Round 12 Day 4!

One year on IVIG is now complete. I can’t believe I’ve been on it for this long. 

This round went well. I had a different nurse this month, as my regular nurse is really sick and will be out for 2 months. It wasn’t the same without her, but this new nurse was really nice. She’s very soft spoken. I’m probably going to have her for my nurse again next month, until my regular nurse comes back. 

This guy stayed with me all day! I didn’t even have to unhook from my Port to take him out to pee. He just wanted to lay by my side! I’m so thankful for him. He’s the best dog ever. He really helps me so much, especially with my anxiety and stress. I don’t know what I’d do without him. 

Had to take my daughter and her boyfriend to the airport after my infusion was done. I really wasn’t feeling so good, but it was nice to spend a little bit of time with them before they head back to Hawaii. It took us almost 2 hours to get home from the airport, but what can you do? We were driving in rush hour traffic. I hope to get out to Hawaii soon for a much needed health break. I feel so much better when I’m out there.

Well, that’s it! One year done! I go see my doctor on the 28th. I’m hoping he continues to keep me on it. I go get lab work done next Saturday, so I’m hoping I can prove to him that the IVIG works. 

Have a good weekend!

Round 12 Day 3!

Again, I’m a day behind posting my infusion update. Day 3 was yesterday. 

I had both my babies with me most of the day on my bed during my infusion. This is my cat, Justice. He’s a Maine coon cat, and is 8 years old. He’s been with me the longest. 

This guy, was with me too, as usual. If you don’t know who he is, his name is Dallas, and he’s always with my during my infusions. He’s my emotional support dog. He’s the best! He’s 4 years old. I got him when he was 2 years old. 

The infusion went well yesterday. No real side effects from the IVIG. Of course, I got a little lower back pain whenever I got up to go the bathroom or kitchen, but as soon as I got back into bed and got settled, it went away. I’m glad I no longer get the awful headaches. Those went away several months ago. I also think I fell asleep a couple times through the infusion, but not for long. Maybe 20 minutes here and there. For some reason, this month’s infusions have really made me so tired. More so then any other month. It’s weird. Other than that, all is good, and all went well.  The port is working like a charm! I’m so happy with it!

That’s it for now. 

Round 12 Day 2!

I know, I know, I’m behind on each days post. Day 2 was yesterday. This month, I seem to be so tired with each day’s infusion. I don’t know why I’m so overly tired this month. Maybe because my health isn’t too great lately. I’m also a week behind on doing my infusions. I was supposed to do them last week, but due to my son’s graduation, I put it off a week. I can totally feel the difference. My body seems to know when it’s due.

This guy hung out with me all day yesterday. He always does, but today, he was so, very affectionate. I love when he’s like this! 

Overall, the infusion went well. I didn’t have any side effects at all. Not during the infusion, or overnight while I slept. I can’t believe it! I guess being on this for a year now, my side effects have subsided. I’m so glad. The headache and lower back pain was the worst!

Round 12 Day 1!

Yesterday started day one of my IVIG infusions. I was so tired yesterday, that I couldn’t get this post out. 

I can’t believe I’ve been on IVIG for a year now. It was a rough start at first, but the side effects have gotten better. At my last doctor appointment in March, my doctor talked about taking me off the IVIG after  a year. I really hope he doesn’t. It’s really helped me better then any other medication I’ve taken. It’s not perfect, and doesn’t help every symptom or ailment, but it works, and I don’t want to stop. 

I actually think something else is going on with me. Doctor thinks it’s just myopathy, but I believe I might have some sort of muscle disease. Two weeks ago I was in the emergency room, as I was having what I thought was left kidney pain. It hurt so bad, and I resist the emergency room at all cost. They did all kinds of test, but told me it wasn’t my kidneys. My ck level was up, so they gave me two liters of fluids, which brought the level down somewhat, but they think my pain was maybe a muscle strain from going to the gym like the doctor wanted me to. I’ve been going to the gym, just walking on the treadmill slowly for two month now, but I guess exercise isn’t good for me. Trying to get my doctor to believe this isn’t going to be easy, but I’m going to prove it to him. Before I started exercising, my ck level was in the 400’s. In the ER, it was in the 1600’s and came down to the 1100’s after fluids. After this week of IVIG infusions, I’m going to get lab work down, because I have a doctor appointment on June 28th. I’m hoping my ck level has come down, and I can show this to the doctor to prove it was because I was exercising. Not that I want to stop exercising. I really need to lose weight badly. I’ve gained so much wait since being sick, so I enjoyed going to the gym. I don’t know what else I can do to get some exercise, and lose weight without killing myself. Any suggestions?

Three more days this week, then I’m done. A whole year has gone by. I can’t believe it. I’m hoping someday, a better medication will come out for lupus, and put this shit into remission. I’m so tired of lupus ruining my life! 

Have a good week people!

My baby graduated!

I can’t believe my last child graduated on Thursday! It was close! He kind of slacked off, and we weren’t sure he was going to make it. I’m so happy he did. I’m so incredibly proud of him! 

This was our view for the graduation. We are a beach city, and his school is just a block up the street. You can actually see the ocean from his school. As far as I know, they’ve done the graduations down at the beach forever. It was so nice. Not too hot, wonderful view, and a nice breeze. 

My older daughter, Tiffany and second daughter, Alyssa surprised their little brother by coming here for the graduation. He had no idea they were coming, because they live so far away. Tiffany lives in Hawaii, and Alyssa live in San Francisco. He was so happy they were there for his graduation from high school. 

This is one of the many pictures we took on the beach afterwards. 

After the graduation, we all went to El Torito for dinner. It was so good. Just as we were about to leave, they gave us these props and had us take some pictures. This is one of them. It was a good time by all.

So, now that graduation is over, and school is done, Anthony needs to decide what he wants to do. He thought about going into the army, but changed his mind. College is out of the question for now, as he just doesn’t like school. I’m going as he gets older, that he’ll change his mind. 

Happy summer!

Round 11 Day 4!

This is how I feel today! Seriously! I’m so glad this months IVIG infusions are over. It was a long 4 days. I’m exhausted, in a little pain, and just completely overwhelmed. 

Today was a rough day. For some reason, my blood pressure was high. I have no idea why. I took a Xanax, and it brought my blood pressure down. I couldn’t take my blood pressure meds to help with this, as I’d already taken them this morning and last night. At least the xanax helped. I was also so fatigued, but every time I tried to doze off, I just couldn’t. I’m hoping I’ll get some good sleep tonight. Any suggestions?

I’m not looking forward to the next few days of pain and side effects. It’s totally going to ruin my birthday this weekend, but I’m just going to try and rest as much as possible. Everyone can kiss my ass this weekend. I’m not doing a damn thing. I’m just hoping the hubby planned a dinner for me for my birthday Sunday, but I doubt it. He hasn’t done anything for my birthday in 11 years! 

Have a good weekend everyone! 

Round 11 Day 3!

Along with having my third IVIG infusion for this week, it is also World Lupus Day. Crazy that I’m fighting Lupus, and having an infusion on this day, but this is my life. 

I don’t really like taking pictures of myself, but I thought since it was World Lupus Day, that I would post a selfie wearing purple to represent my fight, and raise awareness. Did you all wear purple today?

So, my infusion went well today. I had a little lower back pain, but only when I had to get up to go to the bathroom, or take my dog out. I’ve been drinking plenty of water, so the pain usually subsides as soon as I sit back down and get comfortable. This guy stayed with me all day. He always helps me get through the day!

One more day of infusions, and I’m done for the month.