Recycled Item From Denim

I signed up to make 8 things for OHCE (Oklahoma Home and Community Education), an 'adult 4-H' group which I belong to.  These are entries for the county fair.  One of the entries I signed up for is to make an item from recycled denim. I grabbed a pair of Steve's jeans and started cutting them apart.  I had no idea what I was going for, but I ended up with potholders!  There is enough padding in them that you can put your hand IN the pocket and it won't burn to pick up anything hot.  

We will see how I do in the fair placings.  At this point, I am happy they are ready.  Doing anything has not been easy this year, but I do love sewing and more than that, I love the fair and the ladies in OHCE.  They keep me entertained.  

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Medical update:  I went in to an orthopedic surgeon for my hip pain today.  Thank God I found out that my hip pain is from a bone spur - and pretty big one at that!  My hip is in otherwise good shape.  HALLELUJAH!  That is a huge weight off of my shoulders!  I got a steroid shot (OUCH!) and darn did that hurt, but I have to do exercises and he thinks it will help.  I can go back for more steroid shots if needed, but I hope the exercises and this shot does the trick.

Tomorrow, I go back to the GI surgeon, 3 weeks after my surgery, to get my stitches out.  I am still bleeding, but it is dark, old blood from the incision.  Who knows?  I give up trying to figure things out.

I did get a message from my primary care Dr (an immunologist) and he requested me to be front center at 4pm tomorrow.  I am going to wait to see what the GI surgeon says before I decide to keep the 4pm surgeon.  I am just tired.  Of medical.  Of Drs.  Of hurting.

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Finally, years ago, before Steve and I went to Singapore, Steve and I made a will.  It needs

to be updated, and the more medical problems I have, the more I KNOW I need to update it.  I almost died this year!  

There are things I want in it, but more importantly, I want my funeral, etc, planned out.  I don't want anyone having to do this after I pass away in the heat of the moment.  I want them to call and it is done.  So that part I will be working on.

I know this medical stuff will do me in.  People have said, "Good thing you don't have diabetes..."  "At least you don't have cancer..."  "You are young, you will be fine - at least you are not as old as me..."  Drink this or take that, it cured me/my brother/my sister/my grandma, etc."  

I am glad I don't have diabetes, or cancer - that is true.  But what I have there is no cure for and no hope for a cure.  It is inevitable, it will eventually kill me because I cannot fight any infections without intervention and if the intervention doesn't work, my body surely won't.  Most people's bodies help the antibiotic, or chemo, or insulin fight the disease.  My body is incapable of helping at all.  Zilch.  So while I am glad I don't have this or that, I sadly think, "but what I do have there is no hope for and no help for".  

The likely hood of me growing old is... well, according to NIH, they don't know WHY I am still alive, so maybe I will surprise everyone and live a long, ripe ol' life, right?  What I am trying to say is, everyone has their own burdens.  Don't diminish them because you may not know (or understand) the entire story, and maybe what you are seeing is "the mask"; the survival mask that we wear to put one foot in front of the other.

My motto is "Keep on Swimmin'!"  I am more bobbling now, but I am definitely not yet belly up.  The fight is real.  Please continue to pray for me.

What Do I Do With Scrap Fabric?

I made Pot Holders!  Didn't they come out adorable?

Medical Update:  I went to the GI Dr today and he is very concerned that I have a bleeding problem.  I am still bleeding from my incision two weeks out.  He is leaving the stitches another week and sending me to a hematologist in the meantime.  I did have a test that came back abnormal, which is why he is sending me in to a blood Dr.

I tire much easier than I should even though I know I have been through a lot this year.  I get frustrated with the lack of energy, but, I am trying.  I rest, I sew, I rest, I rest, I sew, I rest and then I go to bed.  It is time to be on the 'up end' of this all.

In the meantime, I have had 'water' in my ear at least 4 months.  I went to the ENT who said he didn't find anything, but in his report he said he could not access my left maxillary sinus.  What gives?  I get so done with Drs.

And then there is my hip which has bothered me for many, many years.  I finally decided to go into a Dr to see if they could give me a steroid shot to make it bearable.  Years ago I went in and the orthopedist said that is what they could do to help me then.  I was thinking back to when that was... Jeremy (36) was about 2 years old then.  Maybe I will take the shot now... lol...

