Just not in the mood!

Someone please tell me, am I wrong for not wanting to decorate for Christmas? I’m sorry, but I’m just not in the mood for Christmas. I’m depressed, and suffering from horrible anxiety right now. Do i really need to decorate?

I don’t have any young kids at home, and my youngest, who is 18, doesn’t really care for Christmas. Not that he’s a party pooper or anything, it’s just that his dad went into the hospital on Christmas Eve, and never recovered. He passed away shortly thereafter, so he said he doesn’t care if I decorate or not. Is decorating for Christmas really mandatory?

Why am I fighting myself on this? One day I say I should decorate, because that’s what I’ve done every year, and the next day, I’m telling myself it doesn’t really matter, and that I can skip this year. I guess im so conflicted because i always made a big deal about Christmas when my kids were young. We always decorated, whether they had presents to open or not.

At this point, I’m just not feelin’ Christmas this year. I’m not happy about it, I’m not sad about it, I’m just not anything about it. It really doesnt matter to me this year. There’s always next year, right?

Round 18!

So, last week was round 18 of my IVIG. I can’t believe it’s been a year and a half since I started this journey on this medication. I’ve had a lot of up and downs on this journey, and I know I’m going to continue having ups and downs, especially since I’ll be doing my treatments every 3 weeks now.

 

Day 1

I was so tired this day. We had just gotten back from our trip to Yosemite the night before. I really wasn’t looking forward to doing my infusions, but it needed to get done. I also got to sit in my grandma’s chair for the first time. My cousin gave it to me the night before we left for Yosemite, so this was a nice treat for me today. Everytime I closed my eyes, I could see my grandma sitting in the chair knitting or reading. So peaceful!

 

Day 2

Decided to wear my Jo Koy Bicks Baporub shirt, hoping that this would cure me, instead of having to do these damn infusions all the time. Just kidding! I use it for a lot of things, just like my Nana did when I was a child, but I know it won’t cure my lupus.

Day 3

This guy is my rock! I don’t know what I’d do without him. I had a different nurse this day, and I wasn’t sure how he was going to react, or whether I was going to like her, but it all worked out. I hate having different nurses. I used to be a nurse, and I know continuity of care is best!
Side effects were a bitch this day! I was in so much pain. The pain started in my lower back, and traveled up my spine to my neck. I took some Ibuprofen and got my heating pad, and I think I fell asleep.

 

Day 4!

I was so done with this week! It was a stressful week, and I was so over it. I have to remember not to take any phone calls or texts during my infusions. People really know how to upset me, and it seems it happens everytime I do my infusions. I’m so over everything! I can’t take anymore!

Now I’m on to every 3 weeks. Not sure I’m going to be able to handle it, as the 3 days after my infusions seem to be the worst! Side effects and stress are at an all time high. I’m not going to have much time inbetween to recoup, so we’ll see how it goes.

Until next time…

Round 17!

I know, I know! I haven’t been writing lately. I was supposed to write a blog post on the events I went to after my surgery, but I never got around to it, and frankly, I don’t think anyone cares. I know that’s sad to say, but I write, mainly, for my own benefit. I hope people will read my blog, and that it helps them, but I know they don’t.

So, round 17 of my IVIG infusions was last week. It was a rough week, because I wasn’t feeling so good, and it seemed the IVIG was hitting me hard. I had a headache all week, and a little lower back pain. Overall, it wasn’t too bad, but I just wasn’t feeling it.

Day 1… this is what I get everyday for 4 days!

Day 2… This is how I spent Halloween!

Day 3… November happened!

Day 4… So over these infusions!

By the end of the 4 days, I was just so over my infusions. Too much shit happened these 4 days, that I was just completely overwhelmed! Bad phone calls, pharmacy issues, side effects and life in general just all got to me. From now on, I won’t be taking any calls during my infusions. I may not even return any text. I really just need to chill and relax during my infusions, but that never happens.

So that’s it! Round 17 is done and over with. Now we’ll be on to doing infusions every 3 weeks from here on out due to the results of my biopsy. Don’t ask! I don’t want to talk about it, because it’s just another diagnosis. My body really fucking hates me!

Anyway, I’ll try to write more, but I’m not making any promises!

Round 16!

Last week, I had my 16th round of IVIG infusions. I didn’t get a chance to write any blog post like I normally do each day, as I was so exhausted each day. I think my body was still recovering from the surgery the previous week.

