No news on the health front. 🙁 Still waiting on test results. Knock on wood…the bruising has been better this week. Headache is still pretty much the same though.
Had my eyes checked to rule out anything there. I had my yearly exam in April but it turns out since then my prescription has changed a ridiculous amount. I don’t know if the April exam was ‘wrong’ or if my eyes really changed that much in such a short amount of time but either way that has to be contributing to the headaches.
I had big cooking plans for the weekend but now Sister B is sick so we’ve had to cancel the anniversary meal again. Feel better, SB. 🙂 I’m planning on making the treat I had planned though so hopefully that’ll turn out blog worthy.
Mama B’s end of summer homemade ice-cream…with Fruity Pebbs of course. 🙂
The only good thing about all these doctor trips?…Gringo’s for lunch. 🙂
Friday thoughts…
🙂
Really I don’t have much else today. Hopefully I’ll have a good treat to share on Monday. 🙂
I really have no words for how frustrated I am with all this health stuff.
The new rheumatologist was a nightmare. I went in with 13 years worth of lab work / history. I mean I didn’t take in 1000’s of pages or anything but I had a very well compiled stack of labs that show the progress of my Lupus from the beginning. Before she would even address the stuff I went in for (the bruising and a headache issue) she wanted to run baseline stuff that’s been well established for 13 YEARS. It was crazy. I mean really lady, I’m clearly bleeding and you’re worried about baseline stuff?
I haven’t written about the headache here yet but she was equally dismissive about it and instead told me to see an neurologist. The one good thing she did do was actually have her staff set up that appointment and he was able to see me the very next day.
Good thing too because it turns out I have some small peripheral blood clots around the temple area of my head. It’s scary…I mean obviously any clotting is scary…but it’s not the ‘get to the ER right this second’ kinda scary.
I had my PT / INR done and it has now spiked to a dangerous level and will now have to see specialist number 3 this week…a cardiologist…on Friday to try to figure out what is going on.
A little bit of potential good news…if you can call it that…is that I think I might have an idea of what the bruising is. One of the best people I’ve ever known in my life 🙂 is a nurse at a major hospital and she showed my bruise pics to a vascular surgeon at her hospital and he told her it looks and sounds like something called Bateman’s Purpura. Vessel inflammation and damage from blood thinners which is also triggered by steroids. I’ve been on blood thinners for 14 years and on and off high dose steroids all year long. There’s nothing you can do about it. You just have to wait it out til it heals. I’m currently weaning off steroids so hopefully that will help some but there’s nothing I can do about the blood thinner. Gotta take it.
So anyway…that’s where things stand now.
Some food pics…
Chowder / Cheddar Bays / Crawfish. Yum.
Gruyere / Parm / Potato Gratin. Was just playing around with this one and tested it out on a single potato. Will definitely work on this again and share when I get it where I want it. It was good but needs…something.
Gotta take Papa B to the Dr tomorrow. Then Friday is my appointment with the cardiologist.
Hopefully next time we meet I’ll have some better news. 🙂
I took some baby steps back into the kitchen. Not gonna lie…it feels both good and daunting. I just have so little energy right now…I kinda run out half way thru whatever I’m doing.
First up…Brownies. 🙂
Those may or may not be actual licks…in the bowl. 😉
Next…Mexican Cornbread.
Quite possibly the best thing I’ve eaten in months.
Dorito Burgers
1/2 pound of 80 / 20 ground beef
2 big handfuls of Doritos crushed up
Couple sprinkles of Taco seasoning
Make shift press. Large soup can covered in foil.
Smothered in cheese, salsa and sour cream.
So delicious. I think we all could have just eaten a couple pans of cornbread and nothing else though…it was that good. 🙂
A batch of gluten – free pancakes for Mama B. I make her up a batch every couple weeks and she freezes them in individual servings so they’re ready to go.
