April 7, 2016

It should NOT be this difficult!!!  My new rheumy is putting  me on a new medication (Cellcept.)  My pharmacy said that it is not approved by my insurance.  Last night I called my insurance and they told me that the pharmacy needed to call and get a one time override so I didn’t have to wait for the meds.  After that, I would have to order my refills through them direct.  So I called the pharmacy back and told them.  They took the info.

This morning I checked my RX status and it still was sitting in the pending as insurance will not cover it.  I called them this morning and told them the above and they were to call me back.  I receive a call back and they told me the insurance company told them that I had to call them for it.  Which I told them that I had last night.

Anyway, I call the insurance again, however, they told me their system was down and they wanted me to call back in an hour.  I called back in an hour, finally got someone and she got the override done and told me to call the pharmacy to rerun it and it should go through.  Called the pharmacy and it went through!  OMG it was like pulling teeth trying to get ALL the information needed so that my RX could be filled.

Now going forward, my rheumy has to send the insurance company my script so when it comes time for refill, I have to get it refilled direct through them.  LOL, so … on to my next adventure!!

January 12, 2016

Last night hubby was going through boxes and found my school transcripts.  It showed I went to Kindergarten at a public school.  I remember going to a Parochial school for six years, but had no recollection of going to Kindergarten at this one school.  I kept thinking and thinking and yeah, nothing was coming to my brain.

I sent a message to my oldest friend, one that’s known me forever and asked her.  She gave me names of the two teachers at that time.  They both sounded familiar, so I wasn’t sure.  The teacher she had, she described her room and what she looked like and even where her room was at the school.  LOL, I don’t even remember going to that school.  It was amazing that she had these vivid memories and I had nothing.

As I thought about it, I remember bits and pieces, but nothing that is enough to make any sense.  For the six years at the Parochial school, I remember the playground, where & which classrooms were which, the principal, the teachers, but I could not describe each room or some of the teachers.  For my first three grades, it was easy as they were nuns and wore the same habit.  But the civilian teachers … nope.  I do know I had one teacher for 4th & 6th grade.  After that I went to a public junior high.  Now I do have memories of those year … well, more than my elementary years.

Why is it some people of great memories from childhood?  My hubby is the same way.  He’s moved all over the country being an Air Force brat, but he remembers years, places, details, etc.  It just amazes me.

I told my friend that she needed to write down our memories as mine are spotty!!  Thank God for friends who can piece together my past!!!  I know I’ll get the full flash of my life at judgement time, but I want to know now, not when I’m answering for them.  LOL

How far back do you remember?  And are these memories in full detail??

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?

I know, it’s been a long time

The months have flown by and we are now in November.  I have about 1/3 of the house packed and we load the truck on December 6th.  God help me, please!!

As you can tell we are still moving to the Midwest.  This is similar but different from the last times we’ve moved.  Why?  I’m so glad you asked, because I would be in the same amount of completed packing, because I was working full time.  Now it’s due to my body not cooperating with me from Scleroderma.  However, thankfully I march on with help from family and friends!!

This morning while going through my emails I came across an article about Chronic Illnesses.  The article was written by a fellow sufferer of these illnesses.  Mind you, she has Lupus, Sjogrens, & Rheumatoid Arthritis, however, they are all in the same family as my Systemic Sclerosis (Scleroderma).  All of these diseases are debilitating, painful as well as frustrating when one has been an active person.   If you have time, it’s a great read.  You can read it here.

Every point she made is so true.  I was glad to know I’m not the only one feeling this way.  HOWEVER, I must say that I have the BEST set of friends and family.  They don’t judge me for what I can or cannot do.  They are very willing to help me with whatever I need, if I only ask them.

She talks about having to grieve daily over the new daily things she cannot do.  Oh. My. Gosh.  She is so right!!   I know to those that are well, this makes no sense.  But to those of us that suffer, everyday there is a new degree of things that can’t be done.  As I type this, I can see my fingers curving more and more.  I’m not able to spread my hands.  Here’s a test, take a ruler, open your hand and spread out your fingers.  Measure from your thumb to your little finger and note the measurement.  I just did this and I measure 5 1/2 inches.  Weird!!

When my husband holds my hand, if we interlock fingers, his fingers only go to my middle knuckles because the rest are stiff.  Another thing to grieve, not being able to interlock fingers with my hubby.  It’s a sad and scary thing to realize what normal function is gradually slipping away.

She talks about the pain.  Oh yes, the pain.  You know the pain can be a real pain in the a** and it is EXACTLY as she mentions in this article.  What I find frustrating is the FDA in all their infinite wisdom, changed the medication I’m on and limited the amount of pills given at a time.  Not only did they do that, they DO NOT allow refills.  So that means, I have to go to my doctors office each time to get a new script and take it to the pharmacy to be filled.  The ONLY people this hinders are those that have a legitimate reason to be on these medications.  Those that use them to get high, will be able to obtain them some other way.  Can you tell I’m just a tad frustrated?  Oh well, Let It Be as The Beatles sing  OR Let It Go as in Frozen.    Or as her article reads, “Not giving up, but giving up.”  Some would think that is strange, but it really isn’t.  Giving up trying to figure out the whys, what-for, the infinite wisdom of those in charge … etc.  It does make for a better blood pressure reading.

When hubby goes off on something, I just look at him and tell him, I can’t change it.  OR, I don’t have the brain space to deal with that right now.  Which is true!  I now get overwhelmed.  This person who used to be an Escrow Officer handling thousands and millions of dollars now gets overwhelmed and has to stop, breathe and focus my brain and write down what I need to accomplish for that day.  AND not be disappointed that I didn’t get everything on my list checked off.  I spend a lot of time shaking my head at myself.

Her 3 things are very helpful.  I also a fourth thing, which should be my first thing, that is my faith and trust in God.  My fifth thing, which should be my second thing, is my counselor.  Without her, I would not have made it through this year and preparing for this move.



Dog Days of Summer

It’s been pretty hot around here.  Thankful that it cools down when the sun goes down.  I’ve been busy dog sitting.  I had a puppy for a few days.  It reminded me that I don’t want a puppy … EVER!!!  LOL  Oh.  My.  Word.  “No Bite” was my vocabulary for all 3 days.

Then I had a Westi/mini poodle mix.  We fell in love with this little guy.  He was the perfect size and liked to cuddle.  Now I have a Blonde Cocker Spaniel.  As it’s hot outside and we have no a/c – I called his mom to get the name of their groomer.  He’s getting groomed tomorrow.  I hope that helps with his panting in the house.  I feel so bad for him.  He’s also been a joy.

A friend and I went to the park to visit.  On the way back, there’s a cherry tree, with a note that says, for 20 minutes,  pick all you can.  So we were picking cherries and piling them in our shirts.  It was fun and good exercise for my hands.

Can you believe it is already July?  I have to start packing now so I’m ready in 6 months!!

Our neighbors had a yard sale and hubby got me a Schwinn 5 speed cruiser bike for $10.  We just need to get a tube for the front tire and change a couple of cables and I’ll have wheels!!!  LOL   Now to see if I have balance!!  I’m excited and can’t wait to use it.   Hubby was happy as he was able to get a new full set of camping plates/kettle/etc.  along with table top propane heater and a propane lantern.  Big score at this yard sale!!

Since I haven’t been working, my nails have grown long, to the point that I cannot type.  LOL … I guess I had better think about filing them down.

Well, just thought I’d stop in and say hey!  I’m still here and doing good, considering!  Y’all have a safe and Happy Independence Day!!!

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!!