EVERYDAYLIVINGLUPUS

When I first got diagnosed with Lupus I had shortness of breathe, my joints were aching, my legs and feet were super swollen, I had protein leaking in my urine, I had super sharp chest pains, there was fluid around my lungs, I was anemic, I was sensitive to the sun, etc. So, finding the right medications that worked for me was a long journey. There was a lot of trial and error when it came to my medications. Trying this,  removing this, increasing/decreasing dosages, etc. 

They told me the most common medication for patients with lupus was plaquenil and prednisone and that was what I was going to try first. If I got better, this was also going to be another confirmation that I indeed had lupus. So, I was started on 200mg of plaquenil and 30 mg of prednisone daily. Luckily I could see a difference in a matter of days. My legs and feet were no longer swollen and I could actually fit into my own shoes. I stayed on this combination for about 3 months until I had tapered down my prednisone. My vitamin D levels were also low so I took 2 vitamin D capsules once a week. 

By the end of the 3 months, my legs and feet never became swollen again and my joints weren't hurting anymore. I still had shortness of breathe and the sharp chest pains were still there. But, they weren't as severe. My blood work still was abnormal and my urine still had protein leaking so my rheumatologists added on cellcept along with my 200mg of plaquenil. I started off with 500mg and eventually increased to 2000mg of cellcept.

During this time, I also got pneumonia and was hospitalized so my rheumatologists told me to stop the cellcept only until I was discharged and done with my antibiotics. The fluid around my lungs had increased and on my CT scans there was fluid also around my heart. I restarted cellcept at 1000mg,  prednisone at 60mg and plaquenil at 200mg. 

The prednisone really seemed to help because on my next CT scan 3 months later I was showing improvement. But, protein was still leaking so my nephrologists added on losartan at 25 mg. They also increased my cellcept dosage back to 2000mg. So, at one point I was taking 14 pills a day. I had to get them in pill organizers or else I would just forget.

Eventually I was able to wean of prednisone completely. I then just needed to take 200mg of plaquenil, 25 mg of losartan and 2000mg of cellcept daily along with 1 capsule of vitamin D once a week. I no longer had protein leaking in my urine, no longer felt any joint pain, no shortness of breathe, etc. But, my labs were still not normal. I also still feel very tired from time to time, I'm still super senstitive to the sun and brain fog is just the worse. My rheumatologists explained that I had pretty much plateaued and this I guess was "my" normal.

Since I had been consistent with my meds and my test results were considered "my" normal, I asked my doctor about the possibility of stopping cellcept and losartan.  I was diagnosed with lupus when I was 27 and I am now 31. I plan on having a family of my and I rather it be sooner than later. Cellcept and losartan are a big NO if planning to get pregnant or if pregnant. So, I decided this was the best time to discuss my options. I got the OK to start tapering down and my doctors have been monitoring me carefully. But, so far still no protein which is what they are really concerened about. I am hoping to completely stop cellcept and losartan. But, if there are signs of protein or if my labs go above "my" normal, imuran will be added. 

 Its been a roller coaster ride since my diagnosis. But, I am really thankful of how far I have come. 

XOXO,

Geri   

I know with chronic illness it's sometimes really hard to think too far ahead about our future. Especially when we worry about our lives daily. Did I remember to take my meds today? What am I having for lunch? What's my age again? There are also days when we are just too tired that we can barely get out of bed and shower. Some days we are jetting to multiple doctors appointments,  doing more lab work, more scans, more infusions, etc. Then there are those dreaded times when we get hospitalized and it feels like forever until we get to go home. Our everyday is not the norm and we continue to battle through it because we are warriors.  But, as much as I am focusing on today, I also want to focus on my future.

Taking care and investing in myself mentally, physically and financially is something that we all must do! I know my page is mainly to promote chronic illness/ my lupus experience, but I truly was curious and decided to create a poll whether people did any investing whether it be crypto, stocks, themselves or nothing at all. The majority was NO and those that said yes either said themselves or in stocks. It's not something that is taught in school and with everything going on in our daily lives its probably not going to be a priority to research and learn.

But, I just want to put some numbers into perspective. Imagine investing $50 a month for 20 years at an average rate of return of 8% you would have approx $29k. If you left that in the bank you would only have $12k.  If you invested the same amount for 30 years you would have approx $71k. If you left that in the bank you would only have $18k.

Now, imagine investing $500 a month for 20 years at an average rate of return of 8% you would have approx $205k. If you left that in the bank you would only have $120k. If you invested the same amount for 30 years you would have approx $704k. If you left that in the bank you would only have $180k. 

What a difference investing makes and the amount of time you are in the market. The younger you are the more time you have for your money to grow! We have to make our money work for us and the only way is if we invest some of it. Picking good index funds and the power of compounding interest will slowly but surely increase our wealth. I suggest opening a fidelity account and investing into FXAIX, FNILX, FSPGX, etc. 

