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.

 

 

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!!

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!!!

Drum Roll Please ….

Diagnosis – Doc is 90% sure I have Lupus.  I now have a new medication to take and will do another blood test in 4 months and see him after that.

Today was a good day, as I hurt this morning, but, by the time I got to work, I was able to move without too much pain.  After the doc appt., we went to Reno and had dinner then wandered the mall, looking for jeans.  Hubby is now confused on the sizing of women’s clothes.  HAH – I told him, now he understands why I am so frustrated when I go clothes shopping.

It was good to walk, but walking was hard.   I got slower and slower as we wandered back and forth.  I finally had to listen to my body and tell hubby that I was done and it was time to go home.  I guess, I need to be more aware of my body and pay attention to what I can do and accept the things I cannot do, for now.

I’m still hurting, but I’m glad I have a diagnosis and a plan.  As much as I’m not looking forward to NOT eating processed foods, I’m looking forward to investigating and discovering a new lifestyle diet.

So, thanks for hanging in with me while I was silent, waiting for test results.

What next?

Or do I dare ask that question?

My hands have been hurting and swollen.  So the last time I was in to see the doc I asked him if we could do the blood test to see if I had Scleroderma.  I just got back from the doc, as he has received my results.  My Rheumatoid Factor is above the normal range and my ANA result is Positive Abnormal.  Now I know I’m abnormal, but to actually see it on the test … well …

Basically what this means is that I have to be referred to a Rheumatologist who will then do more testing to narrow down what I have.  My doc feels I have one of the following:  Rheumatoid Arthritis or Lupus or Scleroderma.  Of these three I hope I have Rheumatoid Arthritis.  I have seen with my own eyes what Scleroderma can do, as I had a sister who died from this disease.  Lupus is not much better.  But…now I get to play the waiting game as the Rheumatologists in this area are only in Reno and the wait is about 3 to 4 weeks or longer.

I’ve been using a squishy ball to massage my hands.  Plus using lotion every time I wash my hands to keep them from drying out.

Have I told you how much this getting old stuff really stinks???  Well it does!!!!

Wow, it’s really November?

I’ve been pretty scarce lately.  I apologize for that, I just haven’t had a chance to sit down and write about my last 4 months.

As you know in July I had eye surgery.  It went real well and it took 3 months for my eye to stable out.  The doc said that my eye sight would change over 3 months.  And it did, I was finally released by the surgeon at the beginning of October.  I just saw my regular eye doctor and he is able to correct my eye sight to 20/30.  I’m excited, the doc not so much!  I guess my cataracts have grown, especially in my surgical eye.  So I guess that is my next endeavor … cataract surgery.  I still have to recoup the cost of the last surgery.  But, we’ll cross that bridge when I get to it.

My son got married in September at Zion National Park. We had such a great time visiting with family.  Here is a picture of my beautiful children along with hubby and I.    I couldn’t find the one with hubby and I.  Actually I see it everyday as it is on my desktop, but I couldn’t get it to upload to WordPress.  Yes, I am a dork!!

It was so great to see my children and grandchildren.  They all have grown so much, but they are sure getting to be their own person.  HAH, children and grandchildren.  Also to be in such a beautiful area, Zion National Park.  I told hubby that I could live there.  It would be so cool!!!  Just saying!

Work has been busy, as September is the start of the ministry year.  With the business comes craziness but, a fun craziness.  Before my son’s wedding, he told me that he is in A-Fib and they had to shock his heart to get his sinus rhythm back .  Well, it didn’t work and the next step is a pacemaker.   So in October, he called to let me know that he was having his pacemaker put in on October 15th.  After my silent initial reaction, I called him the next day to see if he wanted me to come out.  After he and his new bride discussed it, I flew out to Lincoln on Saturday, 10/13.  He had his surgery on Monday, as scheduled and spent the night to make sure all was okay.  His dad and step-mom surprised him and showed up when he returned from recovery.  Ry went home the next day and he is getting better everyday.  By the time I left, he was driving and the seat belt wasn’t irritating his incision, well, not as much as it did in the beginning.  I had asked him the other day how he was feeling and he said great!  I didn’t get to see anyone while I was back in Nebraska, which I apologize for, because I stayed at the house and hung out with the new puppy, my son and his family.  I’m excited for them as they had just bought and moved into a home, before his surgery.  It’s a cute house and the furniture they got for it, transforms the rooms!  Sometimes, I wish I lived closer to all my kids … maybe one day, we’ll get to spend time traveling around to spend a little time with each one.

The Friday after I got home, I went with 2 buses full of ladies from our church to the Women of Faith Conference in Sacramento.  Wow, what an experience!  I had a great time.  So many uplifting speakers and great music.  If you are a female and this conference comes to an area near you, don’t hesitate to go!!  You won’t regret it.  We laughed, we cried, we sang, we were amazed, and in total awe of all that we saw and experienced!  I fell in love with my Savior all over again.  I’m hoping next year, I can get all my girls to go with me.  Now that would be cool, to get my daughters and daughter in law to go.  We’ll see.

In between all of this, I’ve been sick.  Three times on antibiotics and this last time was working.  That is until I felt so good and decided to rake the leaves in the front yard.  I was so exhausted that it was difficult to even lift my arms to put the piles in the hopper.  Once I finished, I was done.  I went to bed and stayed there.  Today I’m better … well, enough to go to work and then to the eye doc.  Now I’m ready for bed and it’s only 7:16pm.

Tomorrow is voting day.  I’ve already voted … but it’s exciting to see the commitment of people to go out there and vote.  We may or  may not agree on the candidates or the issues, but we are doing what this country is all about … democracy … making your choice known by voting.  Standing up for your beliefs.  Just remember, for those that are standing up for their beliefs and voting on their chosen candidate, that is exactly what the next person is doing.  That choice may be the same as yours, but it also may be different from yours, but we all are choosing to do what made us so privileged to live in the USA, voting for our choice.  It looks to be a close race and we’ve all done our part.  Whichever candidate wins, I pray that this candidate does what is best for our country.  Does what’s best for our citizens and get this country recovering from the huge debt, the unemployment, the foreclosures, etc.    So choose your candidate, but remember, the rest of that voting line will choose theirs.