Tuesday, March 30, 2010

Accupuncture anyone?

Well, yesterday was treatment number two using accupuncture. I'm actually being treated for a bad back and he's thrown stress in there as well. (Nice fella huh)?

Following the first treatment the pain relief lasted a few hours. Which, believe me, was bliss. The stress relief part made me very relaxed. Until I got home to the denial letter from Social Security (but that was already covered in a previous blog). This time, the pain relief lasted about the same, but the relaxation lasted into the evening. I go back tomorrow for another round.

I talked to the accupuncturist (is that a word?), about my MS. He said there are various things that can be done through accupuncture, in fact he has several MS patients that see him FOR their MS. For now, we're going to concentrate on my back and stress and possibly add MS to the mix at a later date.

So, if you can try it! It really doesn't hurt and it works without any medication side effects! What have you got to lose?

Thursday, March 25, 2010

Another drug added

Went to my Neurologist yesterday. Of course he is completely opposed to LDN and started me on Azathioprine. A chemo therapy agent. I'm on a Monday Weds, Fri. schedule so I tarted it last night. I felt a little nauseous  about 2 hours after I took it, but no biggy. Although today I have no desire to eat anything. Weird for me.

I'm still seeing the other Neurologist on the 2nd. It will be interesting to see what he says as he sounds much more progressive about MS than my current Neurologist. It's amazing the difference in the care we receive. It's the luck of the draw. You see a Neurologist and think they would be up on the latest treatments and supportive of them. Not so as I have discovered.

Just shows how important it is that WE keep up on all the latest information and become strong patient advocates for ourselves.

Tuesday, March 23, 2010

Dear God.......

Dear readers this is very different than the normal blogs I write. I hope I do not offend anyone and if I do.....I apologize.

Dear God,

As you know I received the notification that they denied my SS disability in the mail yesterday and the denial for CALPERS retirement 3 weeks ago. So where are You?  I have always managed to remain faithful and my beliefs strong. However, I feel You have left me alone in the world. A world that is spinning out of control. Again I ask, Where are You? I don't feel Your presence or Your love. I've had to hire an attorney for my retirement and now will have to do so for my ss. I have watched so many friends with MS struggle financially due to not being able to get help in a timely fashion. I paid into the system for 30 years and was denied being told , "Your arms still work". Where were You when that decision was made. I no longer believe that "The lord never gives you more than you can handle". Is there a lesson to be learned? Haven't I been through enough between the MS and the other afflictions You have allowed me to suffer? I have tried so hard to handle things with grace, but I can't any longer, I'm too angry. My question now is.....when is enough enough???

Sunday, March 21, 2010

Sunday Morning

I'm enjoying a quiet morning with coffee and a homemade scone. Was up at 5 this morning then went back to bade around 5:30 and slept till 8.  I'm tired today as I over did the last two days, but it's not train wreck fatigue, it's just the kind of tired I think anyone would have after two busy days.

Beginning week three on the LDN still not seeing improvement as far as my MS symptoms, but obviously my energy level is better. However, I'm going to have to learn how to manage the new energy levels so I don't over due. I don't know how far I can push anymore, which is a great problem to have.

I did something stupid yesterday. I was full of energy so my husband helped me out of my wheel chair onto a gardening stool so I could trim the bushes in the front yard. I did great for about 15 minutes then I fell backwards and hit a  small boulder we have in the front yard thankfully I didn't hit my head on it (maybe it would have knocked some sense into me). Didn't seriously hurt myself, but I won't be gardening anytime soon.

I see my Neurologist next week.....I just hope it's not a complete waste of time. Of course he doesn't know that I'm getting a second opinion on the second of April and looking to change Neurologists.

Friday, March 19, 2010

Amazing day

Wow, what a difference a day makes! Today was an AWESOME energy day. It's now 6 p.m. and normally I'm in my pajamas and ready for bed. NOT TODAY!

Today we had new carpet installed and I spent the morning putting all my china etc back in the china cabinet & hutch. Then we took my car to the body shop  (had a little fender bender yesterday, I'm fine), and then rental car place.

When I can home I decided to bake! I made home made scones and now have a pumpkin streusel cake baking in the oven! My husband made the comment that he was glad to have me "back". I can now tell that the LDN is working on my energy level.......I'm thrilled!

Thursday, March 18, 2010

LDN First Week

One of the big things I've noticed is my energy level increasing. I now get out of bed in the morning and feel rested instead of fatigued like I did before LDN. I'm also noticing that my energy level is lasting longer. I don't find myself needing a mid morning nap. I still require one in the afternoon but my energy level is better afterwards.