Anyway, I sew between the health crisis' and rest... and I that is how I waste my time,  Cutting large fabric into small pieces and sewing them back to big pieces, then taking the scraps and making pot holders... or whatever whims I get.  These came out cute.

Something Fun for Once

I have a lot of scrap fabric.  A lot.  So, I was bored one day and I grabbed some and started sewing.  I sewed two pieces together until they were both about baby blanket sized.  I am sure something came up and they got tossed in the NTF bin... meaning Need To Finish.  

A few days ago, I was looking at projects I needed to do for the fair.  In OHCE, we all take a few things from the list and commit to making them.  I took "Random Craft from Scrap Fabric" as one of them.

Of course, I waited until the last month to work on any of my 8 projects, and then I had surprise surgery - after my Dec/Jan surprise bleed and surgery.  Needless to say, this year has not been my year.  So I guess I didn't wait until the last minute, but it is crunch time.  I pulled out those random fabrics sewn together and figured I would whip something up with them.  Well, here is one potholder that I came up with out of those scraps... pretty cool huh?

I will show you the set when I finish it tomorrow.  I do love sewing, and it occupies my time and thoughts.  It keeps my mind off of my medical problems - which seem to be more and more lately.

Medical Update:  NIH e-mailed me and said that they don't even want me to try to fly until next spring.  They advised me to take this time to heal - I have had two serious major abdominal surgeries this year, one major bleed and one significant bleed.  They advised rest.  Thankfully.

Tomorrow morning is my surgery followup visit with my GI Dr.  We will see if he removes the stitches they added last weekend.  I will be 12 days out from surgery, 1 week out from the bleed where they added those stitches.  Holding my breath... 

Today I met with a sewing group from the Methodist Church in Inola.  Finally, I may brave that step again.  Praying for a church home. 

That is it for today.  Going to rest.  I seem to need a lot of that lately... lol... 

This Happened.

Thursday, 6 days after my hernia surgery, I was in the bathroom brushing my teeth.  I was looking forward to a nice night of rest as my pain was subsiding enough to finally move easily and rest.  I thought a moth had gotten under my gown and went to wave the gown to get rid of it, but when I looked down, that picture below is what I saw.

Trying to rinse my mouth while yelling at Steve just caused the blood to pour more.  I finally got rinsed and got his attention.  He came in, saw my dilemma and immediately said, "I am calling 911".  Somehow, he got on the phone to call them, and I dialed Stephenie.  I think I put the phone down, trying to answer his questions while holding pressure on my stomach at the same time - I have no idea why I put the phone down.  Thankfully, she heard enough to know to get to us now.  She brought Todd, who thankfully, held pressure and kept checks on me until an ambulance got there 45+ minutes later.  Inola Fire and Rescue never came and we later found out they never got the call.

Fast forward to the hospital.  The ER Dr decided that I had a small separation in my incision, so she added a couple of stitches, and a couple more... and a couple more.  She found that I was bleeding through the stitch HOLES.  Baffled, they applied pressure, checked later and again, found it seeping through the holes.  She called my surgeon who came in and found... I was bleeding through the stitch HOLES.  He is also baffled.  Though I am not pouring blood like I was when I came in, they didn't want to send me home bleeding at all.  So they apply pressure bandages and send me to a hospital room to monitor me.  Everyone is baffled that I am seeping blood through the stitch holes.  I think I became the holey joke.

The following day, Friday, my surgeon came in 24 hours after the pressure bandages were applied, and found I was still seeping blood.  Obviously, I wasn't going to bleed to death seeping blood, but he decided to call the hematology team in.  They took a bunch of blood work to see if I have a bleeding problem that has suddenly arisen.  I haven't gotten any of those results yet.  I will be going in to my surgeon Thursday so maybe they will have the results then.  My surgeon is concerned that I have a bleeding problem, that was actually what caused the colon bleed in Dec/Jan.  He says it makes more sense than this random bleed 6 days into surgery.  I should be well into the healing part by now.  He said he could see a pull a day or two out, but not a week out.  It is all a guessing game right now.  I am sick of blood though.  When it is coming from me, it is un-nerving.  

