Tuesday, August 21, 2018

First Day Of School

I can't believe that I have a kindergartener and a 5th grader.  They have been enjoying this past week of school.  Olivia is at a new school, the 5th-6th grade Intermediate building and Abigail is at a new school. . .Olivia's old elementary school.  Abigail even has Olivia's previous kindergarten teacher.  We LOVE her and are so happy she has Abigail this year.  Olivia seems to really like her teachers as well!  Hoping for a great year!

My 5th grader 

My kindergartener

Friday, July 27, 2018

Bumps In the Road

I met with the rheumatologist this past week and he started me on Plaquenil, an anti-malaria drug/ DMAD (disease modifying anti-rheumatic drug.)  It is very slow acting and I may not notice if it's even working for 6 months or so.  It is supposed to help with fatigue (how long have I been complaining of that?) joint pain, inflammation, etc.  I am not myself anymore.  I read through the previous posts over the years and I don't even recognize myself.  I've gained 25+ lbs, I'm irritable, I've grown even more tired, I take a crapload of meds, I am having memory issues, etc.  I actually sat down to write about how I was diagnosed with Sjogrens and I looked back to find my last post was about just that.  I just don't remember.  I don't remember how to get places that I've been to 6-7 times.  Then, when I get there, I don't remember even being there before.

Everything got really bad about 5 years ago when I started getting migraines.  I was sent to a neurologist who has done nothing to determine the cause of my headaches. I've tried all of the preventative meds along with Botox injections for migraines with no relief.  I get by with saving up my Imitrex because I only get so many per month and sometimes my headache days exceed my pills. I had a brain MRI that showed white matter abnormalities (WMA) and they blamed it on the migraines.  I still don't know why I have almost daily headaches and frequent migraines.  My rheumatologist now says that the WMA can be a neurological manifestation of Sjogren's, but I don't know what that means.  My blood sugars have been out of whack for awhile and I was sent to an endocrinologist.  My thyroid is enlarged with nodules and if one continues to grow, I will be having my thyroid out next year.  I was put on Metformin and Synthroid.  My restless legs have continued to bother me, but I don't know the cause.  Then my resting heart rate went to 120-130 and I had to go to a cardiologist who put me on a beta blocker.  All the while, I still have no idea why my heart rate increased. Because of my fatigue, I was sent for a sleep study a few years ago that showed moderate sleep apnea.  I had to start wearing a CPAP at night that I hate.  I have random, severe piercing ear pain and dizziness and I don't know why.  I don't know why I've gained weight and why I'm so bloated at times that I can't breathe.  My thyroid levels are normal, they say.  I just need to go on the whole30 diet or paleo or low fodmap or AIP or keto or low histamine diet, etc. Most days I don't even know what to eat and I'm too tired to think about it.  About a year ago, I developed horrible insomnia.  I can get to sleep most nights, but I can't sleep past 3 am. Most days I survive on 3-4 hours of sleep.  It's a good night if I can get 6 hours.  I've told doctors and they've, of course, prescribed more meds.  The meds  help me go to sleep, but not stay asleep.  And I'm left not knowing what has caused it.  My diagnosis of Sjogren's was actually a welcomed relief because it is the first answer that I've had in many, many years.  Whether it can explain everything. . .I don't believe so.  But, it's a start.

Anyway, I don't mean to go on and on and to be so negative.  I just needed to vent tonight, I guess.  And this is the reality of life.  Most people struggle.  They just don't let on how much.  I pray every day that this will work or that will be the answer I need. But, I often come up empty handed.  Please, if there are any of my prayer warriors left. . .pray for me.  Pray for my girls because they need a strong, healthy mom.  They deserve that. . .not whoever this is that I am.  Pray for my husband and pray for my family and friends around me.  Pray that I get from them what I need right now and that they know how to help.  And then say another prayer for my girls again because they deserve everything that is good and wonderful in this world.

Okay, well, I'm going to go to bed in hopes to sleep tonight.  I may need to vent on here again more frequently.  It sure helped me through a dark time years ago.  We all go through bumps in the road and my road is in dire need of fixing and repaving.  Thank you, friends, for listening.  I'll get through this in God's time. .  

Saturday, July 14, 2018

Sjogren's and Bicycles

After literally years and years of doctors ignoring me, I was finally listened to.  Strange that it was an ENT that finally listened.  I've had fatigue and just a sense of being unwell for most of my adult life.  I'm sure I even blogged about it.  About 5 years ago, I developed migraines and everything snowballed from there.  Doctors would check for one thing and when that came back normal, I had to wait 6 more months to go back in for them to check another, etc.  Some of my test results came back normal, but some would come back abnormal, but they would still dismiss it.

