Yesterday was the last day of my first set of infusions. I was so drained afterwards that I was in bed by 6:30pm!!
I never realized how exhausting muscle fatigue is. I’m thankful I wasn’t in much pain today but my legs felt like I’m walking around with potato bags attached to each leg. My knees are swollen which doesn’t make it easier.
To make light of it, one leg is fat as a ham hock and the other not as swollen but looks like a little turkey leg. When I showed my mom she said “I’ll have the turkey leg on the right.” (Gosh! I love that woman!) It instantly changed the temporary sadness I was feeling in that moment. So, I named my knees Ham & Turkey. Sometimes laughing is the best medicine.
I have faith, but I’m not gonna act like anxiety isn’t trying to creep in, I’m not gonna act like I’m not over processed because I am. I’m still wrapping my head around a journey ahead that I can only have faith in each step, and that’s ok. I’m thankful for the support, prayers and encouragement, it goes a long way.
I met some wonderful people during my infusions that have had MS for a while. They encouraged and gave me resources to help me better understand the road ahead and I’m grateful for meeting them.
Right now I’m using a cane to get around. When I don’t use it my back hurts worse and I experience more fatigue. The swelling has gone down from my knees. Still there but better. It’s a small sign of improvement. I’ll take that.
Day 4 down! One more to go!! I showed up for my infusion but my PA came to see me prior to starting because I was having tightness in my chest that I couldn’t explain. She thought maybe I should skip it my infusion and me (the needle hater) freaked out because I knew the hep-lock had to come out since it was in my arm since Tuesday.
Come to find out, the chest pain I was experiencing was just once indigestion. Prior to the infusion she gave me pepcide again and I was just fine.
During my infusion the IV and my veins were in a painless battle. The medicine was dripping very slowly. She flushed it so it could have been the line, nope she started working on the bag some and then stuck my other arm to find a vein to restart the entire line and my vein flat line on her.
I was in utter hell! I hate needles and now I’m two minutes from prayer and a panic attack. She went back the original side to try one more thing, this time I was praying lord please let this work. I did not want to postpone and add another day of this.
God is so good, it worked and I was able to get my infusion done. Now, Monday will still be my last day of this infusion. I’m so glad God answered even the simplest of prayers.
I woke up this morning feeling pretty good. My knees are still swollen and I’m having some difficulty walking.
I was still suffering from major fatigue after all of that pain the past 2 days!! It made me extremely tired. I had a little difficulty walking with my balance and my legs felt really heavy because my knees were so swollen from yesterday. I used my cane to get around to help take some of the weight off my left knee.
Knees still a little swollen from yesterday
I still had pain but it wasn’t unbearable like it was yesterday!I’m glad there is some improvement, this makes me feel more hopeful that the infusions are starting to work!
On the way to my infusion it started to rain, I noticed that my tires were kind of slipping around. I thought maybe it was the wind, so I slowed down a little and looked at the trees. Next thing I know my tires went out of control. I pulled over and realized I had a flat tire.
I immediately called for help because I knew I had to get to my infusion done. I managed to get to my infusion for the day. I was all worked up and worried about my car and still processing the fact that I have MS. It was a lot.
When I got to my infusion, I shared with my nurse that I had some burning sensation and I showed her my knees that were swollen. She said swelling is a common side effect but she checked my legs to make sure I wasn’t having any clotting. Once she confirmed I was safe for infusion She gave me Pepcid for the reflux I was having, Benadryl and Tylenol before my infusion with hopes that this would help with the burning sensation.
Once I completed my infusion. I went back to my car with my Man and he replaced my tire. On my way home I was completely drained after all of that drama. Next thing I know lights are flashing behind me and I got a pulled over by the cops. They gave me a ticket.
I decided to stay positive and focused because I was going through enough. I was glad to have something positive to hold onto, the burning sensation that I felt was gone, I didn’t have a blood clot in my legs and I only had two more days left of the infusions!
Maybe tomorrow the swelling on my knees will go down some more.
I woke up in extreme pain this morning. I managed to work a half day as planned and then head over to the clinic to have my dose for the day.
I can’t say that I was too thrilled. I was use to steroids providing relief but this time I felt like I was literally at war on the inside. I wanted to get away from having pain but my entire body felt horrible.
When I got to my infusion the nurse asked me how I was feeling and I told her that I was in pain. I then found out that the extreme pain was very normal when getting steroids at a high dose and that my body is just trying to fight against it and trust me, every step and move I took, felt like I was definitely at war.