 

So, this is me on day 1. Look at those bags under my eyes!

I had an outside agency nurse, a male nurse. This is the first time I’ve ever had a male nurse. They had to get an outside agency to do my infusions a couple days this month, because my regular nurses weren’t available. He was nice though. If I ever have to have an outside agency again, I’d ask for him.

 

This is day 2, but this is what I get everyday, 35 grams of IVIG and a bag of hydration.

Day 2 went well. I had one of my regular nurses this day, Susan. She’s the sweet, quiet one. I really like her. We have a lot in common.

I actually think I fell asleep for a couple hours this day. I was so tired I could barely keep my eyes open. I really wish my sleep was productive, but I barely sleep. I can still hear what’s going on around me.

I did have some high blood pressure this day. I took a Xanax, and it brought it down to normal. I don’t know what was going on. I didn’t feel like I had any anxiety, but the blood pressure started to go up, and since I’m already on 2 blood pressure medications, a xanax it is.

 

I had both these guys for Day 3. Dallas, the dog, is my emotional support dog, and is always with me for infusions, but the cat, Justice, decided to hang out too and keep me company.

Day 3 went okay. I had the male nurse, Aaron, again today. My blood pressure was a little higher than normal, but not enough that I needed to take any medication. I did fall asleep again for a little while. I told you, I’m just so exhausted. With my surgery the previous week, then infusions the week after, my body is dying for some rest! I also had some side effects; the lower back pain which runs up my spine into my neck, and a slight headache. It wasnt too bad, like it used to be before the hydration. I took some ibuprofen and it helped.

 

I posted this on my instagram for Day 4.

By day 4, I was completely fed up. Not with my nurse, (I had Susan), but with being sick, and having to go through all this. I really need a break from my health. I just keep getting hit with more and more health problems, and I’ve had enough!

After the infusion, the needle got taken out of the port, and I was free! It’s always so great to get to the end of the week, because while the needle is in the port all week, I can’t take a shower. I’m only allowed to take a very careful bath, so as not to get my port wet.

So, that was round 16. I still can’t believe it’s been 16 months already, but it has.

I have some other blog post coming up, of things I’ve done in the last couple weeks, but those will come soon.

I hope everyone is well. Take care!

Muscle biopsy

So, last Monday, September 25th, I had my muscle biopsy done. It was a long day! I was so very nervous when I first got to the hospital. I wasn’t sure if they were going to cut me open or just do a needle biopsy. The surgeon and anesthesiologist came in and talked to me, explained everything, and told me they were going to cut me open to get a good tissue sample. They also told me that instead of sending the sample to UCSD, they were going to send it to New York. I’m assuming to the Mayo Clinic. I don’t know why the last minute change, but whatever gets me some good lab results and some answers, I’m all for it.

I was in pre op for about 2 hours, surgery for an hour, and recovery for about 3 hours. I heard from the nurses that they had a hard time knocking me out, and had to give me extra anesthesia. That’s not the first time I’ve heard that after a surgery, so I guess it’s something I’m going to have to deal with from here on out.

For the past week, I’ve had a hard time walking. The pain has been really intense at times. My husband was able to stay home with me for 4 days, but he had to go back to work on that Friday, so I was basically on my own. Going up and down the stairs to take the dog out was pretty rough. For 2 days after the surgery, I wasn’t allowed to go up and down the stairs. I didn’t even leave the house those days. Just laid on the couch and caught up on my tv shows.

This was me before the surgery in pre op!

This is my surgery incision. They used dermabond to cover my incision, instead of bandaging it. This incision is about 3-4 inches.

It’s now a week later, but I haven’t taken a picture of my incision. It looks nasty, and is all all bruised. The dermabond is peeling, but it’s healing nicely. No infections or anything, thank goodness! It also still hurts on a daily basis, but it’s more tolerable.

I go see my surgeon next week for a check up. I don’t expect any problems or anything. I also don’t expect him to have any results either. I think my results are being sent to my neurologist anyway.

That’s it for this update. More to come later!

Surgery scheduled.

So, my muscle biopsy is scheduled for Monday. I’m so nervous. Not because it may hurt, or that it’s still surgery, however minor, but because it means I may have something else wrong with me and I’m not sure I want to know now.

