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!!!

Grateful

I am so grateful for the special people in my life.  God is so faithful and He uses His people to help when one is at a loss.  So thank you so very much!!

Today is the day for my right eye cataract surgery.  I have to be there by 10:20am.  I’m nervous, anxious and hungry!!  I’m hanging on to my Savior for peace and calmness as I wait for the time to leave.   I was able to take my blood pressure medication with just a sip of water, it was hard to keep from drinking more.

Well, I’ll talk to y’all later.

 

Would someone please remove the battery from that dang bunny!!

I wish it was just a little pink bunny that keeps going and going and going … unfortunately, it’s been tragedy that keeps affecting our area of the world.

It has been raw emotions getting reopened repeatedly for the past two weeks.  I mentioned the IHOP shooting.  I have not mentioned the attempted kidnapping during one of the weekend service at church.  I have not mentioned the motorcycle accident killing the rider, who also went to our church.  And now, the Reno Air Races has a plane crash into the audience, with a tragic outcome.   

I was with friends last night, having a girls night out.  As I was taking purse orders, one of the ladies had mentioned, who do we know that was there and how is this going to impact us again.  All I could think of was, yeow!  Because it was such a true statement!  Even though Reno is about 50 miles away and where the air races were, it’s even further, but this event is very popular.  People from all over come to the race to watch these pilots do stunts that one only wished they could pull off.  So to realize, that our little community may be affected once again, just took the wind out of my already tattered sails!

In the midst of all of this, there have been great things to come out of it.   With the IHOP shooting, courage shines through.  There was a family with children and grandparents sitting at a table next to a group of men having a breakfast meeting.  When the gun fire started, the men ran out through the exit door.  Then realizing there was a family sitting next to them, they ran back in to help get this family out to safety.

With the threat of some misguided individuals saying they were going to protest the National Guard’s funeral service and memorial service, a large group of officers of many kind,  on motorcyles along with individual mortorcyclists were lining the street.  Another group of people were able to have food donated from several restaurants in the area, for all of these riders.  That way they were fed and had water after being in the sun for several hours.  Another group of people opened their homes to these riders should any of them need a place to stay.  Still more people in the afternoon showed up to stand on the street waiving flags to show support to the family and friends of the fallen. 

To see this community pull together and see God reign and shine in the middle of such darkness was such a great experience. 

We have had a couple of rollercoaster weeks, but they have taught me to not stand on my own strength and understanding.  It taught me to lean into God for the strength and courage to do things that I couldn’t do on my own.  It taught me that He is with me, no matter what I’m facing.  He is there when I’m weak and weary.  Just like a Father should be for his children.  He does tell me that I am loved, no matter what!  I am so thankful that no earthly father, no matter how good he is to his children, can compare to the Father we have in Heaven.