Everything went smoothly, the staff is amazing and helpful. Another side effect I had was a burning sensation down my throat when I swallowed food, my stomach is a little upset and my joints are hurting so bad.
Everything I taste is a little metallic. We are hoping my system calms and I start feeling some relief. I’m hopeful that this pain will pass, even though I feel right now It’s going to last for an eternity.
Swollen Knees
By the time I got home, I realized why I was having difficulty with walking. Both of my knees were swollen, more so on the left side. No wonder I was exhausted! My legs were so heavy. I felt like I was carrying around a ton all day.
Hopefully tomorrow some of the swelling will go down and some of the fatigue will start to go away.
If I could give an example of my life, I would say I was driving on smooth pavement and suddenly switched lanes to a rocky road. Yes, it will still get me to the same location I’m going, it’s just going to be a rough ride, hard on my tires and a little pressure on my engine.
I knew something was wrong, I’ve shared this in some of my past blog posts. I went years with strange symptoms that came in waves. Most of my days were spent with horrible back and joint pain. I was dealing with fatigue everyday to the point that I thought I was depressed. Strange thing was, I didn’t feel sad at all, just tired. I went to my doctors just to be dismissed of my symptoms and told my vitamin D is just low, I have osteoarthritis. If I take more Vitamin D you’ll feel better.
So I took a heavy dose of vitamin D for a year and it was still severely low. I had to advocate for myself and keep pushing my rheumatologist to the point that I begged for PT and OT since I was having issues with my hands too. I was afraid that whatever was going on with me, if I kept living like this I won’t be able to walk anymore. He gave me the prescriptions I asked for and I finally started PT and OT.
I believed him when he said that I have arthritis and that low vitamin D was the reason I was suffering.
I went back to my Rheumatologist a few months later because I was still having so much pain. It was right around the time that I needed new bloodwork, I asked him to test my ANA again we went back and forth over that test being negative but if I wanted to waste my money we can check again. Of course I said it’s not about the money it’s about the way I feel and the fact that you make me feel like I’ve lost my mind. This time the test came back positive. He didn’t give me anything to treat it other than recommending a host of vitamins to take. So that’s what I did and went on about my business.
ALWAYS ADVOCATE FOR YOURSELF!!!
I was still having issues and other things going on that made no sense. I went to see my Internist for my annual check and she recommended that I go and see a neurologist, I did my research on neurologist that specializes in autoimmune diseases like lupus, MS, etc. and also a woman, because I feel like they are more understanding when it comes to our bodies.
My neurologist was amazing! She was more than what I could ask for. She took time to review my past medical history and she had old imaging records, I was impressed! She did tell me that it could be possible that I could have another autoimmune disease that’s not lupus that causes a positive ANA and that she would test it again and go a little deeper and do a Titer test since my neurologist failed to do that.
I was so happy that she was concerned and studied about me prior to my visit. What I wasn’t expecting was finding out that I had Multiple Sclerosis, also known as MS.
Life is a gift, It feels like you have forever but it’s only a blink of an eye. Make sure you live each day fully.
-Amber
I sat there with tears welling up In my eyes as she took the time to explain everything to me. Part of me felt like she was drifting into the distance while she was talking . All could hear was you have MS.
Then we went over the imaging that I would be needing to get the stage and type of MS because right now we just know about the lesion on my brain. She wanted to do one more in depth of my thoracic and lumbar spine since my symptoms have gotten worse in less than a year and she was concerned with rapid progression and wanting to get control of it.
Next the lumbar puncture would be scheduled. Everything happened so fast and of course the tears finally started rolling down my cheeks. She looked me in the eyes and said “ I might not be able to get you back to 100% but I will fight to get you back to 90%.” Peace came over me. I wiped my tears from my eyes and then she said “you might have tough days in the beginning but you will get through it.” I was so relieved but slightly worried. She started me on a heavy dose of IV steroids to calm down the inflammation in my body. She said it’s usually the first treatment for newly diagnosed MS patients so here I am, walking into the unexpected, feeling alone and needing more answers.
State Fair of Texas October 14th 2023 45 mins before the shooting took place.
The Brief Story
October 14th my family and I attended the Texas State Fair. It is one of the largest fairs in the USA. People from all over the world come to try to the new fried foods of the year, check out the livestock, ride rides and so much more. It’s a big event. The kids even get a day out of school just to go to the fair.
This year things were different. We were excited to be able to plan this trip. The kids and I made a list off all the things we wanted to do, shows we wanted to attend and food we wanted to taste. Things were going well, until they weren’t.
