My skin hurts!!!!!! Allodynia!

"My skin hurts!" I say this often. It's hard to describe what I mean by this statement. I try to equate it to an open blister that gets brushed up against something. Yeah that feeling. A raw, irritated, open blister, sun burnt like a cheese grater just went across the skin feeling. Even with that being said, doesn't really fully explain the feeling.
Hurts to wear clothes. The slightest, sweetest touch from my husband can be excruciating. I can only tolerate a massage for about 15-20 minutes. Longer than that, it hurts like hell.
Well, there is actually a name for this. Allodyina. According to the Merriam-Webster defines it as:  pain resulting from a stimulus (as a light touch of the skin) which would not normally provoke pain. Sweet! I am not crazy! This thing is real. Now of course there are different types. I am not going to go into that but if you are interested, check out this link on Wikipedia. Also, I found a great article on the differences between Hyperalgesia and Allodyina here...
Can I just say, my skin, at times, start to hurt with a roomful of people talking. The more noise, the worse I feel. I'm sure anxiety plays a big part but being in a roomful of people sometimes makes my skin ache and burn!

Jenn

Brain mistakes pain and pleasure messages....

Interesting study just released I. November . Fibromyalgia brains misreads pain and pleasure signals. Read here... You may need a Medscape  nurse account. It's free and easy to do. I get emails from Medscape Nurse containing great articles on Fibro, MS, Lupus and Depression. Check it out!

Merry Christmas!!!!

Hoping all for a pain free, fatigue free, weird sensation feeling free, vertigo free, diarrhea free, muscle ache/spasm free MERRY CHRISTMAS!!!

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

Showering...puts me in a bad mood!

Really? Showering puts you in a bad mood? Yes, Yes it does! Let me tell you why.

1. I have to calculate when to take a shower. I can't shower first thing in the morning because it sucks the little energy that I have. I can't take it before I go to the store. Again, zaps the little energy that I have. Ok take it at night. Then I can just go to bed afterwards. But, sometimes I am too tired to take a shower at night because of the activities I had done during the day.
2. Stepping in the shower. Seriously? Just stepping in the shower can be a challenge. For some people will not understand this but stepping in the shower is a gamble because there is a good chance I'm going to fall.
3. Nice, relaxing HOT steaming shower...yeah right! The temp can't be hot. Sometimes it has to be luke warm. Heat of the shower increases my symptoms. Make my legs like rubber. I'm off balance and cannot see straight because of Uhthoff's Syndrome  I would love to have a hot steaming shower. Ohh...I miss that!
4. Shower is done, time to hop out right? Not so fast buster! I have to sit on the shower chair and dry off and get my bearings. By this time, I am very tired. My arms feel heavy. My legs feel weak and I am so afraid of falling. I want a nap!

So, why am I in a bad mood after a shower? Oh, I don't know? (Please note the sarcasm) It is just exhausting just going through the motions of the 4 things listed above. Getting to number 1 is a challenge. Somedays it is just not even worth it. I am a 30 something yr old woman and it is a challenge to take a shower. Ticks me off! I'm bitter. I'm angry. I hate being this way. I know, that I need to just let go and accept I am the way I am but somedays that is harder to do. I understand that there are people who have it worse. I completely understand that. I know I should be grateful of what functions I do have. I do thank God for that. I really do. I am just having one of those cranky days where showering puts me in a bad mood!
Jenn

Lyme Disease and Fibromyalgia...

Here is a great article about Lyme Disease and Fibromyalgia. People are often getting diagnosed with Fibro when it is actually Lyme Disease. Very scary!!
Lyme Disease and Fibromyalgia

Jenn
P.S. Good catch Mom!!

Disciplining my teenagers...

I'm not writing about my illness tonight. I thought I would write about my teenagers and disciplining them. I have a 16 and 14 year old. They are good kids. Not on drugs. No one is pregnant. Good grades. Respectful,  say please and thank you. However, I know they are NOT angels! They are teenagers. Dumb, think they know it all, teenagers.
My husband and I are not their friends. We are their parents. We are not afraid to make them mad. If they hate us, oh well, they will get over it. We are not afraid to look through their phones. They know this too. I have pulled it right out of their hands and went through their text messages. Mad? So. Pull up their internet history? Sure...low and behold. Some one has been on a chat site after they have been told not to. That was not a good day for the teenager. Goodbye phone. Goodbye internet. Goodbye Xbox. Goodbye DS. Goodbye friends coming over. Hello more chores. Was that teenager mad because we stripped everything away? Yes. Do I care? No. Did we do it because we love them and want to protect them? Absolutely! Again, we are not their friend, we are their parents.
We don't expect straight A's in school. But we do expect them to do their best. If they tried their hardest and got a C, great. If they screw around, don't do the work and get a D, time for change!
Now, don't get me wrong. We do not think we are the parents of the year. We are not. I am sure we have made mistakes. But we do make our kids accountable. We want them to choose the right path to succeed.
Don't try to be your child's friend. Don't worry about making your kids mad. Pull the cell phone from their hands and go though it. Look at the internet history. Use the GPS phone trackers. Iphones come with a free one called Find my Iphone .Mobile spy is also a great one. About $100 per year but wow check out the demo here . For Androids Life360  is a great one and it is free. I really like this one because it will show you a trail where they have been. Check on their grades a few times a month. Ask them, how their day was or if they have homework. Tell them everyday that you love them. Give hugs and kisses. No matter how old they are. (A little back hand never hurt either)
Jenn!

"Maybe you're just depressed" Really?? No kidding!

