It's Personal...

All the Christmas decor is pretty much put away by today. I packed things up in temporary plastic tubs because it's just too cold to go out and rummage around in the garage (my seasonal decor boxes are in one area) I replaced the Christmas things with "winter" things, because, well, it's winter, and I like winter when it's not 0 degrees outside. We're having an early burst of super cold, and I'm wandering around the house with multiple layers of long underwear and thermal/fleece things. Warmth and comfort, I'm all about that right now.

These 2 pics are of my old door in the kitchen sitting area right now. I love that old oval frame and the bird paper collage is from several years ago when I was feeling a bit more creative. I love playing with paper, and I'm hoping I can get a little bit of my creative "self" back soon. I'm going with a more neutral color palette in here for January. February will probably be a different story, but right now I thought since I love neutrals and various shades of white and cream I'd see what I could come up with.

Just so you'll know, this post contains some personal stuff I have been putting off sharing here on the blog. I mentioned it in my last post, and because it's now time and I have the head-nod from my kiddos, I'll bring you up to date. It's a long post, but important to read if you're suffering with any undiagnosed illness.

This past several years has not only been difficult because of my health stuff, but also because both of my sweet girlies have gone through deeply personal tough stuff as well. None of it was spur of the moment, but building throughout their marriages.

 Alyson, our younger daughter (on the right) divorced after a long separation, and then remarried a wonderful young man over a year ago. Normally I would have been sharing all this and showing pictures of their wedding, but Aly has been sick with essentially the same sort of AutoImmune problems I've been having for many years. Her symptoms just manifested in different ways. We always hate to see our kids go through hard health issues, and would trade places in a heartbeat. Thankfully, because I had been endlessly researching AutoImmune disease because of my own health situation, I was able to give her some information as she navigated her way through multiple doctors and medical tests. She's much better this last month, so I think she was able to enjoy Christmas without feeling like she'd been totally beaten up.

this Christmas

Our older daughter Erin had been with her husband for 20 years, including the time they'd been together in college. You see little by little, year by year, a person change. You try to communicate, but they are silent in some areas and you know there's a wall there that they are not letting down. Things you do not know because it's too difficult for them to open it all up. Then when it all happens you can look back and see the signs, but it's no less traumatic or gut wrenching. I can't get into the details but  there were no alternatives and Erin made the break by herself... and God. Both our girls are very spiritual young Christian women so they didn't make their decisions lightly. She is good, she has a great job so she can take care of herself financially, but the worst hurt she has suffered is the fact that she's had no children and that has become a desire of her heart. She knows at her age it will be more difficult, but she feels she needs to pursue this or she will regret it. So we will see. Just don't be surprised if one day I say with great Joy, "Hey everyone, I'm going to be a grandmommy!".

(photos from 2012 New Year's Tree)

Just this morning I was looking back through one of my posts that I was sharing a health update from October of 2016. Seems like forever ago. So much time of things not being right with my health, so many doctors, so many tests, so many procedures, so much money. It makes me angry in some ways because I feel like I've lost so much precious time, opportunities, and experiences. We've not been able to travel, heck, I haven't even been able to do much of anything, and it's been difficult for my husband who is a man with a lot of patience.

 Just to recap a little... In May of 2016 I had a heart procedure, called a CTO, short for Chronic Total Occlusion, which opened up my original arteries before my heart bypass surgery of 2004. I have a genetic type of cardiovascular disease which causes the arteries around the heart to become hardened and calcified at a young age. My dad had it, and so did my brother, both of whom who have passed due to heart attacks. My first heart attack(s) was at age 49, that left me with a lot of heart damage, and no clear answers as to why this had happened even though I was thin, ate healthy, and exercised. Stress was a big culprit, but who doesn't have some sort of stress in their life?

So fast forward to the CTO which literally has saved my life, but also caused so many issues. Just a few days after the procedure where I lost a lot of blood, I started feeling like I had the flu. My anxiety level was over the top, but I chalked it up to a ton of meds and the 4 hour procedure with a boat load of Heparin (industrial strength blood thinner). I felt worse and worse and my neck started hurting. I gave it time, but before long I started having the headache from hell, which would NOT go away. Not with all manner of pain killers including Valium, Tramadol and Oxycodone. I was dizzy and off balance most of the time. I struggled through, thinking that it would eventually go away... and I started seeing doctors. First a new GP, then a cervical spine specialist, then a Neurosurgeon, and Neurologist, my heart doctor, etc. We did all the typical tests, including an MRI and CAT scan. The MRI showed I had "white lesions" on my brain which are indicative of many diseases including MS (which runs in my family). They were tiny "micro bleeds" also known as ischemic strokes. We don't know when they happened, but probably during the CTO procedure when my blood had been so thin. That was and is scary, because I could tell my memory was fuzzy and I couldn't think of words or ways to express myself. And by the way, I'm trying to blog through all of this because I really need to have something normal to hang onto.

