Saturday, December 19, 2015

Squatty Potty

Must remember to ask Tom if he has seen the "Squatty Potty" commercial.

I found it amusing, though somewhat disgusting. There is a link to the You Tube post showing it posted in the BT MS forum.

MS Fatigue

MS Fatigue
Fatigue & MS: It’s Different
By Laura Kolaczkowski—June 16, 2013
People living with MS understand the following statements all too well:
“If you just try harder.”
“You’re just depressed- once you get that under control you’ll feel better.”
“If you lose some weight that would help.”
“If you gain some weight, that might help.”
“Of course you are – I have days like that, too – but I push through and you can, too.”
Reader FavoriteThese are just a few examples of usually well-meaning people encouraging us to cure our own MS fatigue and get back to the activities of daily life. If only it were that simple.  About 80% of people with Multiple Sclerosis list fatigue as one of their worst symptoms, yet it seems to be among the least understood.  Because we ‘look so good,’ it is difficult for others to comprehend the continuous assault going on inside our central nervous system. Fatigue can’t be measured or touched and it takes a good deal of energy to explain it to those who don’t have MS.
Many people with MS refer those who don’t understand our particular fatigue to the Spoon Theory, written about living with a chronic disease, by Christine Miserandino.
The spoon theory proposes that we begin the day with so many spoons and once we use them up, they are gone for the day- we have to choose what we do each day and pace ourselves so that we have something in reserve at the end of the day.
Recently I saw a reference to a different yet similar explanation of fatigue  –  if healthy people begin the day with a tank full of gas in their vehicle, people with MS get perhaps only a gallon or two to get where they need to go on any given day. Our tank hits empty long before others’ fuel supply.
My fatigue comes with physical activity – I can be mentally engaged all day long, just don’t require me to get up and move because this is when the exhaustion hits hard and fast. My central nervous system isn’t wired like a healthy person, and the signals are constantly corrupted and move slower.  Due to balance issues, my body is always fighting to keep me up right, but in exchange my energy reserve is used much more than a healthy person.   My body is in a constant battle almost all the time when I move and that is the main source of my fatigue.  It is different for each and every one else as to what brings on their fatigue.
What seems to be the same for all of us, though, is the inability of those close to us to really understand why we have to stop.  MS blogger Trevis Gleason calls this the ‘lay down or fall down’ option, and rightly so.  If needed, our body will stop us if we aren’t smart enough to do it ourself. As we learn to live with our MS, we also have to learn to be smarter about pushing through when we should be hitting the brakes, but getting those around us to understand can be hard or even feel impossible. It is a tough lesson to learn and it took me a while, but I am no longer cajoled or prodded into pushing when I just don’t have it to give.  I hope you have learned to slow down when necessary and not push until your MS becomes the boss and stops you in your tracks.
Wishing you well,
Laura



That wasn't written by me, but it really explains what I have to deal with as a person with MS. The "Lay down or fall down" analogy is very similar to when I say that I got to a "Sit down or fall down" point when I've been walking for too long.

I dealt with this in 2003 (after my youngest son turned 2) which was 5 years after I was diagnosed with MS. I couldn't walk more than a quarter mile before I got to that point. I actually DID fall down when I didn't listen to my body.  I got referred to a MS specialist and she suggested I try Novantrone (mitoxantrone), a chemotherapy that helped some people with progressing MS get back to their old normal.

Novantrone has a negative cumulative effect, it's heart toxic after 12 infusions. I've had 9 infusions and I decided I didn't want to do the last 3. My sister died from a heart attack that was caused by her having type 1 (insulin dependent) diabetes. It's not the same, but my parents had already lost one adult child and I didn't want to potentially add to the pain.

My sister passed away in 2006 and that was the same year of my final Novantrone infusion.


Sunday, November 22, 2015

11/22/2015. 5 days after total hysterectomy

I I realized something yesterday, no more knee pain.

Life with MS can throw one some strange curveballs. I didn't totally realize that the knee pain was related to menses.

As I sailed through peri-menopause I was experiencing strange aches and pains. Now that I'm in full menopause with my ovaries out, I'm enjoying the lack of knee pain.

Why didn't I do this sooner? Mostly because the doctors didn't want to do this on the off chance it might help?

Why don't male doctors listen to female patients? Women generally know their bodies best. I'm guessing a lot of men don't want to accept that little factoid.

Tuesday, October 27, 2015

New project idea

I'm sitting in my living room, thinking of all the knit dish cloths I've made, then an idea popped into my head - make an afghan out of a bunch of dishcloths sewn together. I've made a bunch, I love making them, they are so quick and easy. I can make one 8" dish cloth in a day.

Life with a teenager in the house

I'm sitting here, with a project sitting next to me on the couch, but I'm also reading posts on Facebook. Jann's post

Mmmm, cupcakes with "scary" strawberries on top.

