Tuesday, January 3, 2017

Forget me Not

I can't tell you how many times I'll be talking on my cell phone and I'll find myself walking around looking for my cell phone! One day, as I was talking to my daughter, I actually said, "I can't find my cell phone!" She said, "seriously mom, you're on your cell phone!".

There's a difference between being forgetful and having a 'brain fog' or 'lupus fog'.

Being forgetful is misplacing your keys temporarily, forgetting where you put the TV remote or walking into a room and forgot why you did it.

Having 'lupus or brain fog' is like having your memory wiped clean similar to a black board. You can set reminders on your cell phone, write sticky notes and write reminders on your calendar. However none of these are any good unless you remember to look at your reminders.

If you're like me, you can look at your reminders and have an alarm set to remind you of an appointment and still forget!

For me, if I'm not doing something on a consistent basis, I'm certain to forget to do what I'm supposed to do. As an example; my monthly infusion is usually on Mondays. This month it was scheduled for Tuesday (which was today). Guess what happened? I forgot about it! Last Friday I knew it was scheduled for today and I tried to reschedule because my kids are still on Christmas break. No one was in the office though. I remembered yesterday and tried to reschedule again, no luck. I got up early today just to call the clinic, but guess what? I totally forgot why I got up early!

My brain is fried. I'm not forgetful at all. I'm in a complete fog. I know everyone's birthday, I just can't remember to the fog out of the way to get their birthday cards out in the mail.

My migraines affect the fog terribly. Don't bother to tell me anything when I have a migraine, at least anything you want me to remember or to repeat or retain...basically anything. Migraines are the brains way of saying 'I need to decompress so please leave me alone.'

Its time for me to clear the fog and decompress....good night 🌜

Monday, January 2, 2017

Burned Out

As Christmas break is coming to an end I find myself not only mentally slowing down but physically slowing down. My brain can't seem to keep up with how fast my 7 year old talks let alone how fast he moves.

The boys have a play date, tomorrow,  with brothers they go to school with and they've been looking very forward to! In order to have a play date the boys were told to help dust and pick up their toys. There might as well of been a food fight going on in a ball pit. Honestly! I don't know why I bother to ask or tell them to help?! Maybe because I want them to be productive part of society one day? Meh...

I'm sitting in bed typing this, reflecting on today and wondering how we got from a terrific afternoon, watching 'Assassin's Creed' at the theater to 9:28 pm. When you're so mentally and physically spent it feels like you've been snatched right out of your body.

This is the part where you're supposed to listen to your body, tune everything else out and rest. Whether you sleep or meditate turn outside noise off and zone out.

Tomorrow is a new day~

Sunday, January 1, 2017

What I've learned through 2016

2016 has brought many lessons and challenges throughout the last 12 months. Having lupus brings daily challenges that you must face head on, If you procrastinate the cruel lupus challenges it's likely you'll end up in a precarious flare. Heading the signs of a flare on is your best bet and listening to your body is a lesson you must learn early on in your disease.

I've learned that lupus is now in my lungs and my function is now 54% with a capacity of 77% and my heart is affected with a mitral valve prolapse. This is on top of my central nervous system being affected, lesions on my brain and lesions on my corneas (caused from Sjorgens). I take everything in stride because there's nothing I can do about this but continue with my cocktail of medications my doctors have me on. I actually have never felt better that I do now. I have 1 bad week a month compared to where I was a year ago. I do have break through periods, but what can I say? I have lupus. It's cruel. It's mysterious. It's a life long disease.  This all has taught me that I need to control my breathing, bring my inhaler with me, watch my headache signs and the pain in my eyes. I have to look out more for myself and listen to my own advice that I'd give to someone I advocate for.

Having lupus is only part of the challenges I've had to face this past year. I have a son that has ADHD (Attention Deficient Hyperactivity Disorder), ODD (Oppositional Disobedient Disorder) and High Functioning ASD. He's been in therapy for the past 4+ years but it wasn't until this past May 2016 that he was correctly diagnosed. We've had many trials and tribulations through the years and not only has it put stress on our son but as the family as a whole; including our youngest child. Now that we have him in the correct type of therapy (psychologist and OT) and having the school on board, things are much better. This does still bring daily challenges when he has outbursts but we know how to handle what we're dealing with now.

