Mother's Pride

These thoughts have been going around in my head for years, since my twins were born actually. It was early on after their birth (when the hormones were probably still raging) and I was driving back from the grocery store listening to George Michael's 'Listen Without Prejudice'. It's a great album but one track at the time particularly affected me.

Although I had listened to it many times before and have since, each time I hear it now I realise once again how having children changes your life in more ways than you can ever imagine possible.

On that particular day, the words of the song 'Mother's Pride' moved me deeply. It's about women saying goodbye to the men they love, be it husbands, sons or lovers and waving them off to war.

Suddenly I understood something I had never before considered.

Children have a capacity to hurt you in way you would never have thought of. Not by being mean, or rude, or naughty, but by getting hurt, or sick, wounded or killed. By going off to fight a war and not come home.

I cannot imagine how it must feel to lose a child, no parent ever wants to find that out for themselves. I know war is almost a fact of life, and this is not an anti-war message, but it's a message about the effect of war on the people left behind - I think.

I cried driving home that day (again, I blame it on the hormones) but I have never forgotten it and while this isn't meant to be a morbid post, it IS meant to show that things that are familiar, that are everyday can change when you have children.

I recently re-discovered 'Listen Without Prejudice' and it brought back all those thoughts from almost 6 years ago and I decided I had to write them down. The words of the song are here, I hope George won't mind if I get them a little wrong, this is from memory!

Mother's Pride

Oh she knows, she takes his hand

And prays the child will understand

At the door, they watch the men go by

In the clothes that Daddy wore

Mother's pride

Baby boy

His father's eyes

He's a soldier waiting for a war

Time will come

He'll hold a gun

His father's son.

As he grows, he hears the band

Takes the step from boy to man

At the shore, she waves her son goodbye

Like the man she did before

Mother's pride

Just a boy

His country's eyes

He's a soldier waving at the shore

And in her heart, time has come

To lose a son.

And all the husband, all the sons, all the lovers gone

It makes no difference

No difference in the end

Still hear the women say "Your daddy died a hero"

In the name of God and man

Mother's pride

Crazy boy

His lifeless eyes

He's a soldier now for evermore

He'll hold a gun

'Til kingdom come.

New Year = Same Old, Same Old!

When we welcome in a New Year we all hope for a better year, a brighter year, good luck, happiness and good health. So what the heck happened to my New Year??

It's only January 20th and I have already had problems and been hit with a big 'whammy'!

The start of the year found me experiencing problems with my eyes. My left eye in particular felt like there was grit in it, and it was so sore to blink and look around. I spent the best part of one weekend with a tissue held to my eye to keep it closed to see if that would help - it didn't. After 4 days of feeling like I had been in a sandstorm I gave in and called my ophthalmologist. One of the concerns with MS is a complication called Optic Neuritis and I wanted to ensure I wasn't developing that. I had numerous exams, my eyes were dilated (which I totally hate) and he found absolutely nothing wrong. That was good but didn't explain what was going on. He also didn't think it was allergies but he gave me some eye drops to see if it would help.

The following week I was at an appointment with my rheumatologist and mentioned the problem with my eyes, we talked about various things, he sent me off for blood work and other tests and that was that.

All that brings us to this week. On Tuesday I was at the neurologist's office discussing the fact that the steroid treatments don't really help my symptoms for long, and it was suggested I may be referred up to the University of Colorado Hospital in Denver because my case was becoming more complex and difficult to treat. My balance and coordination was checked again, and I am still in danger of falling over the moment I close my eyes so things are not much improved.

The neurologist called my rheumatologist to talk about me and the blood work I had done, and when she came back in announced something that was a big surprise to me. I have another auto-immune disease - that brings me to three now - or is it four - I am losing count! Now I have something called Sjogrens Syndrome. It's the cause for my dry eyes, my sore throat and the need to drink during eating to prevent my occasional bouts of choking, because Sjogrens doesn't just attack the tear ducts and salivary glands, it DESTROYS them!

I sat in the office and listened to what my doctor had to say. My medications are to remain to same until I am referred to see the neurologists in Denver and then I left and headed out to my car to drive home. I was OK.

But halfway home I started crying.

Maybe I am not OK.

I am not OK.

Another New Year!

Where does the time go to? It seems like only months ago that we were all talking about the new millennium, the worries over changing computers to the year 2000 and here we are now, in 2011, and I have no idea how that happened so fast!

I often think of how much I have achieved since my mum died when I was 25. I have lived an entire life without her, but last night I was thinking about how much has happened since we were all anticipating the turn of the year in 2000!

Over the past ten years and in no particular order:

• Chuck and I bought a new home.
• We made two trips back to the UK.
• My eldest nephew had a daughter, my niece a son and my youngest nephew two girls.
• I got laid off from work 3 times!
• I had twins.
• I gained a degree in project management.
• I lobbied for, and succeeded in getting a park built in our neighborhood.
• I grew my hair long, cut it short and grew it long again.
• I gave up making mosaics and taught myself knitting instead.
• I made some great new friends.
• Got two staples in my head!
• Chuck and I filed for bankruptcy (ongoing).
• I sold my knitting items at craft shows with my friend Molly and helped my friend Jen, in a small way, start her own business.
• I have learned to give myself daily shots for my MS.
• I was diagnosed with numerous illnesses and ailments, but was able to give up taking all medications for my asthma which I have had since birth - must be the good Colorado air!
• I became a stay at home mum.
• I had an ovary removed and had knee surgery.
• I have gained weight (not good) and will be working on losing that this year.
• I fell in love with my Nintendo and my Roomba!
• I got the boys into a great school for their kindergarten year!
• I have 'lost' two good friends back to their home country of Australia

That's all that comes to mind right now, but it's certainly a lot! Isn't it amazing what you can pack into 10 years? I wonder what the next ten will bring? Hopefully better health for me, great schooling for the boys (they've already made a good start) and more friends and happy times! I don't know if we will get to stay in our house once the bankruptcy is complete, but as long as I can stay in this area I will be more than happy!

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.