I have Multiple Sclerosis

It's taken me a while to adjust to this diagnosis. I doubt anyone ever considers how they will react or feel when told they have MS. At first I barely thought about it, bought some books, read them in part, but mostly didn't want to accept the facts.

Reality bit pretty quickly though. My neurologist prescribed a four day course of IV steroids which I was able to do at home. He put me on Clonazepam to help the dizziness which really messes me up and makes life difficult for me some days. I was also started on Copaxone shots, once a day, which is a medication to help modify the way that MS progresses. It stings like crazy, like a bee sting, and I cannot say I love it, in fact I pretty much dislike it really. At first I would put the shot on the table in front of me and just glare at it, probably willing it to go away, but that never happened! I still glare at it on occasion, but now just have to grit my teeth and get on with it!

I was dreading the IV steroids but the actual process was fine, unfortunately I ran into trouble when the dose was stopped after 4 days. I was SO sick. Every bone in my body hurt to the touch, I couldn't even rest my chin on my hand because it was so sore. I could barely walk, wasn't sleeping and ached all over. For 8 days life was miserable and I vowed to never, ever do IV steroids again. But then things began to settle down, I started to feel better, had a little more energy and began to sleep again. Sadly, that phase lasted only about 2 weeks before I began to feel tired again and my joints began to hurt.

I am starting to read my MS books again, it's hard to accept this is never going to go away. I have had some tingling in my fingers and around my face, so while I dislike the Copaxone intensely I am hoping it's working hard in my system to prevent my MS from becoming worse. Only time will tell!

Getting used to another new normal

I have been patiently waiting for the results of my lumbar puncture to come back. In the meantime I bought some books on Multiple Sclerosis so I could be a little more informed about the disease as well as the medications used to treat it. It's somewhat daunting, because I never expected to have a chronic illness like MS. It's a new 'normal' I have to get used to.

My biggest problem now is the total, absolute fatigue. I awake as tired as I was when I went to bed, and every day is the same. Sometimes I wonder how much longer I can continue like this. I look at my face in the mirror and think the tiredness and joint aches and pains are taking a toll on me. I think I am looking older, and more tired than I ever have! Of course I AM older and more tired than I have ever been - but that's completely beside the point.

My next scheduled appointment with the neurologist's office was late September and I was scheduled to see the PA. But on Tuesday the office called me to tell me that appointment had been canceled, Dr. Adams had created a space for me in his calendar and I was to go in and see him at 11.30am on September 15. So I am guessing all the results are back and they are as he expected.................positive for MS. I know it was something he prepared me for, and something I expected, but it was still hard to hear!

I am half expecting to come away from that next appointment with an IV as he had indicated he may start me out on 3 or 4 days of IV steroids. It's all going to be so much fun! (Do you detect a hint of sarcasm in there?)

So, less than two weeks to this most important appointment. I wish it was sooner because if I do have MS, as suspected, I want to get started on the right medications so that I can start feeling better again!

The dreaded lumbar puncture!

Monday 16th was the day of my lumbar puncture, and it's fair to say I was somewhat nervous!

I arrived at the neurologists office for my 8.30am appointment. My back was cleaned with Betadine, then numbing medicine was given via a shot, and that stings so much they should give you a pre-numbing shot!! HAHA! Then a small needle was inserted between the vertebrae and I immediately felt a lot of pressure down my left leg, so I told Dr Adams that and he removed the needle and reinserted it.

It didn't take long to collect the CSF, when the procedure was over he showed me the four vials and I was very surprised to see how clear it was, just like water. So that was it, nothing much to complain about really! I was then told to go home, and lie down for 6 hours and drink a lot of caffeine! Apparently this helps avoid the dreaded Lumbar Puncture headache which is incredibly painful. After lying down in the doctor's office for about 45 minutes, I had to go to another office to have some blood drawn and then Chuck took me home where I spent the rest of the day lying in bed, swigging copious amounts of Coke!