The Message From God
We couldn’t wait to get to the Rodeo and see the Cowboys of Color compete. It was an outstanding show from bull riding to barrel racing. We enjoyed every minute of it.
As the Rodeo was coming to a close and it was about to be award time. I heard to shots, I thought maybe it was a backfiring police car or something then I heard it again, this time the crowd came pushing through, terrified. Their eyes were filled with fear. I watch them trample over elderly, handicapped, and children just to get to safety.
They were fun shots, in the distance but close enough to be heard. I wasn’t sitting next to my parents but I did motion for them and yell out to stay put there is an active shooter nearby. Of course instinct they got up. My Dad grabbed my son and granddaughter and my other son came to help me as I was using my wheelchair and my daughter went to help my mother.
Oddly I had this peace in my heart that everything would be ok. We were going to exit until the gates and doors were locked. We went to sit down, where I heard phone calls, children were crying and people were downright scared! I wasn’t afraid. First I was concerned that I wasn’t afraid because life has been launching lemons at me so quickly that I don’t have time to make lemonade but I didn’t have an ounce of worry.
This says a ton about me in that moment because i usually overthinking something. There was a man in a cowboy hat sitting next to me peacefully reading the Torah with a smile of gratitude on his face. He showed me a little bit of it and let me know he bought it at the fair before the Rodeo.
In that moment I realized the peace and safety I was feeling was God landing into my spirit in that moment. I called my best friend and she gave us updates as it matched the information that the host of the Rodeo kept telling us.
It wasn’t long after that the Lord intervened and we were free to go. The shooter was captured. We had to find my Dad and the other two kids. Out of all places they made it outside! I knew they would be ok.
My Daughter went to use the restroom before we left the coliseum. As she went waited, I heard the Lord so clearly say, “THIS IS WHAT ITS GOING TO LOOK LIKE WHEN I RETURN.” People will be running frantically in fear, not knowing where they are going, what’s happening as they rely on people that can’t keep them safe. He’s coming.
The sad thing is, sharing this news isn’t rattling enough people. God is near. Jesus is returning soon. The world thinks the people of God are nuts, the reality is, they are. I saw a room full of hopeless people terrified in a brief moment. Just that fast the enemy (the shooter) trampled in and everything around came unglued.
Wake Up!!
As children of God, now is the time, he has called us to do a work for him and we all have a purpose in these end days. I highly suggest that we all seek God and figure out what he needs us to do. It doesn’t take a major title in the church to do it. It only takes a person who loves him to spread his love and share the TRUTH. Pray for the world around us. God has allowed the enemy to rise but trust in Him, the enemy never wins, it’s just a false illusion to make him think that he is. This is all just preparation of what’s been said to us since the book of Genesis.
Guard your hearts, open your ears, die to yourself daily and meditate of Gods word. Memorize his word, it’s the only thing that will help you see and understand what we are facing and the Lord will equip you through his word everyday. Find him. I truly hope this opens up your eyes. I know it did mine.
Picture what I saw. Helicopters all over the sky, police lights flashing everywhere as people are packed in their cars trying to evacuate the fairgrounds. I haven’t been able to stop thinking about this. My heart gives thanks that God spoke to me and allowed me to see it. I’m not sure if I’ll be part of this battle hear on earth but just in case, I got a glimpse to prepare me to go into this fearless and trusting that God knows the direction and he has the final plan to win.
Share his gospel, be a light to others, love without conditions, help those in need when the opportunity is before you and know that God is able and will bring us through to victory.
It’s fall time and we all know what that means, it’s officially baking season! Around this time there is a bunch of sharing of recipes, pies, cakes, cookies and sweet breads.
It’s truly the best time of the year but as a single mom, often I get very busy and now that I have chronic pain, less is more for me. I don’t delight in standing on my feet for long hours prepping baked goods from scratch!
I’m just being honest. I enjoy baking and cooking but sometimes it can be difficult when I’m having a bad day filled with aches, pains and fatigue.
I am a pumpkin spice and everything nice NUT!! You can give me all things pumpkin and I am happy as can be. As one who has made pumpkin bread from scratch several times throughout the years, this recipe is actually pretty darn delicious.
All you need are three simple ingredients, a bread pan and boom you have the quickest bread you ever baked that you can share with your friends at the next get together.
Ingredients:
1- 14oz can of Pumpkin purée
1- Box of spice cake
2- eggs
Directions:
Preheat oven to 350 degrees
1. Lightly grease your bread pan ( I spray a little PAM in my pan)
2. Combine the pumpkin purée, spice cake and both eggs in a mixing bowl.
3. Pour the mixture into the bread pan and spread evenly.
4. Bake for 60 minutes
Congratulations you have Yummy Bread
And your house now smells amazing!!
