Better

Sleep is helping. Meds are allowing me to sleep at least 5 hours uninterrupted at night. Yay!

Down and back up the stairs at least 4 times a day!

Puttering around the house doing light cleaning and also doing some light exercises. 

Eating nutritious meals.

Not depressed, but a little lonely during the day.

When Ron gets home today, he will be off from work for a week! Great timing!

This time last year, we were about to take our godson to Disneyland...what a difference a year can make.

Help is on the way!

This is the generic form of Ambien. All I can say at the moment is YAY! I took this little pill last night at 10 pm and didn't wake up until 6:30 am. I can't remember how long it's been since I have had that much uninterrupted sleep. Whew....it's about time.

Otherwise, I went to see the doctor yesterday. He was late - as usual, but I was able to talk to the office staff - set up subsequent appointments and such - nice ladies - great staff. So, when the doctor got to me, he was surprised to see that I was using a cane to help me get around. Once we sat down in his office, he asked me if I was ready to suspend treatment. NO!!!!! Of course, not! He said that very often, these types of biologic medications can cause the total fatigue that I am now experiencing. But they do reverse. I shared the fact that I have a distant family member that is taking Benlysta and who did experience just this kind of fatigue. She is doing very well on the infusions now and it is the ONLY medication she taking for lupus at this time in her life. 

So, Dr. N. has decided NOT to change any of my medications at this time - only to add Ambien so that I can sleep. He thinks that will make a great difference in the fatigue issue. The dizziness - well, we will just have to wait and see. 

My next infusion is on Monday, July 2nd. Read for a fill-up, Benlysta!

a long day...

In the interest of testing myself to see how much endurance I have, Ron and I decided to have a "normal" Saturday, yesterday. It was slow-going for me as I got ready, but we did finally leave the house about 10:30 am.

Here's what we did -

10:30   drove to San Francisco
11:15   picked up Mandi at her apartment
12:00   ate lunch at Crepes on Cole
1:00   took Mandi to Office Depot for school supplies
2:00   back to Mandi's apartment to take her things - up 3 flights of stairs - rested for about an hour
    before we left - Mandi gave me exercises to do for my weakening legs
3:15   drove back to the East Bay and to Walgreen's to buy me a cane (yes, a cane - for support)
5:30   movie
8:30   dinner
9:30   home in bed...aching legs, and exhausted

The upside of all this, however, is that I took my meds and got an almost a normal nights sleep!

Onward and upward!

sleep

Hello. My name is Laura. I am a barely functioning INSOMNIAC.

You would think that as many medications I am on these days, sleep would be the least of my worries. HA! Not so. This will definitely be on my list of things to chat with my doctor about this coming Tuesday! I need a new pill, but at this point I will also consider a sledgehammer.

During the course of the day, I have 2 little 45 minute naps - sometimes. I am awake until about 10:00 or 10:30 pm then usually wake up at 1:30 am with a headache. Take something for the headache and another pill to help me go back to sleep. I am generally wide awake then until about 3:30 am. I fall back to sleep until 6:30 am and we start all over again.

What I wouldn't give for 7 or 8 hours of uninterrupted sleep...any ideas? I'm starting to get desperate. 

hair today...

...gone tomorrow...

What a cruel joke! Those who know me know that I have had a hate/hate relationship with my hair for my entire life. Then lupus comes along and makes it fall out! I hate my hair, so no big deal, right?! Well, I guess when it comes down to it, I'd much rather have hair than bald patches on my scalp.

The good news is that it seems not to be falling out so quickly right now. Maybe the magic potion is having a good effect there. Just when I was was starting to think about severe haircuts and wigs and maybe even a tattooed scalp....

I don't know if it's the meds I'm on or just the fact that I'm getting a little stir crazy, but about 20 minutes ago, I grabbed some scissors and a comb and whacked at my hair. We shall see what it looks like after the shower and shampoo. Besides, I have been collecting hats - I can match any outfit I have at the moment. I haven't been needing them in the comfort of my own house, anyway. At any rate, I have decided that this is at least the perfect time to let it go GRAY - no more hair color. What's the point!?

That's my story and I'm sticking to it...for now....

Could be worse!

i love my bed or being home from work - the good, the bad and the ugly

My nest

This is the middle of my 4th week in bed. I suppose it could be worse. I have to keep emphasizing that I am not in any pain - so that's a very good thing.

Besides that, I have a very lovely place to hang out. My bed i.e. my nest is sooo incredibly comfortable that it is no burden to be in it. I do make it a point to get out of it and move around the house...gotta test my energy level and do little chores along the way.

Here is my status as of today (tomorrow is 2 weeks post infusion #5)
Joint Pain - no
Chest Pain/Pleurisy - No
Headaches - Yes
Dizzy/Vertigo - Yes
Fatigue - Totally

The upside of being down for so long is interesting. There is no doubt that I am getting rested. It's just that any exertion on my my part exhausts me. My sleep schedule is way off as well. I often wake up at 3 in the morning and then I am wide awake after that. I read, I write - journaling everything from when I take my meds to what I eat...boring stuff but it I think it's helpful for me to keep track of all this somehow.
 
