Rock It

A year has passed!  How time does fly.  The last post was a daily devotional I was doing.  I didn’t do the last day.  Another thing left not completed!  Was this by choice?  Was this laziness?  Was it that I lost interest?  I’d say a little of all!!

What I haven’t done is talk about my life with Scleroderma in a while.  Yes, I still have it.  Yes, I’m still  frustrated with it.  Yes, I still cannot type with it as my hands don’t stretch.  Which could also be a reason that I don’t blog like I used to.  I could get a mic and a program to turn my vocal words into typed words, but I’m afraid that I’d be misunderstood as much as Alexa misunderstands me!!  Of course, that would be an interesting post, in between my cuss words!!!

I’m still here and enjoying time with the grand-littles!!  I get tired easily but I’m trying to stay focused.  I wake up in the morning (ok, sometimes in the afternoon) and my brain has a list of things for me to do:  Laundry, vacuuming, dusting, scrub the floors, etc.  But, I don’t get too far as my body just laughs at my brain and its enthusiastic ambition.  I find that I only do what I have to in order to keep the health department away, but, this place is no where near as clean as I’d like it to be!!  It’s frustrating!!

Hubby’s been great at taking over what I my hands are limited doing.  He now cooks and does the dishes.  He’s getting adventurous with his culinary skills and dinners turn out great!  Not only does he cook and take care of the kitchen, he’s my driver and assists me in walking, putting on a jacket/sweater/button down shirt, etc.  My arms don’t go behind me to put these on anymore, so he has to assist.  It’s a disappointment to me that I’m losing this ability, but thankful that he’s here.

What I miss is my girl time with my friends.  I miss talking for hours escaping my house to visit in theirs or the park.  I miss wandering around the thrift stores to see what might be a great find!  I miss going to lunch with my girlees and just be girls!  Don’t get me wrong, I LOVE being near my son and his family, but, I do miss my friends!!

I have a friend that moved to Idaho.  We talk almost everyday by messaging.  She’s been my saving grace as I still  feel connected to her with the distance between us.  My face is taking on a 2 tone appearance.  Around my eyes & nose, the skin tone is light.  The rest of my face is a couple of shades darker.  I asked her today if I should rock the two tone or get makeup.  I LOVED that she said to rock it!!  I really don’t like wearing makeup!!

I have Scleroderma that is changing my skin, body & organs.  I could be ashamed & hide  or I could just carry on with my head held high and accept the changes that I’m going through.  I choose the latter, but, I do try not to complain.  I know I could be worse off than I am.  I know this disease could turn ugly, so I shall accept the changes and rock it with all I got!!

So get out there and rock your life!!  I’m sure going to rock mine!!!

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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 7, 2016

I spoke to my bestest friend last night on video chat.  It had been over a year since I’ve actually talked to her.  We usual message back and forth every day or every other day, but this was the first time to actually see her and talk.  It was so great as I miss her so much!  I love that we can laugh and carry on as if we were actually together.

We watched our grandbaby last night.  She is speaking so clear now and knows what she wants or not wants.  We watched her favorite movie, “The Little Mermaid”and she’ll sing and dance with the music.  We get to have her again tonight for a couple of hours.  YAY!

The weather is supposed to be snowing, but right now it’s raining.  The snow will appear later today or night.  One never knows in the midwest, storms appear or disappear out of the blue.

Just thought I’d stop in and say, “Hey!”  Not much else going on, but I do need to go to the basement to get the laundry going.  As I’ve taken a pain med & muscle relaxer, I had best wait until the effects are not so strong.  LOL, life with Scleroderma.  Gotta love it … NOT!!

I hope you all have a wonderful day, where ever you are!!!

Later!

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!!

What’s new?

Other than my last post being in April?  That’s bad, I was trying to do better at posting but I’ve been lazy.

My Scleroderma continues to be a pain.  About 4 weeks ago, I was put on Methotrexate.  I was scared to death to take the first dose because of all the bad side effects!  Thankfully, my doctor has treated this disease for over 30 years and he knows how to prescribe this drug.  I take 3 pills on Wednesday and 3 pills on Thursday.  The rest of the week, I take Folic Acid to help cut down on the side effects.  So this is my 4th week on this drug.  On the days I take this drug, I can feel weak.  I’ll sit down or lie down until the energy returns.  I also drink, 2 bottles of Boost on the 2 days I take the drug.  I really like the Rich Chocolate.

How is this drug supposed to help with Scleroderma?  Well, from what I understand, it’s supposed to help with the pain and itchiness of my skin.  Is it working?  I’m not sure.  But it’s still too early, it can take a few months before we know.  The bad part is they have to constantly moniter my blood to see what adverse effects my body may have to Methotrexate.  Before I started this drug, I asked the prayer warriors on Facebook to pray to protect me from these side effects.  Prayers do wonderful things!!

I still have issues with my lungs having 65% function, so that will also be something they watch.  I have brain fog dyslexia, no not a real thing, but something I deal with.  My brain gets a little confused and I’ll say or think dyslexic.  Here’s an example:  I went to step around my son’s dog, saw her ear and told myself to NOT step on her ear and I stepped on her ear, causing her to squeal and jump up.  Another example, I’ll think in my brain correctly, but say the opposite.  Or it will take me a while to think of a word or name of something.  Yes, I’m getting older, but it feels like pulling teeth to get my brain and mouth to coordinate.

There are days that I want to just give up.  BUT, that really isn’t an option.  The only way I get through each day is my faith in God and relationship with Jesus.  He is the reason I get through my days with this disease.  He helps me through the struggle, the pain, the frustration and keeps me from giving up and quitting.   The other one that gets me through this, is my husband.  He’s always there for me and does what he can to massage the pain from my arms, back & neck.  The ones that help me forget about the aches and pains are my grandchildren.  Spending time with them helps get my mind off of this body!

This is a disease that I wouldn’t wish on anyone, however, if you find yourself diagnosed with this disease and would like to talk, let me know in the comments.

If you are new to Scleroderma, click here for a site that will give you tips for living with this disease.

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.