Thursday, September 10, 2015

POEMS Syndrome

I'm rather behind on the updating and I have so much to say!  Our home school started back up the first week of August, so there hasn't been a lot of time for blogging.  I was also waiting on more internet data so I could upload some pictures of our trip in July to Colorado.....

It was a fun summer that went by super fast - as always, but I also think we're wishing our days away waiting on our home construction to begin.  I think we may be seeing the reason behind the holdups, but that's another story.

I'm not sure what to update first, so I'll just go with the "another story" for now.

Two years ago, during my mom's sickness, Brad was prompted to go have a physical.  The physical included lab work that showed he had thick blood, also known as polycythemia, and low B-12.  At this point, he was referred to a hematologist who did extensive testing, up to and including a bone marrow biopsy.  In the end, the doctor determined "he just has thick blood" and placed him on a daily aspirin.

Soon after, he started developing numbness in his feet and lots of swelling in his legs and ankles.

As a child, he had taken half of a baby aspirin and almost died, so the daily aspirin got the blame for the above symptoms.

He was sent to a neurologist who after more testing, up to and including a spinal tap, determined he had CIDP.  He was placed on prednisone for a few months with no improvement.  He was then given a five-day cycle of IVIG with some improvement, so he has continued monthly cycles of this up to this time.

After that initial cycle, he pretty much kept on an even keel.  But then we added weight loss to the mix, and blood clots, and hypothyroidism.....

He did a little research and discovered that Johns Hopkins in Baltimore has neurologists there that specialize in treating this disease.  He just wasn't getting better, so I encouraged him to make the trip. Three weeks ago, he went up there for his appointment and was very impressed.  They spent a lot of time with him and told him they would be in contact soon.

In the meantime, a friend of mine saw a post on Facebook about him going to Baltimore and the reason why he was going.  She contacted me quickly saying that she wanted to talk to me about some information.

I did and learned that she has a friend who has been in ICU at Emory for the past 10 weeks.  She had similar symptoms as Brad and had been wrongly diagnosed to the point that she was no longer able to walk when it was finally discovered what she had, which was POEMS syndrome.  She strongly encouraged me to research this, which I did as soon as I could get to my computer.  I was overwhelmed.  There was no way he didn't have this.

We talked about it and decided we would discuss it with his neurologist at his appointment that week - actually last Friday.  It was as if we turned a light bulb on for him.  He agreed that it was definitely worth looking into.  He called Brad's hematologist that very morning, and the hematologist called Brad rather quickly, setting up an appointment for the following Friday.

It was a relief to feel we were all on the same page.

Then yesterday, he got the call he had been waiting on from Johns Hopkins.  Apparently the doctor he saw there was suspicious of POEMS and actually did blood work for it but didn't mention it - I guess not wanting Brad to worry needlessly.  He told him that he did indeed believe he had early stages of POEMS and that he needed to see a hematologist for treatment as soon as possible.

We are so thankful he made that trip.  Now we can go to the hematologist tomorrow seeking treatment instead of a diagnosis.  It's a little scary, but I've read a lot about this disease over the past couple of weeks.  There doesn't seem to be a complete cure, but it does sound like the symptoms can be treated successfully a majority of the time.

We are also thankful for friends who care enough to speak up when they have helpful information.  Otherwise, when we got that call yesterday, we may have been thrown into a panic, but thankfully we were prepared.

In the research, we have learned that POEMS is often misdiagnosed as CIDP, so if a search for CIDP or POEMS brought you to my blog and you are having symptoms that are not getting better with CIDP treatment, do a little research and see if you might fall into that category.  It is important that POEMS be treated sooner than later.  Unfortunately, most people are at the point of not being able to walk before receiving the diagnosis because POEMS is such a rare blood disorder that it is often overlooked.  Hopefully as more comes to light about this disease, that will soon not be the case and more people will receive treatment early on before things get out of hand.

