What exactly is going on here

I am getting ready to begin a series of treatments again along with a low dose chemo. I am constantly asked questions about why and what this means.... So I'm typing this blog to be informative and hopefully helpful to my many friends and family.  

The first is the infusion treatment Benlysta. It  is a prescription medication used to treat adults with active systemic lupus erythematosus (SLE or lupus) who are receiving other lupus medicines.

BENLYSTA can cause serious side effects. Some of these side effects may cause death. It is not known if BENLYSTA causes these serious side effects. Symptoms can include fever, chills, pain or burning with urination, urinating often, bloody diarrhea, or coughing up mucus.

Heart Problems: Symptoms can include chest discomfort or pain, shortness of breath, cold sweats, nausea, dizziness, or discomfort in other areas of the upper body.

Mental health problems and suicide: Symptoms can include thoughts of suicide or dying, attempt to commit suicide, trouble sleeping (insomnia), new or worse anxiety, new or worse depression, acting on dangerous impulses, other unusual changes in your behavior or mood, or thoughts of hurting yourself or others.

Sound like fun yet??! Lol

Next is questions on chemo....

It surprises a lot of people that I am on low dose chemo when I don't have cancer, when I actually have lupus, so here is some research I did to help explain.

But lupus isn’t cancer, right?

            No, lupus is not cancer. Lupus can predispose a person to develop certain cancers, but it is not itself any form of cancer. So why do we take chemo? The answer is that we basically take it for the side-effects. When a cancer patient takes chemo, one of the side-effects of the treatment is that (s)he becomes very immunocompromised. The chemo “accidentally” kills cells in the immune system while killing cancer cells; it’s a form of chemical friendly fire. This is why cancer patients tend to be very careful about crowds, and will wear face-masks if necessary to avoid infections. Lupus patients, on the other hand, need our immune systems to be shut down, since the immune system is responsible for our disease.

How does chemo help treat lupus symptoms?

            What many people don’t realize is that chemo drugs generally don’t target any specific kind of cell. There are certainly exceptions, but most of the time the chemo is a wide-spectrum poison that kills any rapidly dividing/growing cells. Since many cancers grow much more quickly than most healthy tissue in the body,  this strategy can be highly successful in treating cancer. Unfortunately, cancerous cells aren’t the only quick-growing cells in the body, and other quickly growing cells will also be killed by chemo. The idea is to give a patient enough chemo to kill cancerous cells, but not so much that it kills the patient. As it turns out, the cells in the immune system are some of the most quickly growing cells in the body, so they are hit hard by chemo drugs. So for those of us whose immune systems are overactive, chemo can help kill off enough immune cells to help improve our

symptoms.

Do lupus patients on chemo have the same side-effects?

            This really varies from person to person. In general, lupus patients take a lower dose of a chemo drug than a cancer patient would, so the side-effects tend to be less severe. That being said, yes, most of us experience some degree of nausea, headaches, mouth sores and often hair loss. The symptoms are there, but they aren’t (again, generally) as severe. Side-effects from chemo occur because other rapidly-dividing cells, such as the cells that line the mouth and GI tract, are killed. Chemo is not a very specific tool, which is why the approval of new, more targeted, lupus drugs is so exciting. (Depends on the dose mine is on the high end so my symptoms are pretty severe)

How long are lupus patients on chemo?

            Cancer patients are often given a defined schedule of chemo treatments. They may, for example, have to receive an infusion of chemo once every other week for two months. Lupus patients, on the other hand, very rarely have a defined schedule. We don’t get told to come in for two months. It is not uncommon for a patient to stay on a particular chemo drug until the body builds up resistance to it. So we don’t know how long we will be on chemo, but it’s likely to be months or even years. This is only possible because the dose given to lupus patients is significantly less than that given to cancer patients.

Immunosuppressives/Cytotoxic Drugs (Chemotherapy) -

 Drugs that suppress the body's immune response are a common treatment for life threatening Lupus.  These drugs are also known as cytotoxic drugs or chemotherapy.  Cytoxic means "toxic to cells".  Cytotoxic drugs are just that, they destroy cells.  The medications listed below specifically destroy immune system cells.  Because they don't only destroy the "bad" cells, these medications can come with serious side effects.  These medications are not for mild Lupus but can be very useful in life threatening SLE.  They are also steroid sparring medications.  Blood counts should be monitored while on these medications as low blood counts are a common and dangerous side effect.  These medications may reduce your body's ability to fight infections so contact your doctor if you experience fever, chills, swollen glands, etc.

Benefits

One of the best benefits of chemotherapy for illnesses such as lupus is that the dosage of chemotherapy used is much less than the dose for cancer treatment. This type of treatment takes longer than other treatments do but, in the end, has a longer-lasting effect. In some cases, it stops lupus altogether.

Warning

Types

While there are a great deal of chemotherapy drugs on the market today that can be used to treat such conditions as lupus, some have been known to work best: azathioprine, cyclophosphamide, lefunomide, methotrexate and mycophenolate. Some of the brand names of these are Arava, Cytoxan, Rheumatrex, Imuran and CellCept.