I don't think I could pay my surgeon to operate on me right now though... Lol... 

Anyhoo, I am home again, and I am still seeping.  I just looked at my gauze and I have a spot on it - not big, but it should have none at all.

Depression is swallowing me whole right now.  I am having a tough time.  Too many medical issues, medical bills, and not enough fun in my life.  I should not have to worry about continuous medical stuff at this time in my life.  Steve did not work as hard as he did for as many years as he did to go through medical crisis after medical crisis with me.  We need to have lots of time for fun stuffs.   

I am sad for us both, but more sad for him.  My medical has been a problem for us since the very first day we met, and it hasn't let up.  He deserves a break.

Now That’s Out of the Way!

Let the healing begin!

Yesterday’s infusion and today’s surgery went well.  Sharon came and sat with me during the infusion and like an airhead I had her increase the rate to 53 so it would go in faster.  Well I got about half way through I got slammed with an infusion migraine.  Slowing it down didn’t make it go away, but it stayed there at that level - and It is still lurking.  😢

I was surprised to find out that I was 1st case today!  I also found out that there are 29 other cases at St John’s main hospital in Tulsa!  Wow!  That is a lot of operating rooms!  Maybe that is why I got so many medical bracelets!  They may have needed directions to the perfect operating room!  😂

Surgery for my sudden hernia  went well.  My hernia was bigger that he thought.  He also found a weak spot in the wall above it and fixed it as well.  My tummy feels like a road grater
went across it, and the mad sewing club stitched it up!   I will have to slow down and be extremely careful For several months. 

The Dr thinks it Is very possible that my Lupus and Connective tissue disease that might have caused the hernia.  He put mesh in both places and my body as to ‘grow into’ the mesh.  Sound like fun?  Nopers?  I didn’t think so either.  We will see... 

Finally, he cut above and below my belly button.  So essentially my belly button looks like this - yes, I drew it!  The lavender is super glue!  

Let the healing begin!

Sucker Punched

I am disappointed.  
I am mad.  
I am discouraged.  
I am sad.  
I am disheartened.

Friday I am having surgery again.  I have a pretty decent sized incisional hernia that has grown significantly since it appeared at the beginning of our vacation.  I didn’t tell a soul, not even Steve, until late last week when I knew it could not be ignored.  I wasn’t going to mess up anyone’s vacation.

I am... broken.  
Again.  
Or... is it still?  

I am “unreliable” someone has stated.  In my previous life, that would have never been a thought.  

In my present life, my BODY is unreliable.  I have no control over my ICL, hypogammaglobulinanemia, Sjögren’s, Lupus, sarcoidosis, CFS, and connective tissue disease.  

I think I am on even keel and I get sucker punched.  Like today.  STAT surgery.  STAT IvIG so I can even HAVE surgery.  

The depression is sucking me in.
Again.  

But I am strong.
I can do hard things.
I will, once again, do this; 
with Red’s help,
with God’s help...
WE can do hard things.

Prayers welcomed. 
I have big plans the second week in September.  Would love to keep them -even sitting down.

No comments needed.  Save them for prayers.  Thanks.  ❤️

If You Want to Know How Fast Your Month Passes...

... just pay attention to how often you ‘top up’ your pill containers!  

So the next thing you are going to say is that is WAY too much medicine.  I agree, but since I shoulda been dead a few years ago we are all doing something right, right?

And just to reassure you, some of those prescriptions are actually prescription vitamins; folic acid, D,  diflucan (which because of ICL I take daily), and 2 others.  The ones on top of the others are the refills, so that cut cuts it down as well.  Yes, still too many meds, but this is how I have to live my life - cautious and preventive care.  

I do watch the meds that are given to me.  I don’t take everything the Drs toss at me either, but I do want to live and with ICL, there are constant prophylactic antibiotics and other medicines  that I take to ward off the bad stuff that I am susceptible to

Today I found out I definitely have a hernia.  Not small, but, a big, must take care of now hernia - unless tomorrow’s Dr says otherwise.  My Dr said right away.  The GI Dr visit is scheduled for tomorrow.  

Not.  Happy.

But alive.  So yes, I am happy.  Just not these circumstances.