"Maybe you're just depressed" Hmm..ya think? I recently heard this from my doctor. Asking me if the depression is the cause of all my problems. I instantly got defensive. I said  "I'm not sick because I'm depressed, I'm depressed because I am sick!". This isn't the first time I have heard this. It is so frustrating!!! My father went through the same crap for years too. He was told to see a therapist, change jobs and reduce stress. Completely missed the heart failure! He too did not look sick.
I think this is, sadly, becoming the norm. Doctors can't find anything diagnostically (yet) and they see that you say that you are depressed and have anxiety. So that's it! You are just depressed. "Here take this pill, lose weight, exercise and you will feel better."
Yes I have depression. Yes I have anxiety. My life has completely changed. I once was this hard working, 40-50-sometimes 60 hours a week, mom, wife, camping queen. Now I have left my job, can no longer drive. I depend on my kids and hubby to help me with household chores, meals and shopping. We haven't gone camping in almost 2 years.
Yes I understand that depression does have physical symptoms. I get it. But Doc, look a little deeper on the depression scale questionnaire that you just made me fill out. Ask me why I am depressed. I would gladly tell you! And again...

I'm depressed because I am sick. I am not sick because I am depressed!

The Spoon Theory

I have never heard of "The Spoon Theory". I wanted to share this site with you. It is about a lady who has an invisible illness trying to explain how she plans her day with limited energy. Check it out!

The Spoon Theory


Jenn

The truth about steroids!

So, I'm back on steroids again. I just gotta say...I love them so! I wish I could be on them forever but I know that is not going to happen. They are really a double edge sword. Yes, they take my pain, fatigue and ugly rash away but they can actually be dangerous to your body. Figures! I just wanted to give you my take on steroids that docs don't really tell you about them.

They make you:

1. Feel anxious. We all know this. But what about the pacing? What about the racing thoughts. Wanna sleep? Ha Ha Again, I am writing this post at 1 am.
2. Feel like you want to fight someone. When I was on the 3 day IV round with a 10 day taper, I wanted to fight someone. Seriously! I wanted someone to get in my face. I wanted someone to yell at me. I WANTED to fight!
3. Along with #2, very short tempered. Fly off the handle without warning. Hubby and kids have figured this out. They stay away lol
4. Sweat! I mean just sitting there watching tv and you are sweating like you just ran a 10K in the 100 degree heat. Driched with sweat. Boobs sweatin! Neck rolls sweatin! Butt sweatin! Bring on the powder!
5. Feel very, very hot! Like you are in a steam room. I feel hot all the time anyways but this is worse. I have to turn down the temp of the water. Almost cold showers. Still hot. 60 degrees outside and I go sit on the porch in a tanktop to cool off. Still hot. Grr!
6. Thirsty. I cannot get enough water. I hate water. But I can't get enough when on steroids.
7. Hungry. I wanted chicken wings almost as bad as I wanted to fight. I thought I was pregnant when I was craving chicken wings.  I ate those bad boys all up!
8. Weight gain. I'm thinking that has to do with #6. But it is also part of the medication's side effects.
9. Painfree to almost pain free. It is so odd to me to be painfree. To walk without pain is so unfamiliar. It makes me stop and think "huh, am I missing something? Oh yeah, no pain"
10. Fatigue improves greatly! Now, I still have to plan and calculate what activities to do and make myself take breaks. I am really bad at this but I am getting better about listening to my body. When I am on steroids, I don't have that knawling, exhausted, drained feeling. I actually feel like performing my activities. 

Steroid effects only last for a short time. I do know that I tend to get some increased depression when my symptoms start returning. Steroids give me a taste of what my life should be like. It sucks but even with all I mentioned above, I still love'em!

I thought this was brilliant!

I was sent this brilliant pic today from a buddy on MyMSteam

Have a great weekend!

I want to be pain free...without narcotics!

Being a nurse myself, I know that there are drug seekers and addicts out there. People who "doctor shop" to score narcotics. Then there are people like me. Have an "invisible" illness. Chronic pain every single day. We just want help. We just want a day with no pain. I do NOT want Vicodin, Percocet and Morphine. I defiantly do NOT want oxycontin. I am NOT going to the pain clinic downtown. Again, I am a nurse, I have seen what the pain clinic downtown does to people. I just want my pain to go away. I want to be able to get out of bed in the morning without the pain, stiffness and limping. I want to be able to sleep a full night without waking up in spasms every time I turn over. Being in chronic pain is very, very depressing. (Which increases pain)

There has to be a better way for treating pain.

I just want to be pain free!!

The truth about chronic pain...

The truth about chronic pain is...it sucks! When a person hears that another person has chronic pain, I think they think "ok, they have pain. So what". Having chronic pain daily is depressing. It prevents you from socializing. It prevents you from doing your daily activities. This has been told time and time again. For a person that doesn't understand what is it to have chronic pain, I will try to explain.

1. Your back/hips feel as though someone has punched you.
2. Back muscles have spasms that just take your breath away.
3. When #2 happens, the pain can travel all the way down in your arms. 
4. Standing when trying to do dishes or cook a meal, your lower spine feels as though someone is griping it. Squeezing very hard.
5. The muscles in your arms feel weighted and you can hardly stand to pick up a pillow or blanket.
6. Pain radiates if you are standing to long. This must be alternated between sitting and laying. But if you lay too long the pain increases. So you sit up. Can't sit up for too long either. Now you have to stand. Kinda similar to #8.
7. Changing positions in bed feel like someone is poking you in just the right spot to make the back muscle spasm.
8. The evil "depression and pain cycle": You get depressed because you are in pain all the time. Then, the depression fuels the pain so the pain increased. In return, you get more depressed.
9. Crowded places, sound of chatter can also cause pain to increase. This is why during a flair up, you don't want to be around people.