Fresh out the oven ❤️
It’s takes maybe 5 minutes to prepare this to have something good to eat within an hour. I’ve made this easy recipe for so many people and I haven’t had a complaint yet!
If you want to make it a little fancy check out the Brown sugar streusel recipe on Bake it with Love’s blog. Once you make the mixture sprinkle it on top prior to putting the bread in the oven and now you have Pumpkin Streusel bread.
It’s so good, trust me you won’t be disappointed at all.
I truly hope that you enjoy this recipe. Let me know in the comments if you tried it and how it turned out for you!
I’m nine years into being a mother with a special needs child. One of my kids has dyslexia and is slowly outgrowing it but a child with Autism hits different.
I didn’t realize the struggles he would face as he grows up, how cruel and mean kids are already in 4th grade, and I can’t imagine what is storming around in his brain to explode into such outrageous outbursts!
It’s hard, so very hard. When you don’t have a team of the support around you, while you are trying to understand Autism it’s even tougher. As a single mom, if it wasn’t for God, And the Autism and Us parent support community I would feel completely alone and totally lost. Navigating this life can be difficult but worth fighting for and being an advocate for your kids is worth the work.
Recently my son has been very disruptive in class. There are things that I’ve observed and learned about my son and there are also things I have observed and learned about the school system as well.
My son will act like a blazing wildfire when he is overwhelmed, overstimulated and doesn’t feel safe. The school is far too busy to manage his behavior at times and will be quick to label him before realizing that he really is a sweetheart, he is loving and giving.
He wants friends just like a neuro- typical child. He wants to feel accepted and appreciated just like anyone else. He is normal, “his normal” and we have to get away from calling them different and be more inclusive. Just because my normal isn’t looking like yours doesn’t mean I am different.
Trust The Process…
If you feel like your child is struggling in an area, you can request to have an IEP meeting to discuss your issues.
Be prepared if it’s your first time. There is a lot of paperwork that goes into it. Answer those questions honestly and don’t be intimidated by them (remember this is for your child’s wellbeing!)
They will have the teachers do a report on what they’ve observed with the student in class, there will be a home report that you will complete about what you observe at home, then they will have a diagnosticians observe and take notes of your child at school.
Once the meeting is scheduled, they will go over their observations with you and then you can request for immediate testing to be done. Do it, this will expedite your process. The faster you get answers, the quicker you can get the ball rolling to have a support team surround your child and help you along the way.
Utilize The Resources
The school system has a case manager, diagnostician, speech therapy, occupational therapy, counseling, etc. I call them Josiah’s success team. They will provide you with the tools that you and your child need to succeed at school. It takes a village, if you don’t agree with what comes out of your meeting, this is the time to voice your feelings and opinion, at the end of the day, you are your child’s most important advocate. So speak up during these meeting.
This photo doesn’t not belong to me
Setting Goals
When you have these meetings you will review how your child scores on academic tests such as STARR and Map testing. Don’t be discouraged these are how you see where more progress needs to be worked on. They will go over behavior goals if this is an issue, they will also come up with ways to reward your child, etc.
If there is a goal that you aren’t pleased or feel it might not be attainable for your child, speak up. For example; your child gets 30 minutes of inclusion support once a week. This means 15 minutes twice a week your child will have someone sit with him or her in class to help for 15 mins. If you feel like your child needs more or less time, if it can be done, you can request the goal be changed to 45 minutes a week for 3 days.
My son is in a GenEd setting. What this means is, he goes to class with the other students the inclusion teacher will join your child to help finish up any class work your child may need help with as well as be a support to help them be calm in class.
SPED is the special education class. It is a smaller setting for students. you might notice on your child’s goals times where they may go to that class for additional support and that’s ok.
If you feel as though the GenEd setting is too much for your student, stand up for them, request and emergency IEP meeting and take the steps to get them into a smaller setting. This may take time. I am about to take on this process for my son because he is not doing well in this setting but he does love being around the other kids.
Homeschooling Parents
You can contact the local school for services. Some school districts all it. If you have a child that might need speech or Occupation Therapy reach out to the school. They will create an IEP for your student. Depending on the circumstances some school can offer support virtually or you may have to take your child to the school for sessions. Be open to whatever and however they offer support.
