To The Girl With The Bruises

Girls receive the message that they need to be flawless physically which is impossible. They are ashamed too often of bruises, rashes, stride marks, or other physical changes due to things outside of their control. No one should feel ashamed of their body because of their invisible fight. They hide the imperfections at all cost.

To the girl with the bruises from falling too often because your body cannot remain up right, your bruises are beautiful.

To the girl with the bruises from unknown causes, your bruises are beautiful.

To the girl with the bruises from bumping into things because of balance issues your bruises are beautiful.

To the girl with the bruises from a blood disorder, your bruises are beautiful.

To the girl with the bruises from abuse, your bruises are beautiful.

To the girl with the bruises battling her own body and daily fighting for her life, your bruises are beautiful.

Your bruises are a part of you for a few days, weeks, or maybe a season of life. They do not define you or tint your beauty. There is no reason for you to feel ashamed. Your bruises are beautiful because they represent your invisible fight against your body.

They are beautiful because they are proof that you never give up. You have courage, strength, and dedication pushing through the most difficult times. You might need a break or time for a melt down which is okay but you continue moving forward.

Your identity is not rooted in your looks. Your value more than skin deep. Your heart is stunning. You have courage that many people only fantasize about. You are an inspiration and a blessing beyond words. Sweet friend, your bruises are beautiful.

IV Fluids For POTS

Wow, I guess I don’t do health updates that often. I just noticed that it has been six months since my last POTS update.  I haven’t done many updates on my POTS because little progress has been made. Just an overview my pressure is still on the low side, heart rate most times insanely high, falling, near syncope, tremors/muscle spasms,  headaches, and brain fog. Later in the day is extremely difficult especially the closer I get to my Remicade infusion. I am thankful that I now have a rollator walker. It makes life easier after showers to safely get back to my room.

I have noticed the brain fog affecting me more cognitively lately, which adds to my frustration at times. There are times I have dyslexic tendencies while writing. I will switch or mix up letter. My spelling at times is worse. I tend to file that stuff under POTS.

I have had minimal success with POTS treatment. I have been on a tachycardia medication, but it is not consistently doing its job. Somedays even with the meds my heart rate is 160.  The steroids raise the blood pressure slightly but I sill come in at low 100- 115/ 50-85 ish.

Needless to say, my POTS treatment leaves my doctor frustrated, my family frustrated, and me frustrated. Falling every other day or more just isn’t acceptable anymore. I have been doing it off and on for three years now. My body is exhausted. I have injured a few things. My bones are not in a place that this is remotely safe. I kindly but firmly told my doctor we need to do something, anything at this point. It was a long debate with begging

I kindly but firmly told my doctor we need to do something, anything at this point. It was a long debate with begging laying out several creative options; medication changes, IV fluids, or teach me to accommodate my life. I was extremely respectful and compassionate as I always am with every medical professional (I remain that way even with the nasty ones). I thanked him for all he has done furthermore mentioning I am beyond thankful for the hospital. I find it important in the midsts of frustration to express that I am thankful and I understand I am complex but we need to work together so that I can have a better quality of life. Despite my compassionate response things were left at that point in time unsettled. My doctor wasn’t thrilled with my options. At my next appointment, my mom accompanied me as always and sat silently. My doctor was more compassionate, willing to listen, and was impressed with the research I had presented to him.

Despite my compassionate response things were left at that point in time unsettled. My doctor wasn’t thrilled with my options. At my next appointment, my mom accompanied me as always and sat silently. My doctor was more compassionate, willing to listen, and was impressed with the research I had presented to him. Even so, I could tell he was not sold on the idea of using IV fluids to treat my POTS, however, we had tried everything else. It seems too simple. Too basic. Thankfully, he allowed me to try which is all I could ask for.

You, need to learn how to be your own advocate. Speaking up doesn’t mean throwing a fit or being nasty. Speaking up can be done compassionately and with respect. It gives you a voice, an active part in your health, and respects your body. Never be afraid to ask questions or say no.

Today I got my first round of IV fluids. I also had my Remicade infusion, which I will do a separate post on. I was at the infusion center for four hours total and a four-hour round trip. I am expecting to notice a difference tomorrow.

So for anyone who is wondering, how can simple saline help POTS, I will gladly share. More research is needed, but the results to me are amazing and worth trying if your POTS doesn’t comply with normal treatment. Most of us are very dehydrated this, of course, helps with hydration. Additionally, it can help blood pressure, heart rate, decrease passing out or near passing out episodes, help the person stay upright, and possibly more. In my case, the hope is to also decrease shaking, improve brain fog, decrease infections (that could be related to dehydration), and decrease kidney stones.

Today I got about a litter and a half. Furthermore, I was told to keep up all fluids by mouth. Very rough estimation 50-60 ounces by mouth which are a slight decrease from a normal day. I will have two additional tiral runs of fluids next week at a center called Chronic Care. I am extremly hopeful with this treatment.

Everything But The Kitchen Sink

I am thrilled that finals week is finally behind me. Whoever invented finals is not my best friend. I love school, but finals week is too much stress. I will be graduating this week with my Associates, finally. Then a summer course, and I am completely done with community college. There are a few things in the air in reference to where I will be continuing my education at. Both my options are great. I am trusting in God to direct my steps and I am excited to see where He is leading me.