I am surprised to find that I am not watching much TV. It's very peaceful at my house during the day and I  am listening to music more than anything else. I should indulge in some more documentaries, though. I am also talking to my mom - who loves to worry, but I keep reassuring her there is no need to worry. I have to connected to family I didn't know I had. Have been talking to a couple of favorite aunties...
 
The downside of being down away from work and people is that it does begin to get a bit lonely. I feel disconnected from my work buddies and what they are going through. Guilt about what they are having to do in my absence bothers me as well. Not that they aren't doing a great job! I know that everything is running smoothly...great program, great co-workers...great!

As I said, it could be worse. I am not writhing in pain. I am just a bump on a log or a Queen Bee in my lovely nest.

There is an educational program about Benlysta tonight in Emeryville at 6 pm....saving my spoons up today and we'll see if I Ron and I can make it there.

yes that's me and I am alive!

real

In the interest of "keeping it real" I'm just going to tell you "like it is."

At the moment, I am leading a mostly pain-free but completely umphf-less existence. I have no energy - plain and simple.

Yesterday, we went out. It took me all morning to get ready to go. I bathed, dressed and actually applied some makeup. Not my best effort, but was presentable. Fixing my hair was out of the question, so I opted for a hat - it worked. I needed to get out of the house - but it was exhausting. It's also makes me anxious to be looking for a place to sit so that my shaky legs don't give out and I end up in a crumpled mess on the floor. I haven't fallen yet, but I'm afraid I might.

When I move around the house right now there's a lot of stopping and resting in between little chores. I am able to get down and back up the stairs 3 times during the course of the day. Today I will try for 4 trips down and back up the stairs.

If I didn't truly believe that there is a light at the end of the tunnel, I wouldn't be doing this. I found out recently that I have a 3rd cousin with lupus who is also on Benlysta. She and I have never met but our stories are so similar. I have recently been in contact with her by email and have gotten some very encouraging support from her.

She started having infusions in October of last year. She also experienced this total fatigue that I find myself in. However, at the 5 month mark of her process she said that she felt "good" and that at the 7 month mark where she finds herself now, she feels "GREAT!" She is encouraging me to hang in there - eat healthier - nutrition seems to be a big factor here, journal everything that I do and let the Benlysta fill me back up. I am at just the 3 month mark now so I need to be a little more patient.

There are GOOD and GREAT days ahead! I'm getting ready....

1 week after #5 or "Vertigo - the amusement ride!"

So, the vertigo has not abated. At times I can be sitting still in a chair or in bed and I KNOW I'm not moving, but the world seems to tilt and then I have to hold onto something. When I sit up in bed I have to wait until my head stops spinning  - such a strange sensation. To deal with the vertigo and nausea, more meds.

...sigh...

Along with the vertigo, I have extreme fatigue as well. How to describe it? Hmmmm...well, if I were in prime condition, able to run marathons - I would call that "ENERGY LEVEL 10" - EL-10 for short. To be able to go to work and do what I need to do there I need at least EL-6 preferably 7. Right now I feel like I am at EL-2 or 3. I can get to and from the bathroom when I need to and I've even been able to shower every day. Fixing my hair and applying make up are out of the question because of the effort it takes me to lift my arms. To brush my teeth I lean on the sink and let the Sonic care toothbrush do most the work.

Good things to think about today - I am in no pain! That is worth sooo very much!
So far today - no nausea or headache! Bonus - I still don't have much of an appetite, either.

One day at a time...

spoons

I used up my spoons early today. I may have used some of today's spoons last evening by actually escaping the house for a couple hours to attend my godson's preschool graduation. I had to go.

My friend Meredith introduced me to "The Spoon Theory" by Christine Miserandino a couple months ago around the time I started my Benlysta adventure. Even though I was diagnosed with lupus in 1990, I'd had limited contact with other lupus sufferers and I am just now starting to learn the lingo. Some lupus patients call themselves "lupies" or "spoonies" and their doctors, the rheumatologists are "rheumies." Finding these things out was like learning the secret handshake to a club I didn't know existed.

At the end of one of our first Facebook chats, Meredith wished me "Love, Hugs and Spoons!" Spoons? I was embarrassed to ask, but really wanted to know. Meredith sent me this link...

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

It's a long essay and worth the read, but if you don't have time, I will try a to condense it for you. The author, Christine, is a lupus patient. In her essay she tells the story of how she was finally able to describe what it feels like to have lupus to her college roommate. While sitting in dining hall of their dorm, Christine gathered spoons and handed them to her roommate and basically said "Here. You have lupus." She told her that as a lupus sufferer she started every day with a limited number of spoons (energy) and it was up to her to choose how to spend them. Christine talked her roommate through a normal day and took a spoon from her for each significant imagined expenditure of energy. The roommate had been up for the game, played along but was disconcerted to find that she'd run out of spoons well before the end of the "day." Finally, the roommate began to understand.

