Bad Day

This morning is the beginning of a bad day.  Last night my arms hurt so bad and nothing was helping.  Hubby kept rubbing my arms as well as me taking a pain med and muscle relaxer.  Nothing was working, so I asked for prayer, which helped ease the pain to allow me to sleep.

This morning, I started out with a pain med.   Besides my arms, my  stomach and the tops of my legs are aching.  On days like this I want to just lay down and moan.  I know I should just get up and move, but with all these parts aching, I decided to try and blog.  It will be a short blog, but I’m at least getting my fingers moving and taking my brain off the pain.

I haven’t had many bad pain days lately, so this is hitting me pretty hard.

We had friends visit around the 22nd of July.  It was great fun as we visited as well as toured some of the attractions here in our town.  It was sad to see them go, but I was thankful we were able to see them!

This month my sister is flying to KC for a week.  Sometime during that week, she and my other sister are driving up to visit.  Not sure which day that will be, but I’m looking forward to it.

In September, my middle daughter is flying out for a visit.  it will be nice to see her also!!

Well, that’s about all I can update as my brain isn’t getting as distracted as I hoped.  Y’all have a good one!!

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Friday, 3/27/2015

I’ve received contradicting correspondence from the Health Insurance Marketplace dated 7 days apart from each other.  One said that our credit had been adjusted.  The recent one tells me that we’ve been denied and have to reapply.   Say what????  After 15 minutes on hold, I spoke with someone that double checked with someone else and was told all was fine and that the new credit is correct and we are still covered by insurance.  I thanked her for jump starting my heart today, but was very thankful that after being on hold, all is fine!!

Yesterday was errand day; post office, bank, grocery store, pharmacy, quick stop at the outdoor mall & filling up the car with gas.  We did everything, except the pharmacy, before the grocery store, I was wiped out half way through the store.  I was walking slow, thankful for the cart, as it was holding me up along with moving me.

Later that night, I started reflecting on my day and also remembering the rheumy’s paperwork that I completed.  It asked on a scale of one to three, how is your difficulty and it had a list of things.  I answered one as the least difficult.  As I was reflecting, I was wondering if I answered that wrong or if I’ve gotten worse within a month. I asked my hubby this question and he said that I do get tired quicker.  There are things that I have difficulty doing and some I let someone else do.  I go back to the rheumy on Friday. 4/10, so it will be interesting to see what the tests show how I am doing?

No longer carless

I’m so excited that we will no longer be car-less.  We’ve purchased a van and hopefully will pick it up today.  We are just waiting for them to call us when it’s done being looked over and detailed.

This past weekend I went to a volleyball tournament and a wrestling tournament.  It was fun watching the kids do their thing.

Last night we went to the science fair at the grandkids school.  It was fun and interesting.  Hubby even ran into someone he knew when we lived here before.

This weekend we will be celebrating the youngest grandbaby’s birthday.  It was postponed from last weekend as the baby was sick.  Poor thing … I’m glad she’s feeling better now.

The weather here has been unusually warm.  I’m not complaining as it’s nice to go outside not bundled up.  However, it will change with snow expected on Saturday.  The weather in the Midwest is just as hard to predict as in the Sierras.

Today is the 20th day of being on antibiotics.  I feel better, however, caught a cold on Monday.  I still have the annoying cough from a month ago.  Ugh, when is that going to go away??

Well, that’s my exciting life.  How are you all doing?

 

Happy New Year, 19 Days Late

Wow, was November really my last post?  Well, the old house got packed, the truck got loaded, thanks to many amazing friends and we drove half way across the country thanks to our son!!  Also Thanks to our oldest daughter for letting us crash at her house along the way!

We found ourselves in Nebraska, Homeless, Car-less and Jobless.  It’s a weird feeling when everything you own is in a 10 x 15 storage unit!  Well with overflow in our son’s garage and basement.  We lived in his basement for a month, which was nice as we were able to spend Christmas and New Years with them, get to know the baby or have her get to know us.  LOL

On December 31st we signed a lease for a 2 bdrm, 1 bath duplex (we’re on the main level and have neighbors upstairs.)  However, we didn’t move our stuff in until the 2nd, again thanks to our son and his friends!!

We’ve actually only lived here since the 7th as we’ve been sick for a month and no energy to do this.  We learned from our new doctor here that the first month in a new area, your body has no immunity.  Well, it’s a double whammy as I don’t have an immunity system at all.  We’ve managed to catch this every lingering upper respiratory mess.  One or two days you start feeling better and then it’s back to feeling crappy for another one or two days.  And that’s on antibiotics.  I’m hoping we’ll be done with this soon!!  I’d say we both are about 75% better and just started the second round of antibiotics … yeehaw!  I’ll be so very happy when this coughing stops along with the blowing of my nose!!

We still are car-less, so we borrow our son’s vehicle when we need to go out.  Wow, that’s come full circle … having to ask to borrow the car!

It has been very cold, however, this week it’s been real nice.  I’m able to go out in a sweatshirt and sweatpants.  I still wear my warm fuzzy boots, keep my feeties warm!

All in all, we are doing good.  Trying to get into a routine, but not compromise the body’s immune system.  Such a fine line I have to walk.  I need to listen to my body more and not want to go and see the grandbabies in their activities.  This Sunday was a good example of that, I had insomnia Saturday night and my body was telling me to stay home and not go out.  So I missed the band concert and the b-ball game.  My son did take me to the pharmacy to get the next round of the drugs.  So instead we stayed home and are tying to put the front room together.  It’s coming along, I still have a few things to do, but it may have to wait until tomorrow, we’ll see.

Hope you all are having a great Monday!!  I’m going to see what I can or cannot do … lol … dang body!!!

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.

Drum Roll Please

Okay, maybe just a small one – I’ve been complaining about breathing or not having enough of air or feeling that something is hindering my breathing – The doc did a breathing test yesterday and I’ve lost 25% pulmonary function.  That is why I get tired, as my reserves are not there.  He also said that it is a good thing I’m not working, so I can rest when I get fatigued and if I have a down day, to rest.  Pushing myself on a down day is not good as I would be worn out and it would take longer to get better.

But … with that said, I’m to stay active  … one of the things I do, if I’m not active at home, I’ll walk around a block.  The fun thing I’m doing is dancing to a cleaning mix on Spotify.  I try not to put too much stress on the knees, but I get my heart a racing.

A dumpster was delivered to my house yesterday.  So I had better get back to going through boxes!  Ugh.

Y’all have a wonder-filled day!!