I’m Back!

Hey readers! I’m back! I know it’s been a long time. The last year has been such a shit show! Did anyone expect 2020 to turn out like this? I sure didn’t. 

So, where have I been? Well, I originally disappeared because I was getting comments from family saying that all I write about is my health, and that’s all I focus on. Well, this is my blog, and I’m trying to help other people going through the same thing, but it really got to me, so I just shut down. Then the pandemic hit!

During the pandemic, I’ve been home. I don’t go out unless it’s for a doctor’s appointment that can’t be done via video. My husband runs all the errands, so that I don’t have to go out, and risk getting sick. Thanks honey! He was doing the grocery shopping too, but now we get our groceries delivered. Thank goodness for the little things like that. One less thing for him to have to do.

I’m still doing my IVIG, but as of last week, my doctor, nurse and I have decided to switch me to SCIG. This way I’ll be able to do it myself, and it won’t take all day like the IVIG does. Only thing with the SCIG is, I have to do it every week. I’ll be starting the SCIG this week, so wish me luck! I’ll let you know how it goes.

I have been able to see my oldest grandchild, Ivorie during the pandemic. She’s come and stayed with me a couple times. She’s getting so big! I can’t believe she’ll be 4 in March. She loves coming to Nana and Papa’s house, and never wants to go home. We love having her here. I also get to see my second grandchild, Avery via FaceTime several times a week. She’s 14 months old and just the cutest thing. She knows who her Nana is, because we FaceTime enough, but she hasn’t said Nana yet. Hopefully she will soon. I just love my grandkids so much. I wish I could see them every day. And now I’m going to have another one. My oldest daughter is pregnant and due in February. I’m leaving in January to be there for the birth of her baby. I’m so excited! I just can’t wait to see my daughter, son in law, and the new baby when they come. She doesn’t know what she’s having, so we’ll all be surprised. I’m just so happy that she asked me to be there!

Well, that’s the update. I want to thank my twitter friend, Shruti for talking me into writing again. She really gave me that push I needed. Maybe someday I’ll get my own domain name, and start a real blog. Until next time…

Round 45!

Round 45 was the week of August 5th. It was 4 weeks from the last round of infusions, as they wanted to give me a registry nurse, and again, I said no. I guess they keep losing regular nurses, plus they let too many people go on vacation at the same time. All the while, the patients suffer.

Anyway, my nurse, Debra was back. She was out for awhile taking care of her daughter who had surgery, then she had surgery herself. I’m just glad it was a nurse I know!

The week was horrible! I had a migraine all week, and for several days after I was all done. I was miserable! At that point, I hadn’t started the Aimovig or had the Occipital Nerve Block yet. I’ll tell you about those in an upcoming blog post.

I slept through most of my infusions, and I don’t even remember the weekend after my infusion, because I was so sick from my migraine, that I just slept the whole weekend away. It was just absolutely horrible!

Anyway, I’m back on schedule with my infusions now, every 3 weeks. I’ll catch up with the next round soon!

Round 44!

I know, I know, I’m so far behind on these blog post. Life and other shit has gotten in the way, especially migraines! Round 44 was the week of July 8th. It was 4 weeks after the last round, instead of 3 weeks, because there was a mix up of nurses , and they wanted to give me a registry nurse again. I don’t understand why I’m the one getting stuck with the registry nurses, but that’s a whole other story.

Anyway, I had my nurse Elizabeth back. Well, back, but it was her last week. She was resigning to move out of state. I’m really going to miss her. She’s been with me for over 3 years. We’ve become really good friends.

The week went okay. I slept during the infusions, so I didn’t get to talk to Elizabeth very much. The side effects have been so bothersome lately. The migraines are even worse during infusions. I don’t know why. Before, I would just get a headache, but since I’ve been suffering from migraines lately, now during infusions, the headaches have turned into migraines, and they last for a week after the infusions are over. It’s just ben the worst! The doctors are trying to figure out what to do about my migraines, so hopefully we find something that helps soon.