For those who are a bit riskier and want to invest in stocks like Apple, Tesla, Microsoft, Nio, etc or crypto like bitcoin, ethereum, algo, etc you can click on the link below. Bigger the risk, bigger the reward they say. But, sometimes you can crash and burn easily with these stocks. But, overall, time in the market is what is most important. Sometimes you get lucky and can day trade a deal and get profit within a few days. Sometimes it takes months or even years.  Imagine buying a stock of tesla in 2019, when it was $69. Today tesla is worth $738.85. So, imagine owning 10 stocks and you held it through. Your initial investment of $690 grew to $7388 which equals approx $6698 in profit. Imagine if that stock grew to $1000 or $2000 in 10 years. You would be making double, triple, etc. But, remember to always do your own research when picking stocks. 

Click here to Join Webull to start buying stocks. If you deposit $100, you'll get 2 random free stock and so will I. 

Click here to Join Coinbase to start buying crypto. If you buy $100 of crypto, you'll get $10 of bitcoin for free and so will I.  

If this is something not feasible for yourself, please pass this info onto your parents, siblings, spouses, friends. We really need to start investing and thinking about our future and doing more research on this. Saving all our money in the bank is not going to do us anything with interest rates at .001%. That's merely pocket change. In my next posts, I'll discuss why I stopped saving my money in big banks like Chase, Bank of America, Wells Fargo, etc.

If you would like to learn more, please comment below. 

XOXO,

Geri

I promised myself that I was going to blog in regular intervals, but its def so hard. These past few weeks I have been feeling extra tired, sluggish and just feeling blah. Then there are other days where I have bursts of energy and feel like I can run a marathon. Lupus does wonders to the body. I also have been trying to taper off cellcept and eventually switch to imuran so I can be in the clear and start planning for a family. My rheumatologist said that probably plays a reason as to why I'm feeling like that. He said my body is just trying to adjust.

With Covid, everyday also just sorta feels the same. I think that's another reason why I have been feeling like this. I've been working from home ever since March 2020. 5 days a week 9-5pm and then on the weekends I rarely go out. I haven't seen any of my friends in real life. I haven't seen family members besides my parents and fiance who I live with it. Its just really daunting to think that its going be like this for awhile. I miss the outside world and actually living life. It's easy to say don't let the virus control you, but when you already have lupus and lung issues its not that easy. So, I will take every precaution that I can.  

But, I really do want to try and be consistent. I really need to motivate myself and look to the future. One of the reasons why I wanted to start a blog was to just tell my story and hope to help others. I remember when I first got diagnosed, I did a lot of reading. I joined multiple facebook groups, surprisingly was not into instagram back then. But, social media has def changed since 2017. 

So here's to more blog posts to the future!! If you want me to write about any specific topics please comment below or send me a message on instagram.

XOXO,

Geri 

I can't believe it's already mid December and the holiday season is here. I've been meaning to post this awhile back, but I just couldn't find the energy. But, better late than never.  When deciding on gifts for those with chronic illness, it can be even trickier. I've compiled my top 10 picks that are perfect for the holiday or even any occasion. I've linked Amazon's best seller for each product for easy access but you can google and find these in so many places. 

1. Heated Throw Blanket

If you know anyone that gets super cold, this is the gift for them. A heated throw blanket is just the thing to keep them nice and warm. There are 3 settings so you can control how warm the blanket gets. If you are like me and tend to forget things, this thing also has an automatic 3 hr timer that will shut off. Plus this is machine washable and dryer safe and comes in a few colors.

2. Electric Bathroom Scrubber

I don't know anyone that likes cleaning the bathroom, but we all need to do it. With this tool, you have an extendable scrubber with three different brushes. Just apply your regular cleaner and start scrubbing away. This is extremely handy and cuts the job in half. No more having to bend down and use all your might. This tool does it all. 

I know when I want to destress or just have my home smelling good, I will light a candle. There is just something about the aroma that makes me so calm and serene. There are so many scents to choose from that you will have a hard time just picking out the right scent.

This gift is for the tea lovers out there. 48 different kinds of tea for them to sample. It's a perfect way for them to taste new flavors and see which one they really like before investing in a whole box. It can also be packaged in a decorative box to make it even more fancy.

We get tired really tired easily, our joints hurt and all we want to do is relax. A bath and body gift set is the perfect way to end the night. This bath set includes everything you need for an ultimate home spa experience. Includes bubble bath, shower gel, body lotion, bath salt and shaped sponge wrapped together in a reusable bath tub.

I'm usually not the best at keeping up with these journals. I usually have so many blank pages in between or I stop midway and never end up finishing. But, every time I do look back on the posts that I did do, it always brings back so many memories and nostalgia. You can pick any journal or even a blank journal just to jot down random thoughts. 

Sometimes is nice to hear other people's experiences and stories. It's something that is relatable and makes you feel not so alone. I like reading and sharing my stories because it really can make a difference in someone's life.

Whether its netflix, amazon prime, disney plus, etc this is a great gift to give. There is endless amounts of tv shows and movies that can be watched. I love watching old movies and shows and reliving my child. Ahh, the simple days.  

What do you get the person who has everything...cash or giftcards. This is the simplest solution. Let them choose what they want to get it. 

10. A Spoonful of Strength

I saw this and just had to add this onto the list. No explanation needed for all my SPOONIES out there.

I'm the type of person who shops way in advance and likes to get it out of the way. But, there are some people I know who wait super last minute. Which one are you?

XOXO,

Geri