Having chronic pain just drains you mentally and physically. Pain is invisible for which it is hard for people who do not have chronic pain to understand. Hopefully this will give some insight. I couldn't think of everything. Please feel free to add what chronic pain is like for you.

Jenn :0)

Acceptance and finding closure...

Acceptance and closure...2 things that I have a difficult time with. Let's start with closure. I left a wonderful job a year and a half ago. The fatigue and pain got the best of me. I was finding, cognition wise, it was getting more difficult. With the added stress of position changes, it was overwhelming. My things from my office are still there. I want to go get my possessions but I find it difficult. I think it is just the finality of it all. I hate the fact that I had to leave. I hate the fact that this illness was kicking my butt! I could no longer fight through the fatigue. No matter how hard I tried. I just love that job. I know I really need to go get my things...we shall see.

Now for acceptance. Acceptance is a great concept that I have to remind myself of. Some days are better than others. I have accepted the fact that I cannot do things like I use to. I have accepted the fact that I have to plan out when, how to do and how long it will take me to complete a task. I have accepted the fact that I can't scrub floors, wash windows, mow grass or do yard work. Who the hell wants to do that anyways? Lol. Now with that being said, there are many days that I have to remind myself of the limitations. Kinda ticks me off. I get angry, sad and irritated.  But It is what it is. I can't change the fact that I am sick. 

Acceptance and closure are very important when you have an illness. But accepting acceptance and closure are very hard to do.

:0)

Chores and what it feels like

Trying to complete household chores and other everyday things is a battle for one with a demyelinating condition or Fibromyalgia. I am going to try to explain examples so that people who are not sick can understand:

1. Folding clothes: think of lifting weights. In the beginning of folding think of lifting a 1 pound weight. By the time you get to the bottom of the basket, you are now lifting 20 pound weights.
2. Bending over: think of a small child on your back. Don't forget the sweating like it's 100 degrees outside in a 70 degree house. 
3. Grocery shopping: think of going into a library, trying to find a certain book but not using the Dewey Decimal System. Memory and Cognition is difficult. Plus the noise of other customers talking, kids screaming...even though it is spread out through the store, it feels as though it is right next to you. Pushing the cart?? Think of pushing a wheelbarrow full of bricks. Don't forget about the sweating on this too!
4. Washing dishes: think of standing in front of a hot sauna and having to move back and forth 10 pound weights. So, you have the heat from the water, weight from the dishes and the motion of cleaning them.
5. Washing hands: ok this is a weird one but it happens to me. Washing hands with soap and water. Then drying them off. It feels as though you dried your hands with a jelly soaked dish towel. Hands get so sticky.
6. Driving: (Which I do not do anymore) You can not judge your distance. You have no idea how close you are to another car, curb or stop light. Can't focus at the car driving in the opposite direction. It looks like it is coming right at you. Going down the road and you are wondering how did I get here or where am I? Think of taking a nap in the car and you wake up not knowing where you are. 
7. Vacuuming: think of pushing a shovel with snow. It starts to get harder and harder the more you go. Using the hose to the corners, you have to bend over. See number 2.
8. Cooking dinner: trying to follow a recipe but you have to keep checking because you can't retain the steps. Lifting the skillet or draining spaghetti feels like lifting 50 pounds. Your arms get so tired. By the time dinner is finished, you don't want to eat it because you are tired. Think of being outside, doing yard work, 100 degrees. All you want is to sit, have a cold drink, not eat a hot meal.
9. Scrubbing the bathtub: Yeah right! Bending over...see #2 Motion and strenght of scrubbing...no way. It could take all day to scrub the tub. Think about scrubbing motion for a hour. That is what 5 minutes feels like.
10. Writing this blog: Think of it like a puzzle. Concentration, cognition and wordfinding is difficult. Writing this blog took almost a hour. I have to step away and rest my mind. I have backspaced so many times to correct what I am typing because sometimes my fingers don't want to work, they tend to have a mind of their own. Losing your thoughts. Reading back what I just typed and see that I am repeating myself. What is in my mind doesn't necessarily sound correctly. I have to think, very hard! 

So this is a few things I thought of. Please add comments on what you feel is difficult. I could have added showering. But I really don't know who to explain that one lol

If only!!

If only Dr. House was real...he could figure me out!!

Invisible illness...

The invisible illness... an illness in which one person has that another person cannot see. Meaning, you are sick but you don't look it. So with that, it is really frustrating. With the strange, weird, dirty looks that you receive when getting out of the car in a handicap spot. To riding an electric scooter in a grocery store. People giving you the same dirty look. Rude and impolite for not getting out of the way. All they see is a younger, over weight "lazy" woman.
Friends and family seem not to understand either. Not all, some. Hearing comments "just go for a walk" or "if you would get out of the house, you would feel better". It's not that simple. I cannot "just go for a walk". It is too exhausting. I have to actually tell and remind my legs to walk that feel like they are weighted down after 25 feet. I cannot "get out of the house" to make me feel better. Some times, a group of people talking is so irritating. Makes my skin crawl, my muscles ache. Conversation is exhausting. The concentration and understanding what is being said is taxing. There are some days that I just can't do it. And choose not to. Some days, it's not worth the trouble.
You have to understand that everything, I mean EVERYTHING, that I do in a day takes planning. I cannot simply get up in the morning, jump in the shower and start laundry. I wake up, take medication, lay back down. Not shower until bedtime because it is exhausting. It will take all day to wash clothes. Throw a load in the washer. Rest. Put in dryer, throw another load in the washer, rest. Fold clothes. Rest. It can be taxing just planning the steps so I don't get exhausted. Some days, I just give in and do nothing but rest.
I just wish people could see the actual struggle inside. That it is taking all their might to make it through the grocery store. It is taking all their might to walk without falling. Hoping and praying to make it through your kid's softball game. I am NOT lazy! I am NOT trying to get a free ride and not work. I am doing the best I can!