About a year ago, I developed this strange thing called geographic tongue. Doctors would tell me that it is a benign condition, but it was like my body screaming that something wasn't right.  Around Christmas, I got a sore, inflamed throat that didn't go away for 4-5 months.  I took multiple rounds of steroids, antibiotics, antifungals and it didn't help.  My dr finally sent me to an ENT.  He did some bloodwork and found my CRP and sedimentation rate was high.  Funny thing is. . .they've been high for a long time. . .someone just paid attention.  They would tell me that it shows inflammation in the body, but they wouldn't investigate where that inflammation was coming from or tell me how to get rid of it.  Anyway, my ENT sent me to a rheumatologist.  One of the blood tests that they ran was for Sjogrens antibodies because my ENT suspicioned Sjogrens.  They came back negative.  Thankfully, instead of dismissing it again, they sent me for a lip biopsy.  In about 30% of people, the antibodies don't show up and a salivary gland biopsy is needed.  I had the lip biopsy on Wed and yesterday I was diagnosed with Sjogrens Syndrome, an auto immune disorder where your body attacks your salivary and moisture producing glands.  Not only do you experience fatigue, dry eyes, dry mouth. . .but also joint pain, neurological issues, dysautonomia, irritable bowel, constipation and it can go on to attack other glands in the body.  I have problems with my thyroid and kidneys and wonder if it is all related?  You are also at an extremely high risk for lymphoma.

So, not sure where I go from here.  Usually if you have one autoimmune disorder, you have more.  They usually start people on an anti malaria drug that is supposed to help.  Time will tell.  For now, I am grateful that a doctor finally listened to me.  I can't tell you the relief that I feel and the hope that I haven't felt in a long time.  I do worry about my girls as auto immune disorders are hereditary and now my girls have it on both sides of the family.  My mother-in-law has lupus.  

In other news, both girls are now riding bikes!  I told them when they could both ride, I would get myself a bike.  So, I bought one yesterday.  Right when we set out on our first bike ride, however, Abigail crashed pretty badly.  Blood was just dripping from her knees.  After spending a few hours recovering, we finally went on our bike ride and Abigail fell at the end and banged up her another knee.  Needless to say, we invested in knee pads.  We have to tell Olivia not to be so cautious and afraid, but that Abigail needs to have a little more fear.  Ha!  She's kind of a daredevil and rides way too fast.  But, it has turned into a very bicycle riding summer. . .very fun!

Saturday, June 30, 2018

My Signs

As you know, about a year ago, I discovered that I love to paint.  I've been busy making paintings and signs ever since and have learned so much this past year.  Last month, I became a vendor at a local craft store and I am selling my signs there as well as from my facebook page Show Me A Sign Designs.  I've loved the creative outlet and hope to paint for many years to come.  Here are some that I have made recently:

Wednesday, April 25, 2018

More Pics

Olivia and her best friend, Aubrey

Abigail and her best friend, Selah

Spring School Pics

Spring School Pics

Hard to believe that in the fall, I will have a 5th grader and a kindergartener.  Crazy!

Sunday, February 18, 2018

Recent Pictures

Here are just some recent pictures of the girls.  Abigail is 5 years old, Olivia is 10 years old (and Daisy is 5 years old.)

Friday, January 5, 2018

Show Me A Sign Designs


Happy New Year

Update on everyone. . .

Olivia - She is in the 4th grade and doing well.  Next year, for 5th grade, she leaves the school that she has been at since preschool and has a lot of anxiety about that.  I know, however, that she will surprise even herself and do fabulously.  She still deals with gastroparesis (delayed stomach emptying) and is on growth hormone injections.  She started those this past summer and finally made it past 50 lbs for her 10th birthday.  She does have mild autism and adhd, but to me she is just Olivia.  I couldn't (nor would I want to) imagine her any different.  She has the kindest heart of anyone I've ever met.  She loves cats and peacocks!  Her dream is to be a preschool teacher someday and her compassion and empathy would make her a great one!!

Abigail - She is in her last year of preschool and will go to kindergarten next year.  She is growing by leaps and bounds and has a very engineering/mathematical mind like her daddy.  She could do addition and subtraction problems all day (unlike Olivia and I) She also likes to build things and draw (and watch YouTube videos and tutorials.)  She once made a dress for Barbie out of a sock because she saw it on youtube.  Ha!  She loves horses and unicorns!  My girls are SO different and yet are the very best of friends.

Ryan - He is still working as a software architect where he has been for almost 10 years now.  I can't believe that he has been there that long (and we finally made it to our first company Christmas party.) I'm so proud of how hard he works to provide for his family.

Me - I started substitute teaching part time in November.  It provides me with a lot of flexibility and allows me to be involved at my daughter's school.  It is scary to walk into unknown classrooms and have 10 minutes to learn how the day will go.  Subbing has been kind of a fear of mine that I'm trying to overcome.  I'm still painting and making signs, but not nearly as much as I had been.  I do enjoy the creative expression and still have an etsy shop at showmeasigndesigns.  I've still been dealing with some health issues that my endo is trying to get to the bottom of . ..migraines, weight gain, fatigue, hair loss, etc.  Currently, he thinks it is due to my thyroid, but time will tell.

Anyway, that is kind of what has been going on in a nutshell.  I look forward to the blessings that 2018 will hold (even though that means I will turn 40. Ha!)