Life has been so busy lately for me, I’m going to take a definite break here until after the wedding is over.
I keep finding myself getting more and more stressed and anxious and I am just trying to let go of thingsIneedtodo on my long list that aren’t priority #1. I promise to be back soon!
No, I’m not pregnant.
7 weeks til the wedding!
Here are my goals for this week:
3 days – 1/2 hour cardio
3 days – strength training
2 days – yoga or Pilates
It is hard to say I will do things on specific days because some days with being busy at work and Lupus off days I may not feel up to strength training, but may feel good enough to go on a walk or do some yoga. I just like to have main goals.
Also: EAT REAL FOOD. As much as possible. Try to limit sweets and processed junk. I am not trying to lose weight until after the wedding, so I will just try to maintain and tone up. I plan to stay around 2,000-2,500 calories, depending on how many calories I am burning per day. I will still wear my Bodymedia Fit to figure that all out.
Hope you all are having a fantastic weekend!
- Art project! This project doesn’t even require you to get your hands dirty!
Take some time today to go to Wordle and create a word cloud or tree from a list of words associated with your condition, blog, or interests. Think of it as a collage for your thoughts. Inspire others with your words in a different way. Bask in the cool waters of the stream of consciousness and express your thoughts about your condition!
I have been so busy!
It seems like that is all I say here anymore, but it is true.
Yesterday was spent in pain. I didn’t get much sleep the night before. On Sunday night, we noticed some siding had come down off the side of our house due to the windy day we had. Unfortunately, we didn’t have a ladder long enough to reach the problem pieces. We had to wait til the next day to do anything about it. I kept hearing one piece of siding flap against our house all. night. long.
Every once in awhile I also have terrible night sweats. I think it is from the Prednisone. I wake up and am DRENCHED in sweat. From my scalp to my feet. I literally have to get up and put on dry clothes. It is miserable. Most times it takes me awhile to fall back to sleep. This happened early in the morning around 4:30 am. I didn’t sleep well after that.
This past weekend I started feeling some muscle tightness and pain in my mid back. I wasn’t sure what was going on, but figured it would pass. It didn’t. Yesterday found me feeling as if i couldn’t move from my shoulders to my hips. I made it through work, and made an appointment to get in for a massage that evening.
Austin and I went and picked up a ladder and since I wasn’t much help, Austin’s brother-in-law came over and helped him put the siding back up. I headed off to my massage instead.
My massage felt great, and afterwards I went to Michael’s and picked up some flowers and crafty stuff for the wedding. Got home and watched Hitchcock with Austin and then went to bed.
I slept a lot better last night, but for the second night in a row I had the night sweats. My hair was even wet.
This morning when I woke up, my back was hurting again. : / I have just been taking ibuprofen off and on and practically bathing in Sombra.
In non-complaining news… This morning, we signed papers to refinance our house! We got a super low rate, it is definitely the time to be buying or refinancing.
Afterwards, we came home and I became a sewing machine! I sewed a little bow tie for my nephew to wear as the ring bearer in our wedding. I also have been working on sewing cloth napkins (again for our wedding) and finished another 15 or so more. I had to get to work afterwards or I would have gotten more done.
I went to work, gave a few massages, then came home and did a bit more sewing. That is, until I ran out of thread! Time for a run to the craft store!
Tomorrow, I have work and then Austin and I have our Wednesday night dance lesson. Time for bed now!
I’ve had a very long weekend. Which is why I haven’t been around here much. We have 7 weeks until the wedding and my life is already feeling a little crazy!
Yesterday morning, my sister, Marie came into town from St. Louis for a short trip. Marie and I ran to a few stores to pick up some things to do some wedding projects and then met my mom for lunch.
Afterwards, we came back to my house and made an awesome surprise for the wedding ceremony decor. It took us quite awhile to make, but it was pretty fun to work with them and get it done! We spent time talking and just relaxing. Fun!
Then it was time for my first dress alterations appointment! I was really very nervous. I had ordered my dress not too long after Austin and I were engaged last February. It came in that July, and I went and tried it on. It fit, but it wasn’t pretty. It was quite tight across the tummy and I just knew I had a little work to do.
Yesterday it was too big! At least in the bust and the waist. So I know my hard work the past couple of weeks or so has paid off! The seamstress will take it in and I have my next appointment in a few weeks. I’ve been told not to lose any more weight though. But I WILL continue to try and tone up. Especially my arms. Eek. But, I felt MUCH more comfortable in it, and left the appointment feeling relieved.
Austin met us for dinner at a Mexican restaurant where I ate way too much chips and salsa! Dad got into town not too long before we were finishing up at the restaurant and he met us there for a few minutes. It was nice to relax, sit and talk. I really do love spending time with my family.
We split up from Mom and Dad. Austin, Marie and I stopped at the store and got ice cream (bad) and wine (badder). We came back to our house and watched a movie and went to bed pretty early. Apparently crafting, trying on dresses and eating a lot tired me out!