Absolutely love this!!!

For my readers (if I have any lol) who have MS....

Pain Pain GO AWAY! Seriously, get outta here!!

Bad pain day. Back, feet, arms and shoulders. Chronic pain...is well, a pain! I don't know if it is the weather change, just a bad day or a flare. I could hardly lift a skillet this evening for dinner. My left arm has had so much pain in weakness recently. It is strange. I even placed a Lidoderm patch on my arm. Didn't really make that much of a difference. Being in pain all the time really wears you down mentally. If you are up too long, your pain increases. If you are laying too much, the pain increases. Can't sit in a chair or ride in a car too long either. Because why you ask?  You guessed it! The pain increases!  LOL It is rather annoying. Always switching positions. Stretching and laying still at times. Strategizing ways not to increase your pain. But then you have fatigue factor you have to add in to the mix. It's tiresome! Like I said....chronic pain is a pain!!

Darn you Discoid Lupus!! Darn you!!

About a month ago my Discoid Lupus flared up...

Doesn't really itch, just hurts. Kinda like a sunburn. Very irritated, raw feeling at times. Had a round of steroids and it cleared up nicely.

So now, a month later, it's attacking the front of my neck!

Looks horrible! Looks like terrible hickeys lol Trust me, they are not lol. Guess I'm calling the doc again tomorrow. I will say that I would rather have them on my neck and arms than on my face! Lovely Discoid Lupus!!

Great website for people who have MS

I found a really great website for people who have Mulitple Sclerosis. Nice community forum and you can create your own little blog. It is wonderful to talk to people about what you are going through. Makes you feel like you are not crazy!

My MS Team

Check it out!!

Missing my father and feeling his presence...

I lost my father in January of this year. The greatest man I have ever known. I miss him terribly. I find myself picking up the phone from time to time to give him a call. Or seeing a movie on TV that he would love, I'd want to call him. He had been sick for many, many years. I watched this invincible man become so dependent on my mom. He too went through years of physicians telling him that he wasn't sick, he needed to change jobs, needed to reduce stress and need to see a psychologist. He understood what it is like to lose abilities that he once had. He understood that, at times, it just sucked depending on others. I think the year of his life, him and I gotten closer.
These past few months I have been in dispute with a neighbor. I know that if my dad was here, he would have taken care of it. He would have been here so fast and telling the neighbors how to fix the problem.
I have a sense of my dad's presence. I have a sense that he is over my shoulder. I feel like he is telling me how to handle the situation. It is just a strong, unexplainable, overwhelming feeling. I talked with my mom about this. She said it was my dad giving me strength in his spirit. I didn't think of it that way. I truly believe it!
Miss you and love you Dad!!

Increased anxiety and problems with decision making...

So today I had terrible anxiety and I noticed that I had a very difficult time making decisions. Long story short: neighbor, broken water line, flooding my yard and them digging holes in my yard without permission. UGH!

I noticed the following:

1. Anxiety: my anxiety was so high I had tremors more than usual. My chest had pressure. My mind was racing. My face was red because my nerves were so bad.
2. Decision Making: I could not make a decision. My hubby was at work and it was left to me. I looked at my other neighbor/wonderful friend for guidance on what to do about the situation but I could not decide for myself. I felt that I could not tell the idiot neighbor "No, you are not digging in my yard". That is not me. Before I got sick, I wouldn't hesitate to tell someone what I thought. This time, I needed my husband to make choices. This is what really bothers me because I was always this strong, opinionated woman who knew what to do all the time. I could think clearly and decide. Now, I can't decide. Ticks me off!
3. Anger: I was so angry, I didn't' know what to do. I think this was heightened because of impaired decision making. It just frustrated me even more. I don't like confrontation. 
4. Increased pain: Of course my pain increased. Especially in my hips and legs. From all the anger, anxiety and being ticked off because I couldn't make decisions my pain was increased. Bring on the ibuprofen!
5. Mentally exhausted: I have difficulty thinking on a good day. This completely mentally exhausted me.

So what did I do to calm down... take ibuprofen, talked with my hubby, best friend and my wonderful neighbor next door. Took a deep breath, had a drink with the wonderful neighbor and thought....It is what it is and I can't change it. The yard will eventually be taken care of. I need to stop worrying about things I cannot change. It is only making me feel worse. I have to come to grips that I do have trouble making decisions and that is what I have hubby and good friends for. Love and support. More importantly...

You can't fix stupid! 

Very good short article about Fibromyalgia

I found this great, quick article about Fibro from the Mayo Clinic. Check it out!

http://www.mayoclinic.com/health/fibromyalgia/AR00056

I'm tired of being in pain!

