Onward! Upward!

I had a busy day in San Francisco last Tuesday. The day started with Ron dropping me off at the lab at UCSF for fasting blood-work. Next, it was a mad dash over to the PT clinic for my weekly therapy session. After my therapist thoroughly wore me out, Ron and I raced back to 400 Parnassus Ave. to see my endocrinologist. Traveling to each appointment and making it on time was therapy in itself!

So here is the scoop - all my blood tests have been coming back within normal ranges! Dr. Gardner says that my adrenal glands are functioning normally so he is signing off on my case. Yay! One less doctor to visit!

I find that I am getting back to my usual activities and am feeling more stable. By that I mean that I'm not feeling like my legs are weak and wobbly anymore. My balance is pretty good and I don't worry about falling - not saying that I'm not being careful, though, I am VERY careful. I always hold onto the banister or railing when going up or down the stairs and I take the stairs instead of the escalator or elevator if I can.

My biggest complaints right now are joint pains and power surges (hot flashes!). I do wish that I had more energy and stamina, but all in all, I feel pretty good!

Turning the page....

It's a new day.

Last Thursday I saw my new rheumatologist. This is one of the doctors that took care of me when I was in the hospital. I have had several follow up appointments with doctors that saw me at the hospital when I was at my worst. Their reactions to seeing me walking on my own steam are very gratifying. I guess I look a little different now!

Anyway, my new and improved rheumatologist has a great philosophy - "first do no harm...." After a thorough examination, she explained to me that too often, any symptom that a lupus sufferer experiences isn't necessarily attributable to lupus. Unfortunately, up to now I have been prescribed lupus medications for aches and pains that aren't necessarily caused by my having lupus. She thinks that I may have Fibromyalgia.

"Fibromyalgia is a medically unexplained syndrome characterized by chronic widespread pain and a heightened and painful response to pressure (allodynia). Other core symptoms are debilitating fatigue, sleep disturbance, and joint stiffness."

Apparently, it is not uncommon for someone with lupus to also have fibromyalgia. It's amazing how much I still don't know about my illness and myself even though I've had this lupus diagnosis for 22 years. Instead of putting me on any different medications, Dr. G has prescribed exercise, a routine sleep schedule and yoga! She ordered quite a number of lab tests and we will go from there.

I am thrilled with all of my new doctors. It's certainly out of the way to have to have Ron drive me to San Francisco to see them since I'm not allowed to drive yet, but it's absolutely worth it to see these doctors. My new physicians are all connected to UCSF Medical Center and include general medicine, rheumatology, neurology, infectious disease and endocrinology specialties. When I get "back to normal" I will only be seeing my primary care physician and my rheumatologist and that will be ok with me.

Did I mention that both of these doctors are women? Cool, huh?

Research on Lupus

Here are some interesting graphics revealing research done on different aspects of having lupus and living with the disease. I found them interesting and decided to share.

http://knowlupus.info/lupusFull.html

http://www.knowlupus.info/career/lupusFull.html

http://knowlupus.info/gender/lupusFull.html

http://www.multivu.com/mnr/53462-roper-survey-reveals-lupus-communication-gap-silent-on-true-impact

Good-bye, Benlysta...

As much as I had hoped it would work for me, I had to come to the conclusion that Benlysta was not for me. It appears to be a viable option for many, I just don't happen to be one of them.

During my recent hospitalization, I learned a lot about myself. I found that I too willingly did everything my doctor said without questioning him. I was a terrible patient and did not advocate for myself. I should have educated myself more on the side effects of my various medications. Because I have serious concerns about the mistakes that my doctor made with my medications and care, I now have a new rheumatologist.

I have written about what happened to me in my other blog and you can find it here if you want to know the whole story -  http://queenlaurabee.blogspot.com/2012/09/only-human.html

A Long Week

Today was the end of my 9th week at home...this was by far the most difficult week I've had yet. I have tried to keep a stiff upper lip and a positive attitude, but I am so tired.