IEP or Not Keep Your Eyes and Heart OPEN…
Just because you have an IEP don’t let that stop you from being involved. My son has one, yet he is still struggling and there are days that I feel helpless when I get those calls. Don’t let them label your child! Ask them what’s positive, see if there is anything that seems to be working and try your best to encourage that.
My boy has been in detention several times, he has had to eat lunch alone, miss recess etc. these situations make him feel like he is bad. Provide affirmations and encourage your child. Talk to the school, punishing my son doesn’t fix the issue. Try to find a way to help. You have the right to go and observe your child yourself. Make sure you completed the proper background screen. If the school acts sketchy about your pop up visits, take note. There is nothing right about that.
Even though this is difficult try to strive to be peaceful. If you are angry or emotional it’s not good for yourself or your child. Research ideas and try to utilize them. Parenting a child with special needs is not for the faint at heart, but there is a community backing you all the way. It takes a village! If you ever need support or have questions I am a listening ear.
Fall is here, even though it’s still a bit warm here in Texas! There is nothing like an easy delicious crockpot soup. This soup is Vegan friendly, you can add meat if you want too! It’s super easy to make and did I mention it’s so delicious!!
I used 1-2 tsp of the dried spices and was a little generous on the turmeric! (Flavor to your tastebuds)
Directions:
To save time, I used the food processor for chopping. Most of the veggies only need a couple of pulses. Toss in carrots, then celery, onion, and garlic. Do not over process the vegetables or they will become watery. Alternately, you can chop everything by hand.
Place chopped carrots, celery, onion, and garlic into crockpot along with lentils, vegetable stock, canned tomatoes, bay leaf and Fresh thyme.
Cover with lid and set cooking time (4 Hours on HIGH OR 8 Hours on LOW). I did mine for 8 hours on low and enjoyed the fragrance in my house.
Next, prep your kale into bite-size pieces (I just ripped mine from the stem, but if you’re feeling fancy you can chop it up), put in a covered bowl and place in refrigerator for later.
When the cooking time is up, add in the Kale, Kosher salt, ground cumin, turmeric, and ground coriander.
Place the lid back on and let sit covered for fifteen additional minutes before serving.
NOTE: This freezes great and makes 8 huge (1.5 cup) servings. Excellent served with a 3- Ingredient bread and side salad. I hope you Enjoy!
It was to my surprise that my kids actually enjoyed it! I felt like mom of the year! They went back for seconds.
Lentils are low fat and packed with nutrients. Here are some of the many benefits that Lentils provide:
They’re high in protein. …
They’re a good source of iron. …
They’re full of fiber. …
Lentils are good for your bones. …
They’re a good source of folic acid. …
They’re high in magnesium.
Lentils may be associated with a lower risk of heart disease, by lowering bad cholesterol and blood pressure. One study found that eating lentils led to greater reductions in blood pressure than eating chickpeas, peas or beans.
Knowing all these wonderful benefits wrapped up in a delicious soup couldn’t be better! If you make this soup, let me know in the comments how yours turns out!
I have been going through a rough patch in life. I was watching Living a Heartfelt Life’s reels one morning. She always take the time to show us her crafts and share the stories of her family.
As I was watching this on facebook, she got towards the end when she opened up her “happy mail.” This was the moment that really warmed my soul. I just lost my job, my cousin passed away on August and my son that has autism has been having a difficult time at school. Life has just been overwhelming.
My job always made me feel like I had a purpose. Everyday was an opportunity to give back. Once that was taken away I honestly felt hopeless. As I was watching this sweet lady open her “happy mail” someone sent her this beautiful card, handmade and crafted by the person who sent it to her. I thought how wonderful!
This special cards were called Artist Trading Cards. These beautiful cards are handmade by talented people all over the world. They take time to share their gift, whether it be a mini scrapbook card, hand painted, drawn, etc. each card is unique. They are the size of a playing card. People create them and then you trade the ones you make with others. I made my first set and it’s already up for swap! To my new card collector buddy in Kansas.
Music from my soul
These cards are collected like baseball cards. You can stick them in a binder for baseball cards to save them. This is a fun way to start a hobby that you can enjoy, others appreciate it and actually keep your craft!! It couldn’t be a better thing to choose to do. Here are the rules:
1. You can’t sell these cards.You can only trade.
2. Must be the size of a playing card (2×3)
3. It must be your own art in whatever formor medium you choose.
Join an ATC online Group
Everyone is very accepting and supportive. Joining a group can help you see more ideas and fun challenges. I hope that this blog post inspires you to share your art with the world. Here are two Facebook groups I joined. You never know we might end up trading cards before you know it!
Happily Ever Amber 