A few days before finals, I passed out for about ten minutes, while taking my cat to the Vet. (Poor Kitty was scared outta her mind). I didn’t have my typical warning signs. I am doubtful, it was just POTS, but then again who knows. Hours later I went to the Emergency Room.  My doctor isn’t clear about what an emergency is, therefore I have to be a pain and call to find out. The conclusion of the visit was I did not have a heart attack and no bleeding on the brain. I am going through a period of falling and dizzy spells once again, which is irritating. I have had intense muscle  pain in my legs which has made me wonder if it’s som how related. I have discovered a few things that help a tiny bit with the muscle pain: Village Natural Soap, Dr. Teals Pure Epsom Salt Body Oil, and tiger balm. The soap and oil are excellent for chemo skin. These are the first things that have helped my chemo skin.

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I am back on steroids for a short amount of time. The goal is to be off sometime in June. I switched from Methotrexate to 6 MP also known as Mercaptopurine. 6 MP is also a chemo and the dosage is higher. I noticted there isn’t as much paticent information as Methotrexate. I have been on it almost a month. I take it after dinner because in the beginning I was having migraines. The first two weeks was difficult. My assumption is because it’s a higher dose of Chemo. If this doesn’t give me the assistance I need we will be adding a biologic. Personally, I am comfortable with this option, more than ready to begin, and I think it is a good step. Many meds help both Lupus and IBD. Right now, it is another waiting period, which is always hard.

Currently, I am able to eat which is always exciting. I have a lot more options with food on steroids. In moderation, I can do fruit, juice, and small amounts of veggies. Being able to eat healthy is a treat.

We have had a lot of rain lately where I live. My hip and arthritis in general, have been less than happy about this. I am still not sure what is going to happen with my hip. Still having issues finding a doctor. Life is complicated with a chronic illness, as well all know.

Here are some pics of the Lupus hand sign from awareness day:

 

I will be posting more on the blog now that the semester is over. I have been working hard on a few posts and I am excited to share them with you! How have you been doing? Let me know in the comments.

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Oh! And by the way, I have made a new e-mail for the blog, being that I got locked out of my old e-mail after my concussion. hopefulspoonie@gmail.com

Snow Day Update

We are getting all the snow we have missed earlier in the season where I live. My mom and I heard it could keep snowing until Monday. You never know with the weather. I am thrilled that my family is safely inside. I pray that you are safe and warm this snowy Saturday.

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The snow has never affected my pain levels- until this storm. Last February I had a POTS episode where I got hurt from passing out apparently aggravating and changing how my POTS reacts to things. This morning was a bit difficult including back pain and a migraine. Like many Lupies, my doctors question if Fibromyalgia is a part of my pain. Some doctors tend to blame everything on Fibro and downplay another illness causing chaos. Let’s be real it can only do so much and the medical field does not have enough education on it. I know many of you struggle with Fibro and my heart goes out to you. It is my prayer that doctors will take us more seriously and that more research will be conducted and better treatment will be put into place. Jumping back to POTS for a moment I did experience two simple falls recently irritating each hip. I am wondering if it could be weather related.

I wasn’t planning on the mini Fibro rant but it is relevant. Anyways. Update time. I have been out of the hospital for a while now. This second I am feeling great (Compliments of Tramadol).  I have seen a new Gastro. I am hopeful and a bit nervous about the switch but it absolutely needed to be done. The doctor was ready to put a new treatment plan into place and get things under control. I am back up on Prednisone, 25 mg. When I saw her about a week ago she also prescribed a Chemo. Two Chemos and Steriods seems like a lot to me. The option is excellent but not ideal. I have already had issues with my blood counts. Therefore, I have been researching other options. After hours of insurance calls, I have the name of a medication that does not interact with any of my other meds. It is a general anti-inflammatory. My hope is the doctor will agree to give it a shot. Either way, I am looking at about two months or more for the medication to begin working.

Either way, I am looking at about two months or more for the medication to begin working. The plan is to be off Steriods sometime in March. The combination of two Chemos and Steriods made me extremly emotional. Every little thing was giving me excessive anxiety. All I wanted to do was cry. And I did do that.

The increase has been a blessing. I am able to eat some and drink plenty. I can feel the difference now that my body is absorbing food and medication. I have less weakness.

Before the increase of steroids, my injection was making me feel sick. I am so grateful that it went much better last night. I look forward to the day that I am on a more stable treatment plan. It can also be nerve racking at the time thinking about life off of steroids. More than anything I want to be off. At the same time I know in my heart my body will be much different. It won’t be the same as before Prednisone. It will take time to adjust.

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Outside of the health roller coaster, I have been reading and focusing on Chronically Hopeful on Facebook. I got a 20 dollar gift certificate for Logos for my birthday. I think it is awesome. I got two books and a Bible Magazine.

Weather permitting, I will begin school Monday. I am taking History, Effective Speaking, Forensics, and Spanish.

Leave me a comment below, share how you are doing, what’s new and if you’re in college what classes you have this semester.

Gonna Break

How much more can I take?

Before this weak body breaks

I know I am strong

But now it is getting harder to move along

Harder now to hide the pain

To force the smile, slap on the mask

Starting to fall faster and faster… here comes the rain

Energy wasted on a smiple pointless task

Don’t bother asking how I am

Surely I will lie, don’t need the sympathy

What they don’t know won’t hurt them

I’ll be fine on my own