I saw my rheumatologist this week which was good. I went in with a long list of questions and concerns which he addressed one by one. The ongoing, relentless fatigue - he is scheduling me for a sleep study. He thinks it may be likely that I have sleep apnea. It wouldn't surprise me. I have always been a very shallow breather. So, this study may be scheduled by the end of next week. Let's hope. I may get to be one of those people who gets to wear one of those sexy CPAP machines to bed. I won't care as long as I GET SOME SLEEP! He would like to have the study done before starting me on B-12 shots or pills or anything else. He did adjust one of my medications and it does appear to be helping a bit.


I am also being scheduled to see an ophthalmologist. I have been having trouble with fuzzy vision - one of my medications is plaquenil (I have been taking this med for about 15 years without any problem). It may be time to try something different. He ordered more lab work and a thyroid panel. It's all about waiting for things to be scheduled and the results of the lab tests now.


In the meantime, I still have thrush. I finished a 2 week course of medication for it and I still have thrush. So today I started a new medication that will hopefully solve that problem. I have lost 25 pounds. I am eating healthy meals, but don't have much of an appetite these days. I'm sure this has something to do with my weakness. I still putter around the house, but I find it more difficult to do little things. I'm slower.

Don't get me wrong. I haven't given up. I'm just tired. It will be better next week - I'm sure of it!

4 month mark

Happy Anniversary to me! Today marks 4 months since I began my Benlysta journey! No balloons, no pinata, but is something to recognize - that's for certain!

So what do I want to tell you about my life today? Well, things are pretty quiet now. I spend the days at home alone....

                                                             

No, it's not as bad as all that! I'm just trying to keep things light! Actually, this alone time is ok. I am focusing on things that I haven't had time to do in a very long time and it's a good thing. I am starting to collect the books that I really want to read. Yesterday I finally received a book called How To Be Sick - A Buddhist-Inspired Guide for the Chronically Ill And Their Caregivers. It's a mouthful, huh? But it was recommended reading by the "Lupus Now - Lupus Foundation of America, Inc." I also have another book coming called Coping with Lupus. Knowledge is power, right?!

Otherwise, I putter around the house and put things in order - something I haven't had the time to do in years. This is something I do V - E - R - Y slowly. My fatigue limits much that I can do, so there are lots of rest periods in between. I do feel satisfied that I am able to do little things - small victories mean a lot to me.

I am able to cook and eat really healthy meals and Ron is benefiting from this as well. Our insides are much happier these days. Hopefully, when I am able to do a little more exercise, the outside will start to show it, too. I have dusted off the stationary bike and spend at least 5 minutes on it in the morning. Sometimes, another ride at the end of the day would be just too much. I am averaging 3 times down and back up the stairs everyday.

I have no joint pain, no chest pain, no pleurisy, no nausea. Remaining symptoms are FATIGUE, headache, dizziness, thrush, and some brain fog. I can only assume that the fog is coming from all the medication. I write EVERYTHING down so that I don't forget things.

So, all in all, things are ok. Don't worry about me. It's all a process. Ron and I and Dr. N are committed to see this through. I am ever optimistic and am waiting for Benlysta to turn this all around. After all, remember the part above where I say that I am not in pain!!!

Infusion #7 is on August 2nd...3 weeks from today!!!!

Here's something new....

This a photo of a song thrush...lovely, isn't it?

I list things here to keep track of my journey so as to keep myself clear about how and when and what things are happening to me. I don't wish to offend the people that happen to read this along the way. But here it is...something new....another inconvenience. Hmmmpf!

With all the medications I am on, it didn't surprise me that I am ALWAYS thirsty. I drink water all day long. My mouth has felt dry and food has tasted different on the whole. All of this I attributed to the medications. Bottom line, my mouth has felt funny. Therefore, I have been brushing and brushing and brushing my teeth. I will spare you the details, but now I have THRUSH. Not the lovely bird in the photo, but a not so lovely coating on my tongue. If it's not one thing, it's another..sigh...

