… and now this.

… and now this.

So, I rested up on Tuesday because I knew my week would be filled with Dr.’s visits. Which have now become a weekly thing for me, I swear. But, I have a couple other things I want to talk about tonight also… so lets just get this out of the way. Many of the people who follow my blog have immune issues, and since this blog started with the intent that I would also be sharing the struggles I have with Lupus, I want to give an update on my health. The pros and the cons.

An update on my chemo; Methotrexate:

“METHOTREXATE defined is a chemotherapy drug used to treat cancer including leukemia. This medicine can also be used to treat certain kinds of arthritis, and lupus” (For those of you who are new to my blog.)

I can’t tell you how much better I’m feeling since taking this. Although I am very weak, and usually spend the first couple days after injection in bed sleeping. I am literally experiencing more energy the rest of the week! My hair is getting thicker, my nails are appearing normal, I’m no longer throwing up all day long (since getting off the pill form), and I’m literally feeling much more like myself. At this point, my Rheumy is keeping me on my Steroids and Plaquenil, which really aggravates me. But she feels she needs to keep an eye on my blood test results to make sure that she’s seeing a difference with Chemo. Then she’ll start tapering me off them. My pain level must remain controlled while withdrawing from steroids too. Personally, if I continue needing these steroids for much longer I’m going to explode; in more ways than one.

For the first time in over two years, I’m feeling like I just may get my life back. I actually  feel like I could go into remission. As for now it sounds like I will be on chemo long-term, as  long as my kidneys or other internal organs aren’t being affected. I have high hopes for this, because after suffering for so long, I have a totally new outlook on life, and just how precious it is. I can’t wait to be able to “fully” enjoy it again.

So, off to my MD.s I went today for my lung check, and unfortunately my  lungs do not sound the healthiest at this time. Due to my wheezing, and heart palpitations, I was asked to run in for an x-ray after my biweekly blood-draw. Which I did, and I’m happy to say that they called me tonight and told me my lungs look great on the x-rays. However, they also set me up for a CT scan, and a PFT (Pulmonary Function Test). Yay Me. The CT shows things that an x-ray won’t. So, I’m praying HARD that those results come back GOOD. I also asked him while I was there for something to help me QUIT smoking once and for all! (see my blogpost from March 20, 2018 CRY).

I left his  office with renewed hope in this area, and ready to tackle yet another obstacle in my life. Hopefully, when I see my Rheumy next time I will proudly be able to tell her I have quit for GOOD. If I haven’t quit by then (August) than I may have to make up a reason not to go to my quarterly appointment. (I’m kidding, I will put on my big girl panties and suck it up, because I have to.) I also left his office with MORE medications, and this time they are for my lungs. Ugh.

For those of you who follow me, you know I hate taking medicine. You also know that I prided myself for not having to take many medications (as far as most Lupus patients are concerned). I can no longer say this. I’m on so many medications at the moment that I had to make extra room in my cupboard tonight (not medicine cabinet; they don’t fit). So here’s what I’m taking now, plus Flonase which isn’t pictured, since I just snorted some up my nose.

my meds

EXPLODING: I mentioned above that I would be exploding if I still have to be on steroids. In two ways to be exact. #1) I’ll be mad. I mean, I’ll be REALLY mad. #2) I will be exploding in my jeans. I mean sweats. I mean PJ pants (which is now what I wear the majority of the time). Honestly? I can only wear two pair of pants in my closet… and those were newly purchased. I can no longer fit in ANY of my old clothes. My once thin energetic body has turned fat and lethargic. Go me (insert eye-roll). I also can no longer exercise due to my lungs and heart palpitations. So, I’m praying once my lungs are in check, I’ll be able to handle walking. Never did I think walking would be my main source of exercise. Unbelievable. But I have to add that I’m forever thankful I have my limbs. And if marathon runners can compete with prosthetics, then I sure in heck can make myself walk, as long as I can breathe. ‘Please Lord, no COPD, emphysema (or worse).

So, now that I’ve caught you up on my current health issues, I want to do a shout out on my hair. If I’m going to complain tonight, then I might as well go all the way. Tomorrow, I’ll wake up to my normal “sunshiny” mood, so bear with me.

I’ve talked to you before about how I lost chunks of my hair, in different places. It was so attractive! (For those who don’t know me, you’ll find I can be sarcastic… sorry in advance.) Anyway, I lost chunks of hair on my sides (which were noticeable), and when this happened I tried to even out the spots with my husband’s hair clipper, but I had to put it down to a very low clipper size, because I didn’t want bald spots. It looked terrible, but I thought it would look better than a lopsided Mohawk. I actually had to color the sides in with powder to match the rest of my hair. It really didn’t take long for it to get long enough where it wasn’t noticeable. But in the meantime, I frequented hats… which I wear often anyway. I also lost chunks in different spots on the top of my head, but I was able to cover them with longer strands that I didn’t lose. Luckily, I like to do hair… so concealing it wasn’t a “huge” issue for me but growing it out has been a different story.