I am so tired of being in pain everyday! It is getting really old! If it's not my back, it's my neck. If it's not my neck, it's my legs. If it's not my...you get the picture lol. Everyday flippen day! It makes me depressed, angry and irritable. In return, these feelings make the pain worse. Vicious cycle. In July, I was on high dose IV steroids. I was actually pain free. Sadly, it was the strangest feeling to be pain free. I thought "wow, this is how it is supposed to be".
I do not take narcotics unless I am have a horrendous day. 30 Vicodin last me a year or more. I don't like to take them for several reasons. 1. I can't function safely on them. 2. Make me feel loopy. and 3. I don't want physicians thinking that I am drug seeking. I think physicians see the diagnosis of Fibro and think people are just drug seeking. I do take Neurontin (gabapentin) 900 mg 4 times daily. Scary part is, it does help the pain. So just imagine if I wasn't taking it! Ibuprofen is my best friend. Acetaminophen does nothing for me nor Naproxen.  I do stretching exercises and sometimes I go for a light massage. That does seem to help. Since medical marijuana is illegal in Ohio (FYI, it will be on the Ohio ballot next year) I guess I will stick with my ibuprofen, light stretching and massage. Oh, and lidoderm patches.
Pain that I can't stand the most is (bear with me, may sound crazy) my skin. At times my skin hurts. It feels like someone is rubbing on your sunburn. It hurts to wear clothes. I hate bras! Can't stand to be touched. Shower water running on my skin sometimes hurts, very irritating. Sometimes I will just lay on my bed nothing but underwear on because my skin hurts so bad. I do notice it more when I am tired and defiantly when I am hot.
I am just tired of being in pain everyday. There has to be something better. Muscle spasms, joint pain, skin pain (?) and fatigue just wears you down. Not just physically but mentally. I am hoping for a better diagnosis, treatment or something when I go back to Cleveland Clinic this month.
Something gotta give!!!

Muscle aches and stupid twitchy foot!

I can tell that today was not going to be a good day. Muscle and joint pain was increased. My arms feel so weighted. And when attempting to lift something, the pain would shoot. This also came with weakness. I attempted to make dinner tonight and could bearly lift the skillet. By the time I finished dinner, I didn't want to it eat. I just wanted to go lay down. The heat from the oven and stove increased my fatigue. Not only that, moving around cooking, bending over looking for the correct pan and concentration on the recipe increased my fatigue. Not to mention I already wasn't feeling good.
Stupid twitchy foot! If that is even the best description for it. I have said before that I get these weird sensations in my foot. Flares up when I move around more, when fatigued or for no reason at all. Today, on the top of my right foot, near my ankle, I got this zapping, twitchy, vibrating, annoying as hell feeling. Doesn't hurt, just annoying.
So, here it is around 8:30 pm, jammies on, feet up and nighty night medicine on board!
I should have never even attempted cooking today but my bullheadedness got the best of me.

I should have called Dominos!
Good night!!!

Being appreciated....

I have a teenage daughter. If you have a teenage daughter, you know how much fun it can be (Please note the sarcasm here) I am truly getting paid back for my teen years. Again, mom and dad, I am SO SORRY! Overall I do have a great teenager. She gets good grades, honors classes, not on drugs or pregnant. So, I really can't complain. She has a friend who is not living with her mother and hasn't for  some time now. She lives with her grandparents and gets to visit occasionally with her mom. Very sweet girl. This evening, my daugter said "mom we don't get to spend enough time together". I just looked at her. "Ok, you feeling alright?" She tells me "I just feel so bad for my friend because she doesn't really have a mom and I really do appreciate you. I am lucky". My first thought was how sweet and great that my daughter appreciates me. My second thought was to get a pen and paper so she could write it down and date it so I can show her in the future when she is pissed off at me. LOL

I have come to a realization that my daughter is so much smarter than I will ever be. She has a great sense of humor, quick witted, absolutely beautiful and speaks her mind. She sees through all the bull and says what she thinks. I admire her. I am the lucky one to have such a fantastic daughter!!

Weird sensations that I have...Sticky hands and buzzing legs!

I experience several weird sensations in my extremities. Very hard to explain my legs so I will start out with my hands. LOL

My hands do a few weird things. The can get fire red and feel like they are on fire. No reason at all. I would just be sitting there and my hands are red and HOT! My feet get that way too. I have had to put cold packs on them. Then sometimes it feels like I want to pull my fingers off. They will ache so bad. I will bend my wrists inward. I guess to stretch them. Another strange sensation is when I wash my hands, they will feel sticky to me. The first time I noticed it I thought that the towel I dried them with had jelly on it. So I re-washed and used another towel. Still sticky! It was so bad that you would have thought I had OCD as many times as I washed and re-washed my hands. My husband and kids were looking at me like I was crazy. I said "feel them! They are sticky!" No, no they are not said my hubby. I'm used to it now and I have learned if I lay my hands still, the "stickiness" feeling will go away. Still annoying though.

My legs...One night in May, I was laying in bed and all of the sudden, my right leg, from the mid foot to mid calf, was on fire. I mean it HURT because it was so hot. Then after about 20 minutes, I started getting a buzzing, vibrating, zapping feeling. Very light sensation. I don't really even know how to explain it.  That remains intermittent now. I do get tingling and numbness sensation in my right calf-foot. Now it constantly feels like I have a sock on or someone is applying very light pressure. Sometimes I have this cold sensation. The best way I can think of to describe it, it's like a drop of water running down my leg. Very, very odd! 

The only other odd sensation that I have is in my face. 2 things. 1. One side of my face will be hot. This is on the left side of my face (left eye was optic neuritis). Hubby and I have decided to stop telling physicians this symptom because we get looks like "seriously, now you are just making things up". My husband will tell them "I have seen and felt it. It does happen". 2. When I bend my neck down (chin to chest or should I say chins) I get pin prickly sensation on the left side of my face. Weird but whatever!

