Saturday, February 27, 2010

Time for a change

I decided not to do the steroids for the Optic Neuritis. I figured if my Neurologist didn't think it was a big deal why should I? (Yes, I got a bit pissy about it).  In fact, I got so pissy about it that I've requested my records from my Neurologist and asked my Primary Car Physician to help me find another one. I intend to keep my appointment with him this coming Weds. Simply to hear what UCLA had to say, then I will no longer see him. He used to be the best Neurologist, then he had a stroke and now it's like he can't make a decision without consulting with someone else.

My Primary Care Physician and I actually had a conversation about LDN. I don't know a lot about it, but it means no more shots. A pill a day, I can live with that! So, I'm doing research about it. If anyone has any information about it or knows of a good website I would appreciate it if you would share it with me.

At this point my O.N. isn't any better. In fact I've lost a lot of my periphreal vision on the left. It will come back. Slowly.

I have to admit this case of Optic Neuritis left me more than a bit peeved with God. When is enough, enough? I was denied my retirement, still waiting on Social Security only to find out that THEY are waiting for my Neurologist to get my medical records in. They have requested them numerous times over the past 4 months apparently. I just can't seem to get a break, but I'm trying to hang in there. My Pastor gave me an assignment of reading Phillipians chapter 4. (As if giving up chocolate for Lent wasn't enough).  So, I'm reading it. I'm sure God will teach me something during my study.

Anyway, there's the latest update.

Monday, February 22, 2010

Where is the caring?


Once again I find myself back at ground zero. I went to my ophthalmologist on Friday and I once again have optic Neuritis. This time on the left.  So, I wheeled out of his office with eye drops and an appointment to see him in six weeks.

No biggy. I've been through this before. However, I noticed over the weekend that I was losing my peripheral vision on the left. OK. THAT is NOT GOOD. So, first thing this morning I called my ophthalmologist only to be told he wont be in until the afternoon. Great. So, I then pick up the phone and call my neurologist. Had to leave a message at the front desk. 

I went about my day and noticed that my left leg was getting weaker and I was dropping things. By this time it was afternoon and I hadn't heard from anyone. (I believe it was close to 3: 30 p.m.).  SO, I picked up the phone and called the ophthalmologist, only to be told he just got in and would be given the message. I then called my Neurologists office, only to be told they would once again take a message. HELLO does anyone care?!?!? 

As a last resort I called my primary care physician and told her nurse the symptoms. She stated she would talk to Dr. Hall immediately. Within 5 minutes my phone rang. It was my primary care physicians office informing me that they had put in an emergency authorization to the insurance company for IV steroids with home health. (YUCK). FINALLY, someone who gave a crud that I was losing my eye sight. 

About 10 minutes later, my phone rang, it was my neurologist's front office girl stating that he had spoken to UCLA and wants to see me March 3rd. OK great......but does he want to do anything about my eye? I asked. The response , "No".

I hung up the phone and cried. Called my husband and asked him what I should do. Do I call my primary care physician and cancel the steroids. His response was no and I should find another Neurologist. 

It is now 4 P.M. and I still have not heard from my ophthalmologist

MS and another year

Well, this is turning out to be the first big exacerbation of the year, and hopefully the last. I fell yesterday. Fortunately it wasn't a bad fall.  Today I'm very shaky and my hand aren't working right. Which means this blog will be pretty short. I'm using the drops for the Optic Neuritis faithfully twice a day. I've noticed a little bit of color loss in that eye, but I know it will come back.

I'm trying to keep my spirits up because I know that moping and pity parties make the MS stronger and doesn't do me any good.  I have to keep moving forward no matter what MS throws at me and I will. I'll keep taking things one moment at a time knowing that this too will pass and I'll come out the other side even stronger. Although at times I wonder just how strong I'm supposed to be? I never aspired to be Wonder Woman even as a small child.  Yet at times that exactly who I think I'm supposed to be.

So, I cling to my faith. Knowing that God has a reason for allowing this. That this experience is simply another thread in the tapestry of my life. HE knows what the finished tapestry will look like, I don't. It's as if I'm looking at the bottom of the tapestry and all I see are loose threads hanging down and a design that makes no sense. Yet, HE see the top and the beautiful picture it is becoming.

Friday, February 19, 2010

Here we go again.......

Went to my opthamologist today for a follow up on the optic neuritis I had before the holidays. Actually, this was a followup to the follow up. Anyway. My left eye had started bothering me on Monday. I didn't panic, I was hoping it was nothing. (Don't we ALWAYS hope it's nothing)?

Sure enough I have yet another case of Optic Neuritis, in the left eye. I'm on eye drops for now, but if this follows the path of all my other bouts of O.N. I'll be having a full blown exacerbation before long. Isn't MS grand? 

I find myself unable to be witty, when all I want to do is have a good cry.

Tuesday, February 16, 2010

Short Post

Today is a pretty good MS day. I think a big part of of the reason is because of my mindset. It's hard to feel sorry for yourself when the weather is gorgeous and your staring at a dozen beautiful red roses that your husband gave you for Valentines day :)

I am a bit shakey today, but I have those days every now and then as I'm sure most MSers do. So I only use plastic glasses and am more careful on those days.

One thing that I've noticed I'm doing again is self isolating. YUCK. It's such an easy trap to fall into when it's just hard to get around. So, tonight I'm going to make sure I go to the Shrove dinner at church. Get out and amoung friends. The weather is still perfect and I need the fellowship!

Monday, February 15, 2010

Appreciating the beauty of the day.........

We have had very unusual weather this winter here. (What area hasn't). However, instead of cold and snow we've had the opposite. Here it is February and we have highs in the low 60's! Where is our snow this year??? My bulbs think it's spring and have begun growing. Heck most of them are 3 inches above ground already! I'm afraid my Magnolia tree will also think it's spring and start blooming. If that happens I know we'll have a hard freeze and they will die :(

Although for all my worry over my garden I am appreciating the beauty I see. Snow still caps the mountains all around me, yet I can look down and see the first Verbena flowers of the year already blooming in a vibrant red in the garden. My day lily's are up and I'm waiting for their first blooms to appear.

My garden reminds me of my journey with MS. It's all about perspective. I can bemoan the fact that my flowers are already starting to bloom or hush up and simply enjoy their beauty. I can also bemoan the fact that I am required to use a cane to walk at all times or hush up and be thankful I CAN walk.

So today, I'm not going to worry about what tomorrow will bring. I'm simply going to enjoy the beauty of the day.

Saturday, February 13, 2010

Shuddup already

Have you ever just wanted to tell everyone just to shut up about your MS?! I've been feeling that way for awhile, hence the slow down on my blogging. (Of course I do blog weekly both video and written for howIfightms.com). I try and live my life NOT being focused on my MS which is pretty hard to do when your having a tough time getting around. However, it becomes impossible when the first sentence out of everyone's mouth when they see you is "how are you feeling".  Is that how they always great their non-MS friends? I know...they ask because they care. Maybe I'm just being pissy or too sensitive, but how about a greeting that is a simple, "It's good to see you". Let ME bring up the MS if I want too, or just let me forget about it and enjoy the company......