I had tried to explain what having active lupus feels like by using the analogy of starting the day with a full pitcher of water. Depending on what needed to be done, I would have to pour out water in accordance to the weight of the task. The trick was always how to get to the end of the day with some water left in the pitcher. High stress situations, work, holidays - anything out of the norm would cause me to pour the water out more quickly. I thought this was a fairly clever way to describe lupus, but honestly, I like the spoon theory much better. Somehow it has a better visual.

So I thank Christine for coming up with and writing "The Spoon Theory" and I thank my friend Meredith for passing it along to me. I pass it along to you so that you understand when I tell you that I have only two spoons left to get to the end of the day, that's pretty serious. I find that at times, I can "borrow" tomorrow's spoons when I have to, but it just makes it harder to get by the next day.

I still have hope that Benlysta will lead me to full pitchers of water and unlimited bouquets of spoons. It's just a matter of getting through this adjustment period and onto my next remission. I hope have the patience and strength to get there.

Infusion #5

Because of the new problems I have been having with side effects recently, Dr. Neuwelt added a new pre-medication. So before the Benlysta today, along with my customary Benadryl and Tylenol, I also received IV Dexamethasone. This was to deal with the vertigo, nausea and headaches that intensified after  infusion #4. I am also having muscle spasms in my arms - not painful - just annoying.

Things went well during the infusion. I met a different nurse - Chris - who is a GEM. She is my ideal for what a nurse should be - skilled and efficient but also compassionate and warm. She is also funny. All this helped to reassure me today. The other nurse has been just fine, but I felt better about the atmosphere in general today. I met two other patients and we swapped stories while receiving our magic potions. I am hoping to re-schedule my future treatments to Thursdays. There's no reason I can't try to enjoy the experience a bit more, right?

Even if it turns out that Benlysta doesn't work for me in the long run, it has absolutely given me something I never expected. Throughout this experience, I have gained a new community. Through the "Benlysta Buddies" and "Lupus Disease Sucks" groups on Facebook, I have "met" even if only in a virtual way, new friends that understand what I'm going through. These are people with a wealth of wisdom, experience, love and support. I now have confidants and cheerleaders who have been where I am and who are happy to listen to my woes and to share their stories with me. If you are reading this, Jeremy, Ashley and especially my dearest Meredith, I hope you know I am talking about you. Thank you from the bottom of my heart!

It's been a very long day so I think I'm gonna sign off. I think the Dexamethasone may be working, but I'm still a little too fuzzy-brained at the moment to say for certain. There was a new wrinkle in my evening...I started feeling nauseous again so I picked up the bottle of oral Dexamethasone and opened it - I got distracted by a phone call and now I don't know if I took a pill or not...sigh...I think a good night's sleep is what's in order now.

alive, alert, awake, enthusiastic? well...

I have been effectively sidelined after experiencing a new side effect. Vertigo is not something I was expecting after having had 4 infusions. I had slight dizziness after #2 but nothing like what I am going through now. Nausea, fatigue and headaches have been the main issues with me, but I had been pushing through them. That's what I'm supposed to do, right?

Anyway, after being sent home from the office a week ago, I have only been back one afternoon just to work on time sheets. I have been staying in touch by phone and email and trying to get over feeling guilty for not being there. Guilt is one of those things that I have a very hard time shedding. That and a feeling that I need to convince people that I am sick, because I just look tired.

So here's the scoreboard on how I'm doing since starting Benlysta -

Lupus symptoms as of today

Joint pain - No! - Seems resolved/virtually gone

Chest pain/shortness of breath - none!

Fatigue - Yes - sometimes more ~ sometimes less 

Headaches - Yes - almost daily - could be attributed to Benlysta

Facial rash - Yes - as prominent as I can ever remember - harder to hide with make up

Hair loss - Hmmm - less fall out, but still sparse on crown - no regrowth yet

Mouth ulcers - No! not for a while

Sun sensitivity - Of course! that will never change

Benlysta side effects

Vertigo/dizzines - Yes - daily since May 28th

Nausea - Yes - daily

Fatigue/weakness - Yes, but is it lupus or Benlysta?

Insomnia - sometimes which contributes to fatigue

Depression - maybe

Other side effects which can be attributed to meds given to deal with Benlysta side effects
(Ativan, Meclizine, Zofran, Decadron)

Drowsiness - Boy howdy!

Slowed Cognition - foggy headed, word finding issues - very disconcerting

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Due to scheduling problems at my doctor's office, I will not be receiving infusion #5 until Thursday the 7th. It is now about the magic 3 month mark since I started Benlysta. Doctor would like me to stay on it for at least 6 months to get a real sense for whether it's working for me. I have to start weighing the benefits vs. the side effects, though. Especially if I am too dizzy, nauseous and fatigued to work. Definitely bears some serious contemplation...