So, that is all my weird sensations that I have going on. No explanation yet on the causes other than I'm apparently nuts!

I hate feeling this way! Not a good day!

I woke up feeling half way decent. My sister took me to the grocery store. Got what I needed and exhausted by the time I got home. I thought ok, I will lay down and I will feel better. WRONG! I still don't feel good. I feel drained. My legs and arms feel heavy. My legs have like a buzzing, vibrating sensation. Tremors are light but constant in my hands. Not bad, just annoying. My head feels weird. I really don't know how to explain it. Heavy but my mind is foggy? It's like someone has a hold of my head. Very light pressure. Dizziness and unsteadiness. My words are hard to find. I just want to go to bed. And that's what I am going to do! Hopefully tomorrow will be better! Good night all!

I hate the heat! Uhthoff's Syndrome and Me...

I hate summer! I hate hot temperatures! From showering to being outside!  I have Uhthoff's Syndrome. This is a condition in which heat increases my neurological symptoms. My vision worsens (left eye only, optic neuritis) I feel flu like at times. The fatigue is SEVERE! I start to feel weakness on the right side of my body. I feel like I am going to fall over at anytime. My body feels so heavy at times. When walking, I have to remind my legs to move.I have to get into a cool room, lay down and sometimes not move. The symptoms do decrease after I get cool and rest. My shower temp has to be turned down. Not more hot showers. It bet it's lukewarm. Sometimes cold according to my daughter. I mostly shower at night because it will cause fatigue. What the heck, going to bed anyways! So yeah, I really hate the HEAT! Here is a link for a quick overview of  Uhthoff's Syndrome. If you want more information check out this great link from the National MS Society.

My teenage daughter plays softball. Of course, in the summer. I made a promise to her that I would try my damnest to go to her games. The only thing that saved me was Frogg Toggs Chilly Pads. I LOVE these things. They are a towel that you wet down with warm water and it stays cool for several hours. It really does! I would always bring a bottle of water to cool it down again if needed. So, I would have one wrapped around my neck and another acrossed my legs. Kept me cool! Ok, I know I had to have been a site to see. Here I am lathered in sunscreen (that's another post lol), in a reclined sun  chair so I can keep my legs up to lay down. Frogg Toggs on my neck and legs. All the while, holding an umbrella to keep the sun off of me. I know that I looked ridiculous but you know what, I didn't care what people thought. I only cared what my daughter thought. Her mom was at the game toughing it out for her!  I have an amazing daughter!

Oh, here is the link for the  Frogg Toggs Chilly Pads...Check out  Amazon too. They usually have them cheaper and neater prints (Pink zebra print is my next buy!). Also, the first one I picked up was at Dick's Sporting Goods.
Love them!! Hate heat and Uhthoff's!

Teaching my 16 yr old to drive...post Optic Neuritis

My 16 year old son Jake is learning how to drive. What a challenge for both of us! Since my optic neuritis attack and lack of spiatal preception (unable to determine the distance between objects and yourself) I am unable to drive. Though I realized that I am not the best teacher for Jake. Not to mention, when I get fatigued, I get snippy. Jake will drive me to the grocery store. So, after getting my groceries, I'm fatigued, snippy and my vision changes. Not the best combination when teaching a kid to drive. (BTW, "snippy" is the nicest, non offensive word that I can use to explain my mood lol)
Poor kid. I am always thinking he is going to hit a parked car. So I am yelling at him. He's looking at me like I'm crazy "Mom, I have enough room. I'm not going to hit it!" It's just not a good learning environment.
His dad and I have decided that I shouldn't drive with Jake anymore. Not  until he improves. I don't want to discourage him and I think that is what I am doing to him. And...my nerves just can't take it lol

UNDER CONSTRUCTION!!

Please bear with me while this site in under construction! Right now, it is kicking my butt! Good thing I chose a "tired" day to work on it. I have said it before, I am aware of my limitations but sometimes I forget. LOL Have a Happy Labor Day!!!

A beautiful thought from my cousin!

My cousin had sent me this today. I thought it was perfect! Thanks Nate!!

**Crohn's is misspelled. Just sayin**

My best friend and my illness...

I have a best friend. I don't know what I would do without her. We talk everyday, 10 times a day. She is my rock! However, I was feeling as though we didn't physically spend enough time together. She works crazy hours and has a family. I am unable to drive to her house, go out when it is hot and humid and I have a family too. I miss my best friend. I miss hanging out with her. I miss camping with her. I miss going to play Bingo with her. Canoeing...not so much. (That is a post for another day) No matter what we would do, we would laugh and have so much fun.

This was really getting to me. I thought that she didn't want to hang out. I felt that I would be a burden to her. Example, she took me to a retail store. Pushed me in a wheelchair. We had a great time and I got exhausted. But I felt that this is an inconvenience for her. So, finally the other day, I said to her "you know I love you but why don't you ever want to hang out or do something? She said "Jenn, I do want to do things together. I wish that we could do more. But I know that you get  so exhausted with simple things. I will feel guilty that it would put you down for 3 days". I would have never guessed she felt guilty. I said "you know, I get exhausted doing dishes, who cares? We have so much fun together. When I get exhausted, I will tell you. It's not your fault. I feel worse when we don't do anything. I feel as though I am trapped in this house sometimes. You are not going to kill me if we do something together. Unless it's canoeing!" (seen Jesus twice that day lol) At this point we were both laughing. 

So we decided that we are going to do more things together. Even when I have to stop and lay down. I'm used to doing that anyways. I will re-enforce that my exhaustion is not her fault. 

