A difficult Christmas...

I love Christmas. It is my favorite time of year. But this year has been a difficult one. I lost my father on January 7 of this year. Truly a wonderful man. I miss him every day. He loved Christmas. I think that is why he waited until after the first of January to go to heaven. He didn't want to ruin the holidays.

He loved the fact that his girls and grandkids were celebrating together. He would just sit in his chair and smile. Loved to watch his grandkids open presents. He would also make stromboli every year. No one can make it like him. 

So, this Christmas is without him. I know that he will be with us in spirt but it is not the same. His chair will be empty. The wonderful smell of his stromboli will not be in the air. There will be an emptiness in our hearts. I miss my dad so.

I know he is in heaven looking down. I can hear him say "it's ok, I'm ok. Please don't cry for me. Enjoy your Christmas". 

Merry Christmas to all!!

Let's talk about sex and demyelinating disease!

**Please note that I will be honest about Sex and this is not intended to offend anyone but hopefully 

 may relate to what you experience**

SEX! Yes, I said it and I will say it again SEX!! This is such a hush hush topic. We tend to keep this to ourselves. Avoid talking about it to your partner or physician. But why?? This is a very important aspect of life, love and marriage. But when you have a demyelinating disease and severe fatigue, the conversation with your partner or physician gets even more quieter. Let me break it down for you...

1. Fatigue: I have severe fatigue. I can barely have energy to wash dishes, how the hell am I going to have sex? I have to rest up. I cannot have sex in the morning because it would then zap all my energy I have for the rest of the day. By nighttime, I am too tired from the day that all I want to do is snuggle down in my bed. 
2. Sensation: The sensation is not the same. I have numbness at my "lady parts". What used to turn me on, no longer works. Sometimes the touch of my husband's hand is painful or irritating. Orgasums are few and far between. I am left frustrated, annoyed and wondering what is the point of having sex.
3. Incontinence: I'll say it...one time after sex, I stood up and urine just started streaming out. I had no idea, no feeling, nothing. The dogs were looking at me like "hey, we get into trouble for peeing on the carpet"!Also,  I am afraid that I will leak during sex. Which is so embarrassing! I have to make sure I empty my bladder before sex but that really doesn't mean anything because sometimes I cannot completely empty my bladder. 
4. Muscle Spasms: Back, legs, arms, neck, feet! Gesh! I am feeling like crap because of the spasms so why would I want to have sex. And sometimes, I will get a spasm during sex. Here my husband is thinking he is doing a great job and I am saying "GET OFF OF ME! BACK SPASM!". 
5. Joint Pain and Weakness: These 2 things make certain positions impossible. Being on top, nope, weakness in my arms and joint pain in my knees kick in. Then Tremors in my arms and legs worsen. Being on the bottom...well this may be better but my legs feel weighted after awhile. But then you have to worry about back spasms because you have extra weight from your spouse and you are moving around. 
6. Uhthoff's Syndrome Worsens: Yep, it does! Residual optic neuritis symptoms come back. Tremors kick in. Body temp rises, so now you are hot. You can barely lift your arms and legs because they are so heavy. Feels like you are having an exacerbation! You have to lay there and wait until it passes.
7. Vertigo: I have some vertigo. Not too bad. But sometimes during and after sex, the room feels like it is spinning. I just have to lay and pray that it passes!
8. Humor: Keep in mind that you have to keep your sense of humor. You have too. Why be hard on yourself? Life with this disease is already difficult....laugh!

So, after all the aforementioned above, I do ask myself A LOT "really, what is the point of even having sex?" But then I think, I need affection, closeness and love. I need to know that my husband still wants me even though I am sick. I need to know that my husband still finds me attractive. I need to let my husband know that I still want him. 

On a positive note, sex releases endorphins that ease pain and depression! At least that is what my husband always tries to tell me!

Happy Thanksgiving!!

Hoping all for a safe and wonderful Thanksgiving!!

Multiple Sclerosis for Dummies....FREE!!!!