This guy laid with me like this all week trying to comfort me. He’s such a lover! He knew I wasn’t feeling well, and just cuddled up to me to make me feel better. He lays with me the whole infusion every day!

There’s not much else to say. I wasn’t feeling good the whole weekend, and I did my very best to rest. I think I slept on and off all weekend.

I’ll get caught up soon!

Round 43!

Oh my, this post is so late! Round 43 was the week of June 10th. This round, I had to do my infusion at 4 weeks, instead 3 weeks due to no nurse available, unless I wanted a registry nurse (a hard no). I had a new nurse that I’ve never had, Nicki, because Elizabeth is out of town, as her daughter is having a baby. I’m only going to have Elizabeth 1 more time anyway, as she’s moving out of state. I’m really going to miss her! We’ve been together for 3 years, and have become really good friends, but that’s a whole other blog post.

Anyway, Nicki was really nice. I really like her, and we had a lot in common. I needed to fill her in on how I do things, because I have my own routine here, how I do my infusions and stuff, but she was cool with it. She was really easy going, and at the end of the week, I asked the company if she could be my regular nurse once Elizabeth was gone.  They said yes, but what they say, and what they do are 2 different things, so we’ll see. I hope they give me what I want. After all, I’m the patient!

Since I’ve been suffering from migraines on the regular, the side effects were a bitch this week! It starts in my neck, and goes up to my head with a bang. I have one of those roller things, so I rolled my head and neck each. day, then took some migraine meds, and closed my eyes in the dark. Each day was like this. I’m hoping my doctors can get these migraines under control soon. I’m supposed to have an occipital nerve block done the first week of August, so hopefully that helps some.

Next round of infusions won’t be for 4 weeks due to the holiday. I hate when this happens, because my body can feel not having an infusion at 3 weeks, but there’s nothing I can do about it.

Until then…

Round 42!

Round 42 started on Saturday, May 11th. We started it on a Saturday, as my regular nurse Elizabeth came back, but she was going out of town on Wednesday for the birth of her grand baby. I didn’t mind doing it on the weekend, but I don’t think my husband was too thrilled! I also found out from Elizabeth that she’s moving in August, so she won’t be my nurse anymore. I’m so sad, but she’s going to live with one of her daughter’s to help her with the kids. Hopefully I can find a good replacement that I like and get along with.

The next day was Sunday, Mother’s Day. I don’t usually do anything for Mother’s Day anyway, and none of my kids were around, except Anthony, who lives with me, so it was all good. So this was how I spent my Mother’s Day:

I slept most of the infusion until Anthony got home from work. I’m glad I slept, because I had a migraine. I don’t know why, but for some reason, I’ve been getting a lot of migraines lately during and after my infusions. I’m going to have to talk to my doctor about it.

Anyway, when Anthony got home from work, he brought me flowers for Mother’s Day. I was so surprised! It was so sweet of him, and made me tear up. They were so pretty!

Day 3 was the day before my birthday. I can’t believe I was turning 51. Here’s me in the last day I can wear this shirt.

I slept most of the day, because my head and back were hurting. No matter how much fluids or water I drink, the side effects still get me. I just can’t get away from them.

Happy birthday to me! I can’t believe I have to do my infusions on my birthday, but at least it’s the last day. Also, I can’t believe I’m 51 years old. Man, where do the years go?

I’m so glad I got to see Elizabeth again, but I’m sad that she’s moving away in August and I won’t see her anymore. We’ve been together for 3 years. I’ll miss her!

After this round, I got really bad migraines, and had to stay in bed all weekend, and part of the following week. My migraine medication isn’t working, and I may need to find new medication to help me. Hoping to see my neurologist soon.

 

Sengbirch Compatible Keyboard Case with Detachable Keyboard Review!

Since I’m in bed a lot because of chronic illness, and I don’t always want to go get my laptop from the livingroom, and typing on my ipad’s touchscreen has gotten a lot harder for me, I figured I should get this case with a detachable keyboard for my ipad. It makes it perfect to use in bed, as it turns my ipad into a mini computer. The keyboard has a backlight feature which makes it better able to see the keys in low light, and perfect for me to use when my husband is sleeping. It has 3 levels of brightness and 7 different colors of light to choose from. Purple is my favorite!