Having lupus along with a special needs son has been extremely stressful and has been super hard. But, I've done my best for my sons sake and tried to deal with my disease so he doesn't feel like the stress is related to him. I try to keep it together as much as possible but that has it's down fall(s) as well.

These are the things that 2016 has taught me:
1. Once you show others you've got it "together" you need to keep your sh!@ together in order to keep up the appearance that you in fact do have your sh!@ together!
2. Once you reveal a "secret" to someone you think you can trust, it's a 50/50 crap shoot that you'll ever hear from that person again. Watch what you share and with who.
3. Listen to your body. If you're in pain or feeling fatigued, it's time to stop and rest!
4. Don't always trust the 1st or 2nd medical opinion you get. If your intuition tells you otherwise, then get a 2nd or 3rd opinion. We did that with our son and like I always say, "a mother knows!"
5. Learn to pick a fight. What I mean by this is that you don't need to argue about everything with everyone. Learn whats important to stand your ground on and let the rest go. You can't stand on the podium all the time. Pick your battle and agree to disagree. I'd rather have peace in my house, heart and soul than be right 110%.
6. I learned that being creative doesn't always mean making things. There's many ways to being creative.
7. I LOVE Volunteering!!!! There's always organizations looking for volunteers!
8. Being a parent never stops. Whether your child is an adult or a toddler, you're always going to want to parent that child. Whether they listen to you or not is up to them but you never stop being a parent.
9. I've learned to be content. I used to want just to want. Now I am totally content with everything; my house, my car, my everything. It's nice not to want....just be.
10. Be grateful. To wake up every day and breath is a wonderful way to begin the day and find at least one thing to be grateful for!

Welcome 2017! Let's begin this year with happiness, peace, love and better health. I wish all my friends, family and lupus family spectacular 2017!

Sunday, July 19, 2015

Women With Lupus and Special Needs Children

 As my family and I were walking inside to the movie theater, my oldest son; out of the blue, asked if I'm eating healthy because of my lupus. I replied yes. He went on to say, "Do you eat healthy so your cells get healthy?" I told him it's not that easy because my healthy cells are always being attacked by each other.

My son will say random things at the most random times. His mind works differently than most children's. Actually it works differently than anyone's. He sees things from a different perspective. He's highly intelligent, can figure things out quickly and gets bored easily when not challenged properly.

Saturday, late morning, my son was having a good "time of the day". See, our oldest son has ADHD. Part of his ADHD includes OCD, not only the tidy part of OCD but the compulsive part along with Impulsive Control Disorder and has problems with social behavior. He's extremely intelligent, kind, loving, caring, enthusiastic &, energetic. But his mood can change at a drop of a hat when he needs his medication.

When a woman is pregnant she's offered a slew of recommended tests that can show birth defects her baby might carry. I recall when I was carrying my second daughter and I opted to have the triple test. The result showed she was going to have Downs Sydrome. My husband, at the time, and I had to go through genetic counseling, I had to get an amniocenteses and it was terrifying. By the time we got the results back  I was 5 months pregnant and it came back showing she was healthy. I never opted for another round of tests again because it was nerve racking. I figured if the genetic tests were fine once, they weren't going to change.

There's no test offered to pregnant women showing her baby may be born with ADHD or Autism yet there's a high rate of women who have lupus with special needs children. Is there a correlation? I think so. In our support group there's 72 members and out of those members I can count 6 members who either have children with ADHD or Autism/Asperger's. There could be more. That's only the 6 mother's/children I'm aware of.

Autism has gone up in the past few years and many believe it's due to Monsanto while others have different beliefs. There's not enough research on ADHD to understand the full cause and affect.

Just knowing there are 6 out of 72 mother's who have special needs children, I believe this is grounds to do more research.