Banana Pancakes
1 cup Cup4Cup gluten – free flour
1 tsp baking powder
1/4 tsp baking soda
1/4 tsp salt
dash of cinnamon
2 tbsp sugar
1 cup buttermilk
1 very ripe banana
Cup4Cup, I might not need you anymore but I still think you’re the very best gluten – free ingredient ever invented. 🙂
Not sure what’s on tap this week. I have my big appointment with the new rheumatologist today. Fingers crossed she can help me figure out what is going on with all the scary bruising. I just know she’s going to put me back on Methotrexate and I’m dreading it so much. I was on it before and it gave me the most horrific ulcer. But at this point I’ll do whatever I have to do to get better. I can’t take much more of this.
Everything in life is better with some Motown in the background so let’s have a little Motown Monday for luck. 🙂
I’m back. Two times in three days. Maybe this whole getting back to blogging thing is gonna stick this time. 🙂
I changed the theme of the blog. Y’all like? It’s simpler and should load more easily. I want to make a custom header but will have to research that.
Saw the hematologist yesterday. She didn’t find any answers for my bruising so now it’s up to the rhuematologist next week. I feel like I’m going crazy with all the waiting and wondering. The hematologist did say that I’m severely iron deficient…but not anemic. Apparently there’s a difference. She wants me to start iron infusions asap.
Today I did something else I haven’t done much of lately…cooking.
Pork meatballs + some fun shaped pasta + alfredo + garlic toast. I got the meatballs at the grocery store…in the fresh meat section and they were just ok. Not great and I won’t get them again. But the rest of the meal was pretty good. Not a bad way to jump back into more cooking. I also made Mama B some gluten – free cheddar bay biscuits since she hasn’t been feeling well and loves those things so much. While it turned out that I am not celiac…Mama B is…at the very least…gluten intolerant. When I started reintroducing regular wheat foods to the house she got sick. When she removed the wheat it went away. So I will still always do certain gluten – free staples around here. 🙂
I’ll leave ya with a silly thought for the day…Hope y’all had a good one. 🙂
So many things have happened since the last time we met.
Mostly bad. But not all. Hey, you. 😉
Let’s see…first, turns out that after a couple of years of believing I was celiac…and making all the required changes…I am indeed NOT celiac. I won’t waste time ranting or whining about the misdiagnosis but my PSA for today is…if you ever think you or esp your child might be celiac…get the biopsy. We relied on blood testing for my diagnosis (because of my blood thinner issue) but if I had to do it over again I’d definitely risk the bleeding for a biopsy. It’s crazy expensive…not to mention time consuming…to switch to a gluten-free life style. Better to be absolutely sure than to waste all that time / money / energy if you don’t need to do it.
After I found out about the misdiagnosis I eased back into regular eating. It went surprisingly well. My 3+ year iron struggle improved a lot. I guess because I was eating real bread / cereal / ect…stuff that is fortified with extra vitamins and minerals.
Then in July something horrible started happening.
****Gross Pic Warning****
First ‘blood spot’ showed up last month.
Then a few more.
Then worse.
And then today this grapefruit size ‘thing’ on my side.
I’m seeing a hematologist, a new rheumatologist and my normal dr. My regular Dr initially thought it was petechiae. Sent me to the hematologist who said it wasn’t petechiae but bruising. I haven’t bumped myself in any of these areas prior to these things showing up. I just don’t get it. I feel like I’m bleeding to death or something. It’s so scary. I can’t get into the rheumatologist until next Monday so I’m left here worried for days still. My iron has plummeted again but my blood thinner is barely in the required range (between 2 – 3) so it’s not high at all. If it was at least that might explain the weird bruising.
Have y’all seen anything like this before? What did it turn out to be?
Anyway…there’s a lot to catch up on but I’ll end here for now. I’m going to try to get back to blogging if for nothing else than to get stuff out of my head. Haven’t been doing much cooking…but I’m also wanting to try to get back into that for the same reason. The kitchen has always been my creative escape. I think I need that right now.
🙂
