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.

Craft Show 181 Ranch

I can sew all day long.  I can break as I need and walk right back in to my sewing after a rest.  I have sewn and fallen in love with so many things that I make multiples!  What the heck am I going to do with all of them?  I only have so many friends and family... so away in a tote for ‘someday’.  My partner in crime, Sharon, was the same way....  so both of us (very broken) buddies decide we will sell our wares at a very large craft show in December! 🎄  😳

I have been playing with ways to market the stuff.  Yes, this far in advance!  I also work the fair in September, so I am preparing for both.  Anyhoo, Ziplocks seem to work well for displaying (and keeping dirty hands off) and I put them on the clip slacks hangers knowing my handsome hubby will have to help us come up with a display.

I started looking at those hangers online as I needed some more - man they are expensive!  Then I happened across someone on our Facebook Market Place selling a huge box of those hangers for $30.  Steve took me to get them and we ended up with a very cool display from the same place that will work for one wall - also for $30.  He can use this same pattern to build two more and space those dowell rods further apart to accommodate our bigger things!   

This is what I ended up playing with today!  Isn’t it awesome?!?  Go us!  🎉

Now, please pray Sharon and I both stay well so we can do the craft show!  😂

Climbing Mountains

But for how long?

Day 2 of OshKosh.  My belly button fell out!  😳

Now stop laughing!!  😂😂

I have had a long struggle back from my bleed.  I am doing ok, I just don’t have the stamina that I did even before the bleed. 

Not wanting to spoil the trip in Wisconsin for everyone, I kept quiet and did the best I could, but it was not a simple task - as I not only had less energy than normal, but I felt weird as well.  It felt like some things “fell” inside and were displaced.  I finally called the Dr yesterday and will go in Monday.  We think it is a surgical hernia, which, if it is, will require more surgery.  😢  I have no energy for that.

I also have a hip that gives me trouble, and has for many years.  I started thinking it was time to get a steroid shot in it - as was suggested many years ago when I went to the orthopedist.  He said I had very little cartilage but I was too young to do anything but a steroid shot... how long ago was that, anyway?... Let’s see... Jeremy was two... or three... and he is now 36...  Yep, it may be time to see about that shot... 😂  Appointment made for a week and a half away.  Oh, and with the blood disorder, I don’t think I can have a steroid shot either.  Will beg Dr #1 before going to Dr #2.

I constantly have physical ‘issues’; lupus causes problems with my kidneys and with my connective tissues, so the hip is likely many years of lupus.  The blood disorders, the sarcoidosis, the Sjogren’s, the lupus... all taking the fun out of my life.

I try to stay strong and healthy, to not talk about my physical life, it always seems to come back to it... because... this IS my life... the mountain keeps getting higher and the desire to climb is dwindling.  In fact, I very nearly don’t give a damn.

My poor husband.  He is so strong but I hate that so much falls on him.  I love him for everything he is.  He does not deserve me and my struggles.  It is a sad state of affairs;  I feel guilty and he continues to be my rock.  We do this together, but he gets the raw end of the deal.

The reality is it gets harder every day, for both of us.