Between lupus being a cruel mysterious disease and having a child with special needs, women with lupus need a cure and more research on both fronts. We have been silent long enough!

Thursday, July 16, 2015


Tonight at, at the end of karate class, the instructor asked if anyone knew what the word of the month was. I knew the word was perseverance but didn't want to speak up. Looking around the room, I waited for someone else to raise their hand. One of the students answered and said, "Perseverance". The instructor went on to ask if if anyone knew what the word meant and again I chose not to say anything. In my head I knew what I would say because this is exactly what I was doing.

Since my diagnosis I was fighting the good fight and tonight wasn't any different. I wasn't giving up on myself. I was choosing to continue to fight this damned disease. I was fighting for myself and for my family.

Each night I go into a karate class with enthusiasm and eagerness to learn something new. Tonight wasn't any different. However, I haven't been going to the gym lately so my cardio strength isn't nearly where it should be. The exercises we did tonight put my tachycardia and mitral valve prolapse in a crazy state. I pushed through it like I normally would do and I tried to focus and breath through it. I swore I saw stars at one point and close to seeing black. I kept telling myself that this too shall end soon. Whether it was the end or the exercise would end I wasn't giving up. I could feel my chest beating oddly. I didn't like it but there were kids in this class and the last thing I needed to do is collapse in this class and scare kids not too mention my own kid. So I had to get my breathing together fast. I tried to forget my tachy heart. Finally I hear "STOP!" Crap....It wasn't like 'STOP' you're done, it was 'STOP' do something else. OK, this wasn't good....I was in front on this round of exercises which consisted of shuffling our feet left to right around the room....This one was a little better but my chest and heart was still beating off rhythm. Keep going is all I could think of...keep going...you can do it....You're strong....Is that the light....Look ahead, not at anyone...straight ahead!


Good lord! I needed to let the instructor know about my tachycardia and mitral valve prolapse. I wasn't feeling well so I had to say something....I knew I pushed myself too hard. That's me...I can do it. Like the little engine that could. Why not right? What do I have to loose? Oh, yea, my life!

The instructor was understanding, or seemed to be. Either way I had to drink water and cough my self silly. Rest of the night was a piece of cake (sort of) in comparison to the first half of class.

It's never a good thing when over exertion scares you. Cardio is supposed to be good for your heart. That's why it's called heart healthy versus heart attack or stroke.

So, what I actually learned from this is it's OK to not give up in yourself but to push yourself to the point of no return...well, that's just insane. I still feel off balance right now and I've been home for an hour. I'll continue to push myself and never give up on myself but there has to be a limit.

It's OK to take it slow or to stop for a bit and breath. Breathing is good. Gosh, I tell this to the people in my support group. I would never recommend this behavior to anyone so I don't know why I think this is good for myself. I must be insane to push myself like this. I know I'll pay for it tomorrow. I can't even run on a normal basis because of the tachy and prolapse issue not to mention other lupus related issues. Sometimes I think my brain took a major vacation.

I tell people to be kind to their bodies and to themselves then I batter myself. Good advice. LMBO. Calling all morons. "Hello, did you say my name? "

Wednesday, July 15, 2015

How Was You Day?

When you think of "The Day in the life of a Lupie" you generally think of the medication, joint pain, taking naps, aches, pains, and complaining a lot. Well, that does happen but there's a lot more to a day of a person with lupus.

A lot of us who have lupus have families and that means we have children. Whether we have little kids or big kids, that comes with responsibilities that we must full fill throughout the day.

Now that it's summer, I try to keep my kids days/weeks/months full of activities so they're less likely to be connected to the Internet or PS3 or whatever else that's electronic. After I signed the kids up for swim lessons,the book buddy program at the library, karate, walk/jog through the karate academy, a social therapy program and a church camp; my husband looked at me like I had a third eye. He then asked, "Aren't you putting too much on the calendar?" I knew I was but I had already heard, "I'm bored" too many times since school got out. Also, I didn't give it a thought that I would be the only one lugging the kids back and forth. I guess I kind of thought I'd be cloned somewhere along the line and my clone would be the healthy one taking the kids to all of the activities while the Lupus one would be home resting. Well, that didn't happen!