A good friend gave me a link to MayoClinic.com and I was able to get some information to help me take care of it...thanks, again, Eileen! I will soon be right as rain, I hope. The information I read was all about "adults with compromised immune systems" - yup that's me. 

On another note, I am adding another supplement today...Biotin joins the team on a daily basis for my hair...couldn't hurt, right?

It takes a village....

What a team!

Butterfly

I have not been the ideal lupus patient over the years. I would go to the doctor during flare ups and took my medicine mostly on schedule, but I was never vigilant about sunscreen or hats or protective clothing and in the long run, this has obviously done me no good. I never really educated myself on lupus. Yes, I knew that I had it, but I tried to down play it, deny it, act like it wasn't that big a deal. I always knew that I would flare around the holidays starting around Halloween because there was just so much to do. By Christmas, I would be completely knocked out. I did not take care of myself.

Now I have been given no choice but to do so. Why did I wait until I turned 50 to do it? Well, part of it has to do with the fact that this new Benlysta treatment wasn't available until last year. But the other side of it is that I must not have thought enough of myself to do what was important. Bad habits. Eating terribly. Little to no exercise. What was I thinking?

So now I have all this "free" time. Resting. Recuperating. Reading. I am arming myself with books on nutrition...yes, me...nutrition...and I am eating better than I ever have before. It's amazing the difference it makes in the way I feel. I CRAVE everything green and juicy and leafy. I am loving salmon and organic chicken. I used to love greasy hamburgers and pizza and pulled pork sandwiches....that all sounds awful to me now. I haven't given up coffee, but I drink lots and lots of water...something that I never really did before.

I have been reading some good books on lupus. I am finally educating myself and will now be a much better patient and advocate for myself. When I have been on the Benlysta Buddies support group on Facebook, I am amazed by how knowledgeable the people are about our disease and how they have struggled and coped. I am ashamed and embarrassed by how little I know about myself. I am going to remedy that now.

The butterfly is the symbol for lupus because of the butterfly rash that many people have over their faces. I  have decided to embrace the symbol of the butterfly for my transformation. Up to now I was the careless caterpillar, eating, eating, eating, not caring what I was doing to myself, being out in the sun, not taking care of myself. That part of my life is over now. I consider myself in the chrysalis phase now. I am mending and evolving. It's a very good thing. I just need a little more time and then...

Infusion # 6

Big day. The infusion went off without a hitch. Getting premed of dexamethasone before Benlysta now and it does seem to help.

Home now and gonna settle in for a little nap.

Will report later.

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...

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...

Checking In...

It has been almost 3 weeks since my last infusion – it’s been quite a ride. I am almost afraid to say these things out loud for fear of jinxing it ( I know that I’ve said this before). However, I have to report that I woke up today feeling - dare I say it  – GOOD! No stiffness or pain in my joints and no nausea!! I am a bit jittery but my energy level feels higher than it has for quite a while.  8 out of 10 I would say!

The only negative is that I think I had a mood swing this morning. I lost my temper over something trivial and had a minor rant. My poor husband. Sometimes I wonder how he can stand me. I got over it pretty quickly and it was only a bit later that I realized that I might have had a mood swing – it’s one of the things I’ve been warned about as a possible side effect on this new medication. Hmmm. Hope it’s not part of the new normal.

The bottom line for today, though, is that at this moment – I feel pretty good!

Seasick? Yeah, a little...

It has been almost 2 weeks since infusion #3. Even though Dr. Neuwelt said that it might be June before I felt any of the positive effects of Benlysta, I do believe that I am starting to feel better. I say these things carefully because I am afraid to jinx my progress.

At this point, the most notable difference is that most of my joint pain is gone. My hands are still stiff on occasion, but the really awful pain I had in my hips is  mostly gone! The worst of the lupus symptoms that are still active right now are the fatigue and pleuritis.