I currently take methotrexate and CellCept. Along with high doses of prednisone for my sickly lungs.

I truly hope this was informative. I am always open to trying and answering questions on the spot. Lately I feel people are on my case more for "not taking it easy"..... I know it's meant we'll but Its depressing to be home on the couch all the time. I take injections for antidepressants as well weekly .

Wanting to help? I seek your prayers for myself and my family. This is a log and trying process for us all. This is my third round, third times the winner right?! Thanks for reading and thanks for caring!!!!

A lesson in patience??? Quite possibly.

For the past year and a half I've been an aid at my sons school. I only work lunchtime, maybe 2 hours a day. And it's been rewarding. I love seeing my lil guy mid day, knowing his friends and teachers. Last week I informed the school I only was going to work two days a week beginning in march. Why?? Because I decided to go thru the appropriate steps to become my grammas in-home provider...aka her companion. Lol

It's going to be good on many levels, I think. I am spending tons of time with her, learning things I didn't care to know lol.
I do her shopping, cleaning, laundry, prepare a meal if she's hungry and listen to her talk :) I've learned this week it'll be a wonderful bonding experience.....or the good Lord is teaching me patience.
I'm glad I am in a position where I can give her the help she needs, earn alittle money, be there for my sons.....the bible talks about taking care of the older people, so in away she's like my ministry. Lol a Gramma-ministry!!!

Day two went well today. We sat and watched tv because she was too cold to do anything and there was nothing to do lol. Hmmmm this job may be close to perfect!!!!

A new way of thinking

It was brought to my attention this past week by friends and family, that I should use my blog as an outlet for sharing my lupus adventure. So many friends try to understand and have empathy for me. Where I really don't think people get it lol. As a matter of fact I know they don't, because I don't get it half the time.

This illness has changed my life. Affected my sons lives, all I can do is pray things calm and go into remission. So many times I cry "it isn't fair" then I come across someone who just got diagnosed and think maybe this is why I have this. At treatment last week, a woman in her 50's was there receiving an infusion too. She sobs everytime, most of the time we are there. Yes it's scary. And depressing. Getting poked and prodded every week, twice a week isn't a glamorous event. Anyways, I finally asked her if crying helped. I cried the first couple of times, realized it gave me a headache and sucked it up. Lol. She paused and just stared at me. I introduced myself, and told her my pitiful lupus story. She says "wow you're really sick and your not sad. I watch you every time and you come in pulled together, smile on, and do your thing". She shared her story. Yeah, she's not near as bad as I am, her dr is just pushing stronger treatments sooner than mine did. Mine tried alternate methods first.
She asked how I stayed positive all the time. I told her I take two amazing antidepressants, lol, but I have Faith I will get thru this. I have too. And I have an amazing support group behind me. Sooo many friends that message me daily and tell me they're praying for me. Thinking of me. Can't express how awesome that feels. She had no one. I told her I was praying for her, and every other person there. She cried and thanked me. And said she wanted to pray for us sickos too.
So....no matter how bad a situation feels and appears, perhaps God places us in these situations for a purpose.

I have decided also this past week, that yea I'm sick and limited on activities, but I'm tire of lupus imprisoning me to my sofa or bed....with that said, I applied to attend Fresno City College hopefully, Lord willing, to begin over the summer. Something to do, to boost some self esteem. Give me a purpose. I'm looking forward to a new challenge. My treatments should hopefully end in April and I'm praying there's an improvement so I can pursue new things.

My ramblings are complete for this evening. If you've read this far, that's fabulous!!! Lol. Have a great Monday and new week!

Its been awhile......

Happy New Year!!!
Welcome to a fresher start...a new beginning. Time for change, for growing, for making Someday...today.

It's been awhile. I took time off to try and focus on what was going on in my life. My lupus has been giving me a kick in the butt, well lungs.....Lol, but I'm under close watch from Dr's.  My life is medicine and weekly treatments.... I have to listen and pray they work. I've been told a lung transplant would be in my future otherwise. And that doesn't sound like fun.

As a new year begins we always hear talk of "resolutions". I have never made one. I believe we should be striving to be better all year....not just in January. ;)
However....this year, I have thought about a small list of changes to make.....I like to call it "treatment plan for 2013"......

1.perfection.  now I know no ones perfect. But we are to strive to imitate God, and He is perfect. I want a better attitude when it comes to serving, volunteering, cleaning...working. I will strive for perfection.

2.With that comes.....I want to give 110% at being a Proverbs 31 gal. It's easy to say "I've tried, nothing changes. I already did this and that....why should I do more?" If something doesn't succeed,  I don't want it to be because I didn't give my all. I didn't try my very best.

3.Lupus kills. Yes. It's true. Dr told me so. But it's not winning me....I'm going to do better at listening...taking meds....not complaining.....and focus on positive. I've been battling depression since September, I would Love to drop the antidepressant. 

That's my year....Lol. nothing major. No big diet scheme......I just wanna live life happy, to it's fullest.

