decision

I have decided NOT to have lupus anymore. It is just too inconvenient and a real pain in the @$$.

I have also decided to be young (35 or so) and incredibly wealthy (Oprah rich not Zuckerberg rich).

Finally, I hereby declare that there shall be no fat or calories in hamburgers, french fries or milkshakes...

...seems reasonable to me...

3 weeks after #4

I wish I could say that I am feeling great on this Memorial Day weekend. Unfortunately, I have had a new symptom crop up. In addition to the nausea, headache and low energy I have almost gotten used to, I have developed extreme dizziness. I spent the entire day yesterday in bed because every time I got up I was like a pin ball bouncing off the walls and furniture as I tried not to fall down.  Is this vertigo?

At the end of the day, I was chatting online with a friend and she asked if I had tried the Epley Maneuver. The what?! She gave me a couple of links to check out. Ron and I watched a couple of You Tube videos to see how to do this maneuver to help alleviate my dizziness. We watched until we felt comfortable enough to try it. Here's the link...

http://youtu.be/7ZgUx9G0uEs

We did it twice but I was still dizzy. It was late so I just went to bed. I woke up this morning and didn't feel quite so dizzy. I was actually able to go downstairs, make coffee and carry a cup back upstairs. That's progress, so thanks, Eileen! Now if I could just find a maneuver to help me get rid of the nausea and headache.

I am getting close to the 3 month mark since starting Benlysta. It has been a mixed blessing so far. Most days my joint pain is absent. Every once in a while I wake up feeling good and have moderate energy. Lately, however, the nausea seems to be increasing and I have daily headaches. I know it's too soon to give up but I have plenty to talk to Dr. Neuwelt about next time.

Onward and upward...

Oops...

The bad news is that no sooner did I declare how great I felt on Friday, than the nausea came back on Saturday. The good news is that a very sweet friend sent me a care package filled with all kinds of ginger goodies to help me deal with the nausea. (Thanks, Meredith!) I am just so eager to feel better that I think I am pushing too hard and being unrealistic about how quickly I should recover from an illness that I’ve had most of my life. I am so frustrated. My husband is frustrated because he can’t fix it. I’ve gotten to the point that I don’t want to tell him how I am feeling because he gets upset if I tell him that I’m nauseated again. I’d rather that he just not ask.

Don’t mind me – I just needed to vent. My next infusion is on June 7th.

So, how am I? I am fine…I AM FINE. That’s my story and I’m stickin’ to it!

good news

Yes, that's a thumbs up! I was going wait until Monday to post this because it will be the 2 week mark since my 4th infusion. However, I started feeling better yesterday, so I figured - Why wait? So here's the scoop - it's appears that the nausea has subsided for now! Woo hoo!

It's a big deal because when you feel crummy for a certain amount of time, you start to accept it as normal. I have done this many times over the years with various lupus symptoms. Now that Benlysta (I like to think of it as Magic Potion!) is taking away pain that I had long gotten used to, I have had to readjust my thinking. Granted, the side effects sometimes take some of the joy out of having less pain, but I think it's an ok trade off. Well, most of the time.

Yesterday, I woke up WITHOUT a headache, NO nausea and MORE energy! It was a pretty good day all things considered. I do tend to run out of steam at about 3 pm everyday, but considering that I am usually awake by 5:30 am, that's almost 8 hours of being "Alive, Alert, Awake, Enthusiastic - YEAH!"

At this moment, my lupus symptoms seem to be at bay and I am without the side effects of my magic potion. I wonder how long I should wait before saying "Remission" out loud.

1 week after #4

Status update...it's been 1 week since my 4th infusion. The nausea has subsided for the most part, but still can hit me out of the blue. I also have occasional headaches. My energy level is not back to where it was the week before #4. However, my joint pain is gone at the moment. No chest pain, either - that's pretty big! I wish I were more patient but I want all of it NOW NOW NOW! I'm just being honest about how I feel.

Helpful hints...for nausea - crystallized ginger, ginger ale and ginger snaps...for fatigue - SLEEP! Ha! I wish there was enough sleep out there for my fatigue.

I will check in again in a week. Think happy healing thoughts...think remission...

Infusion #4

It had been 4 weeks since my last infusion and yesterday I had Infusion #4. When I arrived at my doctor's office, there was one other patient in the infusion area and she seemed close to being finished with her treatment. I had had a good night's sleep the night before and had slept in a bit the morning.

For the last week or so I have been feeling pretty good, so I was worried about backsliding with another infusion. After the infusion was over....no nausea. I was fuzzy-headed and tired, but no nausea. I ate a very little dinner and went to bed...still no nausea.

Then I woke up this morning with a HORRIBLE headache (my eye sockets hurt) and guess what? Yes, you guessed it - I felt like I was gonna toss my cookies...all kinds of nausea. Ativan to the rescue. I was able to put in a full day at work, but it wasn't without discomfort and really low energy. Really wish I had stayed home.

Well, I'm curled up in bed now and resting. I've been trying to stay hydrated and drinking lots of water. Dinner was ginger snaps and ginger ale. I am going to be very mindful about how long the nausea lasts this time. Next infusion is scheduled for June 7th.

Lupus symptoms at the moment - hip joint pain, fatigue.
Benlysta side effects - nausea, headache

...but I'm feeling better...one day at a time...

Human Again

It's been 4 weeks since my last infusion and I feel GOOD. So right now when people ask how I am I can honestly say, "I'm fine!" It's great to feel like a productive normal human again.

Tomorrow I will have my fourth infusion of Benlysta. I am hoping that I won't have to deal with nausea this time, but honestly if it means that I can feel like I do right now - it's worth it! I will check in after my treatment tomorrow, but things are looking up! 

May is Lupus Awareness Month

Coincidentally, I went to see my rheumatologist today. It was time to go over my labs and to check in with him on how I am doing. I told him what I have been saying here. I've been having some good days, but have had a tendency to over do it.

Dr. Neuwelt is very encouraged by my lab work and the fact that I really do seem to be getting better. The side effects are manageable so far. He does want me to keep an eye on my mood swings, sleeplessness and nausea. I am scheduled to see him again in 8 weeks. If I continue to show this kind of progress, he is going to start weaning me off of the MTX (methotrexate). He hasn't said anything about how long I will have to stay on Benlysta. He reminded me that I need to get plenty of sleep, rest when I can, try to eliminate as much stress from my life as possible. He also reminded me that I need to keep using sunscreen and stay out of the sun as much as possible. I will never be able to play in the sun the way I did when I was little...that's just the way it is.

I have infusion #4 on Monday, May 7th. Better health is in sight!

One day at a time...