The worst of the side effects from the Benlysta that I have to deal with at this point are nausea, anxiety and headaches. Ron is forever asking me how I am feeling, so this adds to my anxiety. I don't like worrying him, but I think I have to be honest. When I tell him how I really feel, I feel badly that I have to tell him that I'm not 100% yet. I told him that these side effects are my "new normal." I have underplayed my lupus symptoms for years because I don't like to worry him. He's not very patient with any illness - mine, his or our daughters'. He wants to be able to fix things....right NOW!

At any rate, I am looking forward to being in this next remission. I am going to stay positive about this medication because it does seem that it is starting to make a difference.

Confession

I overdid it.

I started to feel better and I got excited and I overdid it. I had an out of town trip to celebrate my birthday and I just wore myself out. We were only in Vegas for a little more than 48 hours, but there were lots of people to see, places to go and things to do. I have to do a better job about respecting my body when it tries to tell me that I have had enough.

A couple days after my third infusion, I had started feeling better. Now I'm not sure if it was just wishful thinking or if the Benlysta was/is starting to work. I would hate to think that I have to start from square 1 again.

My next infusion is not scheduled until May 7th....

Good news to report

 I am almost afraid to say it out loud because I have felt so crappy for so long, BUT I wanted to tell you that I woke up feeling a little odd because I wasn't hurting. My hands and feet were free from pain! I still had some shoulder stiffness and pain across my lower back, but in general, I felt better. So I showered and as I got ready for the day, I did experience a wave of nausea and slight headache. Nothing too bad, though. A little jittery on the way to work so I took an Ativan (this is ok because my husband drives me). The nurse had recommended that I let it dissolve under my tongue - it is effective for me this way. So I got to work and felt ok. I was somewhat buoyed by the outpouring of love when I got to my office - it was my birthday yesterday. There were decorations, flowers, cake, more flowers, cards and gifts for me so that certainly had a positive effect on my mood!

I did "hit the wall" at about 4:15 pm. I'm tired, but not exhausted yet. I hope this is truly the beginning of some good days ahead. I'm ready to be in remission again and promise to drink lots of water, rest and be more mindful of my body's messages to me about slowing down! 

Fingers crossed! Today, my lupus symptoms are present but not as active!

Infusion #3

First of all...Happy Birthday, Meredith!

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

I arrived at the doctor's office 10 minutes early and was whisked right back to the infusion area. There were two other patients there - one was almost finished and the other had started right before me. Before beginning the infusion I reflected on how I was feeling - fatigue level was 7 on a scale of 10 with 10 being unable to get out of bed. My hands were shaky and I was feeling anxious but my blood pressure was 113/79 (pretty good).

Although the veins in my right arm are harder to get, I continue to ask Helen to use my it because
 I am left handed and like to write during the infusion. At this point, the Benlysta wasn't dripping yet.

The magic potion

The infusion itself went well. I received Benadryl and Tylenol beforehand as I did the last couple times. The meds started dripping at 1:40 pm and I was out of the doctor's office and home by about 4 pm. I did doze during the treatment and when I woke up - NO NAUSEA! Yay!

When I got home I ate a little bit and then was so exhausted I went to bed. When I woke up I had a headache and powerful nausea. I also had my first bout of diarrhea - boo... The infusion nurse told me to put the Ativan tablet under my tongue and let it dissolve - she said that would be the quickest way to get the med into my system to deal with the nausea. I did it and it worked. It took about 15 minutes for the nausea to fade. I can only take it every 4 to 6 hours so I hope it lasts. It's making me sleepy so it will be early to bed for me tonight. Fortunately, I will not be going into the office tomorrow so I can continue to rest up.

Reflections on #3 - the infusion area of my doctor's office is in a high traffic area - at least 3 of the women walking back and forth were wearing high heels...click click click...hard to sleep through that. Also, several of the office personnel decided to have a conference right within earshot. And if that wasn't enough, the radio station was set on a jazz station - not my favorite. The lesson here - bring my ipod and earphones when I go back in May. Yes, that's right. I have completed the loading dose and now won't have to go back for infusion #4 until May 7th.

