How MS Feels (MS Extreme)

I found this on www.myspace.com and thought it pretty funny ;) not everyone with MS has all of these, but i have quite a "few". the itch is the one and only one you'll hear me complain about. thank GOD it's gone for now...
enjoy :D

When We Say We Can't do Something Because We don't Feel Well,
Put yourself in Our Shoes By Using The Examples of our Symptoms Below...

- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of Novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

- Tingling: Stick your finger in an electrical socket - preferably wet.

- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?

- Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.

- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

- Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each
one...Bzzzzzzzzzzzzzzzzzz

- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and
allow them to periodically crawl around throughout the day, heck all day would be good too.

- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensative area.

- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take
several walks around the deck with your eyes closed.

- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the
same at all.

- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there
till tears appeared.

- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

- Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte's):
Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and
erase three things and ask why you bought those things.

- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.

- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.

- Swallowing: Try swallowing the hottest chili pepper you can find.

- Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person
without MS would feel bad, now add all of the above symptoms - welcome to
our world.

Then Finally...

After subjecting yourself to the items above, let everyone tell you that you
are just under a lot of stress, it's all in your head and that some exercise
and counseling is the answer.

how to have fun on a budget on a gorgeous afternoon:)

so i have a cell phone that takes pictures and videos. it's fun, you don't really need these extra features, but the upgrades all have them now.

damn

well, dave had an online webcam interview with Shadowbox Productions in Yardly, PA. full time editing gig with benefits. but they are looking for the ONE thing that dave doesn't have much exp in and of course, we don't think he got the job.

sux

if things don't start for him, we have no idea what he's going to do. his place isn't giving him shit and in order for him to go elsewhere, he needs benefits or just join the union for that alone.

he works his ass off, he's MORE than paid his dues. we moved out here for his career....it's time. we need to make the right choices for jayden.....anyone out there know of ANYTHING for the poor dude, please contact him....no assistant positions please.

as for me, i have my FIRST confirmed photo appt, Oct. 13th :D if you know of anyone with a family who wants pictures done for the holidays, send 'em to http://www.deirdreryan.com and have them email me at:
deirdrer@deirdreryan.com
i'm also taking in digital retouching and restoration jobs too :)

frrraaaccckkk!!!!! ugh!

ok, i woke up this morning and i feel like i was run over by a caravan of ice road truckers.....basically i feel like i have the flu. this is just a side effect of my body getting used to the betaseron. sucks but i can't do anything but suck it up and do what i can to be around for jayden.

today however, i couldn't. thankfully, dave had an online interview at 10AM PST and just stayed up and allowed me to rest after his interview was over. all i could do was lie in bed all fracking day. poor dave. the worst is my eyes hurt badly causing a headache that just won't go away and i've been popping tylenol and fiorcet all day long. nothing helps.

i'll be feeling like this every fracking day for at least a month.

sucks ASS.

later this afternoon, jayden FINALLY went down for her nap, letting both of us take a nap. poor dave.....i honestly do try, but its so frackin hard, feeling like this and the worst part is that i could barely spend time with jayden today. we sorta caught up this evening, but still....it's not fair to her. she may not realize it now, but soon she will and that hurts me greatly.

in a month i'll be on the full dosage, so hopefully by then my body will be like...ok, i'm fine now, lets start getting stuff done..kind of thing.

sigh....ok, pity party over. i really don't feel right venting about this at all, but if i don't then what's the point, i'm only human :P

ok, i need to drag my sorry ms ass to bed ;) LOL

video blog

so my laptop has a built-in video camera, the volume is too low, but i don't care :P

back from new jersey where the good meat products reign

so yeah we've been back almost 2 weeks now. looking forward to being among the gang.

joe, i'm so sorry that we didn't call you guys :( david and i weren't able to rent a car, and we had such a limited time back home. sorry excuse, we know, but it's the awful truth. there were a lot of friends and family we weren't able to visit or have time to even call up. david and i were plainly worn out from his job, and the hell of having to go through we happened to us. and finally being around our family and they were more than happy to help us with jayden so that we could rest a little.

when we left l.a., jayden was just starting to walk, but as soon as we hit n.j. soil..BAM! she got up and just walked over to my parent's 17 stairs and went up them as though she always lived there!

she got to "swim" in the atlantic and literally went after the waves, we had to hold her back so she wouldn't float away!

we had a great time back home. got to see jon and amy at their house in the philly area, it was great seeing them again. we miss them both very much. tried to see john stone, but it just wasn't possible.

so we brought back a new child, as well as new changes in myself. i had a mini makeover :)

now that my depression is more under control, tonight i start my betaseron. the plan is to be on it for 6 months at the very least. by then we'll see what to do in terms of having another baby, actually have a plan. i need to be off the treatment for at least 2 months before ttc(trying to conceive) again. the biggest concern is that if we lived closer to family, then we would have the help that we need. but first i need to protect myself with the treatments.

i say protect loosely as i was on treatment when my relapse started. i HATE to self-inject every other day. there are other self-injectables that are either everyday(copaxone) or once a week(the needle on that one is HUGE, made to go into the muscle, called avonex and you can have a nurse administer it for you at home), once a month(that one is administered as an IV, called tysbril), or every 3 days(i think that one's rebif). i am protected when prgt, women with ms and are prgt, our bodies go into remission, but can have a relapse afterwards(which did happen to me earlier this past summer).

BUT

i'm thankful that there is something out there. before there wasn't as many choices or none at all.

overall, being at home, i did well with the mugginess. i did have some problems with my right arm, it went numb and tingly from my entire hand up to my shoulder and it lasted a little over an hour. and i exp'd "some" problems with my right leg at times, but it never lasted too long. just a reminder about what i have :P

being with family and old friends was GREAT. i got some feedback on my work that opening a studio in my town would be very well received as so many there know me and my family as i'm a "townie". some of the business owners there are family friends of ours, so they said that they would be more than happy to let my dad hand out mini postcards with my business on them to advertise my digital retouching and restoration. preservation is very important in my town, so we'll see what happens.

david is back to work and already wishing he wasn't there. the day after jayden's l.a. party, i was on a set of a small indie film and david was offered the job of cutting it the night before we left. so with the help of our other laptop and borrowing the latest final cut pro, he was able to do a rough cut while we were away.

even with an injury....

we drove over to selinsgrove, pa to visit his aunt betty and his parents. my parents have never met her, so we all went together. it was a great visit and aunt betty was just thrilled to see jayden in person for the first time :D

dave was holding jayden in his lap and she reached up to his face and scratched his right eye. so bad that in fact he had to go to the ER. since our stay in selinsgrove was an overnight anyway, he held out until we back to nj. we were then thrilled to find out that robert wood hospital in hamilton was in our ppo network! WHEW! still had our $75 co-pay, but we were covered. turns out dave had a really badly scratched cornea and had to go on a little perkaset and eyedrop antibiotics. he healed up really well and was able to function normally.

overall, jayden remains a very happy, thriving baby/toddler. walking a lot, signing more, even MORE curious about everything:D no problems on the plane at all, not even during take off and landings. actually she enjoyed the rush of speed :D she's been climbing more and more too, so we've been searching through craisglist to get a little tikes/step 2 outdoor play area with a slide. we found some, but being on a strict budget, we're looking for a great deal on something for her.

so yeah, we're looking forward to seeing everyone again :D

love,
us