Then I think that if I made something like that Nicolas would find a way to eat them before we go to the Halloween party we were invited to on Saturday (Halloween 2015).

I only need to knit a few more rows of this dishcloth, then I'll be finished.

Back to work!

Monday, October 26, 2015

Ugh... tired

I almost feel like I'm hungover, but I haven't had anything alcoholic to drink since Saturday, when Tom and I went to the Halloween party at the House of T&T. I was totally sober by the time we left.

I'm tired and nauseated... I think I'll go back to bed.

The true reason I feel like this is probably because my menstrual cycle started today. BLEH!!!

Taelor's red spot

On 24 October 2015, Brandon and I took Taelor to the vet to have a a small mass on his left leg checked out. They took a biopsy and prescribed abx. I should hear back within 2 weeks.

 I hope it's something benign.

Tuesday, October 20, 2015

Make Your Own Flea Shampoo

Make Your Own Flea Shampoo Simply combine one cup Dawn, one cup vinegar and one quart water.

Hmmm.. I just found this online... one of the Life Hacks. I'm looking forward to trying this recipe.

Saturday, October 10, 2015

Almond Flour Banana Bread...

I'm currently baking Banana Bread that is made with almond flour instead of wheat flour. It will be ready in about 45 minutes and I'll post a review in my cooking blog: Jendy's Cooking.

I used coconut oil for the oil, honey for the sweetener and I've already mentioned the flour swap. There is also some some chopped walnuts and mini chocolate chips in this batch.

Friday, October 9, 2015

Wheelchair Kamikaze: Experimental MS Drug Ocrelizumab Deemed A Success ...

Wheelchair Kamikaze: Experimental MS Drug Ocrelizumab Deemed A Success ...: Last week, the drug company Genentech (a subsidiary of Swiss drugmaker Roche Pharmaceuticals) announced that its Phase III trials for trea...

Monday, September 28, 2015

MITOQ

This is what I found in an ad online...

Friday, September 25, 2015

Hysterectomy...

I have a pre-op appt regarding me getting an oophorectomy(total hysterectomy). On 4 November 2015. Entire baby factory will be removed in hopes that it will help me with my MS. I've been having flare-ups of old MS symptoms during my menstrual cycle... bleh.

Today I feel like the old sx from when they thought I had carpal tunnel syndrome. Pain in my right hand and fingers.

I also had a biopsy of my uterine lining. I thought the bleeding from that had stopped, but a few hours later it seems heavier. So it's either post biopsy bleeding, or I've started my period, which I thought might be starting this weekend... time will tell.

I'll be getting a call soon to let me know when I'll be scheduled for surgery... I'm guessing sometime in November.

If I menses didn't start just after the biopsy (25Sept2015), I started on Sunday, 27 Sept.

Monday, July 27, 2015

MS appt on 28 July 2015

I have an appointment with the MS specialist from Swedish medical tomorrow. We will discuss potential meds for me to go on now that I've stopped taking Aubagio. They don't like it when I'm not on a med.... I can't go back onto Methotrexate since I'll be having surgery within the next 2 months.

They keep suggesting meds for people who have the relapsing/remitting type of MS, but I've been secondary progressive for at least 5 years. I have no active MS lesions in my brain. They (the regular MS doctor and specialist from Swedish) frustrate me beyond belief.

Once again, I've lost faith in the medical profession.

Monday, July 20, 2015

Homemade Ice packs

Found this on Facebook... It was nice to get a refresher of what my PT had told me years ago.

Thursday, July 9, 2015

Games to Train Your Dog

Games to train your dog

There are many reasons to play games with your dog. For one most important reason, it will strengthen your relationship. People who regularly play with their dog develop understanding, respect and communication with their dog. Games are activities you do with your dog that require the two of you to communicate and work together in some way. Dogs are social creatures, playing games is an important element in developing social relationships. Playing games is a fundamental way of ‘modeling’ a real life. You can teach a dog to obey by playing games that make following your instructions fun.

Besides that, it will keep the dog from getting bored, which will keep him from things you don’t want him doing, and make him healthier.

Games to play:

  • Hide and Seek: Put your dog on a sit or down position to wait. Then you go and hide in another room or behind a door. Call him when you are ready. Act very excited and give him a treat when he successfully found you. Start with an easy place and slowly move to more difficult to find places. This is fun and will also teach your dog to wait until called.

  • Fetch: Some dogs are natural fetchers, others are not. But it can be trained and have fun. Start be throwing a toy/ball or stick to shorter distances for a start, and command “fetch”. When he manages to fetch it, praise and reward him a lot, eventually he will know the game. Also, practice “drop it” in this “fetch” game. If your dog refuses to return the ball, which is quite common, or drops it too far away, end the game in disgust.

