Round 14 Day 2!

Accessed the port today, but no blood return. The nurse and I weighed our options, got counsel from her company, my doctor, and interventional radiology at the hospital.

According to her company, and the counsel of 2 other nurses, including her boss, it was okay to go ahead and do the infusion.

My nurse called interventional radiology at the hospital, who said that if I came in the first thing they would do would be give me TPA, to help in case of a blockage or clot. They suggested we call my doctor and get an order for that, which my nurse could give me.

Next, my nurse called my doctor. That was several different calls, but we finally got answers. Long story short, the doctor said go ahead and run the infusion, he ordered the TPA for the nurse to try tomorrow, and they’re getting me a referral for interventional radiology to see me Friday, if the TPA doesn’t work.

By the time we finished all those calls back and forth, it was already 10:30 am. My nurse had been at my house since 8am. We’re supposed to start my infusions early, because it takes 7-8 hours to infuse. We finally got done at 5:30pm.

I feel like crap right now. I’m just trying to rest, but I’m so worried about the port. I’m hoping it’s just some fibrin sheath covering the port, and the TPA will dissolve it. I don’t really want to go to the hospital.

They’re supposed to deliver the TPA tonight, so we can try it tomorrow. They said it should be at my house by 9pm. That’s late huh? I think they’re driving it from Santa Fe Springs so I can have it tomorrow. Usually they ship my meds via UPS.

I hope everyone else is doing well. Have a good night. Pray for better luck for me tomorrow!

Round 14 Day 1!

I’m a day late posting this. Didn’t feel like writing yesterday after my infusion!

Monday was day one of treatment for this month. It started off with problems. The port is flushing good and infusing just fine, but it’s not giving any blood return. We went ahead with the infusion, and tried again for blood return after the infusion, but nothing.

We decided to pull the needle out after the infusion was done. The reason for this was that we were hoping that the next day, inserting a new needle and trying to get blood return would work. I’m just glad it infused just fine, and I was able to get my treatment. I didn’t want to go without it, as I’m already starting to feel symptoms before this months treatments started. I wish my doctor would let me do them every 3 weeks, but he won’t

I’m so glad that this guy, Dallas, stayed with me all day. I was having anxiety about the port, and I needed some comfort. He’s the best therapy dog ever! He always knows what I need!

Neurologist appointment!

So, I was sent to see a neurologist by my rheumatologist, as the muscles in my legs are getting worse. I can’t climb stairs or get up from a sitting position without help. I was sent to The Neurology Center, which is a whole slew of doctors, who each deal with different specialties.

When I got there, I had a whole shit load of paperwork to fill out. It gets kind of tough, when your hands cramp up all the time. Took me awhile, but I finally got it all done.

When I was called in to see the doctor, the medical assistant first did my height, weight and blood pressure. I lost 4 pounds. That makes me happy. I guess being gluten free and dairy free is helping. Then, I was put into a room to wait for the doctor. Luckily, I didn’t have to wait long.

When the doctor came in, he introduced himself, looked over the notes from my rheumy, then asked me how I got into his clinic? Huh? What? He said he specializes in Epilepsy, not the muscle diseases that I was there for. He was very nice though, and said he would do my assessment, then refer me to the correct doctor.

After my assessment was over, he tells me that I’m in bad shape, and was going to schedule me for an EMG, which, I guess is some sort of muscle test. After that, depending on what this test says, I’ll be scheduled for a muscle biopsy. He also said he’ll make me an appointment with the correct doctor for me to see after the EMG.

So, I’m scheduled for the EMG on August 16th, and then I have an appointment with the right doctor, but not till September 20th. I asked to be put on the list in case a patient cancels. I don’t want to have to wait till September to get my results, see the new doctor, schedule the biopsy, and find out what the hell is going on with my muscles. I hope they call me sooner. I’ve waited long enough, and have gotten worse over the last 3 years. It’s time for some answers.

I hope everyone else’s health is going better than mine.

Have a good week people!

A little FYI!

So, it’s been several days since my IVIG infusions. I’ve been trying to rest as much as possible, because I feel so tired and weak. I had a rough time this round, and I don’t know why. That’s why we started running an IV bag along side the IVIG. Let me tell you, it so helped!

Usually the weekend after my IVIG, I’m hurting so bad, that you can’t even touch me. My skin hurts to the touch, and I’m in so much pain. Because I got an IV bag with my IVIG last Thursday, my pain wasn’t so bad on Saturday, like usual. Next round, I’ll be getting an IV bag each day with my IVIG. If after only 1 day of an IV bag helped that much, I’m hopeful that 4 days of an IV bag will help with side effects and the pain that I get the weekend after my infusions.

So, my advice to you all on IVIG, ask for an IV bag to run alongside. It helps so much!

I’m off to the neurologist tomorrow. So nervous! Will update about that in another post!

Goodnight!

Round 13 Day 4!

So this is how my infusions will be going from now on. Since I had bad side effects yesterday, we are now running an IV bag of saline alongside the IVIG. Doctors orders! I’m really hoping this works, and even helps with the side effects I have for the 3 days or so after my infusions. Please let it help! The side effects just about kill me!

Luckily I had this guy with me all day. I don’t think I would’ve gotten through the day with out him. He stayed right on the bed with me all day. He really knows when I need him, and is always there. He’s the best emotional support dog ever!