Also, something that surprised me - the RN that is administering the infusions seemed surprised that I am not feeling better yet. I told her that the doctor said it might be June before we know if it's working for me. Then when I was scheduling my next appointment, this woman also also asked me if I was feeling better yet. Maybe they lose track of what number infusion I'm on...it just struck me odd.

I have a big weekend ahead of me so I'm hoping that I will have the energy to get through it.

Tonight my joints are stiff and I am drowsy from the Ativan, but as always, I am hopeful.

Infusion Eve

Happy Easter & Passover

Used up most of my energy making lunch today. Well, truthfully, I think I used up some of today's energy yesterday. I did some shopping at the end of the day in search of goodies for my big birthday coming up and, of course,  did way too much. (I used all my spoons).

Anyway, I thought it might be useful to report how I have been feeling during the last week. I had late days at work til 6 pm or a little after every day but Thursday - that didn't help my energy level. Did have some nausea last week as well. I've also noticed that I am thirsty all the time. This could also be due to Sjogren's Syndrome. I don't think I've mentioned that before.  I am trying to drink more water and green tea. I have noticed some jittery-ness, as well. My hands have even been shaking. I noticed this while chopping vegetables - very weird feeling.

I saw my rheumatologist last Thursday and had a lot to tell him as well as questions to ask. I told him about the nausea so he prescribed Ativan. Hopefully, I won't need it. Questions I asked the doctor - How long before I feel better? Doc says that it may be June before we know if Benlysta is working for me. OK. How long do I stay on Benlysta if it doesn't seem to be working for me? He says that we should give it at least 6 months - maybe more as long as the side effects aren't too bad. I forgot to ask how long I will be on Benlysta after it starts working.

At the moment, I am tired, my hand are stiff and my hip joints are screaming at me. I will try to get a good night's rest before infusion #3 tomorrow. Wish me luck.

"How are you feeling?"

If I had a nickel for every time someone asked me this question...

Most of the time when I get asked this question, my answer is a reflex smile and "I'm fine and how are you?" even when it's the furthest thing from the truth. Sometimes someone will catch me off guard when I'm feeling really crappy. That happened last Thursday. I was sitting at my desk at the end of my work day trying very hard to get some work done in spite of screaming joint pain in my hips, an aching back and overwhelming fatigue. A colleague had quietly come through the front door and over to my office without warning.

"Laura, are you ok?" I could have started started to cry at that point, but caught myself. I did have to fess up that I was not doing so well at the moment. The concern in her voice was just too much.

I have taken more sick time than usual lately and most of my co-workers know what is up with me. I have never made a big secret of the fact that I have lupus. Honestly, when it comes to most aspects of my life, I am an open book. Otherwise, why would I blog, right? I probably over-share; in general, I talk too much. I know this about myself, but I have a heck of a hard time censoring myself and just shutting up.

So, here is the thing. I have a wonderful husband and 3 fantastic daughters. I have terrific friends and work with very caring people. Now when any of them ask me how I am feeling, I feel obligated to answer as honestly as possible. This requires quite a bit of reflection on my part, but unfortunately seems to be causing my loved ones some concern.  It's gratifying to know how much they care, but worrying them makes me feel guilty. This puts more pressure on me to feel better, so I can feel good about saying, "I'm fine!" and be telling the truth.

It's 5 days past my 2nd infusion. Today I am nauseated, woozy and my lupus symptoms are present and active.

C'mon, Benlysta, do your stuff! I want to feel better and I don't want to worry my loved ones anymore.

Infusion #2

The infusion area of my doctor's office

Nurse Helen prepares the infusion

My first infusion was on March 12th. I didn't feel like myself again until last Friday, March 23rd. The worst of the side effects for me so far have been the nausea and dizzyness. Really, it's not all that bad.