I've always been the one to put on a brave smile in public and no matter what I can be positive and optimistic. There's always an upside to things. But, when you have to drag your kid out of the house kicking and screaming because he doesn't want to go to swim class that kind of puts a damper on your morning. I try to convince an already anxious child that everything is going to be OK and that he will not drown in swim class. There's no way that his instructor will allow him to sink to the 3ft 6in bottom of the pool. Shortly after we get to the pool his anxiety is soon gone, while I feel like I need a Chocolate Martini at 10:00 am!

By the time we get home, it's 11:15. My mind is racing back to this morning. Gosh, it was a crazy morning. I forgot to eat breakfast. I don't even have time to make breakfast or lunch for myself. I have to get lunch for my oldest because we have to leave for our walk/jog soon. My youngest insists on getting his pajamas on. He's my kid alright! He apparently has no intention of going outside today. My oldest barely eats lunch and my youngest doesn't eat at all. I wish I could force feed my kids. It drives me batty that they don't eat. But, what can I say when I don't sit to eat or take time for myself? I did grab a banana on the run and a granola bar. At least it was healthy; right?

This is the beginning of the 2nd week of doing the walk/jog with the karate academy. I say walk/jog because I walk while my oldest son jogs with the master and a few others. This has been wonderful for both of us. Not only for the cardio/exercise but because it's great motivation and accountability. Master has it set up for us to do it twice a week until school starts which equivalent to 26.2 miles. My 8 year old has done a phenomenal job and I'm so proud of him.

I do have to say that cardio and exercise has helped with my fatigue. I still have pain but I don't think about it while I'm busy. Once I stop the activity is when I notice any pain. I try to stay busy throughout the day for that very reason.

Once we returned home, it was chaos as normal and housework as usual. Somethings never change~

Tuesday, April 7, 2015

People come into your life for a reason, a season or a lifetime

You know that poem, "People come into your life for a reason, a season or a lifetime."? Well, I have a few lifetime friends, and a couple of women I recently met that I strongly believe that were brought into my life for a reason. However they have become lifetime friends. I would and could never give up the deep friendship and love I have developed for these women.

I was having a meeting with one of these dear women today and we were discussing the upcoming Lupus Fundraiser. When she was talking about all of the people that have lupus and those affected with this invisible disease you could see how affected she is by this cruel disease. She doesn't have this disease, but she is as close to the disease as you can get. Her oldest daughter was diagnosed with Lupus when she was 12 years old [she's now 17], so the passion my dear friend feels is too real for anyone to describe. Lupus attacked her daughters liver, heart, lungs and kidneys (Nephritis). She was on Cytoxin for 2 years, both on IV Chemo and pill form. 

My girlfriend then took hold and total control of her families lifestyle and eating habits. She realized that healing began inside and within. After much research and soul searching her kitchen, household products, pretty much their lifestyle changed. Her daughter was able to get off all of the toxic medication that was suppose to make her better. After some time her labs all began coming back PERFECTLY! She's feeling great, she looks great and she has quality of life. And that's what it's all about. A teenage girl can have her high school life back. She can hang out with friends, she can play sports, she can just be herself and have fun. She doesn't have to worry about Prednisone making her swell and have a puffy face. No teenage girl should have to worry about that. No mom should have to worry about her daughter being sick from chemo treatments. Quality of life is a must especially when you're 17 years old!

My dear friend has a fire in her that's called passion, to find the reason why people like her daughter, myself and 1.5 million other people have Lupus. Is it our environment, is it caused from medicine, is it caused from a traumatic onset? We need further research and more funds. That's where the 3rd Annual Crystal Lake Lupus Fundraiser comes into place. We need you to be part of our community and event. Won't you please be part of our mission, fire and passion? 

Please join us Saturday, May 9th from 8:00 am - 4:00 pm

In Front of
Benedictic's La Strata
40 N Williams St. Crystal Lake, IL  60014