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.

 

I’m Still Here

I know it’s been some time since I last posted.  I am still alive – YAY – and I’m still recovering.  Surgery was on July 10th and I survived the face down for a week.  I’m not sure my neck has.  It’s still sore and moving my neck is still tough, but it’s getting better.  A big thank you to my sister who came and spent 2 weeks with us while I recovered,  AND in a hot, no air conditioned house, during the Dog Days of Summer!  She was a trooper and helped us out quite a bit!!

This same sister went to the hospital on Thursday with a numb arm.  Thankfully, after several tests and a night at the hospital, all tests were good.  However, they did find arthritis in her neck, which could cause the numbness.

But this got me thinking – in my family my sisters and I  are the oldest generation.  Considering our oldest sister is 70; the sis I’m talking about is 63; and I’m 53 – we are the older generation.  That’s kinda freaky if I think about it.  The three of us have health issues and once we are gone, then the next  generation will be our children.  It’s the way of life, I suppose, but I never thought I’d be one of the oldest generations in my father’s immediate family (I’m still in my 20′s – at least that’s what my brain says.)

The oldest of the next generation (our children) is 47, the youngest is 31.  Wow … I do feel old now!!!

I was at a leadership summit and one of the speakers talked about honoring not just the older generation, but also the  younger generation.  Interesting thought – made me think, do I honor the younger generation?

Honor believes the best.  Dishonor believes the worst

Honor values others.  Dishonor devalues others

Honor builds up.  Dishonor tears down.

Respect is earned but honor is given

Show honor to those above you.

Show honor to those below you.”

Both generations must be intentional about working together and honoring each other.

Do you honor those above you?

Do you honor those below you?

Do you have work to do?   I know I do!!!

Wednesday night?

It’s funny with this being a short week how it really feels like tomorrow should be Friday … but … not so.  My childhood best friend and her husband weren’t able to stop by.  They had to get home, to take care of the mom and aunt.  However, we did get to talk most of the night on the phone!  It great talking to you JG and when you head this way again, let us know.

After we hung up I looked at my hubby and alerted him that he may need to call someone as I was starting to get  a heaviness on my chest and severe heartburn.  As the pain proceeded to get worst and radiate out and through my back, I wasn’t sure what was going on.  We checked my blood sugar and it was better than normal.  However, we checked my blood pressure and it was 209/117, after resting a bit and taking a small blood pressure pill, it went down to 185/103.  I then took another small pill and waited 20 more minutes and it went down to 155/95.  As the pain in my chest started to ease up, I was able to go to sleep.  What has caused all this?  Well, I’m on Prednisone for 2 weeks.  The doc warned me that this could happen, but I’m so glad that I we had a BP cuff to check it out.  Today I feel better and we’ll see how I continue to tolerate this medication for my back.  It was a scare for hubby, but I’m still kicking!  Right now it’s 156/95 … and I don’t have the pain in my chest…YAY!

Not much else is going on … I may take it easy the rest of the week.  Thankfully work is not hectic crazy, but busy enough.  Our lead pastor just returned to the states from Africa.  He and his wife will be driving home tomorrow.  So I am excited to see him and give him a hug!!

Well, I guess I’ll sign off – y’all have a great down slide to the weekend!!

 

Many things going on

So many things going on, I’m not sure I can get them all written down.  Let’s see, first of all, I’m feeling better.  I don’t think I’m quite 100% however, I am feeling so much better.  I’m hoping this week I’ll finally be fully recovered.

Then hubby got really sick.  I mean really sick to the point of spewing his guts most of last Thursday morning.  I left work early to take him to the doc.  He was feeling achy before Thursday, but the velocity of his getting sick, was more along the lines of food poisoning.  Unfortunately these were too close for the doc to tell.  But he said either way, he picked up a bug.  If it’s the flu it will take a while to recover.  If it is food poisoning, it will can take 3 days up to 6 days to recover.  What I didn’t realize is that  one can have a fever with food poisoning.  It makes sense after the doc said that your body is reacting, not to the bug itself, but the toxins the bug leaves behind.  Therefore, the fever is your body’s natural defense.  Poor guy, yesterday he was feeling a little better, however, he was weak and no energy.  Today he was feeling a little better and overdid it by doing the dishes and cleaning the kitchen.  I made him stay home from his volunteer work so he could continue to recover.  He plans on going to work tomorrow, but again, I told him to take tomorrow’s volunteering night off so he can finally kick this thing.  I felt so bad as he was just burning up with a fever,, achy all over and his stomach hurt so bad!

He’s been planning on getting baptized as a reconfirmation of his commitment to Christ.  He needs to take his class on Thursday night, then baptism is on Saturday afternoon.  On Sunday, we are having an Open House to celebrate this wonderful decision and I am so excited and proud of my hubby.   My sister, his sister and her husband will be here to join in the celebration, so we are excited!

Next week, hubby and I go to Sacramento for Thrive.  I am so excited, as I’ve always wanted to go to Thrive.  So I’m real excited to go with hubby and as a staff member to this great conference.  We’ll be gone at the end of next week and I really cannot wait!!

Since we will be gone, I have to board the dog.  Unfortunately, he’s due for all his shots before I can board him.  So Thursday morning, hubby is taking him to Reno to get shot … hahaha … vaccinated that is.  So much to do to prepare to be gone for 3 days.  Plus getting the house together for the party.  I’m so excited, exhausted and anxious … LOL … so much to do, so little time.

Well, I hope you all have a great rest of the week.

What a way to start the year!

First, I want to say thanks to those that left comments, those I’ve approved and those that I haven’t.  I’m real bad about answering back, but I do thank you.  Also, I’d like to welcome the new readers!  I’m glad I can make a boring day brighter.

This weather is going to be a challenge on my health, (why is this a surprise?).  One day it’s in the 40′s, next it’s in the single digits, then back to the 40′s.  Because of this weather change, we are sick, yet again!  At least hubby and I are sick at the same time and started antibiotics today.  That’s a good thing, so hopefully we can get this done and over with and not keep passing it back and forth to each other.  That makes for a long winter when we take turns being sick!

The bad thing about being sick is that I’ve now missed 3 days of work.  I’m very thankful I have a grace filled employer.   As our lead pastor says, “When it comes to the Pony Express, you take care of the ponies, otherwise, there would be no mail!”  So he is trying to change the culture, people first, tasks second.  I love my job and my fellow staff members!!

We’ve had several deaths this week, people I know, but don’t know well.  I’m sad for the family and friends left behind.  However, as they were believers, I can see them dancing on streets of gold in new bodies.

Fire season is supposed to be done, however … it’s been so dry in addition to cold, so the timbers are primed.  Unfortunately a fire broke out in our region.  I’ve enclosed the link to the paper.  Amazing and very heart breaking pictures are in this article.

Well, the heavy duty cough syrup has hit, so I’ll sign off.  Y’all have a great weekend and stay safe out there!!