Don't come here expecting to feel sorry for me - I don't.

I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.

I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!

If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!

Thursday, January 26, 2012

New Day, New Keyboard

That’s how my day started, switching out the external keyboard I use at home with my laptop.

I usually drink a big mug of turmeric tea about every other day. Turmeric has wonderful anti-inflammatory qualities and it’s a homeopathic treatment for MS symptoms. I make the tea with 2 cups of near boiling water, ½ tablespoon of turmeric, a packet of Real Lemon and 2 packets of Splenda. It’s an acquired taste, but it does grow on you. I actually like the combination of bitter, sweet and citrus. Last night I discovered that I’m out of Real Lemon and grabbed a packet from the Real Lime box. I think I like the lime better! Anyway, I pour the hot water on top of the dry ingredients and let it steep.

My husband brought my tea in from the kitchen. It’s big cup and I can’t carry it in myself without spilling it. He had the tray I usually put on the kitchen chair to push it over to the dining room table. Cool thing is the time it took him to get a break from his game was just enough to steep it perfectly! If it’s not steeped enough the turmeric doesn’t blend in and it’s gritty. I don’t really know how much it actually does for my symptoms, but it relaxes me and that does help any pain fade. Maybe that’s where the notion that it quelled MS symptoms came from. The official word from my Neurologist is that there aren’t any homeopathic cures that have shown any significant improvements in symptoms. I firmly believe that emotional and psychological factors play an important role in ANY healing and anything that helps your brain work on healing is a good addition to medications and physical therapy. And also, I like it. I first tried the tea last spring and the flavor makes me feel like spring.

Anyway, the keyboard. Last night my husband got home a little later than usual and as dinner was ending, I was feeling tired. I’d managed to mop a good bit of the floor in the room I’m putting a new bookshelf in so I can place the shelf after I assemble it. I mop sitting in a chair. It looks silly, but the floor is clean and I did it on my own without falling! And there was no immediate pain or even fatigue. But I was tired and a little clumsy earlier than usual last night. The floor looks great and it was totally worth it!

My hands were weak and slippery-dry from the floor cleaner. I sat in front of the keyboard holding the last few swallows of my tea, when the cup slipped from my hands. I caught it, but not before it sloshed a few drops of tea on the table, a little under the laptop, a little on the extended keyboard! Everything seemed like it was working fine after I finished drying up, but this morning, no space bar! Fortunately the laptop is working fine and I had a backup keyboard.

So, try the tea! It’s got a complex but soothing flavor. Just don’t hover it over your keyboard!

Do you have any homeopathic things you do to accompany your medical treatments for MS? Please share!

Sunday, January 8, 2012

Nothing Is Too Small to Talk About

Sometimes I get a weird MS thing where just as I’m falling asleep I “hear” a loud noise that wakes me. I’ve spoken to other people with MS who have the same thing happen, so it’s not an odd thing that’s exclusively me.

It started last summer when as I was falling into sleep I heard the loud sound of a cat screeching outside the open window. My eyes shot open and I shook my husband asking if he’d heard it. Of course had he heard it, he’d be awake. It was very loud. But as I sat up in bed the sound from outside was still, not at all like there had been any kind of ruckus from a cat. I even had my husband check on our cats to make sure they were okay. The sound had been that real. Our cats were okay and I heard nothing else from outside. I decided it must have been a very vivid dream, nightmare, and I was actually further asleep than I thought.

A few weeks later the same thing happened, but this time it was the very loud sound of a large car screeching, braking, on what sounded like our street, right in front of our house. This time my husband was still downstairs on his computer and there was no motion like anything that loud had happened that close.

It happened again, sounding like a drop of water amplified through concert speakers. It started happening more frequently, about 2 or 3 times a week! One night just before I started my disease modifying medication, I awoke after hearing a gunshot that seemed like it went off right next to my ear. It was becoming more and more disturbing. I was sure it had something to do with the MS but I wasn’t sure if it was a new symptom or just powerful suggestions my mind was acting out from fear. All the sounds that awakened me were loud and negative and gave me a frightened awakening.