I don't normally drink anything with caffeine in, and I paid for it during the night! Although I was tired I slept poorly! My back was sore and I slept for an hour and had to get up to pee, slept for another hour, had to get up and pee, slept for two hours, asked Chuck to get me some painkillers! It was a long night and I felt terrible the next morning, so Chuck called in sick and stayed home to help out with the boys.

Now I have to sit and wait. The CSF is sent to Minnesota and the results will take about ten days or so to come back. And right now I don't really care if I do have Multiple Sclerosis, I just want to start on the correct medicine for me, and start to feel better and be able to do things again!

And it still is all about me!

I was pretty anxious waiting for my appointment with the neurologist. I saw my rheumatologist and talked to him about my physical therapy appointments and my dizziness. He wouldn't make any comment on my health until the neurologist had seen me, neither will he change any of the many medications I take, until I have seen the neurologist! I wonder if Dr. Adams has any idea how many people are waiting for his professional verdict on my symptoms!

So, the big day arrived and I think it's fair to say I was nervous. Unfortunately Dr. Adams is a very busy guy, seems he's the best neurologist in this area so it was about 45 minutes before I got to see him. I talked to him about my dizziness, about my difficulties in the past with picking up cups and glasses, and my problems with tripping and 'missing' steps, and my inability to balance on one leg. I told him about having such difficulty managing in the heat, that my body temperature seemed to be rising and rising and I seemed to be completely unable to control it.

He sat quietly and listened and then said "You have just given me a classic, perfect description of Multiple Sclerosis." He then put up the films from my MRI and began to show me the different lesions pointing to each one and saying "This is MS," This is MS", "This is a 56 year old brain!" and "This is MS". It was a bit of a shock to hear all this but I remained calm while we went back into the consulting room to talk some more.

Dr. Adams indicated that he wanted to talk with my rheumatologist so they could talk about all my symptoms, but at the moment it is looking less likely that I have Lupus and more likely that I have MS. I was also told that he would like to perform a lumbar puncture on me. I was dreading that, because my last memory of one of those was assisting at one when I was a nurse and the patient (a guy) was crying because it hurt so much! But as Chuck said, "And how long ago was that?" Yes, is was 20 years ago, but it is something that has remained in my mind all that time.

He talked to me about the likelihood of putting an IV in my arm and giving me very high doses of steroids over 3 -4 days, after that I would be put on any one of numerous MS medications, that are all given via injection. I have always said I wouldn't want to have diabetes because I wouldn't want to give myself a shot each day, but it now seems like it's going to happen anyway!

I have a lot to think about.

I haven't felt like blogging!

There's so much going on in my life right now and it's all about me!

My health has been a problem lately. In April I mentioned to my rheumatologist that I was having problems with dizzines. It was really uncomfortable to turn my head to the left or right or to look upwards at something. I got so dizzy and nauseous that I had to close my eyes and wait for the moment to pass. I thought it was probably a side effect of all the medicines I take, but he didn't think so and referred me back to my ENT doctor. One of the tests he did on me was to have me lie flat on the table with my head turned sideways, then he pulled me up into a sitting position as fast as he could. All I can say is - it was horrible. I lost all idea of where I was in space, the dizziness was so severe I even cried out because it was so uncomfortable. He then suggested I see a physical therapist specialising in balance problems to see if that would help.

At my first physical therapy appointment Diane also did the test Dr. Hegarty had done, in addition she checked how I walked and turned and asked me to balance on one leg. At that point I was very shocked to realise I couldn't balance at all. She told me "You are far too young to be this bad Wendy". It was a shock for me to hear that. But over the weeks I have seen her, we have worked out various exercises to help me, but despite all our efforts I was still experinecing dizziness on a regular basis. She tried massage on my neck which was incredibly stiff and I discovered I couldn't turn my head to the left as far as I could turn to my right.