I haven't noticed any changes as far as my MS symptoms, but it's only been a week and a half.  Baby steps, I keep reminding myself. Baby steps.

Tuesday, March 16, 2010

Better and better.

I'm feeling better than I was yesterday, when it comes to energy. Yesterday I was just wiped out. Today I'm a bit tired, but no too bad.

I've been on the LDN for several days now. No side effects at all (Thank goodness). The biggest difference I've noticed is that's it's MUCH easier to get out of bed in the morning. I don't mean physically, but energy wise. Physically, I still struggle in the mornings. I'm hoping that over time that will improve.

I'm sitting in my chair today looking out the window at yet another absolutely beautiful spring day. Flowers are starting to bloom. Seeing all the new growth gives me a sense of rebirth and continuation. That no matter what struggles go on in life, life still continues. It's just a matter of taking those baby steps forward everyday.

Sunday, March 14, 2010

Beautiful spring day

It's a beautiful spring day here. I sitting in the den and watching the birds eat from the feeder. Some of my flowers are already up and blooming. It's still a bit too cool to sit outside and enjoy the weather.

Today, I'm tired. I'm talking train wreck fatigue tired. Likely related to Friday. Such is what stress does.
As a result I really can't comment as to the LDN. Still taking it :0)

Saturday, March 13, 2010

Let it snow

UGH...I wish the weather would make up it's mind. It's been changing, sometimes drastically from one day to the next. Which means the barametric pressure has also been changing, which in turn gives me fits with my MS. I'm having a terrible time with neuropathy in both legs and am pretty shaky.

On a positive note, while I'm tired related to the stress of yesterdays events, my energy level is good. It was easier to get out of bed this morning and I didn't find myself wanting to crawl back in after I got dressed! So, more baby steps with the LDN. I really haven't seen any other improvements besides energy improvements, but I remain optimistic. I can't wait to see what I feel like after being on it for a month or two!

Friday, March 12, 2010

LDN and today

Today wasn't a good real life good. It was a high stress day. Stress always wipes me out. I slept on the way home and took a nap when I got home. I'm exhausted. Fortunately, no LDN side effects and when I got up this morning I had even more energy than I did yesterday. :0) Now I'm looking forward to each day. Simply to see what improvements are there.

Thursday, March 11, 2010

Ahhhhaaaa...signs of improvement!

Last night I took dose 3 of LDN. This morning I actually feel like I have more energy. Not a whole lot, but enough so I can tell the difference! I'm going to have to remind myself to take it easy and not over do. It would be great if I felt more energy everyday. Even if it's in tiny increments, I don't care. As long as it continues to improve! One of the hardest MS symptoms for me to deal with has always been the fatigue. It would be great if it would ease up enough to let me get back to some of the activities I love and have missed!

Wednesday, March 10, 2010

LDN Day 2

So far no side effects and no changes. As I said prior, I'm a realist so I didn't expect an overnight miracle. Would I like one.....you betcha. However, I will happily settle for slow but steady progress and improvement.

So, I'm resting and watching the snow fall. Keeping my stress level under control to avoid any potential flare ups.

Tuesday, March 09, 2010

LDN Day 1

 Took first dose of LDN last night at bedtime. Don't feel any difference today. (I didn't expect to). No side effects. (I have insomnia already).  Baby steps, taking one day at a time. Amazing that a drug that can do so much good has no side effects outside insomnia. Will keep you posted!

Monday, March 08, 2010

LDN arrives

My first bottle of LDN arrived today, so my first dose will be this evening at bedtime. I am really excited to start this medication. No more shots!!! Whoooohoooo! I don't expect a miracle. I'm a realist. However, I'm very optimistic. Can't help but be with all the research reading I've done and the comments I've received. My PCP started me on 2mg for the first month. I'm glad to be starting out slowly and titrating up as we go. The hardest part for me is going to be staying awake until 9 p.m. to take the pill. MS fatigue has me in bed pretty early these days, but from what I've read my energy level should be the first thing I see an improvement in, and it should be fairly quickly. I'll keep you all posted!

Friday, March 05, 2010


I'm pretty excited. I'm going to be starting Low Dose Naltrexone next week. Just waiting for it to arrive from the pharmacy. I've heard such great things about it, as has my Primary Care Physician. I have changed Neurologists and start with my New Neurologist next week. My PCP has already spoken to my new Neuro about the L.D.N. and he's on board with it. Means no more injections!

The only side effect I've read about is insomnia. Well, since I already have insomnia I'm not to worried about it.  Anyone on LDN have any suggestions or comments about it?