  • Drop it: One way to train “drop it” is to give the dog large items to hold, then offer a very desirable treat for exchange. Wait patiently until the dog notices the attractive treat, and drop the thing and exchange for the treat. If the dog picks it up again, try another exchange and practice again. When the dog is dropping the toy regularly, start giving the cute “drop it” before each treat.

  • Clean up your toys: Get a box to collect a number of toys, Scatter a few toys on the floor. Through shaping and teasing, get the dog to pick up the items one at a time, and place them in your hand. Once the dog is lifting the items high enough to get your hand underneath to receive, you are well started. Reward each “gift” with a treat. This is a “return for refund” game. Try different shapes of items which are safe for your dog to pick up. Each item retrieved is dumped into the bucket. You will be surprised; your dog will end up helping you to clean the house!

  • Find it!: Put your dog in a down-stay position, show him the treat or his favorite toy, then let him watch you put it behind a door, a chair or under a towel. Then tell him to “Find it!” When he does, give him lots of praise. And of course, he gets to eat a treat. You can repeat this by varying the places and treats. Over time, hide the treat where the dog can’t see it, like in another room. Release her, and let her get the treat. You can increase the distance and difficulty level. This is especially good for dogs that have learnt “stay” but are nervous about having their people go out of sight.

  • Simon says: If you have the right attitude, you can make obedience training a game. Let your dog prove how clever he or she is by sitting when you say “sit”, lying down when you say “down” etc. Try it when your eyes are closed, your back is to the dog, or you are in a different position like lying down or even standing on your head! For advanced learners you can try to mix up “drop it”, “take it”, “get it”, “hold it” and “leave it”. You’ll be surprised with the results if trained properly and with patience.

  • Give him a problem to solve: :Bored dog? Put a treat inside a cardboard box and let your dog work to get it out. Make it easy at first – start with a box without a lid and let the dog see you put the treat in it. Work up to more difficult ones. Depending on your dog’s skill, you may end up with pieces of box all over the floor but you’ll have a very happy and busy dog throughout the process.

  • Playing soccer: Need exercise? Did you know you can teach your dog to play soccer too? Start the game by gently kicking the ball along the ground toward your dog. Encourage him to get it. The ball is too big to pick up with his teeth, so it will take him a few minutes to figure out that he must push it with his nose or bat it with his paws. Give him lots of praise as he begins to catch on. As he gets better at it, you can include more people in the game. For breeds too small to handle a soccer ball, soft rubber balls can be used.








Wednesday, July 8, 2015

Aubagio

17 June 2015T

Today I started the oral MS drug , Aubagio. It's for people with RRMS. I hope it will work for me


I developed a rash a couple weeks after I started and subsequently stopped taking it on 3 July 2015.




Natural Weed Control

Natural Weed Control That Works

Yesterday
Natural Weed Control
I don't usually post these things unless I have tried them, And this works. I was amazed how fast I saw results too.
Mix:
1 Gallon white vinegar
2 cups multi purpose epsom salt
1/4 cup regular blue dawn dish soap
Put into gallon sprayer, if you don't have a sprayer, You can use anything that will spray out liquid, Saturate weeds.
I used this in the morning around 10 am went back in a couple hours and the weeds were wilting and turning color, a few hours later, bye bye weeds. Use this every couple weeks to control weeds, all safer for the environment, and allot safer to have around the house with children and pets. 


I found this on Facebook and and mixed the ingredients in a sprayer and put some on the weeds in the sidewalk by my flower bed. (7/8/2015)

Thursday, May 21, 2015

Broken Nicky

Nicolas broke a bone in his foot when walking down the stairs at school 8 days ago. He saw the orthopedist today and brought home a digital copy of his x-ray...  I'll scan it and post it in here.

Friday, March 13, 2015

Oh, the insanity.

The annual inspection of my apartment happened on March 10, 2015. I told the inspector that the towel bar above the toilet in my bathroom needed to be put back up. I had lost my balance when getting out of the tub after my shower one day, and grabbed the hand towel bar to keep me from falling onto the toilet.

The stopper in my bathroom sink doesn't work either, so it needs to be fixed.

The person who was sent out with the work order got sent to the wrong address with the wrong tenant name, they were sent to my MOM'S apartment in a different part of town.

My mom is Jeanne Gach at 719 Q Ave #313.
I am Wendy Gach at 1008 24th St Apt B. Both of us have Multiple Sclerosis, but they are different kinds. My mom is confined to a wheel chair when she needs to get around, I am not.

Mom doesn't need the towel bar for hand towels put back up, nor does her bathroom sink stopper need to be fixed.

Oh, the ineptitude. The inspection was at 1008 24th St, the inspector must have forgotten that, in spite of the fact that she filled out paperwork about it.

Now to fill out paperwork for reasonable accommodations... a grab bar to help me get into and out of the shower and a work order for my hand towel bar to be put back up. All the parts for the towel bar are still in my bathroom, next to the toilet.