Get your copy of "Multiple Sclerosis for Dummies" for free!! Check out MS Active Source or you can give them a call and speak with an Activesouce Coordinator at 1-800-456-2255. Just call and ask for the book like I did and you get very quickly. There is also information about medication, diet, exercise...pretty much anything you need to know about MS.
Much love!
Jenn

Invisible Illness and perceptions...

Invisible illness is one that the person looks perfectly fine on the outside but has an illness that at times can be debilitating. People who do not have this do not understand limitations one has. I, myself, do not look ill. To look at me, you would not know that I use a shower chair, have chronic pain, debilitating fatigue or difficulty with cognition. To look at me you would not know that I have to calculate everything I do. EVERYTHING! From when to take a shower vs. going to the store. Making dinner vs. washing dishes. Vacuuming vs. laundry. These simple tasks cannot be done one after another. It's shower, rest, store. Dinner, have kids do dishes. Vacuuming, rest, load of laundry in, rest, fold clothes, rest.
Going out to dinner is also a challenge. I have to plan the showering and resting and then going to dinner. At dinner, I have to decide what I want to eat. Simple decisions are difficult. Conversations are a challenge at times. I have to really concentrate on what the other person is saying. If there is a lot of background noise (people talking, kids yelling, music playing) this is all very unnerving. Too much noise actually hurts me physically. Makes my skin irritated. Makes my muscles ache. Makes me irritable. Literally, gets on my nerves.  Now, here comes my dinner. Eat, rest, eat, rest. Damn, why did I just drop my fork? Ok, now why can't I hold my fork??  How do you hold a fork again? Great now I have to concentrate on holding a fork. I'm tired now. I'm ready to go home. I slowly get up from my chair while holding on to it because I might fall. I should have just stayed home.
No one truly sees what having an invisible illness does to a person. People need to get past their "you don't look sick" attitude and realize that you don't have to look sick to be sick. Educate yourself. Or just ask your loved one what it does feel like. Trust me, they will tell you.
So people, stop with the dirty looks when I get out of the car in a handicap spot. Stop with the dirty looks when you see me in the electric scooter in the grocery store. Trust me, I had to swallow my pride and already feel bad enough having to drive that thing! And don't stop and stand right in front of me. Because I am so, so tempted to run you over! ;0)
Jenn

Attack of the shower chair!!!

As you may have read from previous posts, I hate showering. Well, evidently, the shower hates me! I'm having a crappy, painful day so I thought I would take a hot shower, get my jammies on, take my meds with a muscle relaxer and get in bed. What a wonderful plan!! So, I get into the shower. Turn up the hot water which I normally don't do because heat increases my fatigue. I didn't care because I was going to bed. Barely any hot water??? Very strange but whatever it was warmer than usual. As I proceed to wash, I am sitting on my shower chair. Now,  I know there is 1 screw missing from the legs. No big deal.  I felt leaning and leaning! Crap! Then I had to figure how to get up before I completely break the darn thing. Before the shower curtain comes crashing down on my head. Then Fire and Rescue would have to come and see me naked. I know a few of the paramedics. I wouldn't want them seeing that lol The shower chair is missing 2 screws and the third is about to fall out. OMG! Really! Look, I don't ask for much in life and my shower chair is turning on me! All I wanted was to complete my wonderful plan, but it does leaving me wondering, where the other screw went and why was the third one loose? Hmm...God has a great sense of humor!
Jenn

Great app to track chronic pain!

I love apps!! I have found that when I am at the doctors, I have a difficult time explaining my symptoms, pain and the bad days. I found this really neat app called Chronic Pain Tracker . The "lite" version is free but of coarse the full version is $9.99. I can type in what I am feeling, type of pain, location, what the weather is like outside, how I slept, depression, etc...

It also gives great reports that you can take to the doctors with you.

Very colorful. Easy to add descriptions. Track "as needed" medications. Color in where the pain is.

   Also has a "general comment" section that you can type in anything you want. You choose what you want in your diary. If you do not have depression, you don't have to add it.

You can even generate PDF and HTML summaries to take to your doctor too. You can choose, 1 day, last week, 2 weeks, 4 weeks...you get the picture.

I really like it. Takes a minute to figure how to navigate but love the features...and I only have the "lite" version.
Have a good day!!
Jenn