I went this morning for pre op. I did all the paperwork for surgery, and had some blood work. I also talked with a pre op nurse, who went over my history, told me about the surgery, and gave me my pre op instructions. She also told me my surgery is scheduled for 1pm, and I have to be at the hospital at 11:30.

My surgery should take about an hour, and I’ll be in recovery for about 2 hours. Then I get to go home to rest. I have to have someone stay with me for 24 hours, then I should be okay. My husband is going with me.

So, that’s it. Will write another blog post after my surgery, when I’m coherent.

Keep me in your thoughts and prayers on Monday!

Muscle biopsy and Stress

Lately, I’ve been under a tremendous amount of stress. There are so many things going on in my life, both internal and external. I don’t really want to go into all that though, because I don’t want certain people to see what I’m writing. So sad when you can’t write what you want, because some people are nosy and will get butt hurt! If anyone knows how to keep a certain post private, please let me know in the comments.

Anyway, I went to see the surgeon yesterday. I don’t remember if I already wrote about this, but all my doctors think I might have some sort of muscle disease/disorder going on. I was sent to a neurologist, who did an EMG, which showed some muscle atrophy and damage. He, in turn, requested I get a muscle biopsy, so we can narrow down exactly what is going on. It took 3 surgeons, before they found one who would do the biopsy. The first 2 surgeons were neurosurgeons, who said they don’t do muscle biopsies, like it’s peasant work or something. Finally, I was sent to a general surgeon, who I finally saw yesterday. He was really nice, and seemed to really care about all I had gone through with the other surgeons the past few weeks.

Since I have an HMO, we have to get approved for the biopsy first, but the surgeon put the authorization in as an urgent request. I’m hoping to have an answer from the insurance company by Monday. Then we’ll schedule the biopsy at the first hospital or surgery center that can get me in the quickest. I just want to get this over with, and get some answers.

Please keep me in your prayers about all this stress I’m going through. Will write another post as soon as I find out anything.

Round 15 Day 1-4!

I’ve been trying to write this blog post all week! It’s been a horrible week. I don’t usually do the whole week of blog post infusions in one post, but since this week has been hell, I haven’t been able to concentrate to write each day.

My infusions are going well, but I’ve had a lot of stress going on around me. It’s been so bad in the last 24 hours. I don’t know if I can handle anymore! I just don’t know what to do! It’s been causing havoc on my infusions, in the sense that my blood pressure has been high, and I’ve had really bad anxiety. I’ve just had enough! I’m glad today is my last day infusion for this week.

Here are some pictures from this week:

img_2042Day 1. Got port accessed! Good blood return! Yay! No problems!

Day 2 underway! Got all my bottles of IVIG and IV fluids going at the same time. Thank goodness for the fluids. It really helps with the side effects! I highly recommend it!

img_2052-1Day 3. I really needed to hang onto this today. The stress from my life is really getting to me. There’s too much going on. I can’t handle it much longer.

IMG_2057

Day 4 is here. I’m so glad it’s almost over. I got more stress today, that has really caused my blood pressure to shoot up, and anxiety to take over. I can’t handle anymore! All this stress is going to be the death of me. Jesus, take the wheel please!

I’m looking at another couple hours, and I’ll be done. I don’t plan on doing anything this weekend. I just want to chill on the couch, watch some tv, and watch my Cowboys play on Sunday! I’m so over this week, and I need a break!

Have a good weekend!

Labor Day weekend with Ivorie!

So, this past weekend, I had my granddaughter, Ivorie for 3 days. She’s 5 months old now, and is just the best baby! We had so much fun playing, watching tv, shopping, and just hanging out. Yes, I know she’s just a baby, but I love spending time with her. I wish I could see her everyday, but she doesn’t live all that close to me. I usually have to go pick her up in Orange County, but it’s worth it to me to be able to spend time with her.

Here are some pictures of my weekend with her:

This is when we first got to my house. She’s such a happy baby all the time. I love her smile!

Me and Ivorie together. She loves the camera.

So beautiful!

img_1957Nana’s little baby doll!

img_2015Ivorie and I laying on the floor watching tv together!

IMG_2038This is when I was dropping my beautiful girl back to her mommy. I was saying my goodbyes. I miss her so much already!

There were plenty of other pictures, but I didn’t want to make this post so big. I think I took over a 100 pictures.

I hope to get her again really soon. Please keep her in your thoughts and prayers. There are some things that I’m really concerned about that are going on, and I don’t quite know what to do about it.