This conversation needed to happen long ago. Communication is the key. Not only in marriage but in friendship. 

P.S-my dear best friend, if you are reading this, I love you and I don't know what I would do without you! Also, I do forgive you for trying to kill me those 2 times when we were canoeing. Truthfully, I never had so much fun and laughed so hard! Love you and thank you for being there anytime of the day or night!

Finding a purpose and loss of independence...

I was a homecare nurse. I used to do patient care but then I started working in an office as a quality assurance nurse. I loved my job. I was good at my job. Now since I have quit working because of this illness, I find it hard, most days, to find a purpose. I do have my teenagers and I know my purpose is for them. I have my husband and I know my purpose is for him. But sometimes this is hard to remember. I feel like I don't have anything of my own. I feel as though I have nothing to look forward to. I don't have anything to excite me. I spend my days, resting, watching tv, surfing the net and doing what chores I can accomplish. Somedays, I can't accomplish much. 

I'm not sure if it is so much as having a purpose or the loss of independence. I was such an independent woman. Had a terrible first marriage that I got out of, put myself through nursing school and graduated with honors with 2 kids, worked 40-50 hours per week and went camping almost every week. I truly miss that in my life. I miss getting a paycheck. I miss being the go-to girl at work. I miss going camping and making wonderful memories with my family like I had when I was a kid. 

I feel bad for my kids. I feel bad that I depend of them for certain things. I feel bad that they worry about what is wrong with me. I have said it several times and I will say it again...I have great kids.

So, what do I do to change my thinking when I feel like I have no purpose and lost independence?

1. Lost of independence is what it is. I have to remind myself often that it truly is what it is. There is nothing I can do about it. I can't drive safely. I am unable to work. 

2. I do what I can do. There is always tomorrow. The laundry will always be there. The world is not going to end if it is not done all in one day.

3. As long as I have my kids and husband, I do have a purpose. Like I said earlier in this post, somedays are harder than others to remember. But I just have to keep reminding myself this. My kids  and husband need me. They need my guidance. They need me to kick their butt when they do something wrong. They need my love. They need to see me as a strong mom/wife. 

4.  I set it in my mind to accomplish one thing a day. Nothing major. Could be as simple as making a phone call. Doing 2 loads of laundry. Writing in my blog.  I do feel better if I accomplish something.

5. Start a blog! This has really helped. I don't know if anyone is reading it or not but it has helped me. It gives me a release. I can put down what I am feeling, thinking etc.. It gives me something to do. Gives me a task. Maybe I can help someone else who is going through what I am.

Don't get me wrong, this all sounds great but I do still struggle thinking positive but I remind myself of the above things and it does help me get through the day!

Fibromyalgia...I was angry to get this diagnosis

As a nurse myself, we were taught that Fibromyalgia was not actually a diagnosis. That it was given primarily to women with mental disorders. Women who didn't have anything better in their life than to complain. Mostly bored housewives. So, when the Rheumatologist said that she thought I had Fibro, I was livid! I mean really! I'm not a bored housewife. I worked 50 plus hours a week, had 2 kids, very active and that doctor actually had the audacity to say that I had Fibro! How dare her! The Rheumy seen the anger in my eyes. She asked "what's wrong Jenn?". I explained to her about what I was taught. She said "Jenn, what you were taught is old thinking. There have been great advancements in Fibromyalgia. Specifically, physicians realizing it IS an actual diagnosis."
At that point, I still wasn't sure if I believed her or not. I did come across a doctor here and there thinking that Fibro did not exist. They never said that but you can just tell by their expressions on their face. But whatever!
For the longest time I affectionately called Fibro "the shut up" diagnosis. I felt as though the doctors didn't really know what was wrong, so let's just call it Fibro to shut her up. I have done my research. I have read and read on Fibro. I do believe that it is real. I also believe that it may be the beginning of another medical condition that hasn't reared it's ugly head. Lupus and MS are similar. And if you read, many, many people with Lupus and MS also have Fibro. Hmm... just sayin!
So, yes, I have Fibro. I do have the trigger points. I do have the fatigue. I do have the chronic pain.

Just remember, it's not in your head, your pain is real and never let a physician make you think otherwise!

Upcoming Season Premiers

Since I heavily rely on television, here is a nice list of the upcoming season premiers I thought I would share. Plan accordingly:

September:

Sons of Anarchy Sept 10  

How I Met Your Mother Sept 23

Chicago Fire Sept 24

Law and Order SVU Sept 25

Criminal Minds Sept 25

October:

The Walking Dead Oct 13

November:

Doctor Who Nov 28 (yes, I'm a nerd)

Fall 2013 TBA:

Nurse Jackie

Kitchen Nightmares

Under the Dome (if it even makes it)

Some time in 2014:

Justified!! Oh I can't wait!

I can't say it any better!

It's in your head! There is nothing wrong with you!

I have heard this so many times. I am seeing it become a trend with medical professionals. My father was told this for many years. He was told to reduce stress, find another job and see a psychologist. He ended up in heart failure, Parkinson's, hole in his heart and a paralyzed diaphragm.Yeah, it was in his head. Bless his heart, he past away this past January after fighting a long battle. I have another friend who was told it was in his head too. It got to the point where he was intubated and on a respirator. It was still in his head. His wife finally told the doctors off. He was finally diagnosed with ALS.
If it is in my head, how can I make myself lose vision? How can I make myself produce a malar rash? How can I make 2 lesions (they don't know what they are) appear on my MRI? How can I make myself turn red and sweat  after trying to complete simple tasks? Guess I have nothing else to do in my life lol

I have even gotten to the point of hating going to the doctors. It would instantly put me in a bad mood. I would tell my husband "What's the point? They aren't going to tell me anything." But I continue to go. Even traveling to Cleveland Clinic which is about 3 & 1/2 hours away. I will say, at the Cleveland Clinic, that neurologist does not make me feel like I am crazy. She knows there is something wrong. Just doesn't know what yet.
It is always important to get a second opinion. Hell, even a third. And always remember, if your physician gets angry or feels betrayed because you want a second opinion, that physician is not a good one. Your physician should never get angry or feel betrayed. They are there to help you and if you want a second opinion, your physician should be accepting of that!