The IVIG Brad has received over the past several months is what we think has kept him on the "even keel" I mentioned earlier.  Without that, I truly believe he would not be walking right now.  This is something that he will continue as part of his treatment plan - that much we know - but we are looking forward to getting the rest of the story tomorrow.

In the midst of all this, we've seen God's hand working and protecting through it all.  For that, I am most thankful.

I'm also thankful for UPS and the great insurance provided by that company.  Also, the exercise involved in his job has been a source of therapy.  It seems that those with sedentary-type jobs or lifestyles seem to succumb to the disease at a faster rate.  During the past two years, being active has been a great source of help.

In a nutshell, we both feel relieved to have a diagnosis, and tomorrow can't get here fast enough.

Tuesday, August 4, 2015

House Update

So......what happened in July in regards to our home construction?


That about sums it up!

Thursday, July 2, 2015

House Update

I had hoped and prayed that June would bring progress to our home construction, and though there are no visible (picture worthy) signs of building yet, indeed there was progress!  

**We got our survey!!

**We got our home plans!!

**We met with our builder, and he's currently pricing everything out!!

We were met with a slight glitch in getting the property put in our name just yet (which is something the bank will definitely require), but we're hoping that everything will come together at the right moment and construction can begin.

In the meanwhile, I search Pinterest. :>)

This delay has been good in that it has given me time to really think what direction (decoratively speaking) I want our new home to go in. 

I'm pretty settled on a mixture of farmhouse/craftsman.  I don't want anything that is "trendy" but more like "timeless."  I'm looking for character and adding lots of old in with the new (I can't get enough of the show Fixer Upper, and that is often what they do, and I LOVE it!).

I've already found an old screen door that I plan to start refinishing soon in hopes that it can be used as a laundry room door.  My dad also has some old heavy wood doors that were taken out of an old home that I'm hoping we can incorporate somewhere.

We've decided to go with a metal roof - which is something I never thought about considering, but after hearing our builder give his recommendation and looking over some photos and eyeing every house with a metal roof that I see as I'm traveling down the road (LOL!), it just seems like part of the perfect blend for the exterior I have in mind.

We're also exploring the idea of concrete countertops.  They seem like a good option for a solid surface yet are a little easier on the budget......

That's all I can think of for the moment ~ now let's see where July takes us!

Thursday, June 11, 2015

Experimenting with Community Supported Agriculture

A few weeks ago, I saw an Instagram post made by a friend who was displaying her huge weekly share from her recently joined food co-op.  And it got me thinking.

I've looked into these co-ops before but never tried one out.  I decided it was time.

For several days, I researched all the local co-ops and CSAs (community supported agriculture), and I found a CSA that was not too complicated to join, had a super easy web site for placing orders, had some open spots available, and was nearby (actually turned out to be closer than I thought....)

In case you haven't notice, I'm one for experiments. 

So far, I'm enjoying this one - it's fun to open up the box and see what's inside each week, but in the end, I have to decipher if I'm saving money or not, which is the ultimate goal.

I joined for four weeks' worth of deliveries.  Along with the weekly fruits and vegetables, I ordered a month's supply of meat.  Technically, it won't last a month, but it will go a long way.  This included 20 pounds of an assortment of meats --- whole chicken, beef roast, pork chops, bacon, Italian sausage, beef filets, New York strips, wild caught Georgia shrimp, ground beef....

I also receive a weekly delivery of raw cow milk.

Each week in my fruits/veggies box, I have received at least one or two items that I would typically not buy, so that brings a little variety to the table.  :>)

The first week, I received a vegetable that I'd never heard of ----> Kohlrabi. 
So I did a little Google search to find out what to do with it.  I used the recipe here to create the shredded kohlrabi patties.  It didn't taste like anything I had tried before.  It wasn't bad, but I don't see it becoming my favorite vegetable anytime soon.

In this weeks box, I received peaches and blackberries, broccoli, zucchini squash, cucumber, kale, parsley, lettuce, and beets.  The only way I've ever cooked beets was last Christmas when I used them to color my red velvet cake.  Not sure I want to go to that much trouble here in June, so I'm going to have to Google once again to figure out what to do with them.