Have a fabulous start to your new year....strive to be the best you can!!

play hookie sometimes

So today I kinda played "hookie". My middle son wasnt feeling well, however appears to be fine now, but none the less he needed me to stay home with him. So I called into work. I never call into work. Its kinda odd that I did LOL. I have enjoyed being home getting things cleaned up again. The past 6 weeks I have been sickly, mentally sick...."i dont care mood". My house shows for it. I am a neat, organized person usually. Its funny how we let things go when we are down. Now that I have some good days, I am noticing how dusty mini blinds are. How the floor hasnt been swept or vacuumed to my satisfaction. Ive noticed the fridge is sticky. Today its driving me insane. So I did something about it. I dusted the blinds, and living room. And cleaned off our neglected dining room table. We havent sat and eaten as a family in 5 weeks....that makes me sad.

Despite being "down", our schedule hasnt died at all. We are super busy people, and as much as i like to sleep, there are days i need more hours to just get things done. Mondays are actually one of our least busy days....but tuesday-thursdays we dont really get home to sit until 7:30-8pm. I am so thankful cross country ends in 3 weeks... i know its good for the boys. burns energy. teaches them perseverence. but at the same time being idle  sometimes can be a good thing. Soccer is also in full swing, and that ends in 5 more weeks. Its crazy to think we do these crazy things to ourselves. By not saying no to anything. Giving into extra activites. I struggle with saying no, because i dont want to dissappoint anyone. My oldest son amazed me yesterday when he said he had not signed up for any clubs at school. He is already too busy. WOW. he does not get that from his father or i. If only i had that attitude sometimes.

Too often I think of how even Jesus took time for himself. God had a day of rest too. So playing "hookie" aka rest, is a good thing, a biblical thing.The rest of this week will not be as slow for me, so I needed todays rest to make it! Remember its ok to be down and idle sometimes, you can have a different kind of "productivity". Encouraging others via FB or email....is a great way! We should do these days more often. As I enjoy the rest of my off day, enjoy your tuesday!

Simple everyday blessings.

Lately I have been learning to surround myself with positive things. Happiness. Anything good. I've learned that I've been taking simple things for granted. Things I'd give anything to get back right now. Simple everyday things. Like.....taking a pain free deep breath. Swallowing with out choking on everything swollen. Sides that don't ache like I ran a Marathon..... And to end gloom and lonliness. There are days my chaotic world feels empty. I don't like to be the center of attention, but I hate feeling invisible. with 400+ Facebook friends.....and I feel sometimes I have no one....somedays you just need a hug....and a good mug of coffee.                              Since I've become sicker.....I have learn to notice the little things in life. Appreciate everyday adventures. Thank God for just living everyday. Which is hard to do with "a cloud of gloom". Aside from my family. I love my friends. You know who you are. Your texts, msgs, thoughtful cards, posts, and yummy meals. Means the world you take the time for me and my family. I love the upcoming season. Autumn. Nature is getting ready to transform into gorgeous warm colors. Leaves will start floating down, temps will begin to cool. I love cool brisk mornings. Blanket cuddling evenings. I Absolutely love love love the rain and fog. Can't wait.                           Praying this week is full of simple, favorite things. Remember to appreciate everyone who comes into your life, keep the close encouraging friends......even closer than they've been. God sends them to us :-)

It was good!

Since my last post, I took a much needed, much deserved vacation with my family. My husband and I enjoy taking our boys camping. The boys love it. Love the freedom of wide open spaces to run, and imagine and create games. We had made one rule on this weekend trip, that there would be NO schedules. No Timelines. No hurrying. I needed the rest and relaxation, and my hubby who is often over worked deserved a weekend with no cell phone coverage or laptop :)

We escaped to a special place. A place I have grown up going to with family and church family. I have fond memories of many families camping for Memorial Day weekend, Labor Day weekend. Or our family enjoying a July campout there. We headed up the mountain towards Hume Lake. If youve never been to the Kings Canyon/Sequoia National forest, you must treat yourself to a weekend trip. The lake isnt very big.  But is extremely peaceful. No motorized boats are allowed on the lake. So you hear children laughing. Families and friends enjoying a picnic or volleyball game. Canoes paddling around. I love it!

On this trip we had decided also to find three things we had never seen or done before. I couldnt do any major hiking, thanks to my inflamed lungs, but I could do a casual stroll of a hike. Saturday we went in search of Big Stump....made a wrong turn on the trail and made our way to the Shattered Giant redwood tree. An enormous, fallen tree in the meadow. It was pretty cool to see and walk across. Next we went to find Chicago Stump. This stump was hidden way deep in the bear country part of the forest, About 10 minute trail to see the massive beast. It was recorded being 3200 years old. Such a moment of silence to see something that old in our presence.
And lastly we went up the trail to Panoramic view, 7500 ft up and experienced the scene like birds. The lake was incredible from that difference. It was such a fun and relaxing, laidback weekend. Really need to plan more of these!!

I am speechless and in awe everytime we go to the mountains or the coast. The creativeness and handiwork or God really shines thru up there. Blows me away to think of all the detail He thought up and put into everything.

"...and He saw that it was Good. And it was!"

Praying everyone has a splendid September beginning....Autumn is on its way!