The hardest thing about my illnesses...my mind vs my body

I think one of the hardest things about my illness is, what my mind tells me and what my body will do. My mind tells me that I can still do all the things that I use to. Camping, amusement parks, mowing the yard, pulling weeds, painting etc... My body, says "ha...not so fast lady!". I get so discouraged. I think mostly because I am negative in my thinking. Simple household tasks should be stupid simple. But for me it is a challenge. I hate that! Oh gee, I did laundry today whoop-tee-do! I need to change my thinking. I need to look at the positive. "I did laundry today...great! Now, what is next?" I need to get over  what I was able to do before because that is not getting me anywhere. I need to start commending myself on the tasks that I do complete. Let me rephrase that, I will start commending myself on the tasks that I do complete. I will stop thinking about what I was able to do before and start thinking about what it is I can accomplish. I will listen to my body more. I will be more positive! Wish me luck!!

Trying to make the most of my day

Since I am fully aware of (but somedays do not except) that I can no longer do things like I use to. Completing tasks are a statical challenge. I am always computing in my head how to conserve energy to complete a task. Let me tell you, somedays just thinking about what I would like to accomplish is a task its self. So, here are some of my energy conserving techniques:

1. Shower before bedtime: I know this is going to make me tired anyways. This is really the only time      that I can raise the temperature of the water to warm. (Hot water exhausts me and messes with my vision) Oh yeah, btw, use a shower chair. There's no shame!

2. Vacuuming...sit on a computer chair with wheels: I have trouble bending over and pushing a vacuum tires me. So I sit on the computer chair and wheel around with the attachments on the vacuum.

3. Be sure to rest!! It is ok to stop and go lay down 15, 20 minutes or a hour or 2! It is better to stop what you are doing, rest and then go back to it. Household chores will NEVER go away. If you can't finish it today, it will be there tomorrow!

4. Washing dishes...do a little at a time. Who cares if you have a sink full of dishes. If you have to take 5 minutes to wash and then go rest, have at it!

5. Laundry: I hate laundry! Get clothes baskets with wheels so you can push instead of carry. I actually kick mine along somedays. Place the basket on a chair so you don't have to bend over sorting. This took me awhile to figure out for some reason?? Use "pods" instead of laundry liquid. I have tremors in my hands, especially when I get tired. I like the "pods" better! Less mess! Folding clothes...for me, I find standing up while folding is easier than sitting down. I work with gravity. After completing a load, I lay down for about a hour. I have to. Sorting, lifting, folding clothes is very, very taxing!

6. The most important thing I can tell you...

           ASK FOR HELP! If you know that you can't do your task today, ask for help. My kids have been

 wonderful! They now will actually step in when they see that I am struggling. They know before I acknowledge that I am getting too fatigued and need to stop. Great Kids!!

I will periodically list some energy conservation techniques that I use. Hope this helps!!!

Love terrific teenagers!! I don't know what I would do without them!

Steroids....the love-hate relationship!

Oh wonderful steroids! How I love thee! And....hate you! I just completed a round of high dose IV Steroids about a month ago. It was wonderful! The second morning, I got out of bed and thought "hmm...something is different". I was walking with very, very little pain. I thought "holy crap! This is awesome!" Energy! I have energy! I don't feel so drained! This is what it is supposed to feel like! Now granted, I had all these visions in my head what I was going to accomplish around the house. I was smart, I paced myself. Did small tasks then rest. Three glorious days! 

Pain and fatigue slowly came back. After about a week, I was back to where i began. This put my depression in overdrive. I got this taste of what I am supposed to feel like and now it's gone. Oh, how it sucks! So what exactly did the steroids even treat? Little bit of everything I suppose lol Like I said, steroids...love 'em and hate 'em!

Lose weight and exercise...yeah right!

"Lose weight and exercise" Seriously! This is what my appointment is for? I understand that if I lose weight I would feel better. I understand that if a person would exercise, they would feel better. But not me! If I could exercise, I would. I did say that to my former rheumatologist. She just wouldn't listen. She couldn't get that simple exertion is exhausting! Not running a 10 K exertion. Folding a load of laundry is exhausting. My arms feel weighted. I start to feel off balance. Have to rest NOW! Showering?? Showering is exhausting. For one thing, the temperature of the water has to be luke warm.  Then I have to rest afterwards. So, I want to get out and go to the store. I have to either choose from showering or going to the store. Or shower, lay down and rest for a hour or 2 then go to the store. Then come back home and lay down for a hour or 2. 

So yeah, guess all my problems would be solved if I lost weight and exercised!

First post...

Ok, this is the first time I have ever blogged. I decided to start this blog because I know I cannot be the only out there who cannot get a diagnosis. I can't be! I have an unknown autoimmune demyelinating condition. Talk about vague! I went from working 40-50 hours a week. Completely independent. Now, within 6 years, I can no longer drive, work or do housework. And still no closer to a diagnosis. I just thought that this would be a great place to share.