Round 23!

Day 1!

Got started late today, as my nurse had a doctor’s appointment this morning. I dont mind accommodating my regular nurse, but I’d rather start early, so as to be done by the time the husband gets home.

We got blood return today while accessing the port! Yay! I’m so glad, because if we didn’t get any blood return this time, I’d probably have to go to the hospital to have my port checked out. My nurse wasn’t worried though, as she says that this can happen, then it just starts working again.

No problems today! No side effects or anything. Everything ran smoothly. I got the new hydration order, so I’m getting a liter of fluids along with my IVIG, plus I’m also drinking alkaline water with electrolytes and vitamins. I’m telling you, all these things help with the side effects so much! Anyone on IVIG should be doing this. I highly recommend it.

Day 2!

I have to ask myself this all the time. I don’t understand why I have to be sick like this! I’m the only one in my family sick! It just doesn’t make sense to me. I’m tired of being sick! I want my life back!

Day 2!

I’m so thankful for my baby, Dallas! He always seems to know what’s going on with me, knows when I’m in pain, and always sticks by my side during my infusions.Had some side effects today, and this guy stuck by me so close. He knew I wasn’t doing well, and laid next to me for the whole 8 hours. He’s my rock, especially on these days. I just love him so!

Day 3!

Bad pain and side effects day! I thought this quote was perfect for today, as sometimes I just feel like giving up, but I know I can’t! I have to be stronger than that.

Haven’t been able to sleep at all this week either. It always happens during infusion week. I mean, I never sleep, but it’s worse when I do infusions. I so need some sleep. One more day to go!

Day 4!

I have to keep telling myself this, so I made this my wallpaper on my phone. I’m hoping that if I see this everyday, that it’ll help me stay positive to get through all this. Plus, I got the results of my CT Scans and Swallow Function Test, with some not so good news. Will have to go see some more specialist. When am I going to catch a break! I can’t take much more of this, it anymore diagnosis.

I’m done with infusions for this week. Day 4 was another rough day, and I’m glad it’s over! Can’t wait to take a nice shower in the morning.

Round 24 in 3 weeks!

Have a good weekend everyone! Stay strong!


Monday Vibes!

First off, I believe I forgot to post a Motivational Monday last week. I don’t know where my head was. I’ve been going through a lot, and have had several appointments I had to go to last week, so I’m sorry I missed it.

Second, I think I’d like to change this from Motivational Monday to Monday Vibes. The latter just sounds more like me. What do you guys think?

So, here it is. Today’s Monday Vibe:

I have to tell myself this everyday! Having a chronic illness can be scary at times. When no one encourages you, you have to encourage yourself!

Have a good week!

Rare Disease Day!

So, I’ve been trying to write this blog post for a few weeks now, but it’s been so hard. At first, I waited so I could tell my kids first. I didn’t want them to find out in a blog post. Then, every time I sat down to write this, I would start crying. Why? I dont know. Maybe because it’s just one more thing I have to deal with alone.

Last year, I had a muscle biopsy done. The results of that showed I had polymyositis. My neurologist was convinced that there was more to it then that, so he ordered some extensive lab work to get down to exactly what it was. The results, Inclusion Body Myositis! This is what that is:

Every time I read this, or look up more information on this, it just makes me cry. It’s even hard for me to talk about. My body has given up on me! It just hates me!

So, since today is:

I felt like this was a good day to write about this rare disease I have, and get it out into the open. I’m still learning to deal with it, but the current treatment I’m on, IVIG, will help the symptoms, at least keep me walking on my own for a little bit longer. I’ve also just had a CT scan of my chest, abdomen and pelvis, and will be going for a swallow function test tomorrow, because I have trouble swallowing already. Will update when I have those results.

Have a good day!

Round 22 Day 4!

Caught this beauty of a sunrise this morning before my infusion. I hate getting up early, so I dont usually catch the sunrises, but infusion weeks start really early.

Today was a rough infusion day. I was extremely tired, anxious, and the side effects were horrible. I had my IV hydration, and tried to drink a lot of water, but again, I didn’t have my alkaline water with electrolytes and vitamins. Will definitely have some for my next round!

This guy stayed with me all day, thank goodness. I really, really needed him today. I’m so grateful for him for always being such a wonderful emotional support dog.

I have a love, hate relationship with this medication. IVIG is horrible! The side effects are horrid, and the recovery period after I’m done for the week just drains me. It takes me about 3 days to recover from a week of infusions, then for the next week after that, I’m still not all with it. Recovery is slow, then I have to do it all again every 3 weeks.

I’m done! Thank goodness. I’m not planning on doing anything this weekend, but resting. I already told the husband and son that I need to rest and leave me alone. I don’t want to be stressed or anything. If they can’t take care of things for me for the next few days, then that’s their bad. Shame on them!

I hope everyone is doing well. Have a good weekend!

Round 22 Day 3!

Started my day off with this beautiful sunrise! Then the day just went downhill from there.

Got a call around 7:15am that my nurse was going to be late, as she woke up not feeling good. She said she’d be there by 8-8:30am, but she didn’t get to my house till after 9am. I didn’t care that she was going to be late, as shit happens, but I knew I had a chiropractor appointment later in the afternoon, and wasn’t sure we’d get finished with the infusion on time. Thankfully, we did!

Once the infusion was going, everytime I got up to go to the bathroom, or to the kitchen, as soon as I got back and sat down, the aseptic meningitis side effects started; lower back pain, radiating up my spine to my neck, then to my head. Sometimes it knocks the breathe out of me, like it did today. This happened everytime I got up, but would stop once I got settled back into bed. It’s not as bad as it used to be, thanks to the IV hydration I’m getting. Thank goodness, starting at the next round of infusions, the hydration is going from 500ml to 1L each infusion. That should help! Also what helps is drinking alkaline water with electrolytes and B vitamins in it. Last round I drank tons of that, and barely had any side effects. Unfortunately, I didn’t have any money to buy any water this round, so I just tried to drink regular water. Not as helpful as the other water. Hoping to get some other water for my next round.

This guy is the best therapy dog ever. He knew I wasn’t doing very well, and stayed by my side the whole time. The only time he left my side, was when my son took him out to go to the bathroom. Otherwise, he was by my side all day. I just love him so!

Got done with my infusion a little after 4pm, just in time for my husband to get home from work so we could go to the chiropractor. I like going to her the week of my infusions, because whatever she does to me really helps me get through the night, the side effects, and the rest of my infusions for the week. It really helps so much!

Well, that’s it! Just laying in bed waiting to go to bed. I have to stay up till at least 10pm to take my dog out for his last bathroom break of the day. I’m so ready to go to bed though.

Day 4, last day tomorrow.

Have a good night!

Round 22 Day 2!

Today went okay. Still no blood return, but I’m still flushing and flowing good. My nurse isn’t too concerned about it right now, but we do have some Cath Flow on hand in case we need it.

My IV hydration really helped today. The side effects were at a bare minimum. I’m getting 500ml of hydration right now, starting next round, my doctor upped my hydration to 1L. I requested it, since it really helps.

Found this today, and felt it was really fitting. I struggle with so much, and money is one of those things since I can’t work anymore. The struggle is real people! I hate always being broke!

Well, I feel a headache coming on. I’m going to take some Excedrin, and Netflix and Chill!

Day 3 tomorrow! Goodnight!