In the end Diane referred me back to Dr Hegarty as she wanted me to have an MRI of my cervical spine and brain, before she did any more work on me. So I trotted off one evening to have that test done, lay inside the MRI for an hour, which I thought was just 15 minutes, and the following week went back to my ENT doc for the results. I thought there would be nothing on the MRI, but that wasn't the case! I was shocked to find there are a couple of lesions in my brain, which seem to indicate I have Multiple Sclerosis!

The minute I read that on the radiographer's report my stomach dropped right down into my shoes, and stayed there for a good day or two. It was not what I expected, it really wasn't. It totally threw me for a loop. I was recommened to set up an appointment with a neurologist, which will be in three weeks time on August 10.

What Came First?

The yarn or the pattern?

Along with many knitters, I tend to buy yarn because I have fallen in love with a particular colorway or texture. I love visiting my LYS to touch new yarns, to admire the colors and I cannot leave the shop without buying something! I have been asked not to drool so much although I have a feeling the staff are used to their customers doing that!

Whenever I buy a new yarn, I want to use it immediately. I want to make something and if it's a hank I waste no time in getting it wound into a ball and start to look through my own patterns and on Ravelry and numerous other knitting sites for ideas and suggestions.

One of my favorite online stores is The Loopy Ewe. The selection of yarn they carry is amazing, and I never realised that so many colors and so many shades of color existed. I quickly created a wish list of favorite yarns, and have ordered one or two whenever I have had the money available. One particular favorite is a yarn called Fiesta Ballet, it's a very soft blend of superfine Alpaca and Tencel. The colorway I selected is called Stargazer and it's so pretty. Soft hues of pale green, lemon, pink and lilac combine to create a truly beautiful yarn.

But I have no idea what to make with it. I have tried several different patterns. I have tried different combinations of stitches and none of them seem to be right for that yarn. It's SO frustrating! And so for now I have put that yarn away. It hurts, I hate putting yarn away! I want to make something with it but I have to continue to look around until I find the right pattern for it.

Perhaps in future I should buy yarn only when I have a pattern in mind, but while that's practical it is no help when I am in the yarn shop and drooling over some newly discovered yarn!

Great conversations with your children. Part 2

My last 15 minutes with Oliver have been like this (my responses are in red):

“May I have a yogurt tube?”
Yes.

“Which one?”
Whichever one you want.

“May I open the new box?”
Not until the old box is finished first.

“WAH! WAH!”
“May you open this for me?”
Yes, bring it here.

Get it away from my laptop!
Don’t drop it on my knitting!

“May I have another yogurt tube?”
No.

“Why?”
Because you can’t just eat them one after another.

“Was that the last one I will get today?”
I don’t know.

“When can I have another then?”
Not right now.

“But I want one now!”
You can’t have one now.

TWO MINUTES OF QUIET

“May I have one now?”
No.

30 SECONDS OF QUIET

“May I have one now?”
No.

WAH!WAH!WAH!WAH!

Thump Jamie as he walks past just to make himself feel better!

Jamie now crying!

Oliver upstairs crying!

Mummy about to cry or commit murder, not sure which will come first!

I can only hope that Oliver's tenacity serves him well in the future!

I'm in love!

It finally happened, I have fallen in love! I know almost to the minute when it happened too. I can't escape from it and being in love is, well, lovely!

It's knitting, yes, knitting. I am in love with knitting!

My mum could knit anything, and I mean anything. She could knit the most complex patterns and designs with no errors. We all wore her works of art as kids, beautiful Fair Isle patterns, complex Aran sweaters, and basic cardigans to match our school uniforms.

She often tried to teach me to knit, she would cast on 20 stitches for me, show me how to knit it and left me to it. Within moments it seemed that piece of knitting was full of holes and had 17 stitches, or it would be full of holes with 23 stitches! I couldn't even knit a decent scarf for my dolls! So I gave it up and contented myself with holding skeins of yarn while my mum wound them into balls of wool, repeatedly reminding me to "Keep your hands up!"