Last week's surprise or unusual inclusions were shiitake mushrooms and a rutabaga.  Mushrooms are pretty versatile but don't think I've ever cooked a rutabaga.  As part of last night's supper, I cubed up the rutabaga along with a turnip from another week's box (they looked alike so I figured that was okay), covered and boiled them in salty water, and then mashed them up together with added butter and some bacon left over from breakfast.  Not too bad.

I do like the variety of vegetables I'm receiving, and I've yet to use my entire box of produce in a week before the next one arrives. 

If you're wondering about costs, it was right around $400 for the month for the meat, fruits, veggies, and milk.  Our food budget is around $150/160 a week, so that leaves around $50 to pick up extra needs during the week. 

Another plus to this adventure is it turns out the manager of this CSA lives about a mile from me, so she just drops off my weekly order on my front porch on her way home.  Now that's hard to beat.

Next week will be week number four, and I'll have to make a decision on whether to continue or not.  With my dad's garden starting to come in, local produce stands having such good prices and healthy-looking items, and not to mention the fact that I recently tried out Aldi, I may have to take the experiment in a different direction.

Wednesday, June 10, 2015

The Gift of Family

Yesterday was the funeral for my sweet Uncle Frank.  Suffering with cancer, his journey at the end was like my mom's in so many ways.  I was especially sad for my aunt and cousin, but I'm sure everyone had a touch of relief that he was no longer in such terrible pain.

Uncle Frank turned 82 this year and was the oldest of 11.  One brother died at birth, and the rest have remained to this point.  I see that as a blessing that they have all had one another for so many years.

We do not live near most of the family and some of them I have not seen in years.  Actually, a lot of them have never met my youngest two children....and that's a little sad.  I mean, Amelia is almost 10....  There was lots of talk of planning a reunion, so I'm hoping that will happen and that situation can be remedied.

But yesterday, as I sat studying those who were there, I realized what a bunch of humble and gentle men and women these people, my kinfolk, are.  They got it honest.  My grandmother definitely had a quiet, gentle spirit.  One of those people that it's hard to imagine she ever raised her voice.  Not that I think she never did - I mean, with that many kids, how could you not? Lol!  But you never know.  Maybe she did, maybe she didn't.  Overall, though, Proverbs 31:26 is a verse that comes to mind when I think of her:  She openeth her mouth with wisdom; And the law of kindness is on her tongue.

All these children have been successful, hardworking individuals - owning their own businesses, getting college educations, joining (or drafted into) the military, working hard for many years and retiring from large companies - and most doing so while farming and raising plentiful gardens.  Even in success, I don't think any of them have forgotten where they came from.

It was reiterated yesterday what lowly means they all started from.  The youngest brother who is a minister, Uncle Merle, helped with the funeral, and he spoke of how after some of the older siblings had left home, they all looked forward to seeing them come back to visit.  Being the oldest, Uncle Frank was the first to leave home, and Uncle Merle told stories of how he sent money to them and also purchased their first television.  They were one of the firsts in the community to have a television, so that was a big deal!  My daddy (#4 in the lineup) was still living at home at the time and remembered that as well.  My uncle went on to say how meals may have been small any other time during the year, but they always looked forward to the holidays when there would be plenty because of siblings coming back home and because of what they would bring with them.

Family is so important, and I realized yesterday how proud and thankful I should be to be a part of this one.  I hope in the years to come that I get to make up for lost time and get to know my long distance uncles, aunts, and cousins even better.  I look forward to hearing more stories like those above - in a happier setting of course. 

One of the things I'll remember most about Uncle Frank is how he liked to pick on people.  With him being one of the few siblings that lived relatively close by, we spent many Sunday afternoons at his home when I was growing up.  I especially remember how he loved to ask my sister, "How's your love life?"  She would usually answer, "Fine, how's yours?"  He'd usually have a snappy comeback, and I think this dialogue repeated itself on many occasions.  (I think she was happy when she got married and didn't get asked that question anymore.) ;>)

Most important is the fact that so many of these family members have a strong faith in God, and I believe my Uncle Frank did.  I love the peace that brings, knowing this is not the end. 