The keyboard hooks up to your ipad via bluetooth, and is IOS, android and windows compatible. The leather case it comes with locks your ipad in place, and holds the keyboard in place via a magnetic system. The keyboard charges quickly, and can hold a charge for a few days. The case is strong, looks nice and protects my ipad.

Purchase here:

Multicolor Stainless Steel Straws Review!

These straws are amazing! They are metal and come in vibrant rainbow colors, both with the 5 vertical, upright design and the 5 “bendy straw design,” so you get a nice mixture of both as part of the collection.

They are easy to clean; I just pop them in the dishwasher and they’re done. It also comes with 2 cleaning brushes, which I use to quickly go through the straws before I throw them in the dishwasher.

These are very sleek and stylish, and will add a touch of class to your beverage of choice. Not to mention they are totally eco-friendly! I make sure I always have a straw with me wherever I go, so I don’t have to use a plastic straw.

The only thing I’m not happy about, is that these straws aren’t as long as my other metal straws that I already have, but that’s okay. These are colorful, and so cute, so I know that I’ll still use them anyway.

Purchase here

Alfa Gear Towel Seat Cover Review!

This microfiber towel seat cover is exactly what I’ve been looking for! It is the perfect size to cover my seats for when my husband is done working out at the gym. He is always so sweaty, and just putting towels down on the seats, just doesn’t cut it. The towels slide around, and my seats still get wet. This microfiber towel seat cover has a nonslip backing, so it doesn’t slide around on your seats, and it installs in seconds, with a buckle that goes around the headrest.

Since I live at the beach, this is going to be perfect for those beach days when we’re all wet and sandy, and I don’t want to get my seats all messed up, because this towel seat cover is 100% waterproof.

The towel seat cover is machine washable on the gentle cycle, and should be air dried. Or for simple cleaning, you can just wipe it down. It’s that easy!

Purchase here

Round 41!

Round 41 was the week of April 22nd, so I’m not that far behind on writing this blog post! Ha! Still no blood return this round, but really nothing to worry about, so says my nurse.

This was a hard week for me, because I was also sick with bronchitis. I didn’t sleep much during my infusions, because I was also on antibiotics, prednisone and bezonatate. I tried to rest, but I was uncomfortable, and, I think, overly tired, that I just couldn’t fall asleep.

Side effects were the same. I did get a migraine, which screwed with the trigger point injections I had 10 days earlier. I was hoping the trigger point injections would’ve lasted longer, but I think because of the infusions, and the aseptic meningitis I get as side effects during the infusions, they didn’t last. I plan on getting the injections again though in a couple months.

Next round, my regular nurse, Elizabeth will be back. We’ll be doing my infusions a couple days earlier, on the weekend. The husband isn’t thrilled that we’re doing it on the weekend, but if I don’t, I’ll have to have a registry nurse for my regular week, and that’s a no go for me.

Until next time…

Round 40!

Round 40 was the first week of April. The only problem we had, besides the usual side effects, was that we didn’t get any blood return from my port when we accessed it. It flowed good, and the medicine went in fine, so my nurse isn’t worried about it. We tried each of the 4 days to get some blood return, but we never did get any.

During the week, I got a couple of migraines, associated with the side effects of aseptic meningitis that I get during my infusions. They weren’t that bad, but I did need to take my migraine medication to get rid of them. I also used my heating pad to help with the associated back pain going up and down my spine.

I slept a lot this week, but it wasn’t good sleep, because my nurse wakes me up all the time for vitals. I wish I could just sleep right through. I really need the sleep!

I didn’t really get to rest much the weekend after infusions, as my dog had a groomer appointment, but at least I didn’t have to drive. My eyesight is really off after infusions, I don’t know why. It usually takes my eyes about a week to regain focus enough for me to be able to drive again.

That’s it! Still catching up!