So today, I was off to see my primary care physician in the morning. He takes care of my other issues like hypertension. My blood pressure was ok  this morning - 132/84. Dr. Zhang usually reminds me that if I would just lose some weight I might not need so much blood pressure medication. Every time he says that, I nod and tell him, "Yes, I know." During this visit, he didn't say anything about my weight - I guess that he didn't want to waste his breath. I did tell him that I had started the new lupus medication, Benlysta. He's never heard of it. In his defense, he is not a rheumatologist.

Next it was over to Dr. Neuwelt's office for my 2nd infusion. Because I was so nauseated after the first infusion, I decided to have nothing but steamed white rice for lunch before I went. When I got to the doctor's office, I was weighed again -1 pound down from last time. Knowing that I am going be weighed every time is a bit of an incentive to watch what I eat. I was in the infusion area all by myself today. Other patients had their infusions earlier in the day and the only other person scheduled at 1 pm had cancelled. I had Nurse Helen's undivided attention.

Once again, I was give Tylenol and Benadryl as a pre-op to ward off possible allergic reactions to the drug. The benadryl seemed to make me even drowsier than last time - I actually fell asleep for about 30 minutes. When I woke up, I was nauseated again. Helen gave me Zofran - an anti-nausea medication given to people going through chemo. It took care of my nausea, but compounded my drowsiness. Helen wanted to watch me for a bit even after the medicine finished dripping. I convinced her that I was ok and she let me leave. My daughter picked me up and drove me home. I crawled up the stairs and slept for 2 1/2 hours. I was pretty groggy when I woke up.

I ate cream of wheat for dinner thinking that if I keep something bland in my stomach I can stay ahead of the nausea. Not quite. So I took some over the counter nausea medicine called Bonine. That in combination with my other meds are making me very sleepy. So, I will finish for tonight and let you know if anything changes. The 2nd infusion was NOT any worse than the first. My lupus symptoms are still present and active.

One day at a time.

Flares

OK. The photo is a bit dramatic and not representative of a lupus flare up. Sometimes it feels that way, though.

So, what brings on a flare up? With me it's usually a combination of things like stress, not enough sleep, stress, too much sun, stress, the holidays, and STRESS. Next thing I know, I'm having chest pains and/or shortness of breath, extreme fatigue and screaming joint pain in my hands, shoulders, hips and feet. I'm pretty fortunate that I don't have more than a couple flares every year.

What is worse than a flare? The drugs to treat it! Prednisone is really effective but the side effects make it my least favorite medication. The best way I can describe it is that it makes me feel like I have bugs crawling under my skin. It also makes me feel very jumpy and I have trouble sleeping when I am taking it. I'm very grateful that it's not my only alternative.

I have had a couple of depomedrol injections in the past. This is also a steroid but it doesn't make me skitterish like prednisone. The best treatment for me for is to treat the symptoms, rest and try to remove the stress from my life. Ha!

The biggest problem for me is that I sometimes "forget" that I have lupus and I run around acting like a normal person. It doesn't take long for my body to remind me that I am NOT normal. Still, it could be worse. I just have to try to slow down.

Diagnosis

I have probably been experiencing Lupus symptoms since I was 17 years old. I thought I was having a heart attack. Lucky for me, I was working at a hospital as a ward clerk at the time. I was having chest pains and asked the nurse I was working with if I was too young to have a heart attack. She sent me to the emergency room for an EKG. Verdict - my heart was fine. 

Over the years, I'd had bouts of fatigue and exhaustion, but chalked it up to being anemic. I was someone who LOVED basking in the sun, and figured that the butterfly shaped rash on my face was just part of my tan. It wasn't until 1990 when my twin babies were 2 years old, that I had to seriously consider there was something more than anemia going on with my body.