Rest in peace, Uncle Frank. 

Friday, June 5, 2015

Melbourne Beach, FL

A few months ago, a friend invited me and my children to go with her and her children to "the beach house."  Our hard-working husbands would not be able to go, but it sounded like a great way to celebrate and relax after a productive homeschool year.

Almost three weeks ago, we loaded up two mini-vans and headed south.  Indeed, it was a very nice getaway.  Short but sweet.

The older beach house was quite charming with lots of character.  From the back door to the waters edge was just a few steps, and my view from the bedroom I was sleeping in was amazing.

The children enjoyed playing with their friends ~ Madison and Cari both brought along a friend.  No loneliness or boredom issues on this trip.

There was no pool, which was a first beach experience for my crew - generally more time is spent in a pool than the ocean - but they (me, too) spent lots of time in the water, riding the waves, jumping waves.  But most of my time was spent relaxing on the beach, reading A Praying Life, which was time well spent.

A very nice way to say....."Hello, summer ~ so happy to see you again!"

Jeremiah 31:35
Thus says the LORD, Who gives the sun for light by day And the fixed order of the moon and the stars for light by night, Who stirs up the sea so that its waves roar; The LORD of hosts is His name:
- See more at:
Jeremiah 31:35
Thus says the LORD, Who gives the sun for light by day And the fixed order of the moon and the stars for light by night, Who stirs up the sea so that its waves roar; The LORD of hosts is His name:
- See more at:

  Jeremiah 31:35
 Thus says the Lord,
who gives the sun for light by day
    and the fixed order of the moon and the stars for light by night,
who stirs up the sea so that its waves roar—
    the Lord of hosts is his name:

Jeremiah 31:35
Thus says the LORD, Who gives the sun for light by day And the fixed order of the moon and the stars for light by night, Who stirs up the sea so that its waves roar; The LORD of hosts is His name:
- See more at:

Tuesday, June 2, 2015

New Home Progress

Unfortunately, under the subject "New Home Progress," there's not a whole lot to report.  We've found ourselves at a standstill, and I'm sure there's a very good reason for that - that we may or may not see down the road.  Maybe Brad and I are in need of more patience, and this is a good tool for that? (I chuckled as I wrote that.  Who isn't in need of more patience?)  Maybe something we need at a certain time is going to come at a better opportunity later than sooner?  Who knows.....but I pray it all starts coming together real soon.

In the meantime, here's what April/May brought about ----->

We had the land surveyed and we're waiting on the surveyor to return the work on that...... (patience....ugh)

and our architect is almost finished with drawing up our home plans.

We went ahead and had the house site cleared - along with a back yard area - and that's the biggest visible sign of progress that has done my heart good.

I had some "before" pictures, but when I downloaded them to Picasa, the program crashed - deleting the photos - and I had already deleted them from my camera that's that.

I pray June is a month that brings more progress.  I feel like, weather cooperating, the process should go fairly quickly once we get started.  We've chosen a very simple house plan - almost a square (so I guess that makes it a rectangle - LOL!) - with a basement that will be partly finished and the other side used for storage.

Our plan is to utilize every square inch of living space - unlike our previous home (my uncle did our sheetrock for us on that home, and he commented that it was one of the most cut up homes he'd ever seen - he wasn't lying).

As we wait, I'm trying to pare down our "stuff" even more and read about and be encouraged by others who are doing the same.  I've realized that I'm one of those people who have held on to some things just because of feeling guilty about getting rid of it.

"Thank you" to whoever told me it was okay to get rid of that stuff and to not feel guilty about it. 

So there you have it.  I'm very thankful and excited about this opportunity to simplify our lives in different ways, and I'm looking forward to when we reach the end of this season to looking back and seeing God's hand in the process.  I certainly did 16 years ago - the last time we did this - and I have no doubt we'll see it again. :>)