I went through periods where it wouldn’t lay right, etc. Oh well, it was still better than shaving my head altogether. I love my hair. I miss my hair.

I’m happy to say it’s growing. However, it’s going through its ugly stage. So not only am I gaining weight at a lightening speed (and this is with eating healthy), but I’m also going through my ugly duckling hair stage. I need a new wig that matches my new color: Grey. When my hair started growing in, it came back grey/white… mixed with my dirty blonde. I actually love the color and plan on keeping it healthy. No more dying it for this girl.

My new hair style will look like this… as long as it doesn’t fall out again.

blunt cut

I can’t tell you how much I used to spend on my hair because it should probably be added as the 8th deadly sin. I don’t know what the heck in my youth made me think that I needed to spend so much money at my favorite hair studio? I think it was because I truly believed I needed all those products. I also believed that my hairstylist was thee best, and that a cheaper haircut/stylist was a crime. How could a cheaper hairstylist give me the new looks I was going for? Then of course I needed all the hair gadgets (which is still a temptation for me, because I AM a woman after all).  But seriously? I have never found a shampoo I like as well as Pantene. All you women out there can gasp now, but I love the way it makes my hair feel.

As far as my hair stylist brain-washing me into thinking my hair would be full of buildup? I never had a problem with dying my hair; etc. in my past. Pantene works for my thick, hot mess of hair. So does “regular” hairspray (that I never used until I lost chunks of my hair and needed to hide them with strands of hair that never fell out). If you are afraid of build up? Use a little Red Mill baking soda, a little vinegar, and your fave essential oils (I like eucalptus). No more build up.

To grow my hair faster, I’ve been using Caster Oil (believe it or not). I massage my scalp with it every couple of weeks. Ok… it doesn’t have the best smell, but it works, and it absorbs quickly. It’s amazing!

For those of you who don’t believe me? Here’s a quote from Healthhoop:

  • “Castor oil is perfect for the growth of hair, nails and eyelashes. It is renowned for its rapid penetration.
  • It works on dry hair, lack of vitality, split and even brittle. It regenerates and rehydrates dry hair, damaged by permanent and discolorations. To do so, castor oil is applied as a shampoo or hair masks.
  • It is used to soften thick or frizzy hair.
  • You can mix castor oil with Shea butter and essential oils for the production of hair balms.”

I also mix it with coconut oil for when I want to do a longer treatment. I’ll let it set for a half hour or more while I’m watching TV.

My hair has grown so much since doing this, and I can’t wait for it to be shoulder length again. Hopefully it won’t take much longer… maybe by Fall?

Ok… so I said I needed to talk about a couple topics tonight. Which was my health update, and my hair. For all you men out there? I’m sorry. This post probably made you roll your eyes. IF you even finished reading it at all, LOL.

Oh! There’s one more tip that I wanted to share with all you women out there, and it’s something I’ve been doing since my mid-20’s. I can’t remember where I learned it, but I think it was from one of Marilu Henner’s books. Yikes, I hope I’m right. Don’t quote me.

And here it is: Buy a large bottle of hair conditioner (I use Pantene; shocker… I should get an endorsement for this post, lol). And use it as shaving cream. Why spend so much money on shaving cream every month? I know it’s not that expensive, but it adds up). I can promise you that you’ll love the results even more. It doesn’t dull your blades like an oil would, and it doesn’t cost as much as women’s shaving cream. My favorite part? It leaves your legs SO SOFT. It makes a world of difference. Actually you don’t even have to lotion your legs after your bath/shower, unless you want to. Personally I do, but only because I’m in the habit of using lotion. I hope you’ll try this tip, and I hope you’ll love it as much as I do.

Well, that’s it for tonight, or morning… however you want to look at it. I’m praying for anyone out there who is struggling, ill, or depressed, that you wake up tomorrow filled with joy and renewed hope.

Though youths grow weary and tired, And vigorous young men stumble badly, Yet those who wait for the LORD Will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary. Isiah 40: 30-31

As for me? Once I end this post I’ll be jotting down my blessings in my nightstand journal. It’s always a good habit before bed, and it will turn your life around when you do it as a daily/nightly ritual.

God bless each and every one of you!

Su

 

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