How am I

Well, since I’ve decided not to do the Cytoxan I’ve been wandering around the world wide web and am finding a few things that will help with my lung situation.  Doing a search for Natural Scleroderma treatment, Curcumin was one of the front runners.  It is supposed to help with the scaring, including my lungs.  Curcumin is found in Tumeric.  So every night I make myself a tea, consisting of Tumeric, Ginger and cinnamon as well as honey for a sweetener and almond milk.

My trial results on how I feel after drinking this for a week:  I can almost straighten my arms.  There is just a slight bend in them and my skin doesn’t feel like it’s going to rip when I do this.  The Scleroderma started to go above my elbows and it was difficult and hurt to bend my arms and try to bring my hands to my shoulders.  I can’t touch my shoulders yet, but I can bend my arms so my hands are straight up.  I have slightly more movement in my wrists.  With my palms up, I can bend them back, and bringing them forward, I can go slightly more than straight out – which is a huge improvement.  The biggest thing I have noticed is that I’m not coughing as much AND I can take a deep breath without choking.  The coughing/choking is due to the scarring in my lungs.  It doesn’t help that I also have it in my esophagus so my throat area feels stiff, but I am taking medication for this.

Let me be clearI AM NOT SAYING THIS WILL WORK FOR YOU OR ANYONE ELSE WITH SCLERODERMA – What I am saying is that for ME, I am noticing minor improvements with my symptoms which  I am praising God for, as He created all things and if this is something that will work, I will try it.

There are side effects (as in all things) to taking Tumeric.  It can affect your liver.  So I pretty much drink a cup of the tea at night before bed, when my body is trying to repair itself.  I drink nothing but water now, to help flush out my system so there is no lingering stuff in my that could cause damage.  I only drink filtered water from the Britta pitcher as I don’t want to drink the added minerals in the bottled water.

As for diet, well, I’m not real strict with that.  With limited funds, I cannot go crazy on a Paleo or Veggie diet, so … moderation is what I’m trying to do.  I can say I don’t have much 0f a craving for sweets.  Maybe an ice cream cone, as it’s pretty hot here in this non-air conditioned house.

Today I hooked up the portable swamp cooler.  I love that it keeps the front area of the house cool, however, it is so loud.

So that is  my world as of today.  I hope you all have a great week!!

Now the big drum roll

The results of my CT scan shows that Scleroderma is in my lungs, affecting 3 lobes, hence the 25% loss of lung function.

With little known about this disease, the only thing my Rheumy could suggest was Cytoxan, which is a Chemo drug.  Yes, it will bring all the side effects with this and  … AND … no guarantees this will work on slowing down the progress in my lungs.  With a possibility that it will give me cancer in another organ.

Friday, I was a mess.  Yesterday I decided that the odds were NOT good and I was not going to go on this drug.  If it did not work, my body would be screwed up even more than it is and my immune system would be nil, therefore, I would not be able to be around the grandkids.  So …. NO …. I am NOT going to do this drug.

The other alternative he gave me was to go to UCSF for a second opinion on treatment.  I’ve done my research and the clinical trial at UCSF is the Cytoxan for one group of people; the other is CellCept (another drug that will mess you up).  No thanks.

I know my docs with the hippocratic oath they have taken will not like my decision, but I am searching for a more natural treatment.  I know I have to be careful with herbs and things that will support my immune system, because my immune system is already working overtime attacking my body, so there is quite a bit of caution I need to heed.

Worst case scenario – whatever natural remedy I decide to do, doesn’t work, I have had a better quality of life than putting toxins in my body being isolated in bed.

Yes, somewhere down the line I will be going on oxygen, but that time is not here and I’m not going to worry about that until the time comes.

I could tell my Rheumy did not like giving me this information.  He’s even surprised how rapidly this disease is growing.  But, I have faith in God and I ask Him everyday to guide me in my research process.

First Month

My experiences in the first month with Lupus – it S U C K S!!!!   LOL, I felt so lost as everything I had read was such a doom & gloom type of thing.  Yes, it said that many have gone on to live productive lives for 30+ years, but it got me to thinking, if I’ve had this for awhile, how many of those 30+ years have I already spent??  Just one of the thoughts that goes through my mind.

So I actually had to grieve my health.  To give myself permission to feel the loss and sadness of not being able to do what I would take for granted.  So basically, I went through the 5 stages of grief.  I kept going back and forth between anger and depression, one feeding the other constantly, however, until I found a book about the first year of Lupus, by a person who was diagnosed with Lupus in 1999, did I start moving toward acceptance.

In this book everything that I am walking through, physically & emotionally, she has walked through and talks about it in her book.  It’s like having a friend right there with you, letting you know what to expect, however, NOT telling you what to do.  Which is pretty wise on her part as each body is different and unfortunately, Lupus affects each body different.    So I’m getting support through a book, even though many people I’ve come across have said that they know so and so who has Lupus and I can give them a call so you can talk.  I know it is a good thing to have a support system, which I do have, but to have a live support group of lupus fighters, I’m not ready for.  If I get too much info, my eyes glaze over and I tune them out.  So reading this book is a blessing.  I can read as much as I can handle, put it down, then in a couple of days, start up again.

One thing that she says, and unfortunately, I’ve found out myself, is that there will be trial and error.  More like trial and fire!  I’ve been trying to drink more water.  I detest the taste of water.  I know some of you will say there is no taste, but there really is.  So I have to chug it down.  If I have to drink water, I’m a water snob and have to drink bottled water.  Well, we ran out of bottled water and being the stubborn person that I am, wouldn’t drink even the Britta filtered water.  Instead I drank diet soda all day long for almost a week.  Well, my body let me know that it wasn’t happy with that.

