Happy summer Friday – is there anything better!! Heading to the pool today but wishing it was the beach. You can never go wrong with a classic black suit and this one is super flattering and affordable. Being more aware of sun protection with this hat and sunnies and loads of sunscreen. Kimonos are so versatile -wearing this one on repeat since Florida. This bag is from Walmart – loving that it has a shoulder strap and handles. Hope everyone is enjoying this beautiful day!
Spent this weekend doing some updating to our front porch. I’m embarrassed to say there really hasn’t been anything on the porch since the holidays so it was time for a little sprucing up! We’ve always had a problem with people not seeing our house numbers (we just had little numbers by the garage) so we added these floating numbers from Home Depot and I love the way they look! Wreath and lanterns are from Michaels. Super easy and inexpensive to make the wreath – under $15 – just grab a grapevine wreath and some faux stems and you’re good to go.
Petittis Garden Center always has a great selection of plants and flowers.
Loving the layered rugs in front of the door. The doormat alone always looks so small and lonely so I added a contrasting rug underneath and this one is super cute with the fringe on the ends. Bee happy – what else is there to say! I can’t help but mention the shoes – the perfect bling for summer great with shorts, dresses and jeans -still wearing jeans in Cleveland in June 🙁
Still need a denim jacket in June!!! I was able to take it off early afternoon when the sun came out. Loving these Old Navy wide leg crops!! Wide leg crop pants are everywhere this spring in all sorts of fabrics and short girls can wear them too!! I’ve had this denim jacket for years from the Gap – never travel without it – works with everything shorts, pants , skirts and dresses. These flip flops are Old Navy too and a great basic since I refuse to put on regular shoes in June – I have them in multiple colors – a little dressier than a regular flip flop.
My platelets have been holding steady in the normal range. Normal counts are 150,000-400,000. People with chronic ITP can have counts between 50,000-80,000 and doctors are ok to keep a close eye on it supplementing with steroids and IVIG as needed. I’ve been getting blood tests every week and the latest one has my counts at 238,000!! Super exciting and now I only need to get blood tests every 2 weeks and if they continue to be normal the blood tests will become less frequent unless I see symptoms.
I’ve been doing the same things since mid April including no alcohol, no aspartame (artificial sweetener), trying to keep stress low and I’ve now switched to the taking 2 capsules of the papaya leaf supplements a day instead of the drinking the tea. The pills are stronger than the tea and much more convenient. I did have a big jump from 172,000 to 238,000 maybe because the pills are stronger. I can’t really be sure anything that I’m doing is really helping considering the I in ITP is idiopathic (no known cause) but I’d like to think it is – no reason to believe it’s not – right?
I’ve really been feeling great and can’t thank everyone enough who has called, texted and kept up with my progress it’s really meant more than I can say. I’m praying that I can stay on this path and really get back to normal life soon. This weekend I may try a glass of wine and see how that effects anything since I have a blood test coming up next Thursday. Keep you posted!!
We were looking forward to getting away for spring break this year and decided to try somewhere completely new – Santa Rosa Beach in the Florida panhandle. I was trying not to get excited with my health issues even though my doctor never really said she didn’t think I would be able to go. She scheduled me for another blood test at the beginning of the week just in case my levels dropped and I need to get another IVIG infusion. They did drop so I had another two days of infusions just like before. At this point I had to try to do something. My doctor was talking about next steps which included a different type of infusion called Rituxan and in the worst case scenario if we couldn’t get anything to work a splenectomy (removing the spleen).
So I did what I didn’t want to do – I started googling. The four things I found were no alcohol, no artificial sweetener aspartame, drink papaya leaf tea, and reduce stress and anxiety. I had done dry January without a big problem, so even though I LOVE my wine this was doable. The aspartame really struck a chord with me because one thing I’ve definitely changed in the last six months was drinking diet coke which I hadn’t really done in years. I went on Amazon and ordered papaya leaf tea which literally said for blood platelet health on the box. Reducing stress and anxiety was mostly taken care of with no job.
I got two more infusions, packed my papaya leaf tea in my bag and off we went.
I’m definitely not paleo all the time, but I do try to limit carbs especially in things like baked goods whenever I can. I found this recipe on paleogrubs.com and thought it was definitely worth a try.