Today, we went out for breakfast (more eating out, do you detect a theme here?) and then said goodbye to Marie as she headed home. Austin and I picked up the pups and headed out to my parent’s house to help work on the space where we will be having the ceremony and reception on their land.
We spent a few hours out there helping to cut down a couple trees, clear some brush and clean up fallen limbs. My sister and her family were out too, so we had fun working altogether. Our dogs ran around like crazy and tired themselves out (just how we love them). I was also really exhausted. I think my blood pressure was super low too because I felt pretty woozy and dizzy whenever I tried to bend over and then stand up straight again. Bleh. I am tired tonight, but feel better now.
After a few hours work we stopped and headed back up to the house for steaks, salad and baked sweet potatoes for dinner. It was super yum. And then, of course… More ice cream!
We stayed for a little while just talking afterwards, and then headed home before we got too tired to make the hour drive back.
It’s been a long, awesome weekend, and I’m sad it is over. We only have 55 (almost 54) days til the wedding and I know that this time is going to go by so fast, so I am really trying to cherish it now. It has been exciting and fun so far!
Off to bed! Work tomorrow!
Today’s Prompt: If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?
Everything is going to be alright. I promise. You are relieved to have a diagnosis, because you have known for awhile now that something is wrong, but at the same time… you didn’t want it to be lupus.
I know it seems like everything is coming at you very fast. Don’t be afraid to ask questions, and to make sure you receive the help you need. Don’t be afraid to ask for support from the people closest to you.
Don’t be afraid.
This diagnosis is not the end. This flare is not the end. Stay positive, keep your chin up. You are strong.
This is for today’s Erin, too.
Patients, what advice or tips do you have for caregivers?
My fiance and my mom. They are the two people I turn to most when I’m having lupus issues. My fiance more than my mom because he sees me every day. He sees me at my worst. I try to make sure he sees me at my best, too. He has been an awesome support and is so patient with me.
Are you a lupus caregiver? Here is what I think is important for you to know:
- Make yourself #1. Take care of yourself first. Take a break if needed before you get burnt out. Take a break before you get feel frustrated or impatient. Those are both good signs that you are doing too much.
- It may take some time to find the right balance of care and giving space. Try not to be frustrated with the Lupie, or yourself.
- Learn as much about lupus as you can. When your Lupie is first diagnosed it can be a very emotional time. Do some research on what emotional effects they may be feeling, and how you can help them to deal. Knowledge of the disease itself is also invaluable. You will know more of what to expect. Being knowledgeable and asking questions shows you care, and that can mean everything.
- Try to find out all the aspects of the care they need day to day, and just keep it filed away in the back of your head. They may not need much help now, but it doesn’t take long for lupus symptoms and the need for more involved treatment to change. If they go into a flare, they may need you to get the right medication for them, help them with an injection or with some other aspect of their care. It is always better to know ahead of time how to do what they need, rather than learn on the fly!
- Remember to not always try to fix, but always listen. Sometimes we just need an ear to hear.
Thank you for being a caregiver. It takes a special heart.
What advice do you have for caregivers of people with chronic health issues?
I decided to forgo the prompt for today’s HAWMC entry. Instead I wanted to update my blog on what I have been doing to lose some weight!
- Eating between 1200-1700 calories/day. I am trying to keep my calorie deficit around 1,000 calories. My goal is to burn 2,600 calories or more per day,
- Trying (my best) to EAT REAL FOOD. This is definitely something I need to be a little stricter about. I think I would see better results!
- Walking or doing 30DS at least every other day.
- Sleeping. A lot. Or at least as much as I can.
- Drinking around 80 oz of water per day. I sweat a lot. My skin has been looking really great because of drinking more water and less tea and soda. In fact, I haven’t had a Diet Coke in over a month! That is huge for me!!
This was Saturday. I ended up filling in at work, and had a really busy day! I didn’t even exercise this day… My calorie deficit wasn’t huge, but I moved a LOT!
I have been feeling pretty good. I think the good food and lots o’ sleep have a lot to do with it.
I had an appointment with my rheumatologist last Friday. Bloodwork wasn’t GOOD, but it wasn’t TERRIBLE. We talked about it, and I will see him again in six months if all keeps going well. I will continue to have bloodwork done every month or so. We discussed tapering down on my Prednisone, and I told him I would like to stay at the dose I am at at least until after the wedding. I don’t want to start to taper down and possibly go into a flare. Plus, I figure with the extra stress and everything we will have going on, it just isn’t the best time. When I see him again in six months we will discuss it again.
Anyway, I’m off to bed, hope you are having a healthy week!
It’s normally well-meaning friends and acquaintances.
“Why don’t you try exercising more?” “My friend told me about this supplement.” “Maybe you just need more vitamins.” “Have you ever tried changing what you eat?”
Believe me, I’ve tried just about everything. And I’m sure, if my rheumatologist knew about a miracle supplement/drug/diet he would most assuredly tell me about it.
It is hard sometimes for me not to get aggravated with people who I know are just trying to help. Sometimes I feel defensive. Do you not think I’ve tried everything to make myself better? I WANT to be better. I want to be free.
I have to tell myself that people mean well.