So a year goes by since the heart procedure and the headache doesn't lessen. I'm having more and more problems including sharp pains in my skull, behind my eyes, ears, my hands and wrists started being so painful I could hardly cook or iron. The pain pills maybe dulled it a little but not much. I started having ulcerations in my eyes, nose, any and all places where there were moisture ducts. My lymph nodes started swelling and I felt like someone was literally strangling me, while my neck and shoulders were painful and swollen. Knots in my Lymph nodes under my arms and all the while I was not getting much help except the occasional blood panels drawn and tests looking for possible illnesses.

I had started research as soon as I saw my first specialist, when cortisone shots in my neck weren't helping. There are a few reasons to have my symptoms, trauma, bacterial, viral or autoimmune. The first 2 were ruled out. I saw a young doctor who was a Rheumatologist, but she was Vietnamese and she had zero experience and unable to communicate well. She wrote me off because she had been fired and didn't want to be bothered trying to figure me out. That left me on my own again, even though my numbers were borderline Rheumatoid Arthritis.

In June of 2017 I was a worn-out mess. I was constantly in pain and not fun to be around. One Sunday in particular I had not eaten all day and my husband brought home a deepdish pizza. I was starved. I didn't usually eat bread since it made me bloated and feel yucky, but that night I had a few small pieces. In the morning I was in so much pain that I thought I had an aneurysm in my head and called my GP for help. Sorry they were booked, they'd get me in later in the week. I thought about going to the ER, but decided to try and think about what had been different over the weekend than before. It was the pizza.

Through all sorts of diagnosis and plans to discover what my problem might be I had started researching Gluten and AutoImmune. I shared a lot of information HERE, so I won't go back through it, but please read that post, if you or someone you know has ANY kind of Autoimmune illness (including Hashimoto's Thyroiditis) or chronic pain. Gluten is a known cause of inflammation, and now I realize that it was probably at the base of the inflammation that has caused my own and my family's heart problems. Inflammation can come from many places. Sugar, bad fats, high cholesterol, alcohol, but it can also come from food allergies and among other illnesses like diabetes. AutoImmune disease can come in what they call "flares"; some kind of trauma can act as a trigger to make your immune system go crazy. I think it was the CTO procedure.

Eighteen months after it started, my headache has now gotten so much better, it's not completely gone, but getting better. The other symptoms have basically subsided also. The longer I've been without Gluten, the better I've felt. It's called Gluten Ataxia when you have symptoms within the Central Nervous Symptoms, and it's what happens when someone has undiagnosed and untreated Celiac Disease. (If you want to read a really scary story, about Gluten Ataxia, read this when you have time.) It's important to be tested for the antibodies against Gluten which cause Celiac Disease, because once you're gluten-free your tests will not be accurate. My doctors all were either clueless or not believing my head and neck pain were anything other than standard cervical spine problems. I avoided CS surgery because a surgeon couldn't see my headache coming from where my spine problems were located. How horrible to go through that and still have the headache from hell!

There are times I feel a little sorry for myself because I can't eat store bought baked goods. And right now I'm also off dairy, corn, nitrates and eggs; at least until I can get past the headache and be seen by another Rheumatologist in the early Spring. Believe me, you couldn't pay me enough money to eat a Twinkie or cupcake. My joint pain is much better, but there is still some aspect of autoimmune that is in my system and causing problems. There are over a hundred known Autoimmune diseases and conditions, many of which have overlapping symptoms. AI is on the rise because our foods are being tampered with. GMOs, enriched flours, additives, chemicals, dyes and sugar substitutes are all causing our bodies to malfunction and rebel against itself, hence "auto-immune" (our bodies fighting and attacking it's own tissues).

OK, sorry this has been so long, but it's way overdue. I've waited to talk to you about my health for awhile, because I wanted to wait for more improvement. It's very slow going, but enough to know the cause of most of it. One big problem is that most doctors are not educated about AI and Gluten issues, so they discount it. More than one doctor has patted me on the head and changed the subject.

Thanks for taking the time to read and actually care. One thing has been tough, and that's that so many blogging friends literally dropped me, took me off their blog rolls and stopped visiting.

Many years I did a post on "My Word for the New Year" or something like that. I don't have "one word" this year, but I know that I'm just supposed to keep going; doing what I've been doing, and I'm trusting God to do the rest. If you don't feel like you can do it alone, and you want to give up, stay strong and keep fighting, stay informed, love your family, believe that good things are coming your way. Trust God and expect Him do miracles in your life and relationships.  He will!

Sending love and Blessings,


joining in here:

The Scoop at Worthing Court
Wow Us Wednesday at Savvy Southern Style
Share Your Style at 21 Rosemary Lane
Share Your Cup at Mrs. Olson's
Favorite Things Thursday at Follow the Yellow Brick Home
Feathered Nest Friday at French Country Cottage