Years later I taught myself to crochet and was able to make baby clothes and blankets for my friend's children but that was it. I loved to draw and paint, so took art classes, I tried patchwork once, just the once, sewing is not my forte, although I did make some of my own clothes! I tried just about any craft you can think of, did quite well with mosaics for a while, but never got back into knitting, it just didn't interest me.

About a year ago however, I was in my local craft store and found myself in the yarn aisle, where I fell in love with some pale lilac, fluffy yarn. So I bought a couple of balls and some knitting needles and went home to make a scarf. It was very basic, just garter stitch and the scarf grew quickly, I loved the softness of the yarn and how beautiful it felt against my neck. I sent it to my friend who had to read all my emails about how wonderful the yarn was. She wore it to work and then emailed to ask if I would make more as several of her colleagues wanted to buy one!

And that's how my little home based business began!

This past winter I sold lots of scarves, each made to order! I taught myself to make knitted hats and children's scarves, but all with 'fluffy' yarn to hide the imperfections I thought my knitting had! I knitted frantically and loved every minute of it!

After Christmas I decided I wanted to see what my knitting was really like, so bought some 'non fluffy' yarn and knitted up some swatches. I discovered I had really good, even tension and could follow a simple pattern pretty easily. I bought some yarn online but then I went out and discovered my LYS (local yarn store). It was a revelation to me. The colors, textures and types of yarn now available is incredible! It's just staggering! I had absolutely no idea. Yarn is made from bamboo, silk, corn and even milk! I had so much fun going around the store touching the yarns, looking for the softest and prettiest!

At first I was actually a little scared to knit with these new yarns, just in case I couldn't repeat the neat and tidy work of my swatches, but I selected a stitch pattern that seemed pretty easy and got started! And that was it! I fell in love!

I am having so much fun, but I am spending all my money at the yarn store - I am sure they must love me! I am making neck cozies with ruffled edges, long, skinny scarves and fingerless gloves! I want to learn to knit in the round, I want to add beads and color to my work and it's so exciting!

How can knitting be exciting?

I wish my mum was still alive so I could share this with her and she could show me all the things I want to know. I think of her so often now, because I knit every day. I take my knitting with me to while away the time while the boys are in their Taekwondo class and I knit every evening while watching television. I find it soothing and restful, something I have really needed in my life.

I have quickly become a yarn snob! I don't want to knit with nylon yarns. I want wool, and silk and baby Alpaca (so soft). I love cashmere, but wish it wasn't quite so expensive! I love Malabrigo Worsted, 100% merino wool. It's my current favorite. I can't afford a yarn winder, and I have no-one willing to sit with a skein of yarn over their hands while I wind my wool into balls, so I upend two small stools and use those instead! I am going on a day trip to Nebraska (oh it will be a long day) to visit the Brown Sheep Mill, and I am so looking forward to that.

I intend to knit all year long, so next winter I am ready to sell my scarves! Only the most expensive yarns will be made to order. I want to set up a website and make business cards for my little enterprise. But first I have lots of knitting to do, I already have a great stash of yarn, and each visit to my LYS finds me wanting to go back soon and buy more!

So I am in love.

I never, ever thought I would give up mosaics for knitting. I would not have believed it possible. But it is, and I have never been quite so happy with a hobby! Here's to my mum - wish you could see me now!

Great conversations with your children!

So this is the conversation I just had:

Oliver: “Mommy! Mommy! I need you!” This coming from the downstairs toilet.

Me: “What do you need?”

Oliver: “I need juice!”

Me: “You can’t have juice in the toilet, you can have it when you come out.”

Oliver: “But my poop’s too big! And you told me I had to drink more liquid!”

Me: “Oh, well it won’t help you right now!”

Oliver: “Did you hear that?”

Me: “Hear what?”

Oliver: “That big plop when the poop sploshed in the water!”

Me: “Yes, I heard it.”

Oliver: “I don’t need my juice now the poop is out!”


Isn’t life as a parent rewarding, fulfilling and full of poop!