Part of my hesitation to go to the doctor was that I kept telling myself that I was overreacting to my symptoms. My mom was a nurse, so it was easy to start thinking that it could be something really serious, like cancer. So when I was feeling bad, I would just try to push through it. What finally made me seek a diagnosis was that besides the chest pains, joint pain and fatigue was that I was literally falling asleep in the middle of the day while taking care of my children. I would be reading the girls a story and would not be able to keep my eyes open.

Once I finally went to the doctor, it took 9 months to get a positive answer. Heart disease and rheumatoid arthritis were the first things ruled out.That was a big relief, but I started to get discouraged because my doctor couldn't tell me what was wrong. Was it chronic fatigue syndrome? No. Cancer? No. As odd as it might sound, by the time my doctor told me that I had SLE, it was a big relief. There was part of me that had started to think that maybe I was just a hypochondriac and making it all up! I actually had something wrong with me! Yay!

Uh, yay? Well, at least I wasn't crazy, right?

Here are some common symptoms of Lupus (which I got from the Lupus Foundation of America). I indicate with "yes" or "no" whether I have each particular symptom:

1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly - yes.
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches - no.
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse - yes.
4. Oral ulcers – sores appearing in the mouth - yes.
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed - a big yes!
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis) - yes.
7. Kidney disorder – persistent protein or cellular casts in the urine - no.
8. Neurological disorder – seizures or psychosis - no.
9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count) - yes.
10. Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies - I don't know.
11. Abnormal antinuclear antibody (ANA) - yes.
12. Hair loss - yes.

What I have is considered mild to moderate SLE and apparently that makes me the ideal candidate for the new medication, Benlysta.

Benlysta - Infusion #1

 

I feel like I'm starting in the middle of the story. Later I'll go back and fill you in on my history with SLE. At the moment, I feel compelled to start this particular blog because of the monumental step I am taking to feel better. Hopefully I will be conscientious about keeping track of my journey here.

On Monday, March 12th I received my first infusion of Benlysta in my doctor's office. The appointment was at 1 pm. The infusion area of my doctor's office consists of a narrow room with 5 recliners, 5 rolling IV poles and one very busy RN. Before we could start the meds, I had to be weighed - a necessary evil because the amount of Benlysta one is given depends on body weight. My vitals were taken as well - blood pressure - 135/85 and temp - 97.8. (Notice I didn't say how much I weigh!) Baseline vitals are necessary in case you start having a reaction to the meds. I was given pre-medication of Tylenol and Benadryl just in case I might have an allergic reaction - Tylenol for fever and Benadryl for itching, swelling or rashes. 

Since the ratio of patient to nurse was 5 to 1, it took awhile for her to start my IV and get the meds dripping. Apparently, Benlysta is kept refrigerated until it's time to mix it with the saline. Then it has to be at room temperature or it will clump. Once the IV was finally dripping, it only took an hour for the infusion. During the treatment, the only side effects that I experienced were drowsiness from the Benadryl, coldness in the infusion arm and mild nausea. My vitals were taken again to see if I had a fever - I did not.

Later that evening, I continued to experience nausea and some chills. Not knowing how I would feel the next day, I called my boss and we agreed that I should stay home. The day after the infusion, I still had nausea, dizziness and a slight headache. Not much appetite, either. The following day, I went back to work despite the nagging nausea that seemed to come in waves. One minute I would be ok, the next I would feel green and woozy. The nausea kept coming in waves up until Thursday evening. Friday morning I was back to normal.

Here are some quick impressions I have from the experience so far - 

     I took a backpack loaded with a small pillow, my laptop, a book, magazines and a journal. This was way too much. The nurse had a pillow for me. I type with 2 hands so I wasn't able to use my laptop - had to keep my IV arm straight. Next time I will take my journal and a magazine. The hour went by pretty quickly once the IV was started. 

     It's no fun being nauseated and dizzy, but I'm hoping that as my body adjusts, this will diminish.  Besides, it's much less than the lupus symptoms I deal with every day, right? My next infusion is on Monday, March 26th.