Both of my wrists, both of my ankles and the balls of both of my feet felt like someone was stabbing them with nails all at the same time.  I’ve already been in pain, but with that much pain, I couldn’t move and all I could do was cry.  I did take a pain pill, but it was taking forever to get to these areas.    Hubby was the best, when he came into our room to check on me, he saw I was crying.  So he turned everything off in the front room and came to bed and sat with me until the meds took affect.  I now know I cannot do artificial sweeteners.

I had mentioned to one of my friends that I caught a glimpse of the pain Jesus went through for us.  If in my flesh I couldn’t handle it, it is just amazing to me how much He loves us to go through all that he went through for us.

Thankfully my regular doc tweaked my pain meds.  The pain isn’t a debilitating pain/ache.  I can actually move without too much discomfort.  Friday night I actually danced at the concert in the park.  I paid for it later, but after not being able to move without extreme pain for the last 5 months, I was celebrating with dance.   I even made it to church last night!!  I haven’t been in a long time.

So that is my first month’s experience.  I now feel almost normal, but still have to be careful not to over do it.  As the doc is able to manage my pain, there isn’t much he can do about the fatigue.   What my brain thinks I can do, I know I can only realistically do about 1/4 of what my brain thinks.  Dang that inner child!!!

RIP Freddie

Since my last post – I’ve been sick on and off, until the end of February when I got real sick and almost ended up in the hospital.  Pneumonia/Bronchitis – it’s too close to tell exactly which, but doc said either way, the first time I saw him for this, I was so sick that I had to use a walker to walk as I had no strength/energy and I couldn’t breathe.

Almost a month later, I’m able to walk without the walker, but I cannot over do is as my lungs start to burn and I have to sit down or lie down until I feel better.  If I over do it, then I’m down for a day.

Two and a half weeks ago, in the midst of my sickness our dog died.  Unfortunately it isn’t just me, but hubby has  been sick as long as I, so going through the dog dying was a set back as we were up all night holding him until he passed.  It’s like watching a human die.  The gasping at the end and finally the relaxation as they leave their body.    I know some, like my mom, just slowly stopped breathing and slipped away, but there are some that have trouble breathing and do the gasping thing.  Anyway – Freddie’s gone and we will miss him.  One of his favorite places – on this pillow/couch.

Fred

Hubby is getting better but still not strong as he usually is.  We both get winded easily.  I’m about 60% better – the Elders (The head pastors) of our church as well as the Associate Pastor came over to pray over me and anoint me with oil for healing.  It was great to see them and talk to them for a few minutes – I sure miss being around these amazing people!!  I don’t have a picture – but I made them all put on masks before they entered my house.  I’m not strong enough to do a thorough clean in this house – so I insisted on them wearing masks to protect them from whatever may be lingering in our house and from me.

So that has been my time away from this blog.  I hope you are all well and getting excited about Easter this weekend!

Happy 2013

I woke up this morning wondering what is in store for us this year.  Then I saw a FB post about a jar and adding a piece of paper in it with the good things that happen during the year, as it happens.  On New Year’s Eve, take them out and read what went on for the year.   What a great idea!!!  I started my jar.  At first I had a jar with no lid, but I remembered I was given a jar for Christmas, it’s perfect – has a lid and all.  So my only New Year’s resolution is to make it a point to write down the good that happen for the day.  Yesterday, 12/31/12 was our 29th anniversary.  Today starts our 30th.  What a great way to look back on and celebrate our 30th year of marriage.

So, what to plan dream for the year.  I know better than to plan, God always laughs at my plans and then His will be done!  So I’ll dream and watch Him make my dreams so much better!

I hope you all had a safe and happy celebration welcoming the new year.  We did as we watched the ball drop in NY on the tele and had a glass of sparkling cider.

 

 

Grateful

I am so grateful for the special people in my life.  God is so faithful and He uses His people to help when one is at a loss.  So thank you so very much!!

Today is the day for my right eye cataract surgery.  I have to be there by 10:20am.  I’m nervous, anxious and hungry!!  I’m hanging on to my Savior for peace and calmness as I wait for the time to leave.   I was able to take my blood pressure medication with just a sip of water, it was hard to keep from drinking more.

Well, I’ll talk to y’all later.

 

What now?

I went to the eye doc on Monday for a check up, it turns out my eye sight got 3 lines worst.  Doc wasn’t too happy and I had to go to his other office to have a scan of my eye done.  So Wednesday afternoon, I had the scan and my cataracts have grown, especially in my right eye, which is rapidly growing.

Unfortunately, I need 2 more surgeries.  From what he says it will be a piece of cake compared to the last eye surgery I had.  But still…so on 12/20/12 I have cataract surgery on my right eye and 12/27/12 I have it done on my left eye.  I just need money to fall out of the sky to pay for my co-pay for these surgeries.

So much for Christmas for our grandbabies.  I’m not thrilled but if I don’t want to lose my eye sight, I guess I had better get this done.  Thankfully the recovery time is a day AND I don’t have to stay face down for a week.  I have mixed emotions as I’m hopeful with the outcome, but am concerned about the funds that need to be paid up front.  I know, turn it over to my Savior and wait … so that’s what I’m doing.

Oh and I need to get my drivers license renewed on Monday, before my birthday.  As I have to go in, I’m going to have hubby drive me just in case I don’t pass the eye test.

I’m so happy I could just scream!!  So how has your week been?