I talked to some other MS patients in a discussion group I take part in. Roughly half have experienced the same thing. It was actually a comfort to all of us to know we weren’t alone!

Discussion and communication is so important in every aspect of our lives including and perhaps especially concerning MS. There is no such thing as “a little thing” or something not important enough to tell your doctor. If you are the only patient your neurologist has who is experiencing something, tell them anyway. If they speak with a colleague who mentions that 3 patients have mentioned a symptom and it’s the same one, well, now that’s 4, you’re not alone. Maybe that one “little thing” is a small piece that completes a section of a researcher’s puzzle. Doctors and Researchers need to know what's going on with us to do their work effectively. They don't have that information if we don't tell them! Maybe what seems like nothing is the key to something huge.Don’t take the chance of not mentioning it to your doctor!

I’ll be going back in to see my neurologist next month and I’m going to mention the "dream noises” then. By the way, since starting my disease modifying drugs, the dream noises still happen, but much less frequently and they are slightly quieter, happy, noises. Makes me think it might be a little bit me and a little bit symptom since I’m not alone. It’s certainly worth talking about.

Have you or someone you know with MS experienced "dream noises?" Share your story and be sure to tell your doctor!

Friday, January 6, 2012

Welcme 2012

Happy New Year! I hope everyone had a safe and fun celebration last week. My husband was working until 10, so I had a quiet nigh scrapbooking until he got home and we watched Lady Gaga and the ball drop in New York. I’ve had rowdier New Year’s Eves, but after a very active Christmas, I liked the quiet night.

For me 2011 was a year of challenges and changes. My MS diagnosis was in June, but the first half of the year was the increasing inability to walk or even balance and fatigue with 3 MRIs, a CT scan and countless draws for blood work. After diagnosis there was an EEG and a couple EKGs to test me for suitable medications.

I will mention a couple things about treatments. First, read all the information you can about any medication before you take it. Have a really good idea of what the drug is supposed to do for you and what side effects might happen before you take the first dose. You have to work with your doctor and your doctor has to work with you to find the treatments that are right for you. MS is a customized disease. It’s not the same for everyone, so you have to find the right treatments and the right doctor for you. I have a neurologist, along with his team, that I am so happy with. They all listen and ask questions when I tell them what is going on with my situation. I also know that my questions will be answered. When I was concerned about what I thought might be a side effect, my neurologist called me himself to ask and answer questions.

I’m taking oral medications, Ampyra and Gilenya. As I understand it, they are just starting clinical trials of Gilenya for Primary Progressive MS, but my doctor said I had some swelling like there is with RRMS in my MRIs and we tried it. I hope and pray that the trials show similar results in other PPMS patients as I’ve had! The incredible fatigue I’d felt all year was gone by the end of the first week on Gilenya. I got to truly enjoy the holidays in 2011 because I had my old energy level back.

Therapy exercises seem to be helping me strengthen and get my leg muscles helping me balance better. I still use a walker for short distances, like a stop at the drugstore or the bank, and a wheelchair for longer distances or recreational outings, like sporting events or going out to dinner. I have a really great support system at home. My husband and I communicate well in understanding the areas where I need help and the areas where I psychologically need to at least be able to try to do things on my own.

I really suppose I could write a book about my personal MS situation, so I could easily write one very long post introducing myself, but I welcome any questions you have about me and my MS, because everyone’s is different, and I’ll answer them. Right now I’m working on ways to make our 1950’s Colonial more user-friendly for me. I figure there will be things we do in the next house we live in ahead of time, but for now, I just need it to be a little easier.

In the next couple of months I’ll be posting photos and telling about things I use to make life easier and decisions I’ve made. It still comes down to an easy choice. This disease is not fatal but it will be with me the rest of my life. I can be frustrated and depressed all the time or I can adapt and enjoy my world. It’s not that I never get frustrated, but I choose to shake off the frustration and be happy.