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!!!

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!!

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!

 

Dog, Yard & X-rays

We’ve been dog sitting a Cocker Spaniel this past week.  His mom and dad come home sometime on Saturday and they’ll pick him up on Sunday.  I’ve really enjoyed having this dog around.  He is such a good boy and so loving.   Hubby just told the dog that he can’t tell his parents what we let him do.  LOL, yes, we’ve spoiled him.  Hopefully he’ll adjust to being home quickly.

One of our friend’s son needed extra money to get his phone fixed.  We had him over to rake the back yard as neither hubby nor I can do the yard.  It’s difficult with his messed up tendons in his elbow and my ridiculous disease.  He did a great job!!!

I’ve written my speech and now I need to memorize it.  It didn’t turn out like I thought it would, but I think it will be interesting.

I know my hubby tries to be supportive in all that I’m going through, but sometimes things get a little too overwhelming for him.  The other day his anger and frustration about not being able to fix it came out.  I feel bad as neither of us can do anything about it, just wait and see what’s next that the doc has to treat.  I now have to get X-rays on both knees.  It is never a dull moment in my world.

I’ve found a Vegan Blog with yummy sounding desserts, well yeah, it also had food, but I miss desserts!!  I got onto this blog because last night I had Kung Pao Tofu at the Chinese restaurant in town.  It’s now my new favorite thing to order there.  So I was trying to find recipes to make it at home.  I’m really missing  my sweets.

Anyway, thought I’d stop in and hear myself talk!  Y’all have a great weekend!!!

 

 

Melt Down

Yes, I finally melted down last Saturday night.  I was thinking of my longevity and started feeling unloved & unappreciated as I thought about my children and how they haven’t visited in a long time.  One did visit in March, but it was on the way to a funeral.  We did get to keep 2 of the 3 grandchildren overnight, which was great fun!!  With talk of returning sometime this summer, my hopes were dashed as summer is now over and the school year has started.

So, yeah, all the self-talk going on in my head just became too overwhelming and I lost it.  Hubby was so great at just holding me as I cried.  The next morning, he stayed home with me as I continue to cry uncontrollably.

I know my kids have their lives, which we’ve always told them that their immediate family (spouse & children) come first before anyone else, but one would hope all or any of them would visit more often.

As much as my husband was supportive, my son was just as much, with his words of encouragement and support.  He’s always been the one child that lets me into his life, whether good or bad.  It’s not favoritism, however, he is the farthest away, yet, he’s the closest, as he calls more often.

We’ve taught our children to be independent … It sucks that we did too good of a job!!

 

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.