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!!

The First Day of February

Disclaimer – I’m not responsible for any typos or non complete sentences as I’m blogging under the influence.  

The progression of my disease keeps  me in pain.  I’ve had to back out of a couple of meetings due to my body not cooperating with the morning.  I miss Toastmasters and Women of Grace, because I’m doing good just getting to work before the doors open.

I’m now walking with a cane.  I don’t know why I hadn’t done this before as it takes the weight off my knee, so hopefully it won’t be as painful AND I need to stop being stubborn and just use the darn thing!  The cool thing about this cane – it was my brother’s.  Hubby cut it down for me.  I’m still getting used to being in sync with walking and steps, but I’m getting there.  I still cannot go up a flight of stairs.

In March we are traveling to Nebraska to meet our new granddaughter.  Then after that we will be going to Vegas to visit family.  I’ve been debating on taking advantage of the wheelchair offered at the airport.  I probably should use the wheelchair that way I won’t end up over exerting myself and be down for a day or two of my 1 week vacation at each destination.

I left work early yesterday as my knees decided to rebel and the pain was affecting my thoughts.  I couldn’t stay focused with the throbbing.  Hubby picked me up and brought me home.  He surprised me with the cane, as it had been a couple of weeks that he said he was going to cut it down.

I think my knees finally had enough as it had been an active week at work.  The constant walking/moving/up and down out of the chair was enough that they finally decided to quit working.  My right knee wouldn’t bend without shooting pains.  I get aggravated but there isn’t much I can do.  Well, I could start taking a mild form a chemo drug (in addition to the other ones) to see if it will work on the pain, but I’m still being resistant to this option.

I have applied for a handicap placard so we can park closer wherever we go.  I’m hoping to have it before we leave for Nebraska at the end of this month.

I’m excited to travel and see my kids/grandkids but apprehensive as I’m not as mobile as I was the last time I saw them.  Heck I’m not as mobile as I was last March.  Strange how fast this disease is progressing and affecting me.  I’m thankful hubby is going with us as I know I would not be able to travel without him.  I know he gets frustrated being my caretaker, but he really is there for me.

We’ve talked to my doctor about disability.  As it takes so long I guess I really should look into it.  If I continue to progress as fast as I have these last 7 months, what will the next 7 months look like?

The 30th was one of our pastor’s birthdays.  Actually the one I have a good working relationship with.  I made him the Better Than Sex Cake (that’s what it’s called) or as my brother-in-law calls it, “The Chocolate Death Cake”!  LOL, I was glad to hear he really liked it.

Sunday is the Super Bowl.  Which team are you rooting  for?  As my Steelers and  hubby’s Vikings are not there, I don’t have  a  preference.  I saw a preview of the puppy and the horse commercial (of course it was Budwiser) so I may be watching for the commercials AND to see Bruno Mars.  Other than that, I don’t have much interested in the game.  Personally, I think the Broncos will dominate the game.  But kudos to both teams for getting to the Super Bowl!!  How cool is that!?!?!

I’m going back to bed to get these legs up!  As I spend so much time in bed, I may need to get a new mattress or switch the one from the spare room to our room.  I’d really like to get a memory foam mattress and I keep eyeing the ones on Overstock.com … but that will be in time.

Well, y’all have a great weekend.  Talk at you later.

Happy New Year, 4 days late

I started the new year with a bang – sick – again!  I am not amused nor amazed!  Of course, hubby is worst than me.  All I can say is – Not. Again.

I was so happy to say goodbye to 2013.  It was a rough year, starting from the beginning.  I had high hopes that 2014 would be better, that is until we came down sick.  There’s an awful flu going around that can turn into viral pneumonia.  I’m worried that is what the hubs has.   Being viral, well, not much they can do.  He’s been on antibiotics to keep any infection at bay, but his ribs are hurting evrytime he coughs or sneezes.   He does have the strong cough syrup, I may give him another dose so he can sleep.

Looking out my window, the sky is blue and the sun is shining bright.  I have the front door open to let some air in.  I really just want to go out there and wander.  My knees are not letting me do too much wandering these days.  They hurt and I wince, sometimes scream, when I have to move them.  I’m not thrilled that the right knee is getting as bad as the left.

The time is getting closer for the new grand-baby’s arrival.   I can’t wait to meet this little bundle of joy.  Thankfully both mom  & baby are doing well.

Not much else is going on from this side of the computer.   I hope you have a great weekend!

 

I’m singing along with Pandora trying to get the cobwebs out of my voice.  I have a wispy Marilyn Monroe voice right now.  I’m not sure if it’s because the cobwebs haven’t cleared or if the disease is affecting my voice.  Something to ponder.  I find that my range is lower than normal … let me just say … that is interesting!!

My favorite song is Louis Armstrong’s “What a Wonderful World” – my sisters did a 50 year birthday DVD for me with this song and the pictures of  me through the years.  Yeah, it made me cry!  Granted that’s been 4, almost 5 years ago, but it still is one of my favorite things they’ve done for me.