So, side effects weren’t too bad today with the saline running alongside the IVIG. I only had lower back pain, but it didn’t last very long. It kept coming back every time I had to get up, but as soon as I settled back into bed and got comfortable, it went away. I’m glad I didn’t get the headache. It’s the worst!

I’ve been laying on the couch since about 5pm, and now my body is starting to hurt. I’m having some achy, throbbing, stabbing kind of pain. I think a headache is coming on now. I think I’m going to go take some ibuprofen, until bed time when I can vape some mmj. 

Goodnight!

Round 13 Day 3!

So, today didn’t go well! For some reason, I started having bad side effects again. First it started with the lower back pain after I got up to go to the bathroom. As soon as I came back to bed, the pain was intense. Then, the pain started going up my spine, and eventually to my neck. It hurt so bad! I heard it’s called aseptic meningitis, but who knows. My nurse had me lay flat, and I think I fell asleep for awhile.

After I woke up, she talked to me about a few things we could do to help eleviate any side effects for tomorrow. She mentioned calling the doctor and getting an order to run an IV bag of saline at the same time as the IVIG, which she said has helped her other patients. She also mentioned running the infusion rate only up to 50 instead of 60.  I’m actually supposed to be running my rate up to 80, but at that rate, I get horrible side effects, which we learned at the beginning of my IVIG treatments last year. 

So, my nurse called my doctor, but they were closed for lunch. She left a message for them to give her a call back, but that call didn’t come before we were done with my infusion. I hope they called her back today, and that she’ll have an answer for me tomorrow. 

Since my infusion has been done for the day, I’ve been laying on the couch just trying to rest, and watch tv. I really can’t get  into any tv show, as my pain is intense right now. I’ve been alternating between Tylenol and ibuprofen, but nothing is helping right now. I think I’ll try some mmj when it’s time for bed. It’ll usually help with the pain, and help me sleep.

I also found out yesterday that my current authorization for my IVIG ends before my next round of treatments next month. I immediately called my case manager, who in turn called my doctor, who in turn called me to let me know they were on it, and would try to get a new authorization before August. Well, today I get a call from the guy who handles the authorization at Option care, the place who deals with my IVIG and my nurses, and he told me they had the authorization, and it was good until February of 2018. I couldn’t believe they got it approved so fast! It’s all because I have a case manager now through my health insurance, United Healthcare who really advocates for me. I recommend everyone get a case manager if you’ve ever had to fight your insurance companies and doctors for treatments.

So, that’s it! I’m just laying in bed now, waiting for 10pm to get here, so I can take the dog out and go to bed. I’m so tired, and in extreme pain! 

Goodnight!

Round 13 Day 2!

Day 2 went well. No real side effects. I was just extremely tired, and I think I fell asleep for a few minutes. I think since I’ve been on IVIG for over a year now, the side effects have finally dissipated. I did wake up this morning with a pain in my neck, but I think it’s the way I sleep and my crappy pillows.

I’ve been laying on the couch since my infusion finished. I’m so tired, but trying to stay awake, so I’ll be able to sleep tonight. Watching AGT now.

The stress so far this week has been so bad. Why do people always have to stress me out during my infusion week? It happens every month!

 I’m so done with everything, but I don’t have anywhere to go, and I can’t afford to live on my own. Being on Social Security Disability doesn’t allow me much money, so I’m kind of stuck! Being stuck is just the worse. Doesn’t help much when you have a chronic illness that others refuse to deal with or help out. It’s such a sad situation. 

Day 3 tomorrow!

Round 13 Day 1!

Yep! You’re reading that right! Another month, another round of IVIG! I’m on round 13. I can’t believe I’ve been on it for over a year.

At my last rheumy appointment, we decided that I’m going to stay on it, at least for a while longer. My doctor believes it’s working, even though my CK level doesn’t get down to normal levels. He is referring me to a neurologist, due to the fact that we both think I have some sort of muscle disease that is making matters worse. Hoping to get in for that appointment soon!

Today’s infusion went well. I had the nurse I had last month, Susan, since my regular nurse, Elizabeth, is still out on medical leave. I’m hoping she’ll be back soon. I do like Susan though. She’s so quiet, doesn’t really bother me, and is very nice.

I didn’t have any side effects today, except the extreme fatigue. I think I fell asleep for about 20-30 minutes today. That’s how I sleep at night too. No wonder I’m always so tired.

My port is still working like a charm. I’m so glad I got it! I just wish my doctor would’ve approved it sooner! He’s always so difficult!

Day 2 is tomorrow, bright and early at 8am. We have to start early, as it takes about 7-8 hours to infuse. I wish I could go to bed now, as I’m exhausted, but I have to wait until 10pm to take the dog out for his last potty break. No, I don’t have any help!

Goodnight!

My weekend with Ivorie!

This is me with my granddaughter, Ivorie Skye! She’s 3 months old. She stayed with me this past weekend. She was so good. She’s a very chill baby. 

This is her being silly. She’s all smiles and laughs almost all day! 

This is us watching Finding Dory! She loved it!

Saying goodbye to Papaw. We were so sad to see her go home on Sunday. 

We miss her so much already. Hoping to get her again soon! I can’t wait till she’s old enough to enjoy going to Sea World and other fun places.

Nana loves you baby girl!

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!