complicated than that.

  1. My skin hurts. Seriously, my skin literally hurts. Hurts when clothes are touching it. Hurts with the sweetest touch from my husband. Bras, I hate bras! Underwear is annoying! The pain is like...let's say you have a blister that has opened on your hand. You gently brush it up against something. Yeah, that pain. Raw, irritated, blistering, radiating, like you have a horrible sun burn, pain. BTW, this is called Allodynia.
  2. Spasms. I have such muscle spasms in my back, legs and feet. I wake up with back spasms. I feel like I have been punched between the shoulder blades. I can't move in the morning. Moving just fuels the spasm. When I am trying to sleep at night, every turn in the bed, I wake up in pain and go back to sleep. (This also increases fatigue, cognition difficulty, word finding problems, etc... I just can't win!) When you have RLS or PLMD, I wake up often during the night anyways. Spasms in my toes which my daughter thinks it is hilarious to see. Yes, she is evil! I have found that I cannot stretch my toes or they will lock, spasm in one place until I hop up and down like an idiot. UGH!
  3. My joints are on fire and ache! You can actually feel the heat coming off of my knees. They lock when I walk when I can walk on them. Sometimes, it feels like someone has a strong grip on my knees.  I feel like pulling off my fingers because of the ache. I have my hubby and kids pull on my arms to relieve the pain. My elbow...really my elbow too? The pain prevents me from having strength. I couldn't drain grease from the skillet because I couldn't hold the pan. Tennis Elbow I was told. Really? It must be from all the tennis I play in my short little skirt. (Please note the very thick sarcasm here) Hip pain. (S1 inflammation)I get to the point where I can't sit, stand, walk or lay for more than 10 minutes. I am constantly moving like a kid with ADD. When standing, I rock side to side like I am rocking a baby. 
  4. Eye pain. I have had Optic Neuritis in the past. But since then, when I get tired, hot or apparently for no reason, my eye will hurt. Reading or blogging makes it hurt too. It feels like I have been punched in the eye. Bruised around the eye. Movement is also painful at times. Not to mention sunlight. I swear I am becoming a vampire. EEEKKKK, the sun! It burns!!!
  5. The all over, don't touch me, don't move me, don't look at me, don't talk to me, don't breathe around me, don't stand there and look at me, just leave me alone pain. I don't really need to add anything else here. Pretty much self explanatory lol

I just hate being in pain all the time. It affects my family. It's depressing. But, I do try to smile through the pain and I do try to push through it. But, sometimes it just wins.

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