- 2 bananas, small ripe (small is important or your bread will be too moist)
- 1 cup blueberries, fresh
- 1 lemon
- 1/4 cup honey
- 1/4 cup coconut oil (missing from photo)
- 2 tbsp almond milk
- 3 eggs
- 2 cups almond flour
- 1 1/2 tsp baking soda
- 2 1/2 tbsp coconut flour
- Preheat oven to 350F
- Line an 8×4 inch loaf pan with parchment paper and set aside
- In a bowl, combine the almond flour, coconut flour and baking soda. Set aside
- In another bowl combine the eggs, almond milk, honey, coconut oil, mashed bananas and lemon zest
- Pour the wet mixture into the dry and stir to combine
- Gently fold in the blueberries
- Pour the batter into the prepared loaf pan
- Bake for 25 minutes until the top is golden brown, then tent with foil and bake for another 25-30 minutes or until a toothpick inserted in the center comes out clean
- Remove from the oven and allow to cool completely before cutting
I stayed in the hospital for 3 days until my platelets were above 20,000 and I could be released. It was a long 3 days – I don’t want to complain because there are people who are hospitalized for a long time- but it was a long 3 days. There really wasn’t much they were doing for me besides keeping me on steroids since this is the first way to treat ITP to get the platelet count to go up.
When I was ready to get released I asked both my hematologist and another doctor that was checking on me – ” What should I do – What should I not do?” Both said there wasn’t anything to do or not to do since there is not cause for this – “ideopathic”. All this time I’ve been trying very hard to not google or research what was going on because we all know how that never ends well. Googling any symptoms always ends up the worst way – cancer- death. So that’s what I did – went about everyday life just as before. Went back to work, had my nightly glass (or 2) of wine and figured my platelets would keep going up. The whole thing with this is – I never felt bad- I was working out, living life and never felt sick. I was released on Friday and worked all weekend with my next blood test scheduled for Tuesday. Tuesday morning I went to get my blood tested and then to work. A few hours later in the afternoon my phone started blowing up and I could see it was the hospital and figured this probably wasn’t good. I was surprised to hear my platelet level plummeted to below 2,000. They wanted to admit me into the hospital again but I convinced them I would go straight home, wrap myself in bubble wrap and not do anything. They scheduled me to get what is called IVIG which is an infusion of globulins the next day.
The next day I went to the hospital to get an infusion took about 4 hours and then the day after the same thing. These globulins are supposed to bond to the ones you have and build up your system. It worked my levels went up so that was good news. So, then again, I went about life.
There are two kinds of people – the kind that go to the doctor and the kind that DON’T. I definitely fall into the second group. I’m very responsible when it comes to my annual mammogram and gynecologist appointments but other than that I avoid the doctor at any cost. I feel that if I let something go long enough it will self correct and everything will be fine. I’m lucky that I really don’t get sick. I had a physical at age 40 and another one right before turning 50, but that’s it.
And then…It all started with me getting alot of significant bruising for no apparent reason. I explained this by saying I was working out and I can be a little clumsy. I got a large bruise on my chest and I just thought I must have bumped myself at work or something. At this point my husband said ” you need to make a doctor’s appointment.” I continued to ignore all of this going about my normal routine. I woke up in the middle of the night and needed to blow my nose and it was bleeding – not just a little but pretty significantly. I’ve never had a nose bleed in my life. At this point I though maybe I should make an appointment so I scheduled one in the next week. A few days later I came home from work and noticed little red dots on the top of my hands and my feet – not raised like a rash but as if someone had taken a red pen and dotted it on my skin. I walked downstairs and said to Paul “something is wrong, really wrong. I need to go to the emergency room now. I had my doctors appointment scheduled for two day from now but nothing was stopping me – I was going to the ER.
W e got to the ER and I explained everything that had been going on and they took blood and started testing. We waited and I expected them to come back with something like anemia and we’d be on our way. Instead, they came back to take more blood and said they were retesting for some things. At this point it’s taking very long and I’m starting to get very scared. “Re-testing to me meant checking for something serious.”
Finally a doctor came in and said they believed I had ITP – ideopathic thrombocytopenia purpura which causes your blood platelets to drop. My platelets were below 2000- normal platelet counts are around 150,000. They explained they had never seen anyone with platelets so low and they were admitting me into the hospital.
WAIT—– WHAT??? I couldn’t wrap my brain around this. So I said ” I’ll go home and come back tomorrow morning.” The doctor looked at me and said ” no you’ll need to stay here in the hospital and you can’t brush your teeth, floss and if you cut yourself or fall you need to press the emergency button immediately.
And then she looked at me and said something that changed my life…..”It’s ok, you’re going to be ok, you don’t have cancer.