Yesterday we painted our Operation Pastor’s office.  He is off in Africa along with our Lead Pastor.  Before our OP left, he dropped many hints that he wanted his office painted.  so, his Admin Asst. and I spent yesterday afternoon painting.  Thanks to her husband, as he helped move the furniture out and back in when we were done.  We are excited for him to return, which won’t be until 10/22, when he’s back in the office or shortly thereafter.  Of course we cannot do something nice without playing a prank – which we do have something planned.  Should be fun!!!

When our pastors leave on a  mission trip or on vacation, we decorate their office for their return.  One never knows what we’ll do to the office and sometimes we can get crazy.  Our Comfort & Care pastor, the one I assist, had Dora puzzle pieces hanging from his ceiling with fishing wire;  Legos on his shelf!  He’s talked about writing a book, so I created chapters on composition books with his sayings.   As he’s the only Elder left while the other 2 are in Africa, I may have to dig out his chapter that says, “Bang head here  X”   LOL, either that or get him some nerf bonker things.  HAH!

So it’s Monday night and my knees are aching.  Thursday or Friday I’m going to get them X-Rayed or maybe Wednesday or Friday – not sure – maybe I’ll just do it Friday.  My doc appointment is the following Thursday.  I’m not thrilled at what he’ll tell me.  There are 3 things that I’m anticipating: 1) shots in the knees; 2) surgery; 3) nothing they can do.  You can see why my hesitation.  If it’s surgery, well that won’t be happening, I’m trying to pull out of a financial struggle.  Plus the fact that I am on way too many drugs to recuperate from any type of surgery.  Sometimes I wish I was in the Star Trek era when they could give me a pill to fix all my ailments!  But alas, I can’t ask Scotty to “Beam me up!”

I hope y’all have a great week.  I’m sure mine will be interesting!

 

Systemic Scleroderma

Last Thursday, I asked the Rhuemy doc, “How do you know when this is no longer localized Sclerodermaa?”  So he say, “When it starts going beyond your hands and feet.”  Then he took a look and it is going beyond my hands and feet.  He feels I have the Systemic form of Scleroderma.

“Systemic Scleroderma can appear in three different ways:

  • Limited (often referred to as CREST.)
  • Diffuse
  • Scleroderma sine sclerosis

The limited is often referred to as CREST, which stands for:

  • Calcinosis:  Calcium deposits in the soft tissue of the skin.
  • Raynaud’s Phenomenion:  Most commonly seen in the hands, this is a condition in which the small blood vessels contract in response to cold or anxiety.  The fingertips usually turn white, blue, and/or red and often become numb.
  • Esophageal dysfunction: This is an impaired function of the esophagus.
  • Sclerodactyly:  Thick and tight skin on fingers due to excess collagen.
  • Telangiectasias:  Found on the face & hands, small red spots.

Diffuse – typically the onset is much more rapid in limited (CREST).  Thickening occurs more rapidly and includes more areas of the body.

Scleroderma sine sclerosis – resembles the above including organ involvement.  However, the main difference is that this type of scleroderma does not affect the skin.”

Not sure which is the worst of these, but time will tell which of these that I have.

Something I refuse to do, is let this disease steal my joy.  I refuse to let the pain of this disease steal my hope.

I am frustrated, mad, sad, and all the emotions that go along with receiving the news, but I refuse to give up!!  I did have 4 days of stress eating of all the wrong things.  I definitely felt it, as my hands and feet are reminding me what a stupid decision that was!!

My sister in Vegas reminded me, our sister that died from this, survived only 7 years.  I have way too many things to see and do to put any type of limit on myself.  So, I have my boxing gloves on and I’m gonna fight!

I know I had 4 days of eating anything I wanted, but today, I’m back on my Vegan diet.  I know my taste buds have changed, as most of the things I had, did not taste as good as I remember.  So, that’s a huge plus!!

There I go thinking again!

Yesterday at work, was a Memorial Service, as it was a smaller group of about 75 we had the service in the Student Ministries Room.  After the service they did a small reception in the same room.  The kitchen for this room also serves as the employee kitchen, so I was able to stand behind the curtain and hear some of what was said by the family & friends and watch the video.

Before the service, I was giving the pastor that was doing the service, a bad time. We kibitz back and forth all the time.  After he went through the door to do the service, I looked at the ladies I work with and said, “When I die, I want him to do my service.  So remind my hubby of that in case he forgets!”

One of the ladies, looked at me and said, “Of Course!!”

So I told her, “Because he does such a great job at it!!”

Then she looked at me and said, “And because of the working relationship you two have – that is just a given!”

I laughed and said, “Well, you know, the other 2 Elders can jump in and speak, but I want him to be the main one!”

That got me thinking, as it is inevitable that I will be leaving this earth, sometime, that I should start preparing my requests for my memorial.  If I get it spelled out, that would take the guess work and worry off my surviving family members.  They wouldn’t have to think what I would like, but would know what I would